Omg your video has literally saved my life. All that you say in this video has been exactly what I've struggled with. I was recently diagnosed with vestibular migraines. It took me a whole year being in the dark with this disorder, having no idea what was happening. I too had horrible panic attacks with it. It can absolutely be so debilitating. Most days I just wouldn't want to leave the house. I have flares where the headaches are every day and I can even feel them in the ears. My doc too informed me of Effexor and Proponal as good medication choices, and it's something I am absolutely looking into. But this has brought me so much comfort to know I am not alone with this disorder! Thank you.
Hi! I am going through same thing. I am not taking any medication yet. Throbbing head, palpitations, nervousness, dizziness, vertigo. I am not happy. What medication did you take? Thank you
thank you for sharing this. It gives us "vestibular migraine sufferers" hope and help with how to deal. I think anyone who shares their experience helps others so much!
Not certain about the points made but ,if anyone else wants to learn about vertigo and natural remedy try Magonsi Fast Vertigo Expert (Have a quick look on google cant remember the place now ) ? Ive heard some amazing things about it and my work buddy got great results with it.
Hey Svea! I just wanted to thank you so much for posting this video! It is so difficult to find people who are being positive and gone through this and are on their way to recovery. You are so brave and such an inspiration to us all going through similar vestibular disorders. It’s been almost 3 months now that I have been rocking/swaying/walking on a trampoline and after seeing your video, it gave me hope for recovering and finding the right treatment/medication for this debilitating disorder so I can go back to my life and feel normal again.
I have struggled with this for 5 years. Most people thought I was okay and that I was just obsessed with how I was feeling. I researched so many things and wondered if I was dying. My lifestyle changed tremendously.I can relate to the anxiety that this disorder has brought on. I am thankful that I have become much more compassionate toward other people's physical illnesses and that God has given me more answers. Thank you for reaching out with compassion to all of us. May the God of hope fill you with all joy and peace in believing so that you may abound in hope.
Thank you so much. I am in Thailand and it has been so hard to be understood and to understand this myself. I was bed ridden and felt so guilty for missing my job, not being able to work, to do the things I set out to do. Your video made me understand what can help, how to recover, that there are people like me who live the same things and that there is hope. Thank you!
I appreciate this video so much, I was diagnosed around December of last year and it’s been such a slow process and trying to get back into going to school is VERY difficult because I’m still in the process of getting better and still get them fairly often. But this video was very helpful, especially talking about not being consumed with the disorder.
Thank you so so so much for these videos! I thought I was alone! January 2017 is when my entire life changed! Woke up with extreme vertigo when to the emergency room they gave me meclizine and sent me on my way, Couple weeks later I had my first aura and I was blind in my right eye for like 30 mins, freaking out but googled it and read it was an ocular migraine. July 2017 was driving and boom dizziness, tingling and I started to give myself a panic attack because I thought I was having a stroke! Went to see my doctor he said it was BPPV and gave me meclizine and nasal spray. Dizziness never went away, I went back and he gave me predinsone, didn't work. I finally said I wanted to see an ENT. He sent me to an ENT the ENT sent me for an MRI (Normal) then to two audiologists for VNG blah blah blah and then to Vestibular rehab. The rebab helped a little but still was dizzy 98% of the time. While all these tests were being done I was having the same things at times, I was bed ridden for days or weeks, I had headaches, and auras, and then I just think everyone thinks I am crazy! I finally said enough is enough and went to get a second opinion at another ENT and she finally said vestibular migraines and put me on Amitriptyline! Symptoms have subsided alot. I still have bad days sometimes but I can almost function now normally. I also get this weird swooshing like there is fluid or air in my right ear at times and I dont know what thats about....but most of the dizziness has subsided. SO thank you for sharing your story and I hope we all get better becuase this is terrible to live with.
I have just been diagnosed with Vestibular Migraines and has been a horrible 3 months. Don't know what is worse the headaches or the vertigo. I am currently trying 3 medications to help with the headaches and been advised to change my diet and start audiology therapy as my headaches are triggered by sound and light. as well therapy to help with balance . your video and watching others videos give me hope that I will find a balance and get back to my normal self. So far this is my normal, just get through the day with my sanity. My family has been wonderful in this and helpful. and others think it's nothing. I wouldn't wish this upon anyone. terrible that this even exists. Healing vibes to all sufferers and hang in there always take the good from the bad.
I have been really struggling with this- just beginning my journey to get better. I have been out of work for 6 months. Nobody has been able to really help and it is so so debilitating! Thank you for sharing!!
@@Monicablackard still struggling. I am still out of work on disability. I still have bad days a lot and doctors just shake their heads and tell me there isn’t any more they can do. With PT I have relearned how to walk and read despite spinning sensation, I think that was the most valuable thing I have done.
I have been suffering for 8 months every day without a break. Been through hell :( the doctor finally diagnosed me and prescribed me with effexor also. I am about to start these but was very hesitant on these. You definitely made me feel theres light at the end of the tunnel ❤️
You're right about not obsessing about your disorder as that can make things worse, triggering anxiety which just makes everything even worse again. I had vestibular neuritis and I get mild migraines and dizziness as well. I noticed that when my brain was completely occupied by something else like a photo shoot, my symptoms completely disappeared. I knew this was a key to recovery and in time did recover by staying active, going for walks doing other activities and not obsessing about feeling dizzy all the time. Constant worry will cause anxiety and all the symptoms that go with it. My migraines and dizziness (although mild) are caused by sudden weather changes, which I can do nothing about, but most of my other symptoms (too numerous to mention) were anxiety related. By getting active and keeping my brain busy and not obsessing I've eliminated my anxiety symptoms. Vestibular issues and anxiety go hand in hand, I've taken care of the anxiety part and usually ibuprofen takes care of the headaches.
@@Mbeepyd Yes, I noticed when my mind was fully occupied, like doing a photo-shoot, symptoms went away during that time. At the time I didn't know my constant worrying about my VN was causing anxiety type dizziness. About 90% of my symptoms were Anxiety related and not from VN. It was only during photo-shoots or other "mind occupying" activities that I noticed I wasn't dizzy. Once I realized what was going on, and it was anxiety related I instantly started getting better. Some people find that painting or drawing has the same effect.
I feel like I might be the same. When I'm more seriously involved with an activity my dizziness seems gone. Can you describe what your dizziness felt like though? Did you take any anxiety meds either? Thanks
You're such a beautiful young lady and thank you for sharing your story and giving other's hope. I also suffer with these horrible migraines every day while hiding in the dark bedroom that gets to be very lonely. Now I have hope... ❤
Are you able to work now? My doctor is suspecting vestibular migraines. I am unable to work and drive long distances. I am a very independent person so this is so difficult.
Hey everyone ! How are you all doing ? I’m so sorry to hear about all of you being vestibular head aches which I am also a sufferer too . Thank you for sharing this video too as so many people are unfortunate too and I couldn’t agree more about keeping your mind on other projects too ! Take care everyone and speak soon ! Sending lots of virtual hugs to you all 🤗
I currently have fiorecet,amitryptiline,Topamax, excedrine migraine,immitrex and a Patridge in a pear tree.It doesn't work,I get relief for hours and it comes right back.
I loved this video, you touched upon so many symptoms i am experiencing. Constant rocking sensation, "like being on a boat", swaying etc. This was followed by deep anxiety, horrible panic attacks. I could not see a way out of this and went to really dark places. After being mistakenly diagnosed with pppd, a specialist has confirmed I have migraine vertigo. I was really confused at first but seeing this video was really helpful and reassuring. I am taking a ssri (citalopram) and potentially will take a few drops of lexotan with it at least in the initial phase. Knowing this will pass it's what most of us need to hear. Thank you ❤️
@@8QQ8 it definitely help me, i can pretty much lead a normal life now! No side effects, except a little bit of nausea the first few days. Im almost 3 months in and im doing great. I still have the occasional dizzy spell but it's nothing compared to what it was! Hang in there, take medications, do some physiotherapy and it will all be good!!
@@8QQ8 i did! It was constant and horrible. It was with me 24/7 for 3 months. I'd force myself to go out for short walks around the block, it was tough but I read it is important not to stay still for a long time! But there is light at the end of the tunnel!
Incredibly useful! Thanks so much! I get bouts of severe vertigo and it’s the absolute worst. It makes me feel like I’m not alone knowing someone else has experienced it as well and is doing great and is proactive about treating it. I hope you’re doing well!
I'm at 8 years now with Migraine vertigo. I am on Imipham HTC and without it, I can't even function. Now, I have lost my Neurologist (retired) and my primary care doctor (retired). So today I have an appointment with a new primary care doc, so I can get a referral to a new Neurologist. The scary part is the earliest appointment the new Neurologist has is in February, and my meds are expired next week. If the primary care doc can't renew the prescription, I will be on short-term disability.
What medicine did you take please? I am having this for a year. I am desperate. My eyes can not focused well since I am having this. I feel dizzy vertigo nervousness shortness of breath palpitations stiff muscle on shoulders, when I move my head side by side I feel as if I were in a boat. Thank you for your video.
@@JosePerez-cn1qy I am sorry to hear that. For me thus has reduced. I visited a specialist in Lyme disease and he treated me with antibiotics. I started feeling better. Not 100%, but much better than before.
Unfortunately with neuroplasticity you will feel worse before you feel better but you have to stick with it for your brain to create new neural pathways
I was diagnosed in 2008, I currently take propanol and 2mg valium when it hits and I can chew it and it helps with the vomiting. I started having hearing loss in one ear back in November. I went to the Ent and they said they think it is menaires, which that was ruled out years ago by a specialist. The current ent put me on anther blood pressure med that was awful I took it for 2 moths and it did not help at all with the hearing loss, the ringing is there now in Both ears and the loss in the left one is improving. I have had two vertigo attacks in the last six months. I also get headaches now as well. for the most art it is good but the anxiety is overwhelming! Thank you for posting this!!
For those of you who are not doing well, and had all the significant tets to rule out the cause of dizziness, I have a suggestion and you could try this out and it will also help the ENT doc to fgure out what is going on. I am posting this to reach out to help those who were left hanging without a diagnosis for the dizziness and oscillopsia. I was having all these stmptoms that many of you were having for the last 4 years and none of the experts in USA or Canada were able to help me until recently when I started using the silicone ear plugs as a last resort. I was also diagnosed with vestibular neuritis and VRT only made my symptoms worse. I have had every test in an ENT book except a surgical exploration. I have also been on every drug that is in the drug book for dizziness and oscillopsia and none helped me. I just ended up with complications from all these drugs. Who will not be anxious after feeling dizzy for weeks and months or years? When doctors (some) can't figure out what is going on with a patient they label it anxiety. So, be careful. My symptoms completely disappeared after I used the silicone plugs (looks like and feels like playdough, but small) to plug my right ear for 2 weeks continuosly. Sound was causing my dizziness and oscillopsia. Even the running of the motor of a fridge, cars driving by, even the suttle noise that I hear while in a car was causing my symptoms. My own sound also produced the symptoms. You could try plugging your ear, one at a time for a week continuously with silicone plug (including at night as others may snore in the sleep or the AC/heater fan may come on). It should seal well and you should hear very minumum through that ear when plugged. See if this makes any difference. If you are not successful, try plugging the other ear as above. Make sure you are not leaving pieces of plugs in the ear. If it still doesn't help, try plugging both ears or avoid every little sound for two weeks and see if it helps. You should avoid every little suttle sounds, for e.g. air condition fan, the sound of the water falling out of your tap etc. If it works notify your ENT doc. There could be some kind of fistula in the ear. For more information please go to: Vestibular Disorder Organisation website. Good Luck!
It may be crazy coincidence but last night i had trouble sleeping due to noise so i used in-ear earbuds (wireless,not connected to anything) and I didn’t feel AS bad the next day as i have been the previous days
Wow, interesting! I just told the ENT that I am greatly affected by soft sounds like water dripping, a quiet a/c turning on, a limb softly scratching the screen of the window... and I always find it so peaceful when I go do target practice and have to wear my earplugs. I love the sound of silence! Maybe I can try it for longer periods of time.
Hi, the problem with me is I got the vestibular migraine symptoms after hitting tolerance and eventually coming off years of benzos. The withdrawals were horrible coming off benzos but just about the only symptom remain is the woozy on the boat feeling especially when standing or walking and dizziness when turning my head. I don’t know what to do now. :(
Haha literally been my experience. I’ve been suffering with chronic vestibular problems for approx 10 years, no headaches though and had a really bad experience with my first neurologist. I have a new doctor now who is really helpful and helped me find a neurologist who had experience with migraine. Starting topamax today and we will see how that goes. I’d also say that just because one doesn’t work doesn’t mean others won’t, and sometimes you have to give them time. I was on Effexor for like a year (also for anxiety due to vest. Issues) but didn’t find it to work that much, same with propranolol. Also lorazepam is my rescue lol. As long as I don’t take it every day.
I was never diagnosed but migraine free,tyramine free diet and more paleo has helped alot and what has helped more us nucca chiropractic adjustments I have come along way ,monthly cycle get better each month , I take supplements like co-q10 and others which has helped me a lot I only took benzos for about 2 months but it didn't help me so I stop taking them , I was taking formula 303 after the bensos i waited like a month because you cant mix valerian with bensos ,now am only taking co-q10,st. Johns wort,b2,ginkgo biloba,garden of life women multi vitamin ,and noni juice from dr Becker from bioinnovations ,I had similar symptoms you had but they been gradually decreasing some are gone ...... am not house bound anymore I walk alot ,I go shopping, I drive again ,I believe soon I'll be 100 percent again with the help of God , I feel like am 80 percent recovered , Thank You for your videos ,their inspiring ....... :)
Thank you so much for making this video. I have been struggling with similar symptoms for a month and a half now- still trying to get a diagnosis. But listening to this gave me hope for an answer and a treatment plan. Thanks again- make more updates if you ever can!
I'm from Germany, suffering, too. Have to do some medical checks, also an MRI but my Neurologist guessed it could be a vestibular migraine. I have a question to all the sufferers out there... Are you allowed to continue driving your car or not? In the beginning the vertigo was very bad, so the doctor in hospital says, I can't drive as long as I have the vertigo attacks. At the moment the vertigo is gone, it's a mix up to headaches, dizziness and nausea. I would be able to drive short distance and I hope the doctor agree with it. It makes me so sad to be so trapped and unfree. Did you drive or not?
mine starts last dec 11,2018 . i had vertigo for 5 seconds and im about to fall evertyhing spinning and it stops. after im normal but after 2 days after my flight i had this BOAT sensation dizziness, brain fog, tinnitus, my eyes hard to focus.. when im in bed im normal in sitting position still normal but everytime i try to stand and walk its like im in a boat or trampoline. i cried a lot .. i see many doctors did blood works my thuroid is normal... so what i did i change my diet... take some multivitamin supplements and CLONAZEPAM for me to sleep... after 2 months i am 90% fine just a bit dizzy because of clonazepam side effect maybe.. i can drive now go to mall i can run.. 8hours sleep is what we need ... sorry for my grammar.... God bless guys we’ll be fine and normal soon...
I also thought I had sinus issues, also. I'm not officially diagnosed yet, but ENT thinks this is what I have. I am still working on it. I'm sure looking forward to feeling better.
If your dizziness is only dependent on movement (that is, you do not feel it if you sit still for a minute or more) then you may have crystals in the wrong place in your inner ear. Look up the Epley maneuver online and try it (also look up how to tell which ear is the issue) and see if it helps.
@@noahjaybee I am dizzy all the time, including when I move my head sideways...Epley wasn't the answer. Get on Vestibular.org chat...and get on www.thedizzycook.com Alice Wolfe wrote a cookbook, has tons of info IN the front and back of the book but has a website with lots of info. Biggest problem for me since I found her is dealing with the food triggers, like sugar, I MUST WORK HARD to get off...and apparently Gluten is a problem at least now..I also found out we need Magnesium, B2, CoQ10, Vitamin C...but I do NOT have headaches. Hope this gets to you and helps although I hope by now, you are better since you wrote 6 mos ago.
Hi Seva I got diagnosed with pppd but when you said the swaying it brought tears to my eyes because this is contanstant symptom of mine even when I turn my head it looks like things are swaying my doctor just percrisbe me effxor but I'm so scared to take it hes starting me at 2mg then working my way up each week how long did it take you to notice the symtpoms to go away did you also get lightheaded and couldn't focus your eyes super markers are a big trigger for me I also cany walk straight feel like I'm swaying side to side so if you can give me your input that would be great thank you for inspring us that there is hope in our dark times
Jenny Lopez Hi there, I also have PPPD and the swaying used to be much much worse but has improved a lot. What helped me the most was an exercise from my physical therapist. Stand up straight and rock to the left and right 10 times, then front to back 10 times. The movements will be small and that’s fine, the idea is to give your brain more of an idea as to where it is in space. When you get more comfortable with it, start doing it with your eyes closed. I can’t help with the meds but if you haven’t done any PT this is a good exercise to try. Hope it’s helpful, sending lots of love because PPPD is the worst thing in the world.
I agree 100 % about the benzos , for many years I wouldn't take it everyday , once I started taking the benzo at a low dose I was gradually getting back to life , I have trialed all the meds but they all made me worse . For the first 2 years I was so depressed from this horrible illness I started drinking heavily and was on a fast track to becoming an alcoholic , one day I was fed up and started taking benzo and forcing myself to exercise (walking ) and gradually driving short distance . It is very hard pushing yourself with this illness but it does help , even the small things .
jasmine420 I already take klonopin .25 mg once a day for last five years, and .5 the previous 5 years and I was always against these meds but they truly helped. I weened to .25 mg 5 years ago and felt pretty good at that dose. Now it seems like something else is going on like vestibular migraines. I really don't want to increase dosage of Klon or add another drug unless I truly know what is going on since they are so addictive and withdraw and weeding is hell. Ugh.
I am a vestibular Migraine sufferer..last 4 years I am suffering.. Everyday I constantly feels dizziness.. without medications.. After applying medications it cures for 1 day then again it triggers..
Anyone willing to give a summary here please? I respect this is your channel with a personal update, but I am struggling to watch the video beacuse of low ability to focus through my symptoms of BPPV/ Vestib Migraine. I too have had two neurologists (who point to this diagnosis), MRI, CatScan, Angio's, blood tests, etc. Is there a way of living a normal life not on meds? Please assist if you can. Tx.
Tk you so much for this video you have to put it out I want to hearing you cause is my story but no luck I never got treated for it hopefully now I will..
Hi I been alot better with nucca chiropractor treatment but still have a little symptoms here and then but I feel like now am dealing with a little of PTSD due to the dramatic event of mav , anyone else recovering experience this , I was doing better when I was walking long miles but it's been kinda cold here in Houston Texas , am just wondering if it's normal to feel this way .... One day I feel like am on top on the world because can conquering this horrible illness then all of a sudden I remember and I break down ..... How do I completely get over this ... And over the fear that it can happen again
I wasn't an addict and took a benzo only as needed for 6 years for anxieties and I still hit tolerance after 6years. I wanted to die. Hope u are doing well.
I use low dosage of Xanax occasionally for years and it helped me survive anxiety. Ive never went up in the dosage so not everyone becomes a hardcore addict.
Can I get any of vestibular migraines meds over the counter? Or should I go see neurologists. I hate neurologists. One miss diagnosed me with MS 10 years ago. But if I must, I’ll go talk again. I had MRI and EEG this year... they just told me what I don’t have...
I’ve been suffering with bouts of vertigo for about 30 years? However over the last 3.5 years I get vertigo spells and when the spinning subsides I’m left light headed with a headache for days. I’ve had mris and every test in the book including vestibular therapy. I can be sitting at my desk at work normal 1 minute and everything moves and I have to hold on for a couple seconds until it subsides. Once gone I am light headed for hours? Also not sure if it’s anxiety or what but her a strange tension headach in the supermarket and in restaurants. It feels as if someone is squeezing my inner head. When I lay down on either side I often feel like everything is moving with my eyes closed but no actual vertigo? Does this sound like a vestibular migraine?
Grocery stores and flat open fileds are a trigger for my vertigo. It's a scary feeling and unfortunately anxiety and an adrenaline rush make it worse when it happens. Got to the point that I hated going to my kids soccer matches.
Hi Svea, I was diagnosed with vestibular neuritis, pppd, and vestibular migraine. I was prescribed effexor xr too, but I am afraid of taking antidepressants. With your situation, after taking effexor, did it make all or most of your symptoms go away? I feel like I've tried everything and nothing seems to help and always feel like I nothing left but the effexor.
Your videos do help! Do you work outside the home now? I can’t see me continuing to work outside the home long term if this doesn’t improve as I can’t drive, stay awake, read, write or talk coherently most of the time! I am a coder and I write library software - but coding during vestibular migraine periods (I have multiple attacks a day nonstop) I just can’t code! I have subbed as your channel looks pretty cool 😎 and it’s nice to see another Migraineur doing RUclips as it is inspirational (I do “how to” videos but only for past 6 months) xx
Does it ever completely go away? Its really messing with my finances, I can't operate equipment at work safely with this and because I have no idea when its going to happen or how severe it's going to be its really messing things up?
Thank You for Sharing Your Story, I've been recently diagnosed with having Vestibular Migraines and have been trying use RUclips to Spread Awareness and Updates as I go through this journey as well. I find the hardest thing I'm still trying to cope with is working even with treatments this is still a challenge, do you have any tips or tricks that you would be willing to share with me.
Does anyone also try to disguise the dizzy spell with weird gestures because of the uncertainty of fainting? I have had this since 2002 and the only thing that helps me after a experience of vertigo when the fog sets in is kolotopin because I am frightened that it will happen again. Now I see that there are other options. Thank
i wana go see a neuroligist but dont have the money and i want to go out of the states to get treatments but im scared like im litteraly scared to get out of bed im on no meds im so scared of them i try to feel better but my anxiety gets the best of me i have an 8 month old . i have the weierdest symptoms
I had the same problem. Used 400mg of high quality magnesium and that has been a miracle. It took 2 months to get the benefits but worked like a charm. Make sure to take it everyday without missing a day.
Svea Ellen I would love to hear your info on Effexor......I am about to get prescription from my neuro otologist and he is convinced I have vestibular migraines..... This first started off in May as a vestibular neuritis diagnosis but after getting a second vng test they said my ear was fine now.... So after MRIS and what not I was sent to supposedly the best dizziness doctor in Portland Oregon where I live and he says it is migraine Associated vertigo or vestibular migraines as he put it and wants to put me on Effexor...... Did it truly work for you and if so how long did it take for the effects to take?? Are you having to take it every day or will you eventually be able to get off of it? Where there any side effects for you?
I jave a fried who got vestibulor migraine after a cruise.. Been jumping up and down even sitting down. So you took effector X. She been to many neuros and nothing worked. Clonpin is supposed to help w sweating. Do you mean Xsnax/ Anti depressant cause dry mouth which will cause you teeth and they make your teeth fall out
Thx for this. I'm at a very low point lately and no meds for 6 months after trying 13 over 4 years. So many side effects. 😢 can you tell me about the dose of low dose klonopin. ?
How long did you stick with a med before trying a new one? People keep telling me to stick with the Nortriptyline, but on week two and seeing no improvement yet. Thanks!
Carrie Fielder nortriptyline is an antidepressant and they take time to build up in your system before you know if it works or not. I was on it... it didn’t work for me. But I’d give it 2-3 months to see if it helps you.
Svea, I have been suffering from dizziness for about 6 months and it was first diagnosed as bppv vertigo then it was diagnosed as vestibular neuritis after multiple tests and MRIS my doctor is now saying it is vestibular migraines and has prescribed me Effexor like you mentioned I am starting it next week and was wondering how long did it take for you to benefit from it?
Mine was BPPV first too, and then the symptoms didn't go away and changed to constant moderate-level dizziness. I just got in with a neuro and have all my MRI/MRV/EEG whatnot coming up. I'm just glad to see I'm not the only one who got here from BPPV.
@@brelieveme started with bppv/bppd for me as well. Now 9 months later I've been diagnosed with pppd and vestibular migraines. On 80mg propranolol daily. Not helping much so far (2 weeks into the meds) . Had blood work done, VNG, ct scan, MRI, seen multiple neurologists and ENT specialists and ad several eye scans as well
I have to disagree with you about recommending medications especially benzodiazepines... While it might have helped you, it is not a long term solution and withdrawal symptoms are worse... I am never taking them because they gave me suicidal thoughts and very very dark feelings. I'm just hoping exercise and sleep with help with my constant swaying/rocking dizziness sensation...
Hi Svea. I’ve been watching your RUclips videos. I’m struggling. Was wondering if Botox has helped your vestibular migraines? I’m sure you get a lot of messages, but would love to talk to you.... hope you’re doing well.
@svea ellen When you went to see your neurologist, was an mri a required part of your treatment? I just received my vng results today and it stated both of my inner ear are not working properly and seeing a neurologist is highly recommended
Omg your video has literally saved my life. All that you say in this video has been exactly what I've struggled with. I was recently diagnosed with vestibular migraines. It took me a whole year being in the dark with this disorder, having no idea what was happening. I too had horrible panic attacks with it. It can absolutely be so debilitating. Most days I just wouldn't want to leave the house. I have flares where the headaches are every day and I can even feel them in the ears. My doc too informed me of Effexor and Proponal as good medication choices, and it's something I am absolutely looking into. But this has brought me so much comfort to know I am not alone with this disorder! Thank you.
How ardu doing now !?
Hi! I am going through same thing.
I am not taking any medication yet.
Throbbing head, palpitations, nervousness, dizziness, vertigo. I am not happy.
What medication did you take?
Thank you
@@tatianacatherine5070
Nice!!!! I am so glad to hear you are feeling better!!! I want also to feel better.
Have you ever heard about Buspirone?
thank you for sharing this. It gives us "vestibular migraine sufferers" hope and help with how to deal. I think anyone who shares their experience helps others so much!
Not certain about the points made but ,if anyone else wants to learn about vertigo and natural remedy try Magonsi Fast Vertigo Expert (Have a quick look on google cant remember the place now ) ? Ive heard some amazing things about it and my work buddy got great results with it.
Hey Svea! I just wanted to thank you so much for posting this video! It is so difficult to find people who are being positive and gone through this and are on their way to recovery. You are so brave and such an inspiration to us all going through similar vestibular disorders. It’s been almost 3 months now that I have been rocking/swaying/walking on a trampoline and after seeing your video, it gave me hope for recovering and finding the right treatment/medication for this debilitating disorder so I can go back to my life and feel normal again.
How do feel today please???
Thanks for this. I get dizzy when I exercise, and it is comforting to hear stories about how others have recovered.
I have struggled with this for 5 years. Most people thought I was okay and that I was just obsessed with how I was feeling. I researched so many things and wondered if I was dying. My lifestyle changed tremendously.I can relate to the anxiety that this disorder has brought on. I am thankful that I have become much more compassionate toward other people's physical illnesses and that God has given me more answers. Thank you for reaching out with compassion to all of us. May the God of hope fill you with all joy and peace in believing so that you may abound in hope.
It’s easy to get obsessed. It’s terrifying going through this! I’m glad you have found answers. Lots of healing vibes your way ❤️
Thank you so much. I am in Thailand and it has been so hard to be understood and to understand this myself. I was bed ridden and felt so guilty for missing my job, not being able to work, to do the things I set out to do. Your video made me understand what can help, how to recover, that there are people like me who live the same things and that there is hope. Thank you!
Please don't stop making these videos. Again very informative and comforting.
Crying watching this. Thank you.
I appreciate this video so much, I was diagnosed around December of last year and it’s been such a slow process and trying to get back into going to school is VERY difficult because I’m still in the process of getting better and still get them fairly often. But this video was very helpful, especially talking about not being consumed with the disorder.
Thank you so so so much for these videos! I thought I was alone! January 2017 is when my entire life changed! Woke up with extreme vertigo when to the emergency room they gave me meclizine and sent me on my way, Couple weeks later I had my first aura and I was blind in my right eye for like 30 mins, freaking out but googled it and read it was an ocular migraine. July 2017 was driving and boom dizziness, tingling and I started to give myself a panic attack because I thought I was having a stroke! Went to see my doctor he said it was BPPV and gave me meclizine and nasal spray. Dizziness never went away, I went back and he gave me predinsone, didn't work. I finally said I wanted to see an ENT. He sent me to an ENT the ENT sent me for an MRI (Normal) then to two audiologists for VNG blah blah blah and then to Vestibular rehab. The rebab helped a little but still was dizzy 98% of the time. While all these tests were being done I was having the same things at times, I was bed ridden for days or weeks, I had headaches, and auras, and then I just think everyone thinks I am crazy! I finally said enough is enough and went to get a second opinion at another ENT and she finally said vestibular migraines and put me on Amitriptyline! Symptoms have subsided alot. I still have bad days sometimes but I can almost function now normally. I also get this weird swooshing like there is fluid or air in my right ear at times and I dont know what thats about....but most of the dizziness has subsided. SO thank you for sharing your story and I hope we all get better becuase this is terrible to live with.
heather shepperack i get the ear air and liquid noise too
Hey! What dose of amitriptilyne you were on?🙂
Sure it's not mineares disease?
I have just been diagnosed with Vestibular Migraines and has been a horrible 3 months. Don't know what is worse the headaches or the vertigo. I am currently trying 3 medications to help with the headaches and been advised to change my diet and start audiology therapy as my headaches are triggered by sound and light. as well therapy to help with balance . your video and watching others videos give me hope that I will find a balance and get back to my normal self. So far this is my normal, just get through the day with my sanity. My family has been wonderful in this and helpful. and others think it's nothing. I wouldn't wish this upon anyone. terrible that this even exists.
Healing vibes to all sufferers and hang in there always take the good from the bad.
I have been really struggling with this- just beginning my journey to get better. I have been out of work for 6 months. Nobody has been able to really help and it is so so debilitating! Thank you for sharing!!
How are you doing now?
@@Monicablackard still struggling. I am still out of work on disability. I still have bad days a lot and doctors just shake their heads and tell me there isn’t any more they can do. With PT I have relearned how to walk and read despite spinning sensation, I think that was the most valuable thing I have done.
I have been suffering for 8 months every day without a break. Been through hell :( the doctor finally diagnosed me and prescribed me with effexor also. I am about to start these but was very hesitant on these. You definitely made me feel theres light at the end of the tunnel ❤️
B J How is it working for you?
How is it working for u xx
How long did it take to work
You're right about not obsessing about your disorder as that can make things worse, triggering anxiety which just makes everything even worse again.
I had vestibular neuritis and I get mild migraines and dizziness as well. I noticed that when my brain was completely occupied by something else like a
photo shoot, my symptoms completely disappeared. I knew this was a key to recovery and in time did recover by staying active, going for walks doing
other activities and not obsessing about feeling dizzy all the time. Constant worry will cause anxiety and all the symptoms that go with it. My migraines and
dizziness (although mild) are caused by sudden weather changes, which I can do nothing about, but most of my other symptoms (too numerous to mention) were anxiety related. By getting active and keeping my brain busy and not obsessing I've eliminated my anxiety symptoms. Vestibular issues and anxiety go hand in
hand, I've taken care of the anxiety part and usually ibuprofen takes care of the headaches.
Wow really, so if you keep busy do you just not get dizzy?
@@Mbeepyd Yes, I noticed when my mind was fully occupied, like doing a photo-shoot, symptoms went away during that time. At the time I didn't know my constant worrying about my VN was causing anxiety type dizziness. About 90% of my symptoms were Anxiety related and not from VN. It was only during photo-shoots or other "mind occupying" activities that I noticed I wasn't dizzy. Once I realized what was going on, and it was anxiety related I instantly started getting better. Some people find that painting or drawing has the same effect.
I feel like I might be the same. When I'm more seriously involved with an activity my dizziness seems gone. Can you describe what your dizziness felt like though? Did you take any anxiety meds either? Thanks
You're such a beautiful young lady and thank you for sharing your story and giving other's hope. I also suffer with these horrible migraines every day while hiding in the dark bedroom that gets to be very lonely. Now I have hope... ❤
Are you able to work now? My doctor is suspecting vestibular migraines. I am unable to work and drive long distances. I am a very independent person so this is so difficult.
Hey everyone ! How are you all doing ? I’m so sorry to hear about all of you being vestibular head aches which I am also a sufferer too . Thank you for sharing this video too as so many people are unfortunate too and I couldn’t agree more about keeping your mind on other projects too ! Take care everyone and speak soon ! Sending lots of virtual hugs to you all 🤗
You’re a doll ❤️☮️❤️
I have this condition and i have to drive for a living because the government wont sign me off CAN YOU BELIEVE THAT S IT!
Doctors don't know shat about this stuff. I've had to diagnose and treat myself.
I currently have fiorecet,amitryptiline,Topamax, excedrine migraine,immitrex and a Patridge in a pear tree.It doesn't work,I get relief for hours and it comes right back.
I loved this video, you touched upon so many symptoms i am experiencing. Constant rocking sensation, "like being on a boat", swaying etc. This was followed by deep anxiety, horrible panic attacks. I could not see a way out of this and went to really dark places. After being mistakenly diagnosed with pppd, a specialist has confirmed I have migraine vertigo. I was really confused at first but seeing this video was really helpful and reassuring. I am taking a ssri (citalopram) and potentially will take a few drops of lexotan with it at least in the initial phase. Knowing this will pass it's what most of us need to hear. Thank you ❤️
How are you? Do the citalopram helps?
@@8QQ8 it definitely help me, i can pretty much lead a normal life now! No side effects, except a little bit of nausea the first few days. Im almost 3 months in and im doing great. I still have the occasional dizzy spell but it's nothing compared to what it was! Hang in there, take medications, do some physiotherapy and it will all be good!!
@@thetonypyo that’s amazing!:) did you have the rocking / swaying when lying in bed too?
@@8QQ8 i did! It was constant and horrible. It was with me 24/7 for 3 months. I'd force myself to go out for short walks around the block, it was tough but I read it is important not to stay still for a long time! But there is light at the end of the tunnel!
Incredibly useful! Thanks so much! I get bouts of severe vertigo and it’s the absolute worst. It makes me feel like I’m not alone knowing someone else has experienced it as well and is doing great and is proactive about treating it. I hope you’re doing well!
I've been dealing with this issue for months!!! Been to ENT, Neurologist, and Neuro Opthamologist! No meds even offered, just prism glasses!
Please do another video on this. It really is helping me. Encouraging me
Thank you so much for the info!!!
I'm at 8 years now with Migraine vertigo. I am on Imipham HTC and without it, I can't even function. Now, I have lost my Neurologist (retired) and my primary care doctor (retired). So today I have an appointment with a new primary care doc, so I can get a referral to a new Neurologist. The scary part is the earliest appointment the new Neurologist has is in February, and my meds are expired next week. If the primary care doc can't renew the prescription, I will be on short-term disability.
What medicine did you take please?
I am having this for a year. I am desperate.
My eyes can not focused well since I am having this.
I feel dizzy vertigo nervousness shortness of breath palpitations stiff muscle on shoulders, when I move my head side by side I feel as if I were in a boat.
Thank you for your video.
I feel the same way. I can’t get off this horrible ride. 🥲
@@JosePerez-cn1qy
I am sorry to hear that. For me thus has reduced. I visited a specialist in Lyme disease and he treated me with antibiotics. I started feeling better. Not 100%, but much better than before.
Also think about binocular vision
The vestibular therapy also did not work for me , it actually made me worse
jasmine420 Same here!
Same here. Never been more dizzy.
Unfortunately with neuroplasticity you will feel worse before you feel better but you have to stick with it for your brain to create new neural pathways
Jenny Gonzales what was your diagnosis and your symptoms? What has helped you ?
I’m already talking anxiety meds. I’m taking setroline and Gabapentin. But no migraines vertigo meds.
Thank you!!! Love from Brazil
I was diagnosed in 2008, I currently take propanol and 2mg valium when it hits and I can chew it and it helps with the vomiting. I started having hearing loss in one ear back in November. I went to the Ent and they said they think it is menaires, which that was ruled out years ago by a specialist. The current ent put me on anther blood pressure med that was awful I took it for 2 moths and it did not help at all with the hearing loss, the ringing is there now in Both ears and the loss in the left one is improving. I have had two vertigo attacks in the last six months. I also get headaches now as well. for the most art it is good but the anxiety is overwhelming! Thank you for posting this!!
Great to hear your story and gives me hope :)
I was diagnosed with vestibular migraines when I was 12, I’m 20 now. The pill that has personally worked for me was acetazolamide.
R u on medication now ?
For those of you who are not doing well, and had all the significant tets to rule out the cause of dizziness, I have a suggestion and you could try this out and it will also help the ENT doc to fgure out what is going on. I am posting this to reach out to help those who were left hanging without a diagnosis for the dizziness and oscillopsia. I was having all these stmptoms that many of you were having for the last 4 years and none of the experts in USA or Canada were able to help me until recently when I started using the silicone ear plugs as a last resort. I was also diagnosed with vestibular neuritis and VRT only made my symptoms worse. I have had every test in an ENT book except a surgical exploration. I have also been on every drug that is in the drug book for dizziness and oscillopsia and none helped me. I just ended up with complications from all these drugs. Who will not be anxious after feeling dizzy for weeks and months or years? When doctors (some) can't figure out what is going on with a patient they label it anxiety. So, be careful.
My symptoms completely disappeared after I used the silicone plugs (looks like and feels like playdough, but small) to plug my right ear for 2 weeks continuosly. Sound was causing my dizziness and oscillopsia. Even the running of the motor of a fridge, cars driving by, even the suttle noise that I hear while in a car was causing my symptoms. My own sound also produced the symptoms. You could try plugging your ear, one at a time for a week continuously with silicone plug (including at night as others may snore in the sleep or the AC/heater fan may come on). It should seal well and you should hear very minumum through that ear when plugged. See if this makes any difference. If you are not successful, try plugging the other ear as above. Make sure you are not leaving pieces of plugs in the ear. If it still doesn't help, try plugging both ears or avoid every little sound for two weeks and see if it helps. You should avoid every little suttle sounds, for e.g. air condition fan, the sound of the water falling out of your tap etc. If it works notify your ENT doc. There could be some kind of fistula in the ear. For more information please go to: Vestibular Disorder Organisation website. Good Luck!
Gracy Mathew Hi Gracy, thank you for this tip i will definitely try it as I have tried everything
It may be crazy coincidence but last night i had trouble sleeping due to noise so i used in-ear earbuds (wireless,not connected to anything) and I didn’t feel AS bad the next day as i have been the previous days
Wow, interesting! I just told the ENT that I am greatly affected by soft sounds like water dripping, a quiet a/c turning on, a limb softly scratching the screen of the window... and I always find it so peaceful when I go do target practice and have to wear my earplugs. I love the sound of silence! Maybe I can try it for longer periods of time.
Ty!!!
i love you and thank for motivation
Hi, the problem with me is I got the vestibular migraine symptoms after hitting tolerance and eventually coming off years of benzos. The withdrawals were horrible coming off benzos but just about the only symptom remain is the woozy on the boat feeling especially when standing or walking and dizziness when turning my head. I don’t know what to do now. :(
Haha literally been my experience. I’ve been suffering with chronic vestibular problems for approx 10 years, no headaches though and had a really bad experience with my first neurologist. I have a new doctor now who is really helpful and helped me find a neurologist who had experience with migraine. Starting topamax today and we will see how that goes. I’d also say that just because one doesn’t work doesn’t mean others won’t, and sometimes you have to give them time. I was on Effexor for like a year (also for anxiety due to vest. Issues) but didn’t find it to work that much, same with propranolol. Also lorazepam is my rescue lol. As long as I don’t take it every day.
How is topamax?
I was never diagnosed but migraine free,tyramine free diet and more paleo has helped alot and what has helped more us nucca chiropