Hello fellow friends, My attack of VN occurred in November 2016, which resulted me spending 7 days in hospital. I had 2 Cat scans, an MRI, ECG, Echocardigam... etc..etc. Ive Suffered with all sorts of symptoms for about 7 months. Swaying, bouncing, blurred vision,dizziness, headaches, anxiety, panic attacks, neckaches, bright lights, sensitivity to all sorts of physical and emotional feelings, etc.. My message to all is YOU WILL RECOVER. You have to ACCEPT , and I mean fully accept all these strange feelings, it will be difficult but you can do it, your body has temporarily gone into a state of sensitization, don't shrink away from them. They are all part of your recovery. Your mind, vestibular, occular system and body joints have to be all retrained, so the most important thing is DO NOT sit around waiting for recovery. You HAVE to keep MOVING,be physically ACTIVE, Your brain will automatically carry out a process called COMPENSATION while you are active. DONT avoid situations (shopping....) or anything that makes you dizzy or brings on unpleasant symptoms ,these are the places that recovery lies. You will probably have to stop driving or operating dangerous machinery for a few months, confidence WILL return. Carry on living your life to the full and let TIME PASS, however long it may take,. The other thing to get checked Is or BPPV, I ended up with bilateral BPPV, this was resolved over a few sessions, 5 minutes per session. BPPV will affect your recovery from VN.
Hi Amar, thank you for your post. Did you get diagnosed with bbpv at an ENT clinic? Is the treatment for bbpv similar to VN such that it involves doing lots of rehab exercises? Many thanks
@@SharonHen Hi Sharon! I have this condition called vestibular migraine as diagnosed by my neurologist. Please let me know if these exercises are going to help me with my condition as well. I have dizziness, balance issues while walking especially when I'm out. Ringing in my ears as well.
Hi Sharon. So glad I found your videos. I am week 8 of severe vertigo due to VN. 9 weeks ago I was a healthy active woman. Reading your post and watching your videos gives me hope. I am a nurse practitioner and have a very active life. I have seen a great MD and have been doing VT for 7 weeks. Can not wait until I get my old self back
Thank you for posting this video! It was 100% helpful and 100% effective to treat vertigo. Wow! It took about 2 weeks of Vestibular Rehab exercises. " Really did the trick!
Can't overstate how glad i am to have stumbled onto your videos. Very uplifting. About 3 months in for me. Been an incredibly scary and dark time to say the least, but staying hopeful and positive. Prayers and good luck to all watching this. It can be beat!
Hello Sharon, thanks so much for helping! Your exercises help me to overcome vertigo years ago, and now I am sharing your video with a person that also needs help. Very best to you!
Hello, can I just say how happy I am that I came across this video?! I am coming upon the 3 month mark that I have been dealing with this, well let's call it intrusive CRAP. I woke up an early August morning with the room spinning. Waited over the weekend (I only spun on my right side lying down, so already was doing my own detective work) and went to the GP. My BP is what got him most concerned. He told me I had BPPV and told me to look up the exercises. Yep, I did the Epley maneuver and was successful. HOWEVER, I was left with what I called leftover dizziness. It was more like swaying or lightheaded or occasional not feeling "quite there". But, the GP was too hung up on my BP which was like 140s over 90. I had never had high blood pressure before and figured it was because I was panicked all the time because of not feeling right (why my family doctor couldn't follow this logic is beyond me). So the whole month of September and up and including now I have been on HBP meds, which, guess the side effect, is dizziness and fatigue! JOY! I keep cutting it in half, even when he lowers the dose. I actually went to my gyno to rule out any kind of menopause issue (I'm 46) and SHE was the one who referred me to an ENT and a Neurologist (and no, I am not menopausal). Thus far I have seen the ENT and will see the Neurologist at the end of the month. The ENT said I had vestibular neuritis and that right now I am in the compensation phase. He provided me with a list of exercises and while I was researching exercises I found this video! YES! SCORE! (Might I add that the ENT in so many words, said the BP meds were playing with me, I drag all day and feel like poop, then by late afternoon feel more like myself. It is then and only then when I can tell how I am progressing). So tomorrow I go to another referral, the one and only one from my GP which is the cardiologist. I am hoping I can talk sense into this person, because I am of the feeling I do not need these meds. The BP meds just complicate things. I can tell I am doing better, I am not great on some days but still MUCH MUCH better than the beginning. Sorry so wordy, but that is how I am and I feel as though I have made a connection. A great, positive, joyous connection! I am so glad I found a ray of sunshine like yourself. When you say I WILL get better, I believe it. I need that. We all do. Thank you for saying it over and over again to all of us. I needed to put my mind in a good place and feel CONFIDENT about it. And if you believe it, only good things will come. Thank you so much for being such a POSITIVE force.
You are my new best friend! You literally sound just like me, but my son since birth who is now a teen has lived with this his whole life. I truly believe this caused part of his learning disabilities and many other problems for him. I dont think he realized it because he has always had it. Even the bad vision in one eye! Your video is perfect. Thank you so much for taking the time. I can try to help myself because right now I am working with tons of specialists (money) to help him and of course I come last :)
Vestibular neuritis started 10 months ago after getting covid and a really bad sinutitis infection which lasted 18 months. I got a ct scan and it showed a badly infected tooth going into the sinus cavity. I had no pain or discomfort from the tooth. So the tooth was extracted and the sinutitis was finally gone. Sadly the Vestibular neuritis is still there and i use 2 walking sticks indoors and a wheelchair when outside. My children look after me. It is very scary and depressing and isolating. My heart goes out to anyone is going through this. I try to have hope and pray every day i will return to my old self...
I’m so sorry you are going through all of this. I’m learning so much about teeth and their connection to different parts of the body. I’ll keep you in my thoughts. Any journey with a vestibular disorder isn’t an easy one, and yours sounds particularly difficult
Thank you for posting this video. This has inspired me. I've been able to drive and work normally, since it seems the damage is split between mild swimmy dizziness and some serious tinnitus. It's been over two months, though, and this whole episode has been maddening. Gotta work hard.
I have had tinnitus since my initial event... about 2.5 years ago. I will say, my brain has somewhat habituated to the sound and I can go days without thinking about it. It doesn't bother me... but it's all relative. Keep going. My tinnitus was still bothersome at 2 months in. It's amazing what you can get used to with time.
hi david im in the same boat as you coming up on three months, lets commit to the therapy and rebuild those neural pathways! theres a lot of success stories but they all come with time and persistence.
Thank you for taking the time to make this video and share it with the youtube world! I have lupus, and in the last 6 years have issues after being on trains and boats. I have been on medications and thought I was doing better, but recently had a flare-up after a few hours on a boat. I am going to try your techniques! Thank you so much.
Valesia! I'm so hopeful for you. Good luck with the exercises. The main thing is to keep moving and keep calm. Anxiety and vestibular disorders go hand in hand, so hang in there and keep going. :)
i have this in some form too..v extreme when it happens but no concise diagnosis. no advice on therapy - yay for internet and the gift of sharing! thanks so much!!
Great post. , as of late I have been experiencing a bit of vertigo . I do have tinnitus in my left ear but no hearing loss . I remember doing similar exercises which I believe definitely help. Thank you for posting this video , great reminder for me .
Thank you for sharing. I have been having problems for a month now. When I had the first episode attack, I couldn't even open my eyes, get up or anything. My bed was the only place I was safe. Hospital did all the tests, MRI, CT scan, blood work, swabs, saw a neurologist a vertigo expert, went to see ENT, now physiotherapy. I can walk not not straight, vision is weird, moving too slow or quick is different, I feel taller, I get tired much quicker. Your approach is great and seems to help me so thank you!
Sharon Hen Did you experience ringing in one ear for a long period or time, if so how long? I was told it could last 6 months and that my hearing could be affected for up to a year (worse case scenario). Thanks again for your video it is really helping people. Its people like you that make a difference.
I still am 100% deaf and have a low ring in my right ear. The hearing loss is likely permanent for me, despite early steroid treatment. I've learned to tone out the ringing and hardly notice it anymore, but it is there all of the time. Sounds like the hummmm of bugs on a hot day... not a horrible sound really.
Sharon Hen 100%... wow. I had a hearing test done and they said that I had lost 20%, but that it should come back within 6 months to a year. I still have that ringing also, I'm getting use to it also. The ENT said that having been given Prednisone (steroids for 10 days within 2 days is what saved my ear) I was taking the maximum allowed here which is 12 x 50). I had my 1st appointment with physio and I have exactly the exercise you're mentioning.
Yes. I took my first steroid pill the same day as my hearing loss. 1/3 regain hearing completely, 1/3 regain some hearing, and 1/3 are perm. deaf. Honestly though, it really doesn't bother me. At first, I missed the stereo sound of music. I'm a runner, so listening to one ear bud felt a bit strange, but I can honestly say that nothing feels weird anymore. I don't even remember what stereo sounds like, so just a new normal now. No one would know I was deaf in my right ear unless I told them. I don't miss much... just the odd time in a busy loud environment. I'm SO excited you are starting physio!!!! It is the road to recovery!!! So excited for you. This illness is the worst and recovering from it is the absolute best feeling.
Anyone here in the depths of it, my attack was March of this year, worst spell lasted 8 weeks. After that I was very up and down. I was undiagnosed for the longest time and recovered using sheer will-power haha but it is possible. It really truly is. After 4 months I was back to work, didnt feel great but pushing myself back into regular activities brought me the fastest recovery. I'm only now getting onto vestibular exercises, but I'd say I'm 80-90% recovered just though blind faith and willpower without a diagnosis as it all happened during lockdown. You're gonna be fine! Don't give up x
Sharon, thank you so much for sharing this video. Feeling to similar after an attack of BPPV. My specialist appointment isn't for a couple of months. I have started to do some gaze stabilization and balance exercises and feel small improvements already. Bless your heart. Nice to feel not so alone.
Hi Guys! I think this channel is realy realy helpfull. You can see that you are not alone and there is a lot of people like you. Be proud of you that is the most important thing and don't give up!
Hi Sharon. I want to thank you so much for making these videos! They are an amazing help and encouragement! I am just so grateful to you. Very best from Denmark :-) Merete
I'm just starting with my exercise. I hope it works with me. I've had this vertigo for a year now. I don't wan't to suffer anymore since I already my conditions because back then I had no idea. Thank you for this! 💖
You are a beautiful inspiration. I have been suicidal and hopeless over this to be very blunt. I am jealous that you knew what was wrong with you and I don't have those answers but I am praying I will find them very soon. I can't believe they didn't offer me a steroid when I went to the ER. Now I'm very scared that the damage could be too bad. Also, is a steroid nasal spray something you have to have prescribed?
So sorry that you are in a hopeless spot. Know that many of us feel hopeless, but that it is a horrible illness that you WILL recover from. I didn't have answers right away. In fact, I was SO anxious and nervous in the beginning, when they were checking me for stroke, MS, Menieres, brain tumour, etc. I even had to start to talk to my kids about heaven... still brings tears to my eyes thinking about how I literally thought I might die. I still can't believe it happened to me. I went for a while without a diagnosis (waiting for an MRI, MRA, etc), but most of my symptoms suggested viral labs and when I joined the FB support groups at week 4, I met SO many people suffering with the same weird often strange symptoms (muscle weakness, numbness, weird heart rate, etc.). I think the BEST thing to do is to join a FB support group and it will prove that you are NOT alone. Someone today posted that they had been crying for 4 days and were contemplating things they should not be and they had 20+ responses in a few hours of people who have lived those moments. We are here to help!!! You are NOT alone!!!
STRAWBERRY FIELDS ! FORVER ! I WISH FOR YOU LIGHT AND BLESSINGS ALL THE DAYS OF YOUR BEAUTIFUL LIFE ! KEEP YOUR HEAD UP HIGH REACH FOR THE STARS ! GIVEN TO US BY THE GOD OF OUR FATHERS ! IDA
Thank you so much for posting this. My last few months have been absolutely terrifying and I still don’t really know what’s wrong after all sorts of mris, blood tests, etc. I haven’t been able to as much as get to the bus stop or buy my own lunch since this all started... I still feel as dizzy and weird as ever but I feel a bit more hopeful now at least.
Thanks for making this video. I have suffered a long time with vestibular neuritis. It was diagnosed as labrynthitis at first...anyway ive felt mostly the same since 2014. I haven't really had access to physical therapy due to insurance and money issues. I have some days where I feel ok but here lately its been bad again...I'm gonna start trying to be more consistent with these exercises. I can do pretty much anything now days without anxiety because I adopted the mindset of "all the weird sensations are from this illness nothing else!" But its still hard sometimes. I know it will get better I just have to find the time to actually do these excersises...how many times a day do you recommend doing them?
mon plaisir Martine. Keep moving and welcoming those dizzies. If we can train ourselves not to be afraid of getting a bit dizzy, we can calmly help our brains compensate. Good luck in your recovery
Hi Sharon. I have been in VRT for almost 3 months now. My symptoms have gotten better but just wanted to see if you experienced the same sensations/feelings as you recovered and healed. I am having more good days than bad but big weather changes seem to flare it up where I will feel just a little more of a sway sensation on bad days than usual. Also I am running at the gym on my treadmill for around 30 mins but after I get off I still feel a slight buzz sensation that takes a little while to wear off but not as bad as it used to be when I first had my vestibular event. I am moving and walking around my kitchen much faster now but morning time is still a little iffy because I start my day moving around quite a bit to fix everyones breakfast and I feel a little off balance and have that sensation but I push through it and it has gotten better the past couple months but SLOWLY. I still have a heightened sense of hearing awareness where loud noises bother me a little bit but not as much as before. Also different lighting and different locations still give me a different feeling but not as much as before. However, seems it just takes a long time for the sensations to gradually disappear. Does this sound right as far as how your recovery went? There is nothing that I can't do but now just waiting for the last of the sensations and feelings of slightly off to go away. Again, things have gotten better but it has been a gradual and slow process. Was this what it was like for you? Just really wanting to know details about your day to day feelings/sensations as you recovered. That will help me to know that I am on the right track!
Weather - absolutely affected me for quite a while, especially changes in barometric pressure. Treadmill - Excellent job first of all. My first time back on a treadmill was quite disorienting. I felt ok on it, but when I returned to solid ground, I felt like a floating blob of jello. Overall, you are correct. Recovery for many of us is painfully slow and symptoms seem to dissipate quite slowly. Setbacks are common and you have to prepare mentally for them in the first year and just know that whatever setbacks you have, they won't be as bad as day one/onset and that they will be short lived. Sounds like you are following my recovery path, only you are doing better at recovering faster :) I didn't make it back onto the treadmill until 5-6 months. I was running short distances outside, but that is all. Great job. Keep going.
I just subscribed! I am going through this too. I am going to follow these exercises along with the ones I was given to do from the hospital 😁 I am just super grateful that I don't have a brain tumour, which is what the doctors originally thought. xx
I haven’t had any problems for around 2.5 years, I’ve been really fit and healthy after my awful time- I had it for around 7 months. Now after a bout of food poisoning I’ve woken up with it, I’m so angry and depressed because I know how bad it was. It gave me severe anxiety and I swore I would try and do everything to not get it again. Well here I am…the worst day of my life. Time to start doing these exercises and getting back to normal AGAIN.
Thank you so much for your videos that I only found today! You're a ray of hope in what has been a horrendous few months of imbalance, dizziness, nausea and major anxiety! I have been referred by the ENT specialist to get VRT and am hoping it wont take ages for my appointment to get here. In the mean time I will practice your exercises to get myself started! I wanted to ask you, did your dizziness/spacey imbalanced feeling get worse when you started your exercises? If so how did you cope with that? and did you get bad nausea when you started them? I just want to be prepared because I really don't want to throw up! I was given Zofran too at the start of the illness, do you think I will need to take a Zofran before I start the exercises to prevent getting sick? Thanks again for everything! :)
Hi Ruby! Sorry that you've been hit with this, but I'm happy you found my video and I encourage you to join some of the FB support groups as well. They are a great wealth of information and there are people there who have tried many different things and I found myself scrolling back through old posts and gathering so much info and support. The vestibular hope FB page is a good one as is the labyrinthitis support group. There are even ENTs and VRTs on those groups who, for the most part, remain silent, but will chime in once and a while with their opinions. Now, to answer your questions, I DID find that the VRT made me feel quite awful in the beginning and also whenever she would start me on a new one. I didn't take anything beforehand, but in hindsight, it might be a good idea if you are still very nauseous. I broke out in full body sweats and couldn't drive home... but I was on day 3 of the illness... so still in the acute phase and still battling the virus, so don't be scared, this is unlikely to happen to you. I knew enough (I have a medical background), to know that getting dizzy was the ONLY way for me to re-train my brain to get better. You literally have to get all your dizzies out. So, when I got dizzy, it actually made me hopeful and sometimes I would even welcome those dizzies and try to push harder. Every one you live through is one less you'll have to live with. Keep this in mind when you start with your VRT. Welcome those dizzies!!!
Anxiety comes hand and hand with inner ear issues. Take comfort in knowing that what you are feeling is quite typical for someone with VN or labs and will pass as your symptoms lessen and especially after you get on a VRT program. Some believe that after the actual labyrinthitis passes, the anxiety will mimic the symptoms of dizziness and make you feel sick even when you are recovered. I have never before suffered anxiety, but had full on panic episodes during the first three weeks and some of these manifested physically as increased BP, rapid irregular heart rate... I was also hypersensitive to my symptoms. If my heart skipped a beat, I would freak out and spiral into a panic. I learned to "ignore" my physical symptoms more and it helped me control the anxiety. Maybe I'll do a video on the anxiety.
How do I go about getting someone to refer me to VRT? My ENT was awful and dismissive. Made me feel like anxiety was my problem. He said no one and nothing would help but time. My husband and mom were with me and could not believe how horrible he made me feel. I cried so hard when I left. 8m so happy 8 found this and ive requested to join your facebook page . 8m watching your excercises and I feel some HOPE!! IM NOT ALONE. I can not tell you how terrified I am. I dont understand what I did wrong. I want to beat this and retrain my body!! I hate weird medical stuff and I tried to get help and they went help me.
Hi Sharon, thank you so much for making these videos ! , Iam five months in with VN it's truly been the most scary and awful few months of my life , I've shed so many tears, Iam doing much better still having off days but my physiotherapist has been working with me to do my VRT , I do it every day 3x , it's been a life changer ,they still don't know if the damage in my left vestibular nerve is permanent or if Iam going to make a full recovery but considering I had to be taken to the bathroom at the beginning then had to use a walking cane for a few weeks Iam able to do most things I've even started to work out again and I can't believe I've been jogging on the spot! , Iam getting better in stores , but this damn rocking sensation is almost all the time, I've managed to get my anxiety under control thank god ! , Thank you so much on my dark days I watch your videos for hope , you have helped me more than my own Drs who are clueless about vestibular illnesses , many best wishes on your recovery love from Scotland !
Bjorn. Hi it's been a year now still have it , good days bad days but can do everything I was doing before I got ill , been diagnosed with pppd and vestibular migraine after my vestibular neuritis, trying to stay positive, hope you are well ? vrt was helpful in beginning.lyn
Hi Bjorn. Thank you , yes keep in touch , when I first got ill I had a lot of support but nobody that had been through the same as me , I will give you my email . lyn.forsyth76@gmail.com
Hi, I’d like to share my story...to preface this I’m 20 years old. This all started back in late July/early August, I went swimming at my cousin’s pool and I did a cannonball and as soon as I hit the water and went in both of my ears popped BADLY, and I noticed I haven’t been quite the same since. I’ve had sinusitis/strep throat/and two ear infections since. The dizziness has been consistent since August. At first it came and went but now about Two months in, I live with it everyday. I’m currently in college and I find it hard to focus at times, my brain feels clouded, I’m literally dizzy all the time, I feel like I have to squint my eyes and fix my sight, my ears hurt, and I have headaches a lot too. Sometimes it feels like I’m on a boat as well. I’ve gone to my general doctor and every time he just gives me amoxicillin and I take it but this ear pain and dizziness doesn’t go away. I’ve gone to an ENT and the first time he said it was something with my blood vessels and that I’ll be fine, but it has persisted and I went today and I’ll be getting a balance test in November. Vestibular Neuritis sounds like a possibility. I rule out Labrynthitis because I haven’t had any hearing loss. Feeling dizzy is one of my worst fears because of a childhood trauma...at this point I’m feeling somewhat hopeless. I’ve been praying every night, pleading with God to make me feel better. I’ll see what the test results say when I get the balance test done, but experiencing this is so scary, especially in the midst of an extremely busy college semester.
One Sunday night after having a great weekend and finishing up with bible study, I turned left into my bedroom and fell into the wall. I laid down , thinking the dizziness would subside and it got worse. I ran to the bathroom and vomited for hours. I couldn’t get off the floor. My husband finally got me to the hospital, where they did a cat scan, mri and took lots of blood. Two days later, still in the hospital not knowing what was going on. Finally on day 3, one neurologist came in and diagnosed my condition as a stroke😳. My blood pressure , cholesterol, and heart were all fine. The radiologist report stated all clear. I finally got them to release me from the hospital and followed up with my family doctor. He prescribed steroids, nose spray, and ondansetron for nausea. Things got better , but I still referred to myself as a wobble, who wobbles. The following week a met with a neurologist who diagnosed my condition as labyrinth, viral infection of the inner ear. He told me it would take about 3-6 weeks before I felt better. Today is the end of week 4 and I’m still wobbly with blurred vision. Bending over to put on my shoes, looking up and walking as I try to turn my head , are still challenging. Any suggestions on how to improve quicker? Do you sleep elevated? Are you taking allergy medication? This experience has been really challenging, many days I don’t want to get up. Has anyone seen a ENT and were they helpful?
Vestibular rehab therapist at a physio clinic would be a great spot to start. The trouble right now, with everything going on with covid 19 is that it will be challenging to get in to see one. Walk outside every day (keeping your distance from everyone except a love one to lean on, routine everything about your day that you can. Keep your activity level up and consistent. Go to the bed at the same time and get up and out of bed at the same time, avoiding naps if possible. Some rate their days (1-10) and make note of any accomplishments they make. Focus on your gains. Have belief in the brains ability to heal itself. Know the role anxiety and doubt play and that, for many, it can extremely limit how plastic your brain is and prolong the recovery. You aren’t alone. I was still very much a wobble when I was where you are. I’m fully recovered now. You’ve got this
I really admire you strength and way of coping ,it's been hard for me I cry every day ,it's fustrating and painful , how do you cope it don't even seem.like your in.pain
Pili. I had a VERY hard time over the first few months. I didn't dare make a video in that period as it would have been very depressing and might cause someone behind me in duration to lose hope. I want to assure you that I have been there, right where you are and I can only tell you that once you start to feel better, and once you realize that it will pass, well, it's hard not to feel VERY strong and smile all the time and be just so SO thankful. It's been months since I've felt dizzy, and I still wake up every morning feeling just so relieved to not be sick any longer. I still have my moments where I get frustrated with what happened, but they are short moments now. In the beginning, I had to get my parents (I'm 36) to come and basically babysit me. I couldn't even cook for myself. I had to send my three little ones to childcare (Imagine the guilt, not being able to care for your own children). So, these are the things I struggled with. It just didn't last. For most, the horrible feelings ease and you gradually get back to you. Hang in there. Recovery for many is painfully slow. The only thing you can do is to look to those who recovered and find support.
I'm so happy you'll soon be starting therapy. I started so early and I'm nearly 100% sure that's why I recovered "fast" compared to so many. You are on your way Pili.
I am also 36 also , my husband been taking care of when hisnot working ,also my parents so I couldn relate ,hopefully city can motivate myself and be strong will like you and get healthy again
You will Pili. You WILL get better. It's really great that you are 36. We are relatively young to be having this... and it is to our advantage. The key is to get the anxious feeling under control and to start believing you will get better. For me it helped to think about it like this... If I was still slowly getting better from day 1, then it would only make sense that each day that I moved about, my brain would continue to compensate and heal and that I would continue to improve. It only made sense that I would get better. It would be really strange for you to slowly get better then just stop improving. Keep moving and you'll keep compensating... things like shopping and driving and cooking and cleaning will become less scary the more you do them.
Hi Ms Sharon Hen, I am suffering through vertigo and I must say these exercises are really helping me to stay away from dizziness. Please tell me that is there any preferable time for these exercises? Waiting for your answer. Regards Akbar
So happy the exercises are helping you. For me, and many others I've spoken with, doing them in the mornings really seems to help. In the beginning, our compensation is so fragile, that I almost felt as though I decompensated while I was sleeping. I'd compensate throughout the day, go to bed semi-ok-ish (not really ok, but better than the morning) and wake up feeling awful. So, I felt like doing VRT within the first hour or two of waking up really helped me "reset" my brain and remind it that it had been damaged and needed to compensate. I also did them at lunch and in the evenings before bed.
I am so so happy Ive found you, I could cry! I'm 2 weeks in to labyrinthitis and have never been so scared of an illness before. I've been a GAD sufferer for a good 7 years and it's made my lab's seem worse! I know everyone has different time scales but, am i likely to still be in the acute stage? Should I be seeing improvements yet or do I need to battle on a bit longer? I honestly felt so alone but I feel like I have people to talk to who understand now ♥
Thanks Ann!!! I think, really, we are only limited by our imagination and the exercises are likely endless. Flopping on the couch made me feel weird, so I made it one of my VRT exercises, 3 x per day I'd flop on the couch. Eventually, I habitulated to the movement and now I'm flopping no problem ;) ha!
HI Sharon! Thank you so much for your videos. They are really inspiring. I have lost all my hopes! I have Vestibular Hypo function, so basically my right inner ear is damaged and I had this for 7 months. I am starting VRT in two weeks but would like to do some of these exercises as soon as I can to try and feel better sooner and compensate. You do a number of different exercises in this video, for how long roughly should each exercise be done? Thanks!
You and I likely got sick at about the same time. I fell ill on sunday june 12th, 2017... so nearing the 7 month mark. I think that starting VRT was the key to my earlier recovery. I began on day 3. So, don't lose hope... I think you just haven't quite started on the official road to recovery. The length and duration of the exercises depends on how dizzy they make you. In the beginning, for someone in the acute phase... in the first 3ish weeks, I would say to just try one of the simple standing with your eyes open and closed for 20 seconds at the time about 3 times per day. For someone like you who has had some time under their belt, I would see which of the exercises makes you the most dizzy and work on those. Start with 2 or 3 exercises and see how you feel... three reps of each. For me, looking up and down made me feel GROSS in the beginning, so I made sure to do that one every day, a few times a day. I usually do three reps of each exercise, but in the beginning, I started with the standing ones with my eyes closed and open feet tandem or heels together. I think, even if we don't realize, anxiety can play a role after a few months. We need to face our fears of doing things that make us dizzy. Trying to live a normal life is key to recovery. The more you do, the more hope you will have that you will get this behind you. I hope I can give you hope... I have vestibular hypo function as well on the right side and damage was VERY extensive... it took all my hearing, numbed my face and damaged those little hairs in the inner ear causing BPPV. I was a "bad" case and here I am recovered. Join the FB groups: vestibular hope and labyrinthitis support group. There are physio and ENTs on the site and over 1000 people recovered and not recovered, struggling and thriving.
I can't wait to hear how the VRT goes over the next few weeks. Make sure you ask your physio to check for visual vertigo as well as balance issues. I know some who had physiotherapists who only worked on balance and didn't address their visual issues. Hang in there... for many, it will make you feel awful for the first few visits/weeks, and might cause you to become discouraged, but don't lose hope. I have heard it time after time, those saying "I almost gave up VRT because it made me feel worse, but I'm so happy I didn't". Hang in there and if you remember, post an update on how it is going. I'll be thinking about you.
I'm so glad I found your video and one from a lecture concerning vestibular migraine. I won't go in to detail for the sake of being wordy. At work on June 22, 2017 I experienced dizziness first, 30 min later assisted to the rest room I experienced very violent vertigo. I noticed in the ER, for 9 hours, there were moments I could sit up and begged to quickly have the bed's head area lowered. I was admitted, then twelve hous later I had double vision except for looking right. Fast forward to three days after release I began researching. My primary doctor wasn't helpful. The neurologist gave me a prescription for vestibular therapy, but my doctor was focused on my 4th nerve palsy and it improvement ( it took forever to get an appt, it's a free clinic so I felt like a number). I researched everything in isolation. Started my vitamins particularly b12 for the vertigo. Went to work, 5 days short of a month from the initial crisis I started feeling anxious, walking towards the wall, needed assistance, sweating, neck tightening, things began to become blurry, nauseous, then came the migraine. If my doctor had listened to everything I said I would have been in therapy now. His only response was, "you can't drive. You need to take a. Uber or Lyft." Just by googling migraines and vertigo I found vestibular migraine that had EVERYTHING I go through. Now I know why grocery shopping even while wearing sunglasses didn't help and only tolerating short times being out. Thank you for your post. I tried not to be wording, I hope others who read this make a decision and fight for their health. I currently do some eye exercises associated with BPPV. I look forward to the vestibular therapy and will View your videos. Thanks for reading.
Oh Barbara! I'm so happy you seem to have figured it out. Unfortunately, not all ENTs and GPs are well informed on vestibular issues and with so many other things on the list that they have to deal with, we often are considered a low priority. Yes, VM could absolutely explain your symptoms. It's not what I have, so I'm not quite as knowledgable on the subject, but Svea has some videos. Might be worth a chat with her. She is also on our FB group Vestibular hope.
100% fine and safe now. I know I began driving again too soon. I think I was only a week or two into my illness and drove to my ENT appointment (husband was at work, and I thought, I can do this???!!! crazy)... but had to call my husband to drive me home after the testing. I actually remember being wheeled out in a wheelchair as I couldn't walk straight after the testing he did for BPPV (which I also had alongside labyrinthitis). I sat in the ENTs office for two hours, feeling so unsteady that I could not stand. I will never forget that feeling, thinking my life and independence is over and gone. But, here I am 100% better, running and winning races, doing 24 hour call at the hospital this weekend, and continuing to fly and work all over Canada. After 4 weeks, I was safe to drive and be driven, but it wasn't until about 6 weeks that driving felt normal again.
Sharon thanks for these videos. I had this three months ago. I thought I had recovered but a night out in NYC made me realize that I'm still a little off. It's comforting to know that you made a full recovery. How long did it take?
Sean!! Yes, I made a full recovery, but it took a while. So before I give you my timeline, I'll just say that recovery is different for everyone depending on age, level of activity, level of vestibular damage, etc... but the path to recovery for those of us with labs and VN seems to be the same... keep moving and keep calm and you'll get there... eventually. Fore me. I was only about 3 months when I made the video and I was back to running and all of life... but still having these odd moments. Like surreal light headed feeling or sometimes like a second where I felt like I was about to get dizzy, but didn't. I feel like by 4 months, this was practically gone. That said, until about 7 months, I'd have like a second of weird feeling if I was looking at my ultrasound machine and a fetus moved across my screen really fast. It was just my eyes adjusting. So 100% now, no weird surreal light headed strange off feelings anymore despite still leading a pretty busy and often times stressful life/job. You sound like you are well on your way!!!! So happy that you are pushing through it. Keep it up :)
Thanks Sharon! For me it's not a feeling of dizziness anymore. Just feeling kind of off in crowded places, and getting tired easily, despite living a pretty active lifestyle. Hopefully it clears up eventually.
That "off" feeling is how so many of us describe it. It's how the describe the indescribable feeling of something you cannot pinpoint but just something not right. It will clear up. Just takes it's sweet time. It is sweet though. When the fatigue and off feeling lift... it's really really amazing. People say that the off feeling and anxiety are the last to leave us as far as symptoms.
I had sudden deafness, so I was given a week of oral steroid and told there was a 1/3 chance of my hearing coming back 1/3 get some and 1/3 stay deaf. I was referred to VRT which helped. No anti-sickness meds for me. They are ok to use in the acute phase, but they prevent the brain from feeling the full effects of the damage, by masking your symptoms, so they can prolong recovery. Best to use them only in the beginning then talk with your dr or pharmacist about it. I have had a lot of people who recognize that it is anxiety rather than the actual illness causing their symptoms. Once you recognize this, it's almost easier to push through it.
I do for sure. I would describe it as feeling like im floating when im laying down or sitting still. I was diagnosed with vestibular neuritis this past July but have had it since April 2019 ):
Hi Sharon, thanks for the video, very useful. I'm about 2 months in, had labyrinthitis a couple of times in the past but recovered relatively quickly at the time, various episodes of dizziness since. This time the initial attack felt 'different' somehow (the usual dizziness, nausea) but this time I also felt faint and it didn't follow a cold. Although symptoms have improved it hasn't completely gone 2 months on and I'm left with a sense of slight imbalance, clumsiness, tiredness, and some dizziness in the right circumstances and position (fitness exercising and stretches and looking up can really bring it on), and some left side tinnitus which is irritating at quiet times. Epley manoeuvres didn't seem to help at the onset. I notice from the video at 2:46 for 25 seconds you appear to be concentrating more to the right side, is that because you are/were right side problematic or just a coincidence, because mine is left side, is the up and down side to side something I could do when walking the dogs (alone in the fields lol) as this would be an ideal daily time for me, should I actually focus on anything while I'm doing it ? also I'm assuming that your eyes are following the movement of your head and not trying to focus ahead (almost impossible anyway I grant) ? Interesting that you mention you use nasal spray at 3:30 as I've always had sinus problems and a daily sneezing fit is common for me, and my belief is this caused the onset of the labyrinthitis this time. Massive appreciation for any answers you can give please, just find it more of a nuisance tbh, and impacting daily enjoyment of life to the full (I'm 57, male btw), Pleased you are better :)
@@JV-ht4vk Mine went completely in the end, I rgink with some people it's just a matter of time whle your body adapts to the new positioning. Still have occasional bouts of dizziness/labytrinthitis which are horrible at the time, but they normally get better within a couple of days.
Hi Sharon. Did you experience rocking as if on a boat, and heavy legs with gravitational pulling? The pulling is horrible and I am hoping VRT will help.
So many rockers in the groups on FB. I, for one, only rocked while in bed with my eyes closed a few times. I have heard others say that VRT helped with their symptoms of pulling and rocking. I actually felt like I was floating a lot. My legs felt quite heavy compared to my head (if that makes any sense). HA! So many of these things are challenging to explain, but yes, I've felt gravitational pulling... as if walking on a slanted floor.
I have had vestibular neuritis for 7 months now. Was misdiagnosed many times. Had to go to 2 different ents. Waited 4 months to get in to see one. This new lady I'm with says 3 months to heal of working with her. Gosh I hope this goes away
Sorry for the late reply Amy. It’s very frustrating and stressful to get misdiagnosed… but it is quite common. I hope, 10 months later, you are feeling much more comfortable in your skin.
Hello thanks for your video ! I had VPPB in oct for the first time in my life I’m 46 and 2 months later got it by NV had rotator chair treatment plus cortisone, I do have residual unbalanced and feel weird when I lay down. I feel pressure on my damage ear ( right side) I’m wondering is BPPV chronic? Can you get relieved for years? How it’s a lifetime struggle? Thanks
Sorry if this is a stupid question but are you supposed to focus on the object as you’re moving your head from side to side. Also, if it triggers the dizzy then that is a good thing right? Thanks Sharon for taking the time to post this video.
Hi Joanne! Not a stupid question at all. Yes, you are supposed to keep the object in focus. It prevents you from moving too fast. I had to go VERY VERY slowly to keep it in focus in the beginning. You'll get faster with time and compensation.
@@SharonHen Thanks so much for replying. Yes, I have to walk very slowly. It's the looking up at things that is hard to do. Due to mild double vision, the optician said i have eye muscle weakness so has referred me to ENT. This has only happened since the labyrinthitis attack and whilst it is mild it is so frustrating... anyway I'll stop moaning now. Thanks for giving me hope xx
Hi, I had a very short vertigo attack during ear infection. After that I've had constant light headedness and sense of imbalance, not really a vertigo. The weird thing is that I can feel it the most when I'm sitting still, for example when talking with someone face to face (eyes focused). It can make me feel sick after some time. I also notice it the most while being at the grocery store or anywhere inside. I don't feel the imbalance in a car or while riding a bicycle. Do you know if these exercises can help with this as my balance is good, but the light headedness is annoying? Thanks!
I hope you are both feeling much better after so much time has passed. The exercises can help and be tailored to your specific triggers like moving slow.
Hi Sharon, I have suffered from this vestibular symptoms labyrinthitis/ vestibular neuritis for several months. All symptoms seems subside but I still have ear pressure off and on in my inner ears. May I ask did you ever experience ear pressure and what you did to make it feel better? Thanks in advance!😢
I’m sorry you are going through this. Yes, I had awful ear pressure/aural fullness. I was so desperate for relief I purchased an ear popper off of Amazon to help open my Eustachian tube. Unfortunately, it didn’t work (and was hundreds of dollars). I think I tried hot compress along the jaw, I began sucking on mints and stopped chewing gum, I tried to consciously relax my jaw, etc. the biggest help for me, was ear plugs. On the really bad days, I’d pop my pods in or use earplugs and it would feel better. I absolutely needed to use earplanes on flights too in order to tolerate pressure changes. Time is the biggest healer.
@@SharonHen Thank you for the response! I hope you are doing well! I think I am going to try earplugs to see how it works. Every time, I asked the doctors, they just can’t answer why the fullness there. My ear pressure has subsided, however, I would still feel fullness or ear pressure off and on. So there is no medication involved with this symptom for you?
Hey wanted to ask you few things...did u have persistent rocking dizzy sensation as if u r sitting on boat or bouncing always present never going away..my dizzyness is 24/7 pressure at eyes level near ears n facial numbness..did u have all these?...other than that also have BBPV....did u take any meds or had anxiety? I noticed that every time I get flu or sinus congestion symptoms get worse again ...will we have to do these exercises entire life in the fear of symptoms returning after sinus flu episodes ?
You have a lot of the same symptoms I've been having lately! I feel weird if I lay on my right ear. I also have a lot of hearing loss in my right ear. I also have been getting headaches every day for the last three months. I went today for balance testing.
The good news is that I'm not having symptoms anymore. The deafness I am stuck with for now, but the rest has been gone for 3 years! Actually, I think today is exactly 3 years. I remember counting the days and now the year mark passed me by until just now. Good luck in your journey. It isn't easy, but you must stay consistent and positive in your outlook. Keep moving and keep calm.
Hi David. I had to have a one week round of oral steroids because of my associated hearing loss (pretty standard where I live, and did help me regain some hearing in my right ear). I had zofran for the extreme nausea I had in the beginning, but only needed it the first three days. They give it to cancer patients and post surgery for extreme nausea and it helped me when I was desperate in the acute phase. Now, it's just the steroid nasal spray for my blocked eustachian tubes, and some vitamins (B12, for energy, gingko for inner ear health, Vit C and echanachia to ward off the dreaded back to school colds I do not want to catch from the kids). I drink a lot of water. I find if I get a great sleep, I feel better the next day. Hope you have a quick recovery David. It is an extremely challenging illness.
i hope so. it is tiring and life is horrible. I had dizzzines in the bed when i turned my head to the right and afer 4 days tried epley exercise and i fixed dizziness totally but some lighheadedness doesnt go away, today is 24th day. I cant describe the feeling even.it sometimes comes and goes
@@hxhxhxx7886 it comes and goes . mine also around 7 weeks. I mostly sleep and feel better. I sometimes have headache because of stress I guess. I found a vertigo center , I will go and I will get all the tests . then I hope I will write here the good results.
ayse bal You will recover but it takes years but in saying that you will get small improvements weekly that you need to focus on so you don’t get stressed. You must push yourself to move and train your brain to build new pathways as the other pathways are damaged. Don’t take medicine it just makes you worse .. find a neuro physiotherapist who will give you rehabilitation exercise program that will work. Or go on you tube and do the physio balance movement they offer.. the longer you just sleep the longer till you recover. I was so bad that I had to start by just walking and balance in water to be safe . That’s when I started to recover faster. It’s a true debilitating condition that no one can physically see from the outside its nerve damage but the brain grows new paths for messages to travel along so recovery is just slow.. but you WILL heal . Eat well.. move..believe you will. 🙏🏻
hi Sharon, I had labyrinthitis since end of Sept (last month). Doctor treated me with high steroid and the hearing come back. Still doing VBT exercise. Now it's 5 week and I almost recover totally. I took gingko biloba for vertigo and it help. When i stop the gingko biloba, I will have migrain. Do you have migraine after few weeks? Cos last time, I only had vertigo. Thanks for the video
What's the goal of these exercises? How are they supposed to heal you? Is the goal to make you dizzier? Should I make up exercises that make me dizzy intentionally?
The goal is to trigger symptoms in a methodic way to expose the brain to them calmly and to generate new functional neural pathways. The need to bring on symptoms without throwing off your sympathetic (stress) nervous system. You absolutely can just make them up, finding your own triggers. Just make sure that you repeat and routine the heck out of them. NEVER skip your VRT each day. This is key to recovery. Eventually, you'll be able to slowly let some of the exercises go, but it will be because you are feeling better not because you are "too sick" "too tired" to do them.
hi, glad to see that finally someone helps. i have tinnitus roughly 3 months and i m constantly with headache or dizziness .( i dont really be able to describe what exactly it is ) also i have a sleep apnea. when i m walking i feel that the movement its not actually this that i used to have. further more sometimes when i am going to sleep, the moment i am getting into the deep sleeping , a have spinnings . is it vertigo or panic attack ? and are actually these the symptoms of labrynthitis? i have seen 7 doctors, i have done a lot of blood tests and everything is fine , only a low level of b12.
tinnitus and dizziness and even the spinning can all be the results of labyrinthitis. Many Dr's can only guess as to the diagnosis and it is usually just the result of your history. I'll respond more when I get a moment. Sorry you are going through this. Might be worth taking a B12 supplement.
I've heard other people with vestibular issues talk about this derealization. Much like you describe it... like you are living live as it happens, but in some sort of dream. I can't say I've had this, but I do know people who have. Look up Edd in the Facebook support groups. He talked about his struggle with this a lot. He is on the labyrinthitis support group on FB. For me, I just had a lot of difficulty focussing. I'd be watching tv and find myself unfocussing my eyes or looking just at one corner of the screen. In regards to your first post. It could absolutely be related to anxiety. Someone just posted a great article on anxiety and vestibular disorder on the fb group Vestibular disorder support group. I encourage you to join in the conversation there. Hoping for your recovery.
It depends. Here is how I understand it: The nerves themselves, if damaged by swelling have the potential to heal themselves if you are able to relieve the swelling quickly through oral/injected steroids or other means. They take a very long time to heal... months, rather than weeks, and often time, there is permanent damage to the nerve. The extent of the damage varies from person to person. For many, some sort of compensation must take place for us to feel "normal" again. Hope this helps.
hey, I'm happy I've found someone putting a more positive spin off of this. I hope you don't mind me asking you this, since you've since recovered. I had a terrible vertigo attack about a year ago & after it wore off, it left me feeling off balance. At first I felt like I was floating, now I just strangely feel off as if one side of me is heavier than the other (as weird as it sounds) I just feel disbalanced, I can rarely go into a grocery store as I begin to feel like I'm moving. I developed tinnitus later on (no hearing loss) and some tmj even though the doctors can't diagnose it. Do you think in my case these exercises could help get me back to balance? Don't know what else to turn to:/ much love x
Absolutely they could help you. Believe it or not, going to the grocery store can also help. Exposure exercises helped me to recover. Little trips to the grocery store, mall, restaurants, etc. You have to do the things that make you dizzy, and go to the places that make you dizzy, over and over again until they no longer have an effect on you. Hang in there. Eventually, when you return back to all the activities you used to do before getting sick, your brain will compensate and you'll feel more like yourself again. Good luck!
Hope you're still open for replies! I'm 2 weeks in, first week was awful, I haven't had any nauseous feelings at all thankfully, this has mostly been visual for me, i feel kind of disconnected with the world a little, im back at work now as my body can function fine, head feels dizzy when looking up and down but mostly feels like things are popping out at me when i look at them (kind of like a 3D movie but with everything). Have a headache that's kind of on and off too... I will try the exercises tonight for the more visual side of things and hope results come soon, I've heard people can take any amount of time to recover on this, it is literally a solo battle. Depression hits but sometimes thinking that life may be stuck like this but my will power kicks in to tell me otherwise, it's like the old me is fighting this new me knowing this is not how it ends kinda thing... Thanks for the video, how long do you think the average case may last and what steps forward would you recommend from this point? Thanks again!
back to work already? Amazing!!! Proud of you. Work will help you compensate faster. I think I only started back at week 4 and it was only part time, so BRAVO! I know that for many, the first, 6-16 weeks are rough, up and down, anxious weeks. Then, many of us begin to see glimpses of normal again. We start doing things again (which you are already doing) and realize that it won't be a forever thing. You might get little blips here and there for the first year, but so long as you keep moving and keep calm, you'll continue to compensate. The only thing for you, given that you have headaches, is to make sure you are dealing with an "itis" and not something like MAV. People with MAV often have auras, which I never had, and benefit from medication. I had headaches in the beginning, but no migraines, and had to look up what an aura was. So, VRT, time, staying calm, and honestly, trying not to focus on it really helped me. I had to stop googling and even had to detox from the support groups. Lots of things will trigger anxiety for you in the first 4-6 months, so just be aware of the impact anxiety can have on your vestibular system. You've got this. Keep moving and keep calm.
Hi Sharon, thanks so much for the reply honestly. I've just had a brief look at MAV and I have literally none of the symptoms besides dizziness, there's no sickness or vomiting, the headache is moreso on the front back and both sides of the head and comes and goes (could be anxiety/stress tension headache). no numbness and no flashing of lights really although i do have a buzzing from time to time (tinnitus i believe, but no hearing loss). I'm seeing my Doctor tomorrow to just update them on my situation and see what they can do (ask maybe for some anxiety helpers/antidepressants although i know taking these too much can hinder your healing process as some have found so i will take them only when really necessary). I'm going to mention VRT and see what they can do for me, just tried your looking exercise and feel dizzy typing this out even so i'm fairly sure i have the visual/faintheaded dizziness instead of the spinny sensation of vertigo most have (which may explain the no sickness part). Thanks for the positive help and fast response. The hardest part of this is having people look at me thinking I'm normal but knowing in the back of my head i am far from it (just good at hiding it). The weirdest thing for me is i find i have some symptoms that others have but i'm not bedridden or anything even in first week i could walk fine but just couldn't move my head otherwise i would feel messed up, it's just the brain foggyness and lightheadedness that i have really I can't explain the visual effect at all really it's like i can look at something but when i do everything surrounding makes me dizzy even if i change what i'm focusing on everything else will still have the same effect, best i can explain (and also moving head up down left right doubles the effect). Well I've rambled on enough so thanks for reading this! I will try to watch my diet, continue with these exercises as if they are making me dizzy i can only guess that means they're working and i will get plenty of rest and fluids in me. I hope this is VN/Lab and nothing anything more serious and i also wish this feeling goes I'm only 21 and kind of want my life back so i can go forward in my job/go out and see my friends. this has changed my life though to some extent, IF and when this is over i am gonna do some crazy live life on the edge stuff to make up for the time lost! Thanks so much again and i wish everybody else out there with the same symptoms or worse to keep at it, it might be a solo battle but if we all help and support eachother like you have done maybe we'll just pull eachother through! Mind over matter. F*** This Thing UP. Love To All.
Hii sharon ..i already start to do ur exercises and i felt the difference from the first day... but i would like to ask you about the last exercise (the whole in the paper) you move the eye only or the head? ...and if you did another set of in addition to these for ur recovery ? thanks.!!!!
AA TV Adventures! I am SO happy you saw improvement. It was so reassuring for me when the exercises made me less dizzy on day 2, and 3. They became easier to do. My physio had me move my head as well as my eyes. This might be because I also (and like many others) held my head stiff like a robot and she wanted me to get used to doing natural movements again. I do have more exercises and advice to share... just have to carve out some time to throw together another video. Basically, we worked on the diagonal head movements and I began using foam to stand on to do some of these movements. Keep it up with the exercises, sounds like you will recover quickly. It's common for people to feel worse for the first 3 weeks doing the exercises, so this is a very VERY good sign that you could recover quickly. Great NEWS!!!
Hi Sharon, reading through all your comments below gives me hope. Turned out I have damage to one vestibular organ (most likely due to VN). Still symptomatic after 3 months. It's only getting better reeeaallyyy slowwwly, which drives me nuts. I wonder: did you also experience neck tension/pain (from keeping your head balanced)? You mentioned TMJ (TMD) in this video. Did you have this before or did you develop it during your time dealing with LAB? Neck & jaw tension seem to worsen my symptoms. Also, I wonder if your symptoms also got worse as the day progressed. In the mornings now I mostly feel pretty well (except for the first 1/2 hr after waking up), but in the afternoon I get tired and decompensation sets in. In the evening I have the most balance problems/disequilibrium. After a nights sleep I'm okay again... until I get tired again in the afternoon ;).
everyone is different. For me, mornings were the worst. TMJ happened as a result of stress from this illness. I've heard many are worse in the afternoon... likely due to the stimulation of the day.
Thank you for your answer! It helps to know ;). I'm now also doing mobilization and stretching exercises for my neck/shoulders... which also help the dizziness (by removing tension, and by all the different positions you have to put your head in, so it's a bit like VRT too :)).
I still have Tinnitus, 1.5 years later. I have learned to down it out. I don't notice it much anymore. Mine started as screaming loud Tinnitus and got better over day one, then over a few months.
I think if you have this condition you really need professional help from a physiotherapist who has vestibular disorders skills.They can then target the VRT excersizes correctly for the individual patient as my physio has done.What surprised me was the frequency of excersize required,I am on 5 x reps / 5 x a day at least or whenever I can.
Excellent Advice!!! I made the videos for those who do not have access to a physiotherapist (there are many) and also those who cannot afford one, or who are experiencing long wait times. Also, just to give hope. I truly believe my VRT specialists were key to my recovery. 5 reps per day. That is a lot. We are all different. I was on two reps... like a few minutes each in the beginning. I just ran 15K tonight though, so I've graduated from VRT. :)
Sharon, thanks for these videos. What did you find helped with sleep/anxiety? I have never had anxiety issues and this is has brought out nothing like I could have imagined. Any thoughts as to what helped you would be welcomed. Your videos and many of the comments make me feel better, this will get better. I will recover. Now I need to really convince my brain/nerves of that.
Hi Sharon may I ask did you experience brain fog and panic attacks from this viral infection I went to the ent and he said I may have had VN but I still feel dizzy and have extreme brain fog after 3 months it's not going away I have to take klonopin just to feel ok .
I experienced both. 3 months is still within the range that many people feel symptomatic. I know some people consider some of the medication that they give you to be a vestibular suppressant, so just be careful, because they can prolong your recovery time. Ask the pharmacist to be sure. Hopefully you can get on a good VRT program and get specific exercises that work for you. Hang in there. It's a nasty illness, but I've been 100% for months. It can be beaten... MOST people recover :) The vast majority eventually get there.
@@marianelamiraglio27 High dose steroids for my hearing loss for seven days. Typically, nothing is prescribed for vestibular neuritis or labyrinthitis, unless there is significant hearing loss. If you have vestibular migraine, or if anxiety is hindering your recovery, you should speak with your Dr about medication as it may help. Good luck
@@SharonHen ya hice rehabilitación vestibular, incluso sigo con ejercicios en mí casa, según mí terapeuta ya tengo compensados los oídos, pero yo sigo sintiendo el mareo
I was never diagnosed with labyrinthitis/vestibular neuritis and instead diagnosis of exclusion with Meniere's.. I had the whole workup done.. I never suffered from extreme dizziness but more of unsteadiness/fogginess. I've learned to live with it, I still run/surf what not and its more of a nuisance now. Did these rehab techniques work and did it take a while for any results?
I have had a constant feeling of bobbing, slight spinning like the tail end of someone spinning you around in a circle for a while, and just a consistent feeling of movement...is this something you've experienced as related to labyrinthitis? I am also quite fatigued, more so than I have ever been...your video is so uplifting...just wanted to thank you for your insights in advance, I've never endured such a physical challenge before.
It was the hardest thing you will likely ever have to endure. I had a very similar feeling and it was so persistent and I found that it was taking my hope away. Someone who had recovered, took me under their wing and assured me that it would pass, it helped so so so much to have that hope about recovery reignited. Many of us come out on the other side of this with a new sense of purpose. Hang in there... so long as you are putting one foot in front of the other you are recovering. Your brain is amazing... but it's taken a hit and it will take some time to adjust to the damaged signals, but it will. You will be back to yourself. You will, but you have to try to stay positive and talk and reach out to other's who have been through it. I admin a FB page called vestibular hope. We have over 500 members who are all suffering their way through this mess, and getting through it together. Lots of hope on that page. Melody (another admin) has been doing live chats to answer questions and we're thinking of making it a weekly thing. You are not alone. You will get better. Keep moving and keep calm :)
Thank you so much for taking the time to respond, it's very inspiring and has helped me understand that negativity and loss of hope is not the solution. It is so amazing to see so many supportive people dealing with is, and other vestibular related issues, come together. Thank you so much
Absolutely a must see for anyone suffering from these diseases. I'm 24 years old and this has really disabled me for a while. I can't let it keep me down though. I'm going to beat it using these exercises and advice. I'm at the point now where I have only balance issues, but that could be because I am still using the motion sickness patch, and the 2mg Valium twice a day. Was recently told that taking the medicine are going to hurt my brains compensation that needs to happen. So before I go cold turkey and suffer through these exercises and let it come full force, I'm looking for alternative medicine that can help with nausea, spinning, and overall health. Any supplements you recommend? I know they have to be out their and I want to do the excercides religiously, so I'll take any non vestibular suppressant I can find. the only thing I've heard of is collodiol silver from a Heath food shop, that and some people told me that Mexican marijuana high in CBD and low in the stuff that gets you high, would work great for the nausea. Been taking fish oil supplements to help reduce the inflamed nerve from the viral infection. Also just started taking vitamin c lately, just to make sure my body doesn't get too weak on its own
Thanks for your comment. Well, it might be worth talking to your dr to find out if you are low in anything... like iron, magnesium, etc. They can check with blood work. I too took fish oil, vitamin C, echinacea, powdered magnesium, gingko biloba, and lots of water in the beginning. Those with vestibular migraine have reported improvement with magnesium oil. I had heard from other's on the FB support pages about the above supplementation and was just willing to do and try pretty much anything to get better. It feels good to be proactive. Sounds like you are on the right track. Oh, and absolutely, some of the anti-nausants are vestibular suppressants, so I have heard they can prolong recovery. Big Big HUGS to you. 24.... you are SO young and dealing with this. Keep moving, keep positive, keep exposing yourself to exercises and environments that make you dizzy. BRING ON THOSE dizzies :) I am now almost 5 months and haven't been at all dizzy since 6 weeks and 2 days. It feels amazing!!! You'll get there.
If you ever read my comment, please help me to answer on how many times a day do we have to do these exercises? I feel like doing one rep of 20 times each for a day is too little, but I don't want to overdone it also, coz everything excessive always end up not good. Thanks.
Hello, I also had this disease of vestibular neuritis and it has now gotten better. I have taken cortisone and because of the blood circulation I have to take a lot of medication and now I do a lot of sport, it just goes on and now I also have to take vitaminstake so I had very low levels of vitamin D and then I have to take vitamin D against capsules and the question is now with you, I think a few years have passed and what interests me so much? Is in the head it's a little bit so left side is a bit harder is the symptoms always change with this disease sometimes weaker sometimes good sometimes the brain is somehow left side I have the feeling that a little hardened so hardened sometimes strange pressure in the head times pressure imI have my head so it's normal so you had these symptoms too
Hey there. Im in week 3 of vestibular neuritis. I started doing rehab exercises and I can feel so much improve after just one WEEK! I couldn't do anything first 2 weeks now I can walk for 2-3 miles. I can stand on one foot. I'm 70-80% So today I woke up a bit worse which is good because that means I'm doing the right thing! But I wanted to ask you. Did you rest day after really good excersices? Or just continued even tho you woke up better? also did you stop alcohol consumption? I haven't drink in more than month and wanted to maybe have 1 drink but I don't wanna ruin my progress
Generally, for me, I found more was more. I tried to do a little more every day. Doing things and getting back to life, even if i didn't feel great, really made me recover more quickly. That said, if you feel like you need to rest, then rest. I did have a few days where I had to just take it a bit more easy. But I always faced each day with the attitude that I would try to do just one more step that day, just one more minute on the trail, just spend a few minutes longer shopping at the store. Hang in there. Week 3 was still pretty tough for me. I didn't see vast improvements until week six. Keep moving. You are doing fantastic. I am not much of a drinker, but a glass of red in the evenings really helped me feel more normal. Calms the nerves which is important as anxiety from vestibular illness can be the hardest part to overcome. Pour yourself a glass and I will virtually cheers you tonight.
Sharon Hen oh thank you so much for a good reply! I'm hanging in there and today was the first day I felt no dizziness and vertigo for 20 minutes. it was amazing. I love the smiley face practice, it's the right attitude. I'm not a heavy drinker but like 1-2 beers there and then. I think I will keep it minimal but still let me enjoy once in a while. I never found the fb group you have mentioned? I'm gonna keep going. more is more, Today I even solved a rubiks cube while standing on one foot 😂 that was challenging. Thank you so much i almost lost it when I saw horror stories about this.
Hey Sharon, how long have or were you doing these exercises? And was this the entire list of exercises you are/were doing? Are you still 100%? I am also taking Zoloft for 6months since it was advised by my ent doctor and already feel like shit 4 days in with no sleep. Would you advise to stop taking meds completely? Sorry I'm asking a lot of questions, I had this off balance/ unsteady feeling since 6th grade and now I'm 20. I would appreciate a response since I will be commuting to temple uni which is going to be an hour train ride. I don't want to go into a huge crowd feeling like this.
Hi Trush! I am still doing great. Life is busy, so I apologize for the late reply. I will soon make a video including all the VRT I did from start to finish. I began with two simple VRT exercises, twice daily, reps of three. I built up gradually over weeks and added in new exercises. I always performed them daily, two to three times per day. In the early stages, it would take me only 10 minutes each time, but as I added them in, it was a solid 30 minutes twice daily. I continued with each exercise until it no longer made me symptomatic, at which point, I would essentially graduate to the next level. As far as medication, I'm not a physician, so I cannot consult you on the issue. The only thing I have recommended to people is that they check with a pharmacist or GP to ensure that the medication they are on is not considered a "vestibular suppressant". I know there are some disorders (like Vestibular Migraine and Menieres) with similar symptoms to VN/Labs, that benefit greatly from medication, but for a straight up vestibular hypo function, it's best if you are able to just start with the brain in it's unmedicated state. I say "IF" because for some people, the only way they can function is with medication, and I completely respect that we all need to live our lives and find ways through the illness. I'm so SO proud of you going to temple. Before you go, try to expose yourself to smaller crowds repeatedly, so you can get your brain used to the extra visual stimuli. Good luck.
Thanks for your comment. This video is a compilation of all the exercises that I learned from my physio and from ones available online. In the beginning, I absolutely felt awful doing even one exercise. The key is to push yourself hard enough to challenge your brain while not pushing so hard that you make yourself worse. So, try one of these exercises a day, then slowly increase to doing that exercise twice per day. Know your body. Everyone is different. Some people can go through this entire routine and they don't get dizzy, but for me, I had a "bad case" and really just walking around the house was challenging. So, I started out standing with my eyes closed and heels together. I did it with my back against the wall in a corner so I had support for when I stumbled. I did that for 20 seconds at a time. Then I stood with one foot in front of the other... did that for 20 seconds eyes open, then eyes closed. I think it was an entire week before I did anything else. Hope this makes sense.
Hi Sharon. My husband is a physical therapist and I got VN a week ago. I have four children and am pregnant. My husband knows some exercises but I'm just wondering more about dealing with day to day life! Did you have family around? I've heard you say you could barley walk around the house and that's me. Yesterday I pushed too hard i think and had a terrible tension headache all night. Did you ever have those? And any advice for getting things done at home while striking a balance of not over doing it in the early stages?!?! Thanks so much for your positive outlook. Hugs
Oh Katie!!! Thank you for reaching out. I do have advice... join one of our FB groups (vestibular hope, labyrinthitis support group, dizzytimes, vestibular challenges and loved ones are a few good ones). I don't "own" the groups, but I try to be active in them at least every few days. First of all, you have to let go of the guilt that you will inevitably feel about things you are missing with the kids. I myself was unable to look after the kids as I was barely able to look after myself, so I had my parents help out and they ended up babysitting them for 2 weeks. I felt guilty, but the kids had a blast and it gave me time to recover. The kids went to my father's house and my mom came to babysit me (ha! I'm 36 and I needed a babysitter). It was actually a really great bonding time for all of us and I am to this day touched my the family and friends who brought casseroles and offered to take care of the kids for a few hours in the months following their return. They, unfortunately, watched more tv then I am happy about, but we were literally in survival mode. It can be very VERY overwhelming having to care for little ones while recovering from this. I tried to include them in my recovery as much as possible. They know all my VRT exercises and would do them with me every single day. My parents and my husband would often set me up with little crafts for the kids to do the night before I would be alone with them, so I'd have a box of colouring or little toys to keep them occupied while I rested. Keep a journal too. Recovery is so slow, that unless you document every day, even if it is a score from1 to 10 of how you are feeling, you won't notice that you are recovering and the anxiety will take over. About the balance. Take note of the number of "things" you do every day. A thing would be emptying the dishwasher, sweeping the floor, tidying up the toy room, making the beds. When you journal, you'll be able to tell your limits. For me, I could literally only do 5 "things" max a day. Making tea and cleaning the kitchen took me all morning when I was where you are. If I pushed too hard, I felt worse the next day. Do the things that bring you joy. Wether it be a nice bath or a good movie or even a book (if you can read, I wasn't able to read for 2 weeks, just couldn't focus on anything). Accept help and ask for help and don't feel guilty. Make sure to tell the kids that mommy is sick, that she might seem sad or upset, but that it isn't anything that they did. Inevitably, they will see you struggle, and you don't want them to worry. You WILL get better, know that. I had a "VERY BAD" case of labyrinthitis along with nearly every associated illness you can get with it, and here I am 7 months later, and I've been recovered for months. I have been making up for lost time with the kids. I actually surprised them yesterday, and we played hooky from school and I took them to the trampoline park and we did crafts, ate out, all of it. It made me feel like a good mom because they know how loved they are. You will feel upset that you have missed this time with the kids, but really, in the long run, you must take care of yourself so you are able to care for them and the faster you recover, the better. I hope this makes sense.
@Sharon Hen I have make the Test with water ans air in my ear. It is working bist i trink a half ja damage did you trink my Symtoms of dizzy van vom from this ?Thanks ❤
I am really scared and hope you can help. A vestibular therapist diagnosed me with vestibular neuronitis last Thurs. In April, I was sick with a virus for 2 weeks. Then, a few days after I was better, ringing started in my left ear. About a week later, the off balance/walking on a boat feeling started and hasn't left. I have been dizzy now for 9-10 days. Therapist gave me exercises and did some testing in office (the goggles and the one where you stand on the platform and they measure balance). I've had no MRI or CT and no one has suggested it yet. I have myself terrified that they're wrong and this has to be something "bad". Any words of reassurance? I laid around for a week, trying not to move and then finally started moving 2-3 days ago. Moved a lot yesterday and feel horrible today with dizziness. They have me taking low dose klonopin at bedtime to try to calm the vestibular area too. No hearing loss and my hearing test was normal. No spinning at this time. Any words of advice or encouragement appreciated!
I can help! All that you are feeling and worrying about is 100% typical and normal for VN. You are still in the worst stage of the illness. I was still a mess when I was weeks in. It really sounds like you have VN. The vast majority of us who have had an MRI or CT, they are normal. Sometimes they find something incidental, but usually they are of minimal value. The key, now that you are up and moving is to keep up and keep moving and expect that to make you feel weird... your brain needs to get used to those movements. Keep a journal of how you feel daily and what your accomplishments for the day are. The more detailed the better as progression and recovery are so slow, they can almost go unnoticed. It only makes sense that your brain will compensate though... the brain is an amazing thing, but it will need time. Best if you kind of resign yourself to the time thing sooner rather than later. I just wanted to hurry up and recover and I was quite frustrated. You have to be really really careful with vestibular suppressants. They can prolong recovery by masking your symptoms and not allowing your brain to fully be exposed to the damage to your vestibular system. It really sounds like VN to me... having heard from thousands of other people with the same symptoms. We all seem to have those feelings of dread that it is something worse and most of us google way too much. It likely isn't, so try not to think that way.... VN is bad enough. OK, so my advice to you is to talk with your dr. and pharmacist about wether Klonopin is harming your recovery now that you are out of the acute phase. The sooner you can try to return to normal activities, safely, the better. It is going to make you feel really strange, but get out walking... even if it is just a few minutes, or around your kitchen island. You can join us on the Facebook support page "Vestibular hope" where myself and 2 others who have fully recovered try to help those behind us. Eek... off to get ready for work and get the little ones on the bus. I was sick... horribly sick with labs and I healed completely... there is a little hope for you. I'm 100% better.
I was diagnosed with this condition 2-5-20. Horrible feeling, my question is will we ever be able to drive? I know recovery might take long depending how your body takes it. I would love to have hope that once it gets better there will be a possibility of driving again. I'm a bit disoriented on all this 😭 will I be able to work again ? 😩😭😫😵😖 horrible migraine.
I’ve flown 36 times solo since I recovered. I went from being unable to walk without holding on to something or someone to running and winning my first race. I live a completely normal life. Have hope. If you can get on a medication to control your migraines, it might help speed recovery.
The cause of VN is often idiopathic… and many suspect viruses to be the culprit, when no other known cause exists. The problem, from time to time, is that the body relies tremendously on a functioning inner ear bilaterally, functioning together, to live life. When the inner ear is damaged on one side or both, and they don’t communicate to the brain properly about where the body is in space (proprioception) it impacts every aspect of your waking life. It also creates what I call vertigo or imbalanced induced anxiety, which behaves a lot like any other variety of anxiety. The problem is that in vestibular disorders, in order to get the brain to adapt, you have to do things that make you uncomfortable repeatedly. So if your anxiety is causing you to want to stay in bed all day, it can keep you sick. So, it becomes a problem with compensation and anxiety rather than a problem about the virus. So, after the acute phase, it isn’t about overcoming a virus, but rather getting out of your own way and clawing recovery back for yourself.
Sheena Poucette Steroids help especially in the beginning of the illness to get any inflammation down. It helped me immensely and also think it saved my ear from further damage.
@@davidspychalla5305 that's what i heard alot of people got my dr wouldn't give me steriods... i was hoping that would help me i still haven't get any steriods to this day 😞
hi sharon thank you so for the respond and for the time to write about the helpful information. i havent diagnose yet but in my case i feel woozy/ dizzy like im on a boat all the time. it start when i had cold last november. i live in the philippines went to see ent did not say anything. i do not know if they have been a case here for labyrinthitis or vestibular nueritis. i feel frustrated bcuz i have this for 3months and dont where to go. thank you so much that you responds to me. sorry my english is not good. can i ask more question to you if would be ok to you? when i try to pop my ear i feel relief for awhile or if yawn a lot i feel a little better for awhile is this something to do about ear problem? i just ask if you have any idea about it? there is no where i can find for help. im would be happy to wait for yor respond. thank you sharon
Your english is great! I'm not a dr. but I have been through it and immersed myself in everything to do with the illness when I first became sick. I'm an ultrasound technologist, but like I said I can offer you some advice. Your case sounds VERY much like it could be vestibular neuritis or labyrinthitis. Don't get too worried about not having a diagnosis as unfortunately, even the Dr's have difficulty figuring out exactly what is going on as there is no absolute diagnostic test for it. They can rule out other things with an MRI, such as tumours (very unlikely) and MS (also very VERY unlikely), but they can't say for sure, yes, it's labyrinthitis. So, they give you their opinion only. The good news, is that the treatment is pretty much the same for all of the vestibular disorders (PPPD, labs, VN, VM, etc). Sounds like labyrinthitis though. It also sounds like you might be the same as me and have eustachian tube dysfunction (trouble with popping your ears due to swelling of the tubes that lead from the back of your throat to your middle ear behind the eardrum). For the issue with your popping, a saline nasal spray might help, and if you can see a Dr. you could ask them for a steroid nasal spray, but make sure to ask the pharmacist how to use the spray to get it in the eustachian tube... you kind of have to lean over the bottle and angle out towards your eye to get it in properly. The good news is that this also seems to ease with time. I still am having issues with popping my ears, pressure issues when I'm going up and down hills even or if the weather is humid, but it is much less of a bother now. On a really bad day, I take an antihistamine and it seems to help. Someone told me that taking magnesium supplement can also help and I've found this to be true. You can purchase it over the counter at the pharmacy. The other thing I did was invest in an "ear popper", the "otovent" also has had some success for people. Basically, they help you open up those tubes by pushing air through... like pinching your nose and blowing to get your ears to pop. It has eased some of my symptoms and they are available on amazon, but if you look up "valsalva maneuver" it is very similar and free. Hope this makes sense. 3 months... the worst is likely over for you. Keep a journal of how you are feeling. Even walking around every day will help make you feel less dizzy. It's hard. Hugs from Canada. We were just hit with a giant snow storm... 30+cm of snow, so I am happy to still have power so I can respond :)
Dear Sharon. I really hope and pray your video will help me 😔 i got severe vertigo and nausea on 1 May. Doctor said my ears are inflammed and put me on amoxicillin. After a week it went away. On the 22 May i started experiencing severe vertigo again, but this time it felt like i was on a boat and trampoline i thought i waa dying (people at work had the flu and i didnt sleep well for the past week so i think my immune system was low) doctor again prescribed an antibiotic and after 10 days of extremely severe symptoms that boat dizziness subsided. Sadly on the 6th of June i got the flu 😒😒😒 and the following night after playing video games ( maybe the motion on the games triggered it again or the flu idk) i started experiencing that boat dizziness again. To this day it hasnt gone away. I feel extremely anxious and sad and i dont know what to do. My doctor is clueless he says its a virus, there are no VRT Therapists anywhere near me. My family got the flu and now today im feeling worse. Dizzy, nauseous, fluish pain behind my eyes and boat dizzy still continues. Im 29, im terrified im stuck like this forever 😭😭😭😭😭 please help me. Should i completely stop gaming as it makes it worse? I dont want to stop my axtivities in the case it delays compensation. I take no meds as it makes everything worse. Please will it really go away?
M1SS B3RRY. I'm so sorry you are going through this. I am a former sufferer and not a physician. I hesitate to advise people on what specifically to do, other than to say, there is a lot of information on youtube regarding VRT exercises and that performing them... although they may not help... they likely won't harm you. Anxiety is a HUGE issue for many people. If you can work through your feelings without medication, that is ALWAYS the best way. You aren't alone. Gaming will probably help with compensation. I myself am a sonographer and it really REALLY is similar to gaming (which I also do...lol). It's kind of like optokinetics. So, try gathering VRT exercises you think might bring on symptoms. It's a start, but work through them daily. It's not hard to figure out what exercises will help you. You need to do the exercises that bring on symptoms. The ones that don't bring on symptoms, aren't needed for you specifically. Try to get a routine together too. It sounds simple, but try to get a solid 6-8 hours of great sleep. Drink water. Join us on vestibular hope. Try not to be scared. You are 29! This will NOT be how your story ends. That i am nearly certain. Almost everyone sees improvement to some degree. I know it feels like you've been sick forever, i do, but you are likely just coming through the most difficult part. Have hope. Also, sea bands should be fine. I don't see why they wouldn't be.
I did. I work in healthcare. The vaccination hasn't seemed to cause a flair in symptoms for the majority of vestibular patients I have spoken with. Covid has caused huge setbacks for many sufferers. I'm always pro choice when it comes to what people put in their bodies, but for me, I had it and I have no regrets.
A few days ago I was struck in the head by a football on the left side. My ear was struck as well. Ever since I've had the occasional headache but now I'm having constant head rushes. I think I may have this but I'm going to see a doctor to be sure
So sorry this happened to you. You can absolutely get vestibular damage from a strike to the head. Professional sports players get it as well. Good luck at the Dr's office. The head rushes were part of my illness. It is a horrible feeling that brings on anxiety. Try to just weather them as best you can. For me, although horrible while happening, I was fine after each one. Good luck
TMJ... but I think it was mostly the stress causing me to grind my teeth. My facial nerve was affected at onset, so I had some pain on my right cheek for a while and some numbness. Lots of back pain and neck pain from moving in a more robotic way.
I went back part time at 3.5 weeks and was back to full time at a busy hospital a few months in. Return to work was hard, and felt impossible in the beginning, but in the end, it really helped me recover more quickly.
Great Barbara. I mention it in the video, but VRT can get pretty imaginative. Basically, find movements that make you dizzy and repeat them over and over until they no longer make you dizzy again. Good luck. Hope my exercises help :)
I am glad you recovered ,you actually recovered pretty quickly ,it been 5 months for me ,slightly better but still have vertigo/dizziness I need to start looking into therapy. ...
Yes, Pili... and I hope you make your way onto those Facebook groups that I mentioned. There are people there who went through the same thing and there are so many, from all over the world, so someone is always on to listen and comment and help. It was a game changer for me when I found those support groups.
How often depends on how sick you are. You could start just picking one or two exercises and doing them 2-3 times per day... adding in ones when you feel the mastered the ones you have been doing. Remember to relax and breath. An anxious brain doesn't heal effectively. Breath in for 4 seconds, hold for 7, out for 8 seconds. Repeat before you start your vestibular exercises and it may lead to better results.
My story so far: August 2017 woke up fell to the side couldn't walk straight room was spinning fizzing throwing up and ringing in my ears since august went to doc the day it happened they said I have vestibular labryintitus the ringing has not stopped at all constantly there went to ent he is referring me for an MRI and said he doesn't know if it is VL very concerned also have lump on neck getting checked only 24 and this is ruling my life also had hearing test which showed right ear significantly worse which explained the balance problems ringing in right ear only was told it may ever stop heartbroken x
well... some Dr's have absolutely no idea what they are talking about. The vast majority of us recover completely, and all of us compensate in some capacity. We have someone in our support group with 100% bilateral vestibular loss, confirmed by VNG, and he works, drinks, parties, is successful, and all around a generally happy person living a full life. If he can do it, you can do it. You have age on your side... but I have found that, generally, the younger the person, the more anxiety can take over and prolong your symptoms. I say this, because I was in my early 30s when it happened to me, and anxiety was my biggest obstacle. Those irrational thoughts of "I'm going to be like this forever", "I'm going to wake up tomorrow with hearing loss on the other side"... they nearly consumed me. Find us on the Facebook group Vestibular Hope. There are so many of us who have recovered from this, and also so many in the thick of the illness, right where you are. We can help each other through this. I'm 1 year fully recovered vestibular wise. 1 year of no dizziness. The lump on your neck... PM me about it on FB if you find the group. I've been doing ultrasound for 13 years and I've seen 5, only FIVE, normal thyroids in that time. If the lump is on the front of your neck it might just be a thyroid nodule, if it is on the side, it might be a lymph node. Try not to stress too much about it. Ask for an ultrasound of the lump if the MRI takes too long to get into. We would be able to sort that out.
Sharon Hen thank you for your response if gives me hope one day this will all be in the past I am going for an ultrasound tomorrow for my neck and am just waiting for the appointment for my MRI to come through , I don't have Facebook unfortunately I just hope this hissing goes one day and I don't have to put ear plugs in whenever I go out because of the noise and my balance gets better thank you xx
It's still a bit annoying... they don't pop properly. It is knows as Eustachian tube dysfunction (ETD) and comes from scarring of the eustachian tubes that open and close with popping. It has gotten so much better and I've flown 6 times in the past month, no problem, and have another 7 flights scheduled for the next three weeks. They did pop, but it took months. They are still a bit reluctant to pop depending on the weather, but steroid nasal spray helped.
Hi, I am still suffering unsteadiness even-though the inner ear loud noise discomfort has got relieved. The imbalance is more especially after having some meal and then subsides. Any remedies. The vertigo first began in 2012 and I'm stil having some imbalance
Why not try something simple to start and just journal your food that seems to trigger you the most. Some people, especially those with VM, seem to have food triggers. Caffeine, chocolate, red wine. I didn’t have food triggers.
Hi All, Have been struggeling with this myself on a number of times now... I'm trying with Diet and supplements and allergy vaccines, have any of you tried this approach?... As far as I have read the "Ithis" is another word (latin?) for inflammation... and allergy and food can give (the bad) inflammation... Anyways if anybody have any experiences with this approach please share.... I'm personally trying to follow a lectin free diet, so no corns/wheat and so on, no diary and nightshades and so on.... almost done with a dust mite vaccine, and starting today on Grass vaccine (this have started it all over again), but also gives me some kind of verification that it could be caused by food/allergy... Do you have allergies or food sensitivities?? or have you tried experimenting with it?
Here is what I remember of my personal timeline (everyone is different). For me, the first 12 hours were quite intense and I couldn't walk well unaided. It was like being in the twilight zone. I didn't have any drop attacks (as is common with other conditions like Menieres) in that I didn't vomit or fall to the floor. I had this constant feeling like my eyes couldn't catch up to where my head was looking and walked like a baby giraffe. After the first day, which included a trip to ER, a consult with the ENT, and a trip to get my steroid prescription, I felt more able to do little things, like get to the washroom on my own, shower, and make the small trips to the couch from my bedroom upstairs. From then, it was a painfully slow and steady improvement with good and bad days... nothing like those first 12 hours, but I had constant dizziness and the feeling of the ground moving under my feet, like walking on lily pads. I started VRT with a physio on day 3. I think this was key to my somewhat quick recovery. She was a friend before this all happened and assured me it would go away. When you have someone who can look you in the eye and tell you that you might have a long road ahead but that it WILL pass and you WILL put this behind you, it means SO much and lessens anxiety about the "will this ever end or is this it?" thoughts that we all have. We all have them. Even people who don't think they have them have had that fleeting thought in the beginning. I did VRT every day, 2-3 times per day and worked on doing "things". I can do another video on that if you like. It was helpful and is a bit hard to explain. OK, so 2-3 weeks I was depressed as "google" and my ENT said it would likely be gone by then. Felt defeated. But, found the online FB support pages on week 4 and suddenly I was reassured that many had it longer than a few weeks and did eventually find their way to recovery. At exactly 6 weeks and 2 days, I woke up NOT DIZZY!!! I still felt "off" but not dizzy. Mornings are my worst, so this was a very welcome development. From 6 weeks and 2 days until about 12 weeks, I went from feeling "off" all the time, to having the odd good day, then almost all were good days and I found myself going the day without even thinking about it (Can you imagine??? It consumed me until then, so to go a day doing normal things??? amazing!!!). Over the past 3 months, I've only had a few moments where I felt off... like if it's really rainy or if I'm really stressed or tired or sick (I've been sick 3 times), I'll have just an hour or so where the feeling creeps back, but I think it might just be anxiety... because usually, I can just go for a walk and come back completely fine. So, as time passes and the worry of it "coming back" decrease, I'm back to normal life. It did permanently take the hearing in my right ear, but I'm dealing with that and it is a new normal. My ringing in my bad ear has decreased so much that I don't hear it unless I think about it. It is there constantly, but it kind of sounds like bugs on a hot summer day, so it isn't that bad, there are worse sounds. I am so thankful to be a recovery story and hope to help people just like you as other's have helped me through this process. Remember Pili when you recover to try to help someone behind you. Only those who have been through this can truly help. Only we can know how it feels to have labs/vn. Hugs
Hello fellow friends, My attack of VN occurred in November 2016, which resulted me spending 7 days in hospital. I had 2 Cat scans, an MRI, ECG, Echocardigam... etc..etc. Ive Suffered with all sorts of symptoms for about 7 months. Swaying, bouncing, blurred vision,dizziness, headaches, anxiety, panic attacks, neckaches, bright lights, sensitivity to all sorts of physical and emotional feelings, etc.. My message to all is YOU WILL RECOVER. You have to ACCEPT , and I mean fully accept all these strange feelings, it will be difficult but you can do it, your body has temporarily gone into a state of sensitization, don't shrink away from them. They are all part of your recovery. Your mind, vestibular, occular system and body joints have to be all retrained, so the most important thing is DO NOT sit around waiting for recovery. You HAVE to keep MOVING,be physically ACTIVE, Your brain will automatically carry out a process called COMPENSATION while you are active. DONT avoid situations (shopping....) or anything that makes you dizzy or brings on unpleasant symptoms ,these are the places that recovery lies. You will probably have to stop driving or operating dangerous machinery for a few months, confidence WILL return. Carry on living your life to the full and let TIME PASS, however long it may take,. The other thing to get checked Is or BPPV, I ended up with bilateral BPPV, this was resolved over a few sessions, 5 minutes per session. BPPV will affect your recovery from VN.
Couldn't have said it better!!! Love this post!!!!
Hi Amar, thank you for your post. Did you get diagnosed with bbpv at an ENT clinic? Is the treatment for bbpv similar to VN such that it involves doing lots of rehab exercises? Many thanks
Amar Bansel thank you so much for this message,i needed it,as my symptoms made me scared
Brilliant positive message thankyou Brother
@@SharonHen Hi Sharon! I have this condition called vestibular migraine as diagnosed by my neurologist. Please let me know if these exercises are going to help me with my condition as well. I have dizziness, balance issues while walking especially when I'm out. Ringing in my ears as well.
Hi Sharon. So glad I found your videos. I am week 8 of severe vertigo due to VN. 9 weeks ago I was a healthy active woman. Reading your post and watching your videos gives me hope. I am a nurse practitioner and have a very active life. I have seen a great MD and have been doing VT for 7 weeks. Can not wait until I get my old self back
Hi Patricia.
How are you doing today?
Thank you for posting this video! It was 100% helpful and 100% effective to treat vertigo. Wow! It took about 2 weeks of Vestibular Rehab exercises. " Really did the trick!
Can't overstate how glad i am to have stumbled onto your videos. Very uplifting. About 3 months in for me. Been an incredibly scary and dark time to say the least, but staying hopeful and positive. Prayers and good luck to all watching this. It can be beat!
How are you,? Did you fully recover
Amen
Hello Sharon, thanks so much for helping! Your exercises help me to overcome vertigo years ago, and now I am sharing your video with a person that also needs help. Very best to you!
Hello, can I just say how happy I am that I came across this video?! I am coming upon the 3 month mark that I have been dealing with this, well let's call it intrusive CRAP. I woke up an early August morning with the room spinning. Waited over the weekend (I only spun on my right side lying down, so already was doing my own detective work) and went to the GP. My BP is what got him most concerned. He told me I had BPPV and told me to look up the exercises. Yep, I did the Epley maneuver and was successful. HOWEVER, I was left with what I called leftover dizziness. It was more like swaying or lightheaded or occasional not feeling "quite there".
But, the GP was too hung up on my BP which was like 140s over 90. I had never had high blood pressure before and figured it was because I was panicked all the time because of not feeling right (why my family doctor couldn't follow this logic is beyond me). So the whole month of September and up and including now I have been on HBP meds, which, guess the side effect, is dizziness and fatigue! JOY! I keep cutting it in half, even when he lowers the dose.
I actually went to my gyno to rule out any kind of menopause issue (I'm 46) and SHE was the one who referred me to an ENT and a Neurologist (and no, I am not menopausal). Thus far I have seen the ENT and will see the Neurologist at the end of the month. The ENT said I had vestibular neuritis and that right now I am in the compensation phase. He provided me with a list of exercises and while I was researching exercises I found this video! YES! SCORE! (Might I add that the ENT in so many words, said the BP meds were playing with me, I drag all day and feel like poop, then by late afternoon feel more like myself. It is then and only then when I can tell how I am progressing).
So tomorrow I go to another referral, the one and only one from my GP which is the cardiologist. I am hoping I can talk sense into this person, because I am of the feeling I do not need these meds. The BP meds just complicate things. I can tell I am doing better, I am not great on some days but still MUCH MUCH better than the beginning.
Sorry so wordy, but that is how I am and I feel as though I have made a connection. A great, positive, joyous connection! I am so glad I found a ray of sunshine like yourself. When you say I WILL get better, I believe it. I need that. We all do. Thank you for saying it over and over again to all of us. I needed to put my mind in a good place and feel CONFIDENT about it. And if you believe it, only good things will come. Thank you so much for being such a POSITIVE force.
Were you having any ear symptoms? What made you think it was menopause?
My blood pressure went to 157 over 100 before I even knew what was going on.
You are my new best friend! You literally sound just like me, but my son since birth who is now a teen has lived with this his whole life. I truly believe this caused part of his learning disabilities and many other problems for him. I dont think he realized it because he has always had it. Even the bad vision in one eye! Your video is perfect. Thank you so much for taking the time. I can try to help myself because right now I am working with tons of specialists (money) to help him and of course I come last :)
Hi Sharon, thanks so much for your video. It helps tremendously, and now sharing the information with a friend . Best wishes!
Vestibular neuritis started 10 months ago after getting covid and a really bad sinutitis infection which lasted 18 months. I got a ct scan and it showed a badly infected tooth going into the sinus cavity. I had no pain or discomfort from the tooth. So the tooth was extracted and the sinutitis was finally gone. Sadly the Vestibular neuritis is still there and i use 2 walking sticks indoors and a wheelchair when outside. My children look after me. It is very scary and depressing and isolating. My heart goes out to anyone is going through this. I try to have hope and pray every day i will return to my old self...
I’m so sorry you are going through all of this. I’m learning so much about teeth and their connection to different parts of the body. I’ll keep you in my thoughts. Any journey with a vestibular disorder isn’t an easy one, and yours sounds particularly difficult
Thank you for posting this video. This has inspired me. I've been able to drive and work normally, since it seems the damage is split between mild swimmy dizziness and some serious tinnitus. It's been over two months, though, and this whole episode has been maddening. Gotta work hard.
I have had tinnitus since my initial event... about 2.5 years ago. I will say, my brain has somewhat habituated to the sound and I can go days without thinking about it. It doesn't bother me... but it's all relative. Keep going. My tinnitus was still bothersome at 2 months in. It's amazing what you can get used to with time.
hi david im in the same boat as you coming up on three months, lets commit to the therapy and rebuild those neural pathways! theres a lot of success stories but they all come with time and persistence.
Thank you for taking the time to make this video and share it with the youtube world! I have lupus, and in the last 6 years have issues after being on trains and boats. I have been on medications and thought I was doing better, but recently had a flare-up after a few hours on a boat. I am going to try your techniques! Thank you so much.
Valesia! I'm so hopeful for you. Good luck with the exercises. The main thing is to keep moving and keep calm. Anxiety and vestibular disorders go hand in hand, so hang in there and keep going. :)
i have this in some form too..v extreme when it happens but no concise diagnosis. no advice on therapy - yay for internet and the gift of sharing! thanks so much!!
Great post. , as of late I have been experiencing a bit of vertigo . I do have tinnitus in my left ear but no hearing loss . I remember doing similar exercises which I believe definitely help. Thank you for posting this video , great reminder for me .
Has anyone that lost there hearing regained it or got it back ???
Thank you for sharing. I have been having problems for a month now. When I had the first episode attack, I couldn't even open my eyes, get up or anything. My bed was the only place I was safe. Hospital did all the tests, MRI, CT scan, blood work, swabs, saw a neurologist a vertigo expert, went to see ENT, now physiotherapy. I can walk not not straight, vision is weird, moving too slow or quick is different, I feel taller, I get tired much quicker. Your approach is great and seems to help me so thank you!
Sounds a lot like how I felt one month in. You'll make it through... just keep moving. Walking every day and knowing it will pass go a long way.
Sharon Hen Did you experience ringing in one ear for a long period or time, if so how long? I was told it could last 6 months and that my hearing could be affected for up to a year (worse case scenario). Thanks again for your video it is really helping people. Its people like you that make a difference.
I still am 100% deaf and have a low ring in my right ear. The hearing loss is likely permanent for me, despite early steroid treatment. I've learned to tone out the ringing and hardly notice it anymore, but it is there all of the time. Sounds like the hummmm of bugs on a hot day... not a horrible sound really.
Sharon Hen 100%... wow. I had a hearing test done and they said that I had lost 20%, but that it should come back within 6 months to a year. I still have that ringing also, I'm getting use to it also. The ENT said that having been given Prednisone (steroids for 10 days within 2 days is what saved my ear) I was taking the maximum allowed here which is 12 x 50). I had my 1st appointment with physio and I have exactly the exercise you're mentioning.
Yes. I took my first steroid pill the same day as my hearing loss. 1/3 regain hearing completely, 1/3 regain some hearing, and 1/3 are perm. deaf. Honestly though, it really doesn't bother me. At first, I missed the stereo sound of music. I'm a runner, so listening to one ear bud felt a bit strange, but I can honestly say that nothing feels weird anymore. I don't even remember what stereo sounds like, so just a new normal now. No one would know I was deaf in my right ear unless I told them. I don't miss much... just the odd time in a busy loud environment. I'm SO excited you are starting physio!!!! It is the road to recovery!!! So excited for you. This illness is the worst and recovering from it is the absolute best feeling.
Anyone here in the depths of it, my attack was March of this year, worst spell lasted 8 weeks. After that I was very up and down. I was undiagnosed for the longest time and recovered using sheer will-power haha but it is possible. It really truly is. After 4 months I was back to work, didnt feel great but pushing myself back into regular activities brought me the fastest recovery. I'm only now getting onto vestibular exercises, but I'd say I'm 80-90% recovered just though blind faith and willpower without a diagnosis as it all happened during lockdown. You're gonna be fine! Don't give up x
Hi, how are you doing?
Sharon, thank you so much for sharing this video. Feeling to similar after an attack of BPPV. My specialist appointment isn't for a couple of months. I have started to do some gaze stabilization and balance exercises and feel small improvements already. Bless your heart. Nice to feel not so alone.
BPPV is so annoying... but the effects are temporary. Hang in there
How are you know Clara ? I have residual dizziness too after bppv.
Hi Guys! I think this channel is realy realy helpfull. You can see that you are not alone and there is a lot of people like you. Be proud of you that is the most important thing and don't give up!
Hi Sharon. I want to thank you so much for making these videos! They are an amazing help and encouragement! I am just so grateful to you. Very best from Denmark :-) Merete
I'm just starting with my exercise. I hope it works with me. I've had this vertigo for a year now. I don't wan't to suffer anymore since I already my conditions because back then I had no idea. Thank you for this! 💖
You are a beautiful inspiration. I have been suicidal and hopeless over this to be very blunt. I am jealous that you knew what was wrong with you and I don't have those answers but I am praying I will find them very soon. I can't believe they didn't offer me a steroid when I went to the ER. Now I'm very scared that the damage could be too bad. Also, is a steroid nasal spray something you have to have prescribed?
So sorry that you are in a hopeless spot. Know that many of us feel hopeless, but that it is a horrible illness that you WILL recover from. I didn't have answers right away. In fact, I was SO anxious and nervous in the beginning, when they were checking me for stroke, MS, Menieres, brain tumour, etc. I even had to start to talk to my kids about heaven... still brings tears to my eyes thinking about how I literally thought I might die. I still can't believe it happened to me. I went for a while without a diagnosis (waiting for an MRI, MRA, etc), but most of my symptoms suggested viral labs and when I joined the FB support groups at week 4, I met SO many people suffering with the same weird often strange symptoms (muscle weakness, numbness, weird heart rate, etc.). I think the BEST thing to do is to join a FB support group and it will prove that you are NOT alone. Someone today posted that they had been crying for 4 days and were contemplating things they should not be and they had 20+ responses in a few hours of people who have lived those moments. We are here to help!!! You are NOT alone!!!
STRAWBERRY FIELDS ! FORVER ! I WISH FOR YOU LIGHT AND BLESSINGS ALL THE DAYS OF YOUR BEAUTIFUL LIFE ! KEEP YOUR HEAD UP HIGH REACH FOR THE STARS ! GIVEN TO US BY THE GOD OF OUR FATHERS ! IDA
Ida Guerra thank u..u brought tears to my eyes
STRAWBERRY FIELDS FOREVER !
Remember somewhere out there , there is someone >>> me
Ida Guerra thank u :'(
Thank you so much for posting this. My last few months have been absolutely terrifying and I still don’t really know what’s wrong after all sorts of mris, blood tests, etc. I haven’t been able to as much as get to the bus stop or buy my own lunch since this all started... I still feel as dizzy and weird as ever but I feel a bit more hopeful now at least.
Thanks for making this video. I have suffered a long time with vestibular neuritis. It was diagnosed as labrynthitis at first...anyway ive felt mostly the same since 2014. I haven't really had access to physical therapy due to insurance and money issues. I have some days where I feel ok but here lately its been bad again...I'm gonna start trying to be more consistent with these exercises. I can do pretty much anything now days without anxiety because I adopted the mindset of "all the weird sensations are from this illness nothing else!" But its still hard sometimes. I know it will get better I just have to find the time to actually do these excersises...how many times a day do you recommend doing them?
Merci Sharon for your help, I have been just diagnosticed with VRT and I already know that with your help I will recover faster.
mon plaisir Martine. Keep moving and welcoming those dizzies. If we can train ourselves not to be afraid of getting a bit dizzy, we can calmly help our brains compensate. Good luck in your recovery
Hi Sharon. I have been in VRT for almost 3 months now. My symptoms have gotten better but just wanted to see if you experienced the same sensations/feelings as you recovered and healed. I am having more good days than bad but big weather changes seem to flare it up where I will feel just a little more of a sway sensation on bad days than usual. Also I am running at the gym on my treadmill for around 30 mins but after I get off I still feel a slight buzz sensation that takes a little while to wear off but not as bad as it used to be when I first had my vestibular event. I am moving and walking around my kitchen much faster now but morning time is still a little iffy because I start my day moving around quite a bit to fix everyones breakfast and I feel a little off balance and have that sensation but I push through it and it has gotten better the past couple months but SLOWLY. I still have a heightened sense of hearing awareness where loud noises bother me a little bit but not as much as before. Also different lighting and different locations still give me a different feeling but not as much as before. However, seems it just takes a long time for the sensations to gradually disappear. Does this sound right as far as how your recovery went? There is nothing that I can't do but now just waiting for the last of the sensations and feelings of slightly off to go away. Again, things have gotten better but it has been a gradual and slow process. Was this what it was like for you? Just really wanting to know details about your day to day feelings/sensations as you recovered. That will help me to know that I am on the right track!
Weather - absolutely affected me for quite a while, especially changes in barometric pressure. Treadmill - Excellent job first of all. My first time back on a treadmill was quite disorienting. I felt ok on it, but when I returned to solid ground, I felt like a floating blob of jello. Overall, you are correct. Recovery for many of us is painfully slow and symptoms seem to dissipate quite slowly. Setbacks are common and you have to prepare mentally for them in the first year and just know that whatever setbacks you have, they won't be as bad as day one/onset and that they will be short lived. Sounds like you are following my recovery path, only you are doing better at recovering faster :) I didn't make it back onto the treadmill until 5-6 months. I was running short distances outside, but that is all. Great job. Keep going.
I just subscribed! I am going through this too. I am going to follow these exercises along with the ones I was given to do from the hospital 😁 I am just super grateful that I don't have a brain tumour, which is what the doctors originally thought. xx
how are you feeling now?
Hii how are you doing now
I haven’t had any problems for around 2.5 years, I’ve been really fit and healthy after my awful time- I had it for around 7 months.
Now after a bout of food poisoning I’ve woken up with it, I’m so angry and depressed because I know how bad it was. It gave me severe anxiety and I swore I would try and do everything to not get it again. Well here I am…the worst day of my life.
Time to start doing these exercises and getting back to normal AGAIN.
A late reply. Hoping you are already on the mend. Maybe this will be your last time experiencing these feelings
Thank you so much for your videos that I only found today! You're a ray of hope in what has been a horrendous few months of imbalance, dizziness, nausea and major anxiety! I have been referred by the ENT specialist to get VRT and am hoping it wont take ages for my appointment to get here. In the mean time I will practice your exercises to get myself started! I wanted to ask you, did your dizziness/spacey imbalanced feeling get worse when you started your exercises? If so how did you cope with that? and did you get bad nausea when you started them? I just want to be prepared because I really don't want to throw up! I was given Zofran too at the start of the illness, do you think I will need to take a Zofran before I start the exercises to prevent getting sick? Thanks again for everything! :)
Hi Ruby! Sorry that you've been hit with this, but I'm happy you found my video and I encourage you to join some of the FB support groups as well. They are a great wealth of information and there are people there who have tried many different things and I found myself scrolling back through old posts and gathering so much info and support. The vestibular hope FB page is a good one as is the labyrinthitis support group. There are even ENTs and VRTs on those groups who, for the most part, remain silent, but will chime in once and a while with their opinions. Now, to answer your questions, I DID find that the VRT made me feel quite awful in the beginning and also whenever she would start me on a new one. I didn't take anything beforehand, but in hindsight, it might be a good idea if you are still very nauseous. I broke out in full body sweats and couldn't drive home... but I was on day 3 of the illness... so still in the acute phase and still battling the virus, so don't be scared, this is unlikely to happen to you. I knew enough (I have a medical background), to know that getting dizzy was the ONLY way for me to re-train my brain to get better. You literally have to get all your dizzies out. So, when I got dizzy, it actually made me hopeful and sometimes I would even welcome those dizzies and try to push harder. Every one you live through is one less you'll have to live with. Keep this in mind when you start with your VRT. Welcome those dizzies!!!
Anxiety comes hand and hand with inner ear issues. Take comfort in knowing that what you are feeling is quite typical for someone with VN or labs and will pass as your symptoms lessen and especially after you get on a VRT program. Some believe that after the actual labyrinthitis passes, the anxiety will mimic the symptoms of dizziness and make you feel sick even when you are recovered. I have never before suffered anxiety, but had full on panic episodes during the first three weeks and some of these manifested physically as increased BP, rapid irregular heart rate... I was also hypersensitive to my symptoms. If my heart skipped a beat, I would freak out and spiral into a panic. I learned to "ignore" my physical symptoms more and it helped me control the anxiety. Maybe I'll do a video on the anxiety.
How do I go about getting someone to refer me to VRT? My ENT was awful and dismissive. Made me feel like anxiety was my problem. He said no one and nothing would help but time. My husband and mom were with me and could not believe how horrible he made me feel. I cried so hard when I left. 8m so happy 8 found this and ive requested to join your facebook page . 8m watching your excercises and I feel some HOPE!! IM NOT ALONE. I can not tell you how terrified I am. I dont understand what I did wrong. I want to beat this and retrain my body!! I hate weird medical stuff and I tried to get help and they went help me.
Hi Sharon, thank you so much for making these videos ! , Iam five months in with VN it's truly been the most scary and awful few months of my life , I've shed so many tears, Iam doing much better still having off days but my physiotherapist has been working with me to do my VRT , I do it every day 3x , it's been a life changer ,they still don't know if the damage in my left vestibular nerve is permanent or if Iam going to make a full recovery but considering I had to be taken to the bathroom at the beginning then had to use a walking cane for a few weeks Iam able to do most things I've even started to work out again and I can't believe I've been jogging on the spot! , Iam getting better in stores , but this damn rocking sensation is almost all the time, I've managed to get my anxiety under control thank god ! , Thank you so much on my dark days I watch your videos for hope , you have helped me more than my own Drs who are clueless about vestibular illnesses , many best wishes on your recovery love from Scotland !
Bjorn. Hi it's been a year now still have it , good days bad days but can do everything I was doing before I got ill , been diagnosed with pppd and vestibular migraine after my vestibular neuritis, trying to stay positive, hope you are well ? vrt was helpful in beginning.lyn
Bjorn Lothbrok , good luck with everything, it's such a difficult illness , I never thought a year later i still would be having issues . Take care .
Hi Bjorn. Thank you , yes keep in touch , when I first got ill I had a lot of support but nobody that had been through the same as me , I will give you my email .
lyn.forsyth76@gmail.com
Hi, I’d like to share my story...to preface this I’m 20 years old. This all started back in late July/early August, I went swimming at my cousin’s pool and I did a cannonball and as soon as I hit the water and went in both of my ears popped BADLY, and I noticed I haven’t been quite the same since. I’ve had sinusitis/strep throat/and two ear infections since. The dizziness has been consistent since August. At first it came and went but now about Two months in, I live with it everyday. I’m currently in college and I find it hard to focus at times, my brain feels clouded, I’m literally dizzy all the time, I feel like I have to squint my eyes and fix my sight, my ears hurt, and I have headaches a lot too. Sometimes it feels like I’m on a boat as well. I’ve gone to my general doctor and every time he just gives me amoxicillin and I take it but this ear pain and dizziness doesn’t go away. I’ve gone to an ENT and the first time he said it was something with my blood vessels and that I’ll be fine, but it has persisted and I went today and I’ll be getting a balance test in November. Vestibular Neuritis sounds like a possibility. I rule out Labrynthitis because I haven’t had any hearing loss. Feeling dizzy is one of my worst fears because of a childhood trauma...at this point I’m feeling somewhat hopeless. I’ve been praying every night, pleading with God to make me feel better. I’ll see what the test results say when I get the balance test done, but experiencing this is so scary, especially in the midst of an extremely busy college semester.
Hi Thomas, it’s been 2 years how are you now?? Are you 100% I hope you answer I’m feeling hopeless as well.
thank you for responding , God Bless Pili
Hang in there Pili. You will beat this. Don't lose hope
One Sunday night after having a great weekend and finishing up with bible study, I turned left into my bedroom and fell into the wall. I laid down , thinking the dizziness would subside and it got worse. I ran to the bathroom and vomited for hours. I couldn’t get off the floor. My husband finally got me to the hospital, where they did a cat scan, mri and took lots of blood. Two days later, still in the hospital not knowing what was going on. Finally on day 3, one neurologist came in and diagnosed my condition as a stroke😳. My blood pressure , cholesterol, and heart were all fine. The radiologist report stated all clear. I finally got them to release me from the hospital and followed up with my family doctor. He prescribed steroids, nose spray, and ondansetron for nausea. Things got better , but I still referred to myself as a wobble, who wobbles. The following week a met with a neurologist who diagnosed my condition as labyrinth, viral infection of the inner ear. He told me it would take about 3-6 weeks before I felt better. Today is the end of week 4 and I’m still wobbly with blurred vision. Bending over to put on my shoes, looking up and walking as I try to turn my head , are still challenging. Any suggestions on how to improve quicker? Do you sleep elevated? Are you taking allergy medication? This experience has been really challenging, many days I don’t want to get up. Has anyone seen a ENT and were they helpful?
Vestibular rehab therapist at a physio clinic would be a great spot to start. The trouble right now, with everything going on with covid 19 is that it will be challenging to get in to see one. Walk outside every day (keeping your distance from everyone except a love one to lean on, routine everything about your day that you can. Keep your activity level up and consistent. Go to the bed at the same time and get up and out of bed at the same time, avoiding naps if possible. Some rate their days (1-10) and make note of any accomplishments they make. Focus on your gains. Have belief in the brains ability to heal itself. Know the role anxiety and doubt play and that, for many, it can extremely limit how plastic your brain is and prolong the recovery. You aren’t alone. I was still very much a wobble when I was where you are. I’m fully recovered now. You’ve got this
I really admire you strength and way of coping ,it's been hard for me I cry every day ,it's fustrating and painful , how do you cope it don't even seem.like your in.pain
Pili. I had a VERY hard time over the first few months. I didn't dare make a video in that period as it would have been very depressing and might cause someone behind me in duration to lose hope. I want to assure you that I have been there, right where you are and I can only tell you that once you start to feel better, and once you realize that it will pass, well, it's hard not to feel VERY strong and smile all the time and be just so SO thankful. It's been months since I've felt dizzy, and I still wake up every morning feeling just so relieved to not be sick any longer. I still have my moments where I get frustrated with what happened, but they are short moments now. In the beginning, I had to get my parents (I'm 36) to come and basically babysit me. I couldn't even cook for myself. I had to send my three little ones to childcare (Imagine the guilt, not being able to care for your own children). So, these are the things I struggled with. It just didn't last. For most, the horrible feelings ease and you gradually get back to you. Hang in there. Recovery for many is painfully slow. The only thing you can do is to look to those who recovered and find support.
Oh, OK! This makes tons more sense! Daycare and parents babysitting you. That is the only way it can work I swear. Thanks for this added info!
Katie! Hoping you weathered the worst of this storm with your littles at home. I've been thinking about you and hoping the worst is over.
Sharon Hen am hanging in there, supposed to start therapy soon just waiting on my husband new insurance to start ,so I could start therapy
I'm so happy you'll soon be starting therapy. I started so early and I'm nearly 100% sure that's why I recovered "fast" compared to so many. You are on your way Pili.
I Am Most Likely Getting This Soon...You Are BeautiFul
I am also 36 also , my husband been taking care of when hisnot working ,also my parents so I couldn relate ,hopefully city can motivate myself and be strong will like you and get healthy again
You will Pili. You WILL get better. It's really great that you are 36. We are relatively young to be having this... and it is to our advantage. The key is to get the anxious feeling under control and to start believing you will get better. For me it helped to think about it like this... If I was still slowly getting better from day 1, then it would only make sense that each day that I moved about, my brain would continue to compensate and heal and that I would continue to improve. It only made sense that I would get better. It would be really strange for you to slowly get better then just stop improving. Keep moving and you'll keep compensating... things like shopping and driving and cooking and cleaning will become less scary the more you do them.
Hi Ms Sharon Hen,
I am suffering through vertigo and I must say these exercises are really helping me to stay away from dizziness. Please tell me that is there any preferable time for these exercises?
Waiting for your answer.
Regards
Akbar
So happy the exercises are helping you. For me, and many others I've spoken with, doing them in the mornings really seems to help. In the beginning, our compensation is so fragile, that I almost felt as though I decompensated while I was sleeping. I'd compensate throughout the day, go to bed semi-ok-ish (not really ok, but better than the morning) and wake up feeling awful. So, I felt like doing VRT within the first hour or two of waking up really helped me "reset" my brain and remind it that it had been damaged and needed to compensate. I also did them at lunch and in the evenings before bed.
Hii akbar How are you now
I am so so happy Ive found you, I could cry! I'm 2 weeks in to labyrinthitis and have never been so scared of an illness before. I've been a GAD sufferer for a good 7 years and it's made my lab's seem worse! I know everyone has different time scales but, am i likely to still be in the acute stage? Should I be seeing improvements yet or do I need to battle on a bit longer? I honestly felt so alone but I feel like I have people to talk to who understand now ♥
How are you now?
How r u now?
You are just too cute! Thanks for showing so many exercises I was not aware of that very well may help me as well!
Thanks Ann!!! I think, really, we are only limited by our imagination and the exercises are likely endless. Flopping on the couch made me feel weird, so I made it one of my VRT exercises, 3 x per day I'd flop on the couch. Eventually, I habitulated to the movement and now I'm flopping no problem ;) ha!
HI Sharon! Thank you so much for your videos. They are really inspiring. I have lost all my hopes! I have Vestibular Hypo function, so basically my right inner ear is damaged and I had this for 7 months. I am starting VRT in two weeks but would like to do some of these exercises as soon as I can to try and feel better sooner and compensate. You do a number of different exercises in this video, for how long roughly should each exercise be done? Thanks!
You and I likely got sick at about the same time. I fell ill on sunday june 12th, 2017... so nearing the 7 month mark. I think that starting VRT was the key to my earlier recovery. I began on day 3. So, don't lose hope... I think you just haven't quite started on the official road to recovery. The length and duration of the exercises depends on how dizzy they make you. In the beginning, for someone in the acute phase... in the first 3ish weeks, I would say to just try one of the simple standing with your eyes open and closed for 20 seconds at the time about 3 times per day. For someone like you who has had some time under their belt, I would see which of the exercises makes you the most dizzy and work on those. Start with 2 or 3 exercises and see how you feel... three reps of each. For me, looking up and down made me feel GROSS in the beginning, so I made sure to do that one every day, a few times a day. I usually do three reps of each exercise, but in the beginning, I started with the standing ones with my eyes closed and open feet tandem or heels together. I think, even if we don't realize, anxiety can play a role after a few months. We need to face our fears of doing things that make us dizzy. Trying to live a normal life is key to recovery. The more you do, the more hope you will have that you will get this behind you. I hope I can give you hope... I have vestibular hypo function as well on the right side and damage was VERY extensive... it took all my hearing, numbed my face and damaged those little hairs in the inner ear causing BPPV. I was a "bad" case and here I am recovered. Join the FB groups: vestibular hope and labyrinthitis support group. There are physio and ENTs on the site and over 1000 people recovered and not recovered, struggling and thriving.
you give me so much hope! you are truly amazing. VRT starts today! Thanks:-)
I can't wait to hear how the VRT goes over the next few weeks. Make sure you ask your physio to check for visual vertigo as well as balance issues. I know some who had physiotherapists who only worked on balance and didn't address their visual issues. Hang in there... for many, it will make you feel awful for the first few visits/weeks, and might cause you to become discouraged, but don't lose hope. I have heard it time after time, those saying "I almost gave up VRT because it made me feel worse, but I'm so happy I didn't". Hang in there and if you remember, post an update on how it is going. I'll be thinking about you.
I'm so glad I found your video and one from a lecture concerning vestibular migraine. I won't go in to detail for the sake of being wordy. At work on June 22, 2017 I experienced dizziness first, 30 min later assisted to the rest room I experienced very violent vertigo. I noticed in the ER, for 9 hours, there were moments I could sit up and begged to quickly have the bed's head area lowered. I was admitted, then twelve hous later I had double vision except for looking right. Fast forward to three days after release I began researching. My primary doctor wasn't helpful. The neurologist gave me a prescription for vestibular therapy, but my doctor was focused on my 4th nerve palsy and it improvement ( it took forever to get an appt, it's a free clinic so I felt like a number). I researched everything in isolation. Started my vitamins particularly b12 for the vertigo. Went to work, 5 days short of a month from the initial crisis I started feeling anxious, walking towards the wall, needed assistance, sweating, neck tightening, things began to become blurry, nauseous, then came the migraine. If my doctor had listened to everything I said I would have been in therapy now. His only response was, "you can't drive. You need to take a. Uber or Lyft." Just by googling migraines and vertigo I found vestibular migraine that had EVERYTHING I go through. Now I know why grocery shopping even while wearing sunglasses didn't help and only tolerating short times being out. Thank you for your post. I tried not to be wording, I hope others who read this make a decision and fight for their health. I currently do some eye exercises associated with BPPV. I look forward to the vestibular therapy and will View your videos. Thanks for reading.
Oh Barbara! I'm so happy you seem to have figured it out. Unfortunately, not all ENTs and GPs are well informed on vestibular issues and with so many other things on the list that they have to deal with, we often are considered a low priority. Yes, VM could absolutely explain your symptoms. It's not what I have, so I'm not quite as knowledgable on the subject, but Svea has some videos. Might be worth a chat with her. She is also on our FB group Vestibular hope.
Thank you for sharing!!!
How long did it take you to start driving comfortable? Can you drive completely fine now?
100% fine and safe now. I know I began driving again too soon. I think I was only a week or two into my illness and drove to my ENT appointment (husband was at work, and I thought, I can do this???!!! crazy)... but had to call my husband to drive me home after the testing. I actually remember being wheeled out in a wheelchair as I couldn't walk straight after the testing he did for BPPV (which I also had alongside labyrinthitis). I sat in the ENTs office for two hours, feeling so unsteady that I could not stand. I will never forget that feeling, thinking my life and independence is over and gone. But, here I am 100% better, running and winning races, doing 24 hour call at the hospital this weekend, and continuing to fly and work all over Canada. After 4 weeks, I was safe to drive and be driven, but it wasn't until about 6 weeks that driving felt normal again.
@@SharonHen did u do a VNG
Sharon thanks for these videos. I had this three months ago. I thought I had recovered but a night out in NYC made me realize that I'm still a little off. It's comforting to know that you made a full recovery. How long did it take?
Sean!! Yes, I made a full recovery, but it took a while. So before I give you my timeline, I'll just say that recovery is different for everyone depending on age, level of activity, level of vestibular damage, etc... but the path to recovery for those of us with labs and VN seems to be the same... keep moving and keep calm and you'll get there... eventually. Fore me. I was only about 3 months when I made the video and I was back to running and all of life... but still having these odd moments. Like surreal light headed feeling or sometimes like a second where I felt like I was about to get dizzy, but didn't. I feel like by 4 months, this was practically gone. That said, until about 7 months, I'd have like a second of weird feeling if I was looking at my ultrasound machine and a fetus moved across my screen really fast. It was just my eyes adjusting. So 100% now, no weird surreal light headed strange off feelings anymore despite still leading a pretty busy and often times stressful life/job. You sound like you are well on your way!!!! So happy that you are pushing through it. Keep it up :)
Thanks Sharon! For me it's not a feeling of dizziness anymore. Just feeling kind of off in crowded places, and getting tired easily, despite living a pretty active lifestyle. Hopefully it clears up eventually.
That "off" feeling is how so many of us describe it. It's how the describe the indescribable feeling of something you cannot pinpoint but just something not right. It will clear up. Just takes it's sweet time. It is sweet though. When the fatigue and off feeling lift... it's really really amazing. People say that the off feeling and anxiety are the last to leave us as far as symptoms.
Sharon Hen last question! How were you treated initially? My doc just gave me anti vertigo pills and told me I'd be better sooner or later.
I had sudden deafness, so I was given a week of oral steroid and told there was a 1/3 chance of my hearing coming back 1/3 get some and 1/3 stay deaf. I was referred to VRT which helped. No anti-sickness meds for me. They are ok to use in the acute phase, but they prevent the brain from feeling the full effects of the damage, by masking your symptoms, so they can prolong recovery. Best to use them only in the beginning then talk with your dr or pharmacist about it. I have had a lot of people who recognize that it is anxiety rather than the actual illness causing their symptoms. Once you recognize this, it's almost easier to push through it.
Did you have a constant rocking boat feeling?
I do for sure. I would describe it as feeling like im floating when im laying down or sitting still. I was diagnosed with vestibular neuritis this past July but have had it since April 2019 ):
How r u now?
Hi Sharon, thanks for the video, very useful. I'm about 2 months in, had labyrinthitis a couple of times in the past but recovered relatively quickly at the time, various episodes of dizziness since. This time the initial attack felt 'different' somehow (the usual dizziness, nausea) but this time I also felt faint and it didn't follow a cold. Although symptoms have improved it hasn't completely gone 2 months on and I'm left with a sense of slight imbalance, clumsiness, tiredness, and some dizziness in the right circumstances and position (fitness exercising and stretches and looking up can really bring it on), and some left side tinnitus which is irritating at quiet times. Epley manoeuvres didn't seem to help at the onset.
I notice from the video at 2:46 for 25 seconds you appear to be concentrating more to the right side, is that because you are/were right side problematic or just a coincidence, because mine is left side, is the up and down side to side something I could do when walking the dogs (alone in the fields lol) as this would be an ideal daily time for me, should I actually focus on anything while I'm doing it ? also I'm assuming that your eyes are following the movement of your head and not trying to focus ahead (almost impossible anyway I grant) ?
Interesting that you mention you use nasal spray at 3:30 as I've always had sinus problems and a daily sneezing fit is common for me, and my belief is this caused the onset of the labyrinthitis this time.
Massive appreciation for any answers you can give please, just find it more of a nuisance tbh, and impacting daily enjoyment of life to the full (I'm 57, male btw),
Pleased you are better :)
How are you now? Do you have any tips for recovery?
@@JV-ht4vk Mine went completely in the end, I rgink with some people it's just a matter of time whle your body adapts to the new positioning. Still have occasional bouts of dizziness/labytrinthitis which are horrible at the time, but they normally get better within a couple of days.
Hi Sharon. Did you experience rocking as if on a boat, and heavy legs with gravitational pulling? The pulling is horrible and I am hoping VRT will help.
So many rockers in the groups on FB. I, for one, only rocked while in bed with my eyes closed a few times. I have heard others say that VRT helped with their symptoms of pulling and rocking. I actually felt like I was floating a lot. My legs felt quite heavy compared to my head (if that makes any sense). HA! So many of these things are challenging to explain, but yes, I've felt gravitational pulling... as if walking on a slanted floor.
I have had vestibular neuritis for 7 months now. Was misdiagnosed many times. Had to go to 2 different ents. Waited 4 months to get in to see one. This new lady I'm with says 3 months to heal of working with her. Gosh I hope this goes away
Sorry for the late reply Amy. It’s very frustrating and stressful to get misdiagnosed… but it is quite common. I hope, 10 months later, you are feeling much more comfortable in your skin.
Hello thanks for your video ! I had VPPB in oct for the first time in my life I’m 46 and 2 months later got it by NV had rotator chair treatment plus cortisone, I do have residual unbalanced and feel weird when I lay down. I feel pressure on my damage ear ( right side) I’m wondering is BPPV chronic? Can you get relieved for years? How it’s a lifetime struggle?
Thanks
Sorry if this is a stupid question but are you supposed to focus on the object as you’re moving your head from side to side. Also, if it triggers the dizzy then that is a good thing right? Thanks Sharon for taking the time to post this video.
Hi Joanne! Not a stupid question at all. Yes, you are supposed to keep the object in focus. It prevents you from moving too fast. I had to go VERY VERY slowly to keep it in focus in the beginning. You'll get faster with time and compensation.
@@SharonHen Thanks so much for replying. Yes, I have to walk very slowly. It's the looking up at things that is hard to do. Due to mild double vision, the optician said i have eye muscle weakness so has referred me to ENT. This has only happened since the labyrinthitis attack and whilst it is mild it is so frustrating... anyway I'll stop moaning now. Thanks for giving me hope xx
Hi, I had a very short vertigo attack during ear infection. After that I've had constant light headedness and sense of imbalance, not really a vertigo. The weird thing is that I can feel it the most when I'm sitting still, for example when talking with someone face to face (eyes focused). It can make me feel sick after some time. I also notice it the most while being at the grocery store or anywhere inside. I don't feel the imbalance in a car or while riding a bicycle. Do you know if these exercises can help with this as my balance is good, but the light headedness is annoying? Thanks!
I have the same feelings as you,I feel more giddy when a mall. How are now.Is your problem getting better?
I hope you are both feeling much better after so much time has passed. The exercises can help and be tailored to your specific triggers like moving slow.
Hi Sharon, I have suffered from this vestibular symptoms labyrinthitis/ vestibular neuritis for several months. All symptoms seems subside but I still have ear pressure off and on in my inner ears. May I ask did you ever experience ear pressure and what you did to make it feel better? Thanks in advance!😢
I’m sorry you are going through this. Yes, I had awful ear pressure/aural fullness. I was so desperate for relief I purchased an ear popper off of Amazon to help open my Eustachian tube. Unfortunately, it didn’t work (and was hundreds of dollars). I think I tried hot compress along the jaw, I began sucking on mints and stopped chewing gum, I tried to consciously relax my jaw, etc. the biggest help for me, was ear plugs. On the really bad days, I’d pop my pods in or use earplugs and it would feel better. I absolutely needed to use earplanes on flights too in order to tolerate pressure changes. Time is the biggest healer.
@@SharonHen Thank you for the response! I hope you are doing well! I think I am going to try earplugs to see how it works. Every time, I asked the doctors, they just can’t answer why the fullness there. My ear pressure has subsided, however, I would still feel fullness or ear pressure off and on. So there is no medication involved with this symptom for you?
And one question, Sharon. Did the ear pressure eventually go away by itself for you?
Hey wanted to ask you few things...did u have persistent rocking dizzy sensation as if u r sitting on boat or bouncing always present never going away..my dizzyness is 24/7 pressure at eyes level near ears n facial numbness..did u have all these?...other than that also have BBPV....did u take any meds or had anxiety? I noticed that every time I get flu or sinus congestion symptoms get worse again ...will we have to do these exercises entire life in the fear of symptoms returning after sinus flu episodes ?
How r u now?
You have a lot of the same symptoms I've been having lately! I feel weird if I lay on my right ear. I also have a lot of hearing loss in my right ear. I also have been getting headaches every day for the last three months. I went today for balance testing.
The good news is that I'm not having symptoms anymore. The deafness I am stuck with for now, but the rest has been gone for 3 years! Actually, I think today is exactly 3 years. I remember counting the days and now the year mark passed me by until just now. Good luck in your journey. It isn't easy, but you must stay consistent and positive in your outlook. Keep moving and keep calm.
Hi how are you doing mow?
Hey Sharon! Just wondering if you take any medication for your symptoms. I did at first but now I only use nasal spray and cetrizine.
Hi David. I had to have a one week round of oral steroids because of my associated hearing loss (pretty standard where I live, and did help me regain some hearing in my right ear). I had zofran for the extreme nausea I had in the beginning, but only needed it the first three days. They give it to cancer patients and post surgery for extreme nausea and it helped me when I was desperate in the acute phase. Now, it's just the steroid nasal spray for my blocked eustachian tubes, and some vitamins (B12, for energy, gingko for inner ear health, Vit C and echanachia to ward off the dreaded back to school colds I do not want to catch from the kids). I drink a lot of water. I find if I get a great sleep, I feel better the next day. Hope you have a quick recovery David. It is an extremely challenging illness.
Sharon what nasal spray you use for eustachian tube dysfunction?
I use Dymesta?
Thanks for the video.. It's great..
To all whom have this horrible illness you will recover just take so long time.
i hope so. it is tiring and life is horrible. I had dizzzines in the bed when i turned my head to the right and afer 4 days tried epley exercise and i fixed dizziness totally but some lighheadedness doesnt go away, today is 24th day. I cant describe the feeling even.it sometimes comes and goes
@@aysebal7421 hey how are you its been 7 weeks for me its getting better i feel
@@hxhxhxx7886 it comes and goes . mine also around 7 weeks. I mostly sleep and feel better. I sometimes have headache because of stress I guess. I found a vertigo center , I will go and I will get all the tests . then I hope I will write here the good results.
how long? nobody believes me even. they think I invent and it is just an anxiety. I became asociable and passive. I am happy just sleeping.
ayse bal
You will recover but it takes years but in saying that you will get small improvements weekly that you need to focus on so you don’t get stressed. You must push yourself to move and train your brain to build new pathways as the other pathways are damaged. Don’t take medicine it just makes you worse .. find a neuro physiotherapist who will give you rehabilitation exercise program that will work. Or go on you tube and do the physio balance movement they offer.. the longer you just sleep the longer till you recover. I was so bad that I had to start by just walking and balance in water to be safe . That’s when I started to recover faster. It’s a true debilitating condition that no one can physically see from the outside its nerve damage but the brain grows new paths for messages to travel along so recovery is just slow.. but you WILL heal . Eat well.. move..believe you will. 🙏🏻
Thank you, very helpful :) get well soon x
hi Sharon, I had labyrinthitis since end of Sept (last month). Doctor treated me with high steroid and the hearing come back. Still doing VBT exercise. Now it's 5 week and I almost recover totally. I took gingko biloba for vertigo and it help. When i stop the gingko biloba, I will have migrain. Do you have migraine after few weeks? Cos last time, I only had vertigo. Thanks for the video
How r u now?
What's the goal of these exercises? How are they supposed to heal you? Is the goal to make you dizzier? Should I make up exercises that make me dizzy intentionally?
The goal is to trigger symptoms in a methodic way to expose the brain to them calmly and to generate new functional neural pathways. The need to bring on symptoms without throwing off your sympathetic (stress) nervous system. You absolutely can just make them up, finding your own triggers. Just make sure that you repeat and routine the heck out of them. NEVER skip your VRT each day. This is key to recovery. Eventually, you'll be able to slowly let some of the exercises go, but it will be because you are feeling better not because you are "too sick" "too tired" to do them.
The every day man are u taking meds?
@@marioavila9021 No I stopped them after a week. Meds generally compensate from an external source and might delay healing.
@@TheEverydayManChannel how so?
@@TheEverydayManChannel what kind of meds did u take
Thank you Sharon thank you thank you!!
hi, glad to see that finally someone helps. i have tinnitus roughly 3 months and i m constantly with headache or dizziness .( i dont really be able to describe what exactly it is ) also i have a sleep apnea. when i m walking i feel that the movement its not actually this that i used to have. further more sometimes when i am going to sleep, the moment i am getting into the deep sleeping , a have spinnings . is it vertigo or panic attack ? and are actually these the symptoms of labrynthitis?
i have seen 7 doctors, i have done a lot of blood tests and everything is fine , only a low level of b12.
i have visionproblems, such as my hearing doesnt sync with my vision. my vision sometimes goes fast and other super slow like watching an old film
tinnitus and dizziness and even the spinning can all be the results of labyrinthitis. Many Dr's can only guess as to the diagnosis and it is usually just the result of your history. I'll respond more when I get a moment. Sorry you are going through this. Might be worth taking a B12 supplement.
I've heard other people with vestibular issues talk about this derealization. Much like you describe it... like you are living live as it happens, but in some sort of dream. I can't say I've had this, but I do know people who have. Look up Edd in the Facebook support groups. He talked about his struggle with this a lot. He is on the labyrinthitis support group on FB. For me, I just had a lot of difficulty focussing. I'd be watching tv and find myself unfocussing my eyes or looking just at one corner of the screen. In regards to your first post. It could absolutely be related to anxiety. Someone just posted a great article on anxiety and vestibular disorder on the fb group Vestibular disorder support group. I encourage you to join in the conversation there. Hoping for your recovery.
does the nerve damage repairs or just the other side compensate
It depends. Here is how I understand it: The nerves themselves, if damaged by swelling have the potential to heal themselves if you are able to relieve the swelling quickly through oral/injected steroids or other means. They take a very long time to heal... months, rather than weeks, and often time, there is permanent damage to the nerve. The extent of the damage varies from person to person. For many, some sort of compensation must take place for us to feel "normal" again. Hope this helps.
hey, I'm happy I've found someone putting a more positive spin off of this. I hope you don't mind me asking you this, since you've since recovered. I had a terrible vertigo attack about a year ago & after it wore off, it left me feeling off balance. At first I felt like I was floating, now I just strangely feel off as if one side of me is heavier than the other (as weird as it sounds) I just feel disbalanced, I can rarely go into a grocery store as I begin to feel like I'm moving. I developed tinnitus later on (no hearing loss) and some tmj even though the doctors can't diagnose it. Do you think in my case these exercises could help get me back to balance? Don't know what else to turn to:/ much love x
Absolutely they could help you. Believe it or not, going to the grocery store can also help. Exposure exercises helped me to recover. Little trips to the grocery store, mall, restaurants, etc. You have to do the things that make you dizzy, and go to the places that make you dizzy, over and over again until they no longer have an effect on you. Hang in there. Eventually, when you return back to all the activities you used to do before getting sick, your brain will compensate and you'll feel more like yourself again. Good luck!
thank you for taking the time to reply, definitely staying focused and hopeful x
I feel like you
Same
Excercises will help, go see a osteopath clinic they'll will help with the treatment
Hope you're still open for replies! I'm 2 weeks in, first week was awful, I haven't had any nauseous feelings at all thankfully, this has mostly been visual for me, i feel kind of disconnected with the world a little, im back at work now as my body can function fine, head feels dizzy when looking up and down but mostly feels like things are popping out at me when i look at them (kind of like a 3D movie but with everything). Have a headache that's kind of on and off too... I will try the exercises tonight for the more visual side of things and hope results come soon, I've heard people can take any amount of time to recover on this, it is literally a solo battle. Depression hits but sometimes thinking that life may be stuck like this but my will power kicks in to tell me otherwise, it's like the old me is fighting this new me knowing this is not how it ends kinda thing... Thanks for the video, how long do you think the average case may last and what steps forward would you recommend from this point?
Thanks again!
back to work already? Amazing!!! Proud of you. Work will help you compensate faster. I think I only started back at week 4 and it was only part time, so BRAVO! I know that for many, the first, 6-16 weeks are rough, up and down, anxious weeks. Then, many of us begin to see glimpses of normal again. We start doing things again (which you are already doing) and realize that it won't be a forever thing. You might get little blips here and there for the first year, but so long as you keep moving and keep calm, you'll continue to compensate. The only thing for you, given that you have headaches, is to make sure you are dealing with an "itis" and not something like MAV. People with MAV often have auras, which I never had, and benefit from medication. I had headaches in the beginning, but no migraines, and had to look up what an aura was. So, VRT, time, staying calm, and honestly, trying not to focus on it really helped me. I had to stop googling and even had to detox from the support groups. Lots of things will trigger anxiety for you in the first 4-6 months, so just be aware of the impact anxiety can have on your vestibular system. You've got this. Keep moving and keep calm.
Hi Sharon, thanks so much for the reply honestly. I've just had a brief look at MAV and I have literally none of the symptoms besides dizziness, there's no sickness or vomiting, the headache is moreso on the front back and both sides of the head and comes and goes (could be anxiety/stress tension headache). no numbness and no flashing of lights really although i do have a buzzing from time to time (tinnitus i believe, but no hearing loss). I'm seeing my Doctor tomorrow to just update them on my situation and see what they can do (ask maybe for some anxiety helpers/antidepressants although i know taking these too much can hinder your healing process as some have found so i will take them only when really necessary). I'm going to mention VRT and see what they can do for me, just tried your looking exercise and feel dizzy typing this out even so i'm fairly sure i have the visual/faintheaded dizziness instead of the spinny sensation of vertigo most have (which may explain the no sickness part). Thanks for the positive help and fast response. The hardest part of this is having people look at me thinking I'm normal but knowing in the back of my head i am far from it (just good at hiding it). The weirdest thing for me is i find i have some symptoms that others have but i'm not bedridden or anything even in first week i could walk fine but just couldn't move my head otherwise i would feel messed up, it's just the brain foggyness and lightheadedness that i have really I can't explain the visual effect at all really it's like i can look at something but when i do everything surrounding makes me dizzy even if i change what i'm focusing on everything else will still have the same effect, best i can explain (and also moving head up down left right doubles the effect). Well I've rambled on enough so thanks for reading this! I will try to watch my diet, continue with these exercises as if they are making me dizzy i can only guess that means they're working and i will get plenty of rest and fluids in me. I hope this is VN/Lab and nothing anything more serious and i also wish this feeling goes I'm only 21 and kind of want my life back so i can go forward in my job/go out and see my friends. this has changed my life though to some extent, IF and when this is over i am gonna do some crazy live life on the edge stuff to make up for the time lost!
Thanks so much again and i wish everybody else out there with the same symptoms or worse to keep at it, it might be a solo battle but if we all help and support eachother like you have done maybe we'll just pull eachother through! Mind over matter. F*** This Thing UP. Love To All.
Sharon..did you feel like when viewing everything..that one eye was higher than the other....causing you to have a head tilt or veer to one side??
I have this issue. I'm always tilting my head when talking to people or watching TV because being level feels weird!
Hii sharon ..i already start to do ur exercises and i felt the difference from the first day... but i would like to ask you about the last exercise (the whole in the paper) you move the eye only or the head? ...and if you did another set of in addition to these for ur recovery ? thanks.!!!!
AA TV Adventures! I am SO happy you saw improvement. It was so reassuring for me when the exercises made me less dizzy on day 2, and 3. They became easier to do. My physio had me move my head as well as my eyes. This might be because I also (and like many others) held my head stiff like a robot and she wanted me to get used to doing natural movements again. I do have more exercises and advice to share... just have to carve out some time to throw together another video. Basically, we worked on the diagonal head movements and I began using foam to stand on to do some of these movements. Keep it up with the exercises, sounds like you will recover quickly. It's common for people to feel worse for the first 3 weeks doing the exercises, so this is a very VERY good sign that you could recover quickly. Great NEWS!!!
Hi Sharon, reading through all your comments below gives me hope. Turned out I have damage to one vestibular organ (most likely due to VN). Still symptomatic after 3 months. It's only getting better reeeaallyyy slowwwly, which drives me nuts.
I wonder: did you also experience neck tension/pain (from keeping your head balanced)? You mentioned TMJ (TMD) in this video. Did you have this before or did you develop it during your time dealing with LAB? Neck & jaw tension seem to worsen my symptoms.
Also, I wonder if your symptoms also got worse as the day progressed. In the mornings now I mostly feel pretty well (except for the first 1/2 hr after waking up), but in the afternoon I get tired and decompensation sets in. In the evening I have the most balance problems/disequilibrium. After a nights sleep I'm okay again... until I get tired again in the afternoon ;).
everyone is different. For me, mornings were the worst. TMJ happened as a result of stress from this illness. I've heard many are worse in the afternoon... likely due to the stimulation of the day.
Thank you for your answer! It helps to know ;). I'm now also doing mobilization and stretching exercises for my neck/shoulders... which also help the dizziness (by removing tension, and by all the different positions you have to put your head in, so it's a bit like VRT too :)).
It is!!! Sounds like you are on the right path. Good luck in your recovery.
Hi Sharon,
How long did your tinnitus last?
I still have Tinnitus, 1.5 years later. I have learned to down it out. I don't notice it much anymore. Mine started as screaming loud Tinnitus and got better over day one, then over a few months.
I think if you have this condition you really need professional help from a physiotherapist who has vestibular disorders skills.They can then target the VRT excersizes correctly for the individual patient as my physio has done.What surprised me was the frequency of excersize required,I am on 5 x reps / 5 x a day at least or whenever I can.
Excellent Advice!!! I made the videos for those who do not have access to a physiotherapist (there are many) and also those who cannot afford one, or who are experiencing long wait times. Also, just to give hope. I truly believe my VRT specialists were key to my recovery. 5 reps per day. That is a lot. We are all different. I was on two reps... like a few minutes each in the beginning. I just ran 15K tonight though, so I've graduated from VRT. :)
Sharon, thanks for these videos. What did you find helped with sleep/anxiety? I have never had anxiety issues and this is has brought out nothing like I could have imagined. Any thoughts as to what helped you would be welcomed. Your videos and many of the comments make me feel better, this will get better. I will recover. Now I need to really convince my brain/nerves of that.
Sarah Lucas The Anxiety is awful. Given that I’ve never had this before.
Hi Sharon may I ask did you experience brain fog and panic attacks from this viral infection I went to the ent and he said I may have had VN but I still feel dizzy and have extreme brain fog after 3 months it's not going away I have to take klonopin just to feel ok .
I experienced both. 3 months is still within the range that many people feel symptomatic. I know some people consider some of the medication that they give you to be a vestibular suppressant, so just be careful, because they can prolong your recovery time. Ask the pharmacist to be sure. Hopefully you can get on a good VRT program and get specific exercises that work for you. Hang in there. It's a nasty illness, but I've been 100% for months. It can be beaten... MOST people recover :) The vast majority eventually get there.
@@SharonHen tomaste alguna medicación?
@@marianelamiraglio27 High dose steroids for my hearing loss for seven days. Typically, nothing is prescribed for vestibular neuritis or labyrinthitis, unless there is significant hearing loss. If you have vestibular migraine, or if anxiety is hindering your recovery, you should speak with your Dr about medication as it may help. Good luck
@@SharonHen ya hice rehabilitación vestibular, incluso sigo con ejercicios en mí casa, según mí terapeuta ya tengo compensados los oídos, pero yo sigo sintiendo el mareo
I was never diagnosed with labyrinthitis/vestibular neuritis and instead diagnosis of exclusion with Meniere's.. I had the whole workup done.. I never suffered from extreme dizziness but more of unsteadiness/fogginess. I've learned to live with it, I still run/surf what not and its more of a nuisance now. Did these rehab techniques work and did it take a while for any results?
Hi, did you have hearin loss? How are you doing now?
I have had a constant feeling of bobbing, slight spinning like the tail end of someone spinning you around in a circle for a while, and just a consistent feeling of movement...is this something you've experienced as related to labyrinthitis? I am also quite fatigued, more so than I have ever been...your video is so uplifting...just wanted to thank you for your insights in advance, I've never endured such a physical challenge before.
It was the hardest thing you will likely ever have to endure. I had a very similar feeling and it was so persistent and I found that it was taking my hope away. Someone who had recovered, took me under their wing and assured me that it would pass, it helped so so so much to have that hope about recovery reignited. Many of us come out on the other side of this with a new sense of purpose. Hang in there... so long as you are putting one foot in front of the other you are recovering. Your brain is amazing... but it's taken a hit and it will take some time to adjust to the damaged signals, but it will. You will be back to yourself. You will, but you have to try to stay positive and talk and reach out to other's who have been through it. I admin a FB page called vestibular hope. We have over 500 members who are all suffering their way through this mess, and getting through it together. Lots of hope on that page. Melody (another admin) has been doing live chats to answer questions and we're thinking of making it a weekly thing. You are not alone. You will get better. Keep moving and keep calm :)
Thank you so much for taking the time to respond, it's very inspiring and has helped me understand that negativity and loss of hope is not the solution. It is so amazing to see so many supportive people dealing with is, and other vestibular related issues, come together. Thank you so much
No problem at all. Someone helped me, and now I'm just paying it forward :)
Sharon Hen THANK YOU SO MUCH , I CRIED when I rear both of your comment, before I felt so alone . I REALLY DONT KNOW WHAT TO SAY
I need to join immediately, I'm having problem.
Absolutely a must see for anyone suffering from these diseases. I'm 24 years old and this has really disabled me for a while. I can't let it keep me down though. I'm going to beat it using these exercises and advice. I'm at the point now where I have only balance issues, but that could be because I am still using the motion sickness patch, and the 2mg Valium twice a day. Was recently told that taking the medicine are going to hurt my brains compensation that needs to happen. So before I go cold turkey and suffer through these exercises and let it come full force, I'm looking for alternative medicine that can help with nausea, spinning, and overall health. Any supplements you recommend? I know they have to be out their and I want to do the excercides religiously, so I'll take any non vestibular suppressant I can find. the only thing I've heard of is collodiol silver from a Heath food shop, that and some people told me that Mexican marijuana high in CBD and low in the stuff that gets you high, would work great for the nausea. Been taking fish oil supplements to help reduce the inflamed nerve from the viral infection. Also just started taking vitamin c lately, just to make sure my body doesn't get too weak on its own
Medical marijuana is legal in my state. However poor grammar must've crept into the school system. So not Mexican marijuana 😂
Thanks for your comment. Well, it might be worth talking to your dr to find out if you are low in anything... like iron, magnesium, etc. They can check with blood work. I too took fish oil, vitamin C, echinacea, powdered magnesium, gingko biloba, and lots of water in the beginning. Those with vestibular migraine have reported improvement with magnesium oil. I had heard from other's on the FB support pages about the above supplementation and was just willing to do and try pretty much anything to get better. It feels good to be proactive. Sounds like you are on the right track. Oh, and absolutely, some of the anti-nausants are vestibular suppressants, so I have heard they can prolong recovery. Big Big HUGS to you. 24.... you are SO young and dealing with this. Keep moving, keep positive, keep exposing yourself to exercises and environments that make you dizzy. BRING ON THOSE dizzies :) I am now almost 5 months and haven't been at all dizzy since 6 weeks and 2 days. It feels amazing!!! You'll get there.
Shooky how are you doing after you came off of the Valium?
If you ever read my comment, please help me to answer on how many times a day do we have to do these exercises? I feel like doing one rep of 20 times each for a day is too little, but I don't want to overdone it also, coz everything excessive always end up not good. Thanks.
Hello, I also had this disease of vestibular neuritis and it has now gotten better. I have taken cortisone and because of the blood circulation I have to take a lot of medication and now I do a lot of sport, it just goes on and now I also have to take vitaminstake so I had very low levels of vitamin D and then I have to take vitamin D against capsules and the question is now with you, I think a few years have passed and what interests me so much? Is in the head it's a little bit so left side is a bit harder is the symptoms always change with this disease sometimes weaker sometimes good sometimes the brain is somehow left side I have the feeling that a little hardened so hardened sometimes strange pressure in the head times pressure imI have my head so it's normal so you had these symptoms too
Hey there. Im in week 3 of vestibular neuritis.
I started doing rehab exercises and I can feel so much improve after just one WEEK!
I couldn't do anything first 2 weeks
now I can walk for 2-3 miles. I can stand on one foot. I'm 70-80%
So today I woke up a bit worse which is good because that means I'm doing the right thing!
But I wanted to ask you. Did you rest day after really good excersices? Or just continued even tho you woke up better?
also did you stop alcohol consumption? I haven't drink in more than month and wanted to maybe have 1 drink but I don't wanna ruin my progress
Generally, for me, I found more was more. I tried to do a little more every day. Doing things and getting back to life, even if i didn't feel great, really made me recover more quickly. That said, if you feel like you need to rest, then rest. I did have a few days where I had to just take it a bit more easy. But I always faced each day with the attitude that I would try to do just one more step that day, just one more minute on the trail, just spend a few minutes longer shopping at the store. Hang in there. Week 3 was still pretty tough for me. I didn't see vast improvements until week six. Keep moving. You are doing fantastic. I am not much of a drinker, but a glass of red in the evenings really helped me feel more normal. Calms the nerves which is important as anxiety from vestibular illness can be the hardest part to overcome. Pour yourself a glass and I will virtually cheers you tonight.
Sharon Hen
oh thank you so much for a good reply!
I'm hanging in there and today was the first day I felt no dizziness and vertigo for 20 minutes. it was amazing. I love the smiley face practice, it's the right attitude.
I'm not a heavy drinker but like 1-2 beers there and then. I think I will keep it minimal but still let me enjoy once in a while.
I never found the fb group you have mentioned?
I'm gonna keep going. more is more, Today I even solved a rubiks cube while standing on one foot 😂 that was challenging.
Thank you so much i almost lost it when I saw horror stories about this.
Hey Sharon, how long have or were you doing these exercises? And was this the entire list of exercises you are/were doing? Are you still 100%? I am also taking Zoloft for 6months since it was advised by my ent doctor and already feel like shit 4 days in with no sleep. Would you advise to stop taking meds completely?
Sorry I'm asking a lot of questions, I had this off balance/ unsteady feeling since 6th grade and now I'm 20. I would appreciate a response since I will be commuting to temple uni which is going to be an hour train ride. I don't want to go into a huge crowd feeling like this.
Hi Trush! I am still doing great. Life is busy, so I apologize for the late reply. I will soon make a video including all the VRT I did from start to finish. I began with two simple VRT exercises, twice daily, reps of three. I built up gradually over weeks and added in new exercises. I always performed them daily, two to three times per day. In the early stages, it would take me only 10 minutes each time, but as I added them in, it was a solid 30 minutes twice daily. I continued with each exercise until it no longer made me symptomatic, at which point, I would essentially graduate to the next level.
As far as medication, I'm not a physician, so I cannot consult you on the issue. The only thing I have recommended to people is that they check with a pharmacist or GP to ensure that the medication they are on is not considered a "vestibular suppressant". I know there are some disorders (like Vestibular Migraine and Menieres) with similar symptoms to VN/Labs, that benefit greatly from medication, but for a straight up vestibular hypo function, it's best if you are able to just start with the brain in it's unmedicated state. I say "IF" because for some people, the only way they can function is with medication, and I completely respect that we all need to live our lives and find ways through the illness.
I'm so SO proud of you going to temple. Before you go, try to expose yourself to smaller crowds repeatedly, so you can get your brain used to the extra visual stimuli. Good luck.
hi sharon, can i ask do you do the exercise all in? when it first start doing is it normal to feel off balance or dizzy after doing the exercise?
Thanks for your comment. This video is a compilation of all the exercises that I learned from my physio and from ones available online. In the beginning, I absolutely felt awful doing even one exercise. The key is to push yourself hard enough to challenge your brain while not pushing so hard that you make yourself worse. So, try one of these exercises a day, then slowly increase to doing that exercise twice per day. Know your body. Everyone is different. Some people can go through this entire routine and they don't get dizzy, but for me, I had a "bad case" and really just walking around the house was challenging. So, I started out standing with my eyes closed and heels together. I did it with my back against the wall in a corner so I had support for when I stumbled. I did that for 20 seconds at a time. Then I stood with one foot in front of the other... did that for 20 seconds eyes open, then eyes closed. I think it was an entire week before I did anything else. Hope this makes sense.
Hi Sharon. My husband is a physical therapist and I got VN a week ago. I have four children and am pregnant. My husband knows some exercises but I'm just wondering more about dealing with day to day life! Did you have family around? I've heard you say you could barley walk around the house and that's me. Yesterday I pushed too hard i think and had a terrible tension headache all night. Did you ever have those? And any advice for getting things done at home while striking a balance of not over doing it in the early stages?!?! Thanks so much for your positive outlook. Hugs
Oh Katie!!! Thank you for reaching out. I do have advice... join one of our FB groups (vestibular hope, labyrinthitis support group, dizzytimes, vestibular challenges and loved ones are a few good ones). I don't "own" the groups, but I try to be active in them at least every few days. First of all, you have to let go of the guilt that you will inevitably feel about things you are missing with the kids. I myself was unable to look after the kids as I was barely able to look after myself, so I had my parents help out and they ended up babysitting them for 2 weeks. I felt guilty, but the kids had a blast and it gave me time to recover. The kids went to my father's house and my mom came to babysit me (ha! I'm 36 and I needed a babysitter). It was actually a really great bonding time for all of us and I am to this day touched my the family and friends who brought casseroles and offered to take care of the kids for a few hours in the months following their return. They, unfortunately, watched more tv then I am happy about, but we were literally in survival mode. It can be very VERY overwhelming having to care for little ones while recovering from this. I tried to include them in my recovery as much as possible. They know all my VRT exercises and would do them with me every single day. My parents and my husband would often set me up with little crafts for the kids to do the night before I would be alone with them, so I'd have a box of colouring or little toys to keep them occupied while I rested. Keep a journal too. Recovery is so slow, that unless you document every day, even if it is a score from1 to 10 of how you are feeling, you won't notice that you are recovering and the anxiety will take over. About the balance. Take note of the number of "things" you do every day. A thing would be emptying the dishwasher, sweeping the floor, tidying up the toy room, making the beds. When you journal, you'll be able to tell your limits. For me, I could literally only do 5 "things" max a day. Making tea and cleaning the kitchen took me all morning when I was where you are. If I pushed too hard, I felt worse the next day. Do the things that bring you joy. Wether it be a nice bath or a good movie or even a book (if you can read, I wasn't able to read for 2 weeks, just couldn't focus on anything). Accept help and ask for help and don't feel guilty. Make sure to tell the kids that mommy is sick, that she might seem sad or upset, but that it isn't anything that they did. Inevitably, they will see you struggle, and you don't want them to worry. You WILL get better, know that. I had a "VERY BAD" case of labyrinthitis along with nearly every associated illness you can get with it, and here I am 7 months later, and I've been recovered for months. I have been making up for lost time with the kids. I actually surprised them yesterday, and we played hooky from school and I took them to the trampoline park and we did crafts, ate out, all of it. It made me feel like a good mom because they know how loved they are. You will feel upset that you have missed this time with the kids, but really, in the long run, you must take care of yourself so you are able to care for them and the faster you recover, the better. I hope this makes sense.
Traduction en français SVP
Essayé d'être tout près de
l'écran pour voire l'exercice.
@Sharon Hen I have make the Test with water ans air in my ear. It is working bist i trink a half ja damage did you trink my Symtoms of dizzy van vom from this ?Thanks ❤
absolutely could explain things.
Hi Sharon, did you keep exercising even though it brought the symptoms¿
I am really scared and hope you can help. A vestibular therapist diagnosed me with vestibular neuronitis last Thurs. In April, I was sick with a virus for 2 weeks. Then, a few days after I was better, ringing started in my left ear. About a week later, the off balance/walking on a boat feeling started and hasn't left. I have been dizzy now for 9-10 days. Therapist gave me exercises and did some testing in office (the goggles and the one where you stand on the platform and they measure balance). I've had no MRI or CT and no one has suggested it yet. I have myself terrified that they're wrong and this has to be something "bad". Any words of reassurance?
I laid around for a week, trying not to move and then finally started moving 2-3 days ago. Moved a lot yesterday and feel horrible today with dizziness. They have me taking low dose klonopin at bedtime to try to calm the vestibular area too.
No hearing loss and my hearing test was normal. No spinning at this time.
Any words of advice or encouragement appreciated!
I can help! All that you are feeling and worrying about is 100% typical and normal for VN. You are still in the worst stage of the illness. I was still a mess when I was weeks in. It really sounds like you have VN. The vast majority of us who have had an MRI or CT, they are normal. Sometimes they find something incidental, but usually they are of minimal value. The key, now that you are up and moving is to keep up and keep moving and expect that to make you feel weird... your brain needs to get used to those movements. Keep a journal of how you feel daily and what your accomplishments for the day are. The more detailed the better as progression and recovery are so slow, they can almost go unnoticed. It only makes sense that your brain will compensate though... the brain is an amazing thing, but it will need time. Best if you kind of resign yourself to the time thing sooner rather than later. I just wanted to hurry up and recover and I was quite frustrated. You have to be really really careful with vestibular suppressants. They can prolong recovery by masking your symptoms and not allowing your brain to fully be exposed to the damage to your vestibular system. It really sounds like VN to me... having heard from thousands of other people with the same symptoms. We all seem to have those feelings of dread that it is something worse and most of us google way too much. It likely isn't, so try not to think that way.... VN is bad enough. OK, so my advice to you is to talk with your dr. and pharmacist about wether Klonopin is harming your recovery now that you are out of the acute phase. The sooner you can try to return to normal activities, safely, the better. It is going to make you feel really strange, but get out walking... even if it is just a few minutes, or around your kitchen island. You can join us on the Facebook support page "Vestibular hope" where myself and 2 others who have fully recovered try to help those behind us. Eek... off to get ready for work and get the little ones on the bus. I was sick... horribly sick with labs and I healed completely... there is a little hope for you. I'm 100% better.
I was diagnosed with this condition 2-5-20. Horrible feeling, my question is will we ever be able to drive?
I know recovery might take long depending how your body takes it. I would love to have hope that once it gets better there will be a possibility of driving again.
I'm a bit disoriented on all this 😭 will I be able to work again ? 😩😭😫😵😖 horrible migraine.
I’ve flown 36 times solo since I recovered. I went from being unable to walk without holding on to something or someone to running and winning my first race. I live a completely normal life. Have hope. If you can get on a medication to control your migraines, it might help speed recovery.
@@SharonHen
Thanks for shearing I appreciate it 😌
How to be if the body is very weak after stress and can't kill the virus in ear?Why NVis neurological problem if it's about virus ,please?
The cause of VN is often idiopathic… and many suspect viruses to be the culprit, when no other known cause exists. The problem, from time to time, is that the body relies tremendously on a functioning inner ear bilaterally, functioning together, to live life. When the inner ear is damaged on one side or both, and they don’t communicate to the brain properly about where the body is in space (proprioception) it impacts every aspect of your waking life. It also creates what I call vertigo or imbalanced induced anxiety, which behaves a lot like any other variety of anxiety. The problem is that in vestibular disorders, in order to get the brain to adapt, you have to do things that make you uncomfortable repeatedly. So if your anxiety is causing you to want to stay in bed all day, it can keep you sick. So, it becomes a problem with compensation and anxiety rather than a problem about the virus. So, after the acute phase, it isn’t about overcoming a virus, but rather getting out of your own way and clawing recovery back for yourself.
I to had the steroid treatment which helped some of my issues. Thanks for your videos and information!
The steroids were pretty hard on my body, but I am thankful to have some hearing back in my bad ear. Hopefully enough to benefit from an aid.
What do the steriods do?
Sheena Poucette Steroids help especially in the beginning of the illness to get any inflammation down. It helped me immensely and also think it saved my ear from further damage.
@@davidspychalla5305 that's what i heard alot of people got my dr wouldn't give me steriods... i was hoping that would help me i still haven't get any steriods to this day 😞
Sheena Poucette How long have you had vestibular issues?
Did you had visual vertigo as well ?? Was your visual vertigo only at the groceries ?
I have visual vertigo, all content is compelling how is your situation?
4 months on still have permanent hissing in my right ear fullness balance problems hearing loss since getting VL anyone else having this ?
Hi how are you doing, did you have diagnosis?
hi sharon thank you so for the respond and for the time to write about the helpful information. i havent diagnose yet but in my case i feel woozy/ dizzy like im on a boat all the time. it start when i had cold last november. i live in the philippines went to see ent did not say anything. i do not know if they have been a case here for labyrinthitis or vestibular nueritis. i feel frustrated bcuz i have this for 3months and dont where to go. thank you so much that you responds to me. sorry my english is not good. can i ask more question to you if would be ok to you? when i try to pop my ear i feel relief for awhile or if yawn a lot i feel a little better for awhile is this something to do about ear problem? i just ask if you have any idea about it? there is no where i can find for help. im would be happy to wait for yor respond. thank you sharon
Your english is great! I'm not a dr. but I have been through it and immersed myself in everything to do with the illness when I first became sick. I'm an ultrasound technologist, but like I said I can offer you some advice. Your case sounds VERY much like it could be vestibular neuritis or labyrinthitis. Don't get too worried about not having a diagnosis as unfortunately, even the Dr's have difficulty figuring out exactly what is going on as there is no absolute diagnostic test for it. They can rule out other things with an MRI, such as tumours (very unlikely) and MS (also very VERY unlikely), but they can't say for sure, yes, it's labyrinthitis. So, they give you their opinion only. The good news, is that the treatment is pretty much the same for all of the vestibular disorders (PPPD, labs, VN, VM, etc). Sounds like labyrinthitis though. It also sounds like you might be the same as me and have eustachian tube dysfunction (trouble with popping your ears due to swelling of the tubes that lead from the back of your throat to your middle ear behind the eardrum). For the issue with your popping, a saline nasal spray might help, and if you can see a Dr. you could ask them for a steroid nasal spray, but make sure to ask the pharmacist how to use the spray to get it in the eustachian tube... you kind of have to lean over the bottle and angle out towards your eye to get it in properly. The good news is that this also seems to ease with time. I still am having issues with popping my ears, pressure issues when I'm going up and down hills even or if the weather is humid, but it is much less of a bother now. On a really bad day, I take an antihistamine and it seems to help. Someone told me that taking magnesium supplement can also help and I've found this to be true. You can purchase it over the counter at the pharmacy. The other thing I did was invest in an "ear popper", the "otovent" also has had some success for people. Basically, they help you open up those tubes by pushing air through... like pinching your nose and blowing to get your ears to pop. It has eased some of my symptoms and they are available on amazon, but if you look up "valsalva maneuver" it is very similar and free. Hope this makes sense. 3 months... the worst is likely over for you. Keep a journal of how you are feeling. Even walking around every day will help make you feel less dizzy. It's hard. Hugs from Canada. We were just hit with a giant snow storm... 30+cm of snow, so I am happy to still have power so I can respond :)
Dear Sharon. I really hope and pray your video will help me 😔 i got severe vertigo and nausea on 1 May. Doctor said my ears are inflammed and put me on amoxicillin. After a week it went away. On the 22 May i started experiencing severe vertigo again, but this time it felt like i was on a boat and trampoline i thought i waa dying (people at work had the flu and i didnt sleep well for the past week so i think my immune system was low) doctor again prescribed an antibiotic and after 10 days of extremely severe symptoms that boat dizziness subsided. Sadly on the 6th of June i got the flu 😒😒😒 and the following night after playing video games ( maybe the motion on the games triggered it again or the flu idk) i started experiencing that boat dizziness again. To this day it hasnt gone away. I feel extremely anxious and sad and i dont know what to do. My doctor is clueless he says its a virus, there are no VRT Therapists anywhere near me. My family got the flu and now today im feeling worse. Dizzy, nauseous, fluish pain behind my eyes and boat dizzy still continues. Im 29, im terrified im stuck like this forever 😭😭😭😭😭 please help me. Should i completely stop gaming as it makes it worse? I dont want to stop my axtivities in the case it delays compensation. I take no meds as it makes everything worse. Please will it really go away?
Also, i got seabands. Will they help? Do they delay compensation too? Im desperate 😔
M1SS B3RRY. I'm so sorry you are going through this. I am a former sufferer and not a physician. I hesitate to advise people on what specifically to do, other than to say, there is a lot of information on youtube regarding VRT exercises and that performing them... although they may not help... they likely won't harm you. Anxiety is a HUGE issue for many people. If you can work through your feelings without medication, that is ALWAYS the best way. You aren't alone. Gaming will probably help with compensation. I myself am a sonographer and it really REALLY is similar to gaming (which I also do...lol). It's kind of like optokinetics. So, try gathering VRT exercises you think might bring on symptoms. It's a start, but work through them daily. It's not hard to figure out what exercises will help you. You need to do the exercises that bring on symptoms. The ones that don't bring on symptoms, aren't needed for you specifically. Try to get a routine together too. It sounds simple, but try to get a solid 6-8 hours of great sleep. Drink water. Join us on vestibular hope. Try not to be scared. You are 29! This will NOT be how your story ends. That i am nearly certain. Almost everyone sees improvement to some degree. I know it feels like you've been sick forever, i do, but you are likely just coming through the most difficult part. Have hope. Also, sea bands should be fine. I don't see why they wouldn't be.
Did you get vaccinated after this illness? Corona vaccination?
I did. I work in healthcare. The vaccination hasn't seemed to cause a flair in symptoms for the majority of vestibular patients I have spoken with. Covid has caused huge setbacks for many sufferers. I'm always pro choice when it comes to what people put in their bodies, but for me, I had it and I have no regrets.
A few days ago I was struck in the head by a football on the left side. My ear was struck as well. Ever since I've had the occasional headache but now I'm having constant head rushes. I think I may have this but I'm going to see a doctor to be sure
So sorry this happened to you. You can absolutely get vestibular damage from a strike to the head. Professional sports players get it as well. Good luck at the Dr's office. The head rushes were part of my illness. It is a horrible feeling that brings on anxiety. Try to just weather them as best you can. For me, although horrible while happening, I was fine after each one. Good luck
I am curious if you experience any actual physical back pain in the upper cervical spine, TMJ pain, facial pain with this condition?
TMJ... but I think it was mostly the stress causing me to grind my teeth. My facial nerve was affected at onset, so I had some pain on my right cheek for a while and some numbness. Lots of back pain and neck pain from moving in a more robotic way.
Were you employed at the time no how long did it take for you to return to work?
I went back part time at 3.5 weeks and was back to full time at a busy hospital a few months in. Return to work was hard, and felt impossible in the beginning, but in the end, it really helped me recover more quickly.
Sharon Hen thank you for responding and the encouragement. I have not received PT. I will use your exercises to help me until then . Thank you again.
Great Barbara. I mention it in the video, but VRT can get pretty imaginative. Basically, find movements that make you dizzy and repeat them over and over until they no longer make you dizzy again. Good luck. Hope my exercises help :)
I am glad you recovered ,you actually recovered pretty quickly ,it been 5 months for me ,slightly better but still have vertigo/dizziness I need to start looking into therapy. ...
Yes, Pili... and I hope you make your way onto those Facebook groups that I mentioned. There are people there who went through the same thing and there are so many, from all over the world, so someone is always on to listen and comment and help. It was a game changer for me when I found those support groups.
Hi please help me out. Mine is a seconds of swaying sensation. How many times can I do this in a day?
How often depends on how sick you are. You could start just picking one or two exercises and doing them 2-3 times per day... adding in ones when you feel the mastered the ones you have been doing. Remember to relax and breath. An anxious brain doesn't heal effectively. Breath in for 4 seconds, hold for 7, out for 8 seconds. Repeat before you start your vestibular exercises and it may lead to better results.
Thank you so much tried two today every chance I get. Hope my swaying sensation stops.
My story so far: August 2017 woke up fell to the side couldn't walk straight room was spinning fizzing throwing up and ringing in my ears since august went to doc the day it happened they said I have vestibular labryintitus the ringing has not stopped at all constantly there went to ent he is referring me for an MRI and said he doesn't know if it is VL very concerned also have lump on neck getting checked only 24 and this is ruling my life also had hearing test which showed right ear significantly worse which explained the balance problems ringing in right ear only was told it may ever stop heartbroken x
well... some Dr's have absolutely no idea what they are talking about. The vast majority of us recover completely, and all of us compensate in some capacity. We have someone in our support group with 100% bilateral vestibular loss, confirmed by VNG, and he works, drinks, parties, is successful, and all around a generally happy person living a full life. If he can do it, you can do it. You have age on your side... but I have found that, generally, the younger the person, the more anxiety can take over and prolong your symptoms. I say this, because I was in my early 30s when it happened to me, and anxiety was my biggest obstacle. Those irrational thoughts of "I'm going to be like this forever", "I'm going to wake up tomorrow with hearing loss on the other side"... they nearly consumed me. Find us on the Facebook group Vestibular Hope. There are so many of us who have recovered from this, and also so many in the thick of the illness, right where you are. We can help each other through this. I'm 1 year fully recovered vestibular wise. 1 year of no dizziness. The lump on your neck... PM me about it on FB if you find the group. I've been doing ultrasound for 13 years and I've seen 5, only FIVE, normal thyroids in that time. If the lump is on the front of your neck it might just be a thyroid nodule, if it is on the side, it might be a lymph node. Try not to stress too much about it. Ask for an ultrasound of the lump if the MRI takes too long to get into. We would be able to sort that out.
Sharon Hen thank you for your response if gives me hope one day this will all be in the past I am going for an ultrasound tomorrow for my neck and am just waiting for the appointment for my MRI to come through , I don't have Facebook unfortunately I just hope this hissing goes one day and I don't have to put ear plugs in whenever I go out because of the noise and my balance gets better thank you xx
Hey, did you ever got your ears pop? While having labyrinthitis? Like ear popping? How did you cure it?
It's still a bit annoying... they don't pop properly. It is knows as Eustachian tube dysfunction (ETD) and comes from scarring of the eustachian tubes that open and close with popping. It has gotten so much better and I've flown 6 times in the past month, no problem, and have another 7 flights scheduled for the next three weeks. They did pop, but it took months. They are still a bit reluctant to pop depending on the weather, but steroid nasal spray helped.
Will it be okay if I put headphones on? While I still have the ear popping?
It's always good to consult with a health professional, but if it is just your Eustachian Tubes causing the ear popping, it should be fine.
Hi, I am still suffering unsteadiness even-though the inner ear loud noise discomfort has got relieved. The imbalance is more especially after having some meal and then subsides. Any remedies. The vertigo first began in 2012 and I'm stil having some imbalance
Why not try something simple to start and just journal your food that seems to trigger you the most. Some people, especially those with VM, seem to have food triggers. Caffeine, chocolate, red wine. I didn’t have food triggers.
Hi All, Have been struggeling with this myself on a number of times now... I'm trying with Diet and supplements and allergy vaccines, have any of you tried this approach?... As far as I have read the "Ithis" is another word (latin?) for inflammation... and allergy and food can give (the bad) inflammation... Anyways if anybody have any experiences with this approach please share.... I'm personally trying to follow a lectin free diet, so no corns/wheat and so on, no diary and nightshades and so on.... almost done with a dust mite vaccine, and starting today on Grass vaccine (this have started it all over again), but also gives me some kind of verification that it could be caused by food/allergy...
Do you have allergies or food sensitivities?? or have you tried experimenting with it?
so how long did it take you for vertigo and dizziness to go away completely
Here is what I remember of my personal timeline (everyone is different). For me, the first 12 hours were quite intense and I couldn't walk well unaided. It was like being in the twilight zone. I didn't have any drop attacks (as is common with other conditions like Menieres) in that I didn't vomit or fall to the floor. I had this constant feeling like my eyes couldn't catch up to where my head was looking and walked like a baby giraffe. After the first day, which included a trip to ER, a consult with the ENT, and a trip to get my steroid prescription, I felt more able to do little things, like get to the washroom on my own, shower, and make the small trips to the couch from my bedroom upstairs. From then, it was a painfully slow and steady improvement with good and bad days... nothing like those first 12 hours, but I had constant dizziness and the feeling of the ground moving under my feet, like walking on lily pads. I started VRT with a physio on day 3. I think this was key to my somewhat quick recovery. She was a friend before this all happened and assured me it would go away. When you have someone who can look you in the eye and tell you that you might have a long road ahead but that it WILL pass and you WILL put this behind you, it means SO much and lessens anxiety about the "will this ever end or is this it?" thoughts that we all have. We all have them. Even people who don't think they have them have had that fleeting thought in the beginning. I did VRT every day, 2-3 times per day and worked on doing "things". I can do another video on that if you like. It was helpful and is a bit hard to explain. OK, so 2-3 weeks I was depressed as "google" and my ENT said it would likely be gone by then. Felt defeated. But, found the online FB support pages on week 4 and suddenly I was reassured that many had it longer than a few weeks and did eventually find their way to recovery. At exactly 6 weeks and 2 days, I woke up NOT DIZZY!!! I still felt "off" but not dizzy. Mornings are my worst, so this was a very welcome development. From 6 weeks and 2 days until about 12 weeks, I went from feeling "off" all the time, to having the odd good day, then almost all were good days and I found myself going the day without even thinking about it (Can you imagine??? It consumed me until then, so to go a day doing normal things??? amazing!!!). Over the past 3 months, I've only had a few moments where I felt off... like if it's really rainy or if I'm really stressed or tired or sick (I've been sick 3 times), I'll have just an hour or so where the feeling creeps back, but I think it might just be anxiety... because usually, I can just go for a walk and come back completely fine. So, as time passes and the worry of it "coming back" decrease, I'm back to normal life. It did permanently take the hearing in my right ear, but I'm dealing with that and it is a new normal. My ringing in my bad ear has decreased so much that I don't hear it unless I think about it. It is there constantly, but it kind of sounds like bugs on a hot summer day, so it isn't that bad, there are worse sounds. I am so thankful to be a recovery story and hope to help people just like you as other's have helped me through this process. Remember Pili when you recover to try to help someone behind you. Only those who have been through this can truly help. Only we can know how it feels to have labs/vn. Hugs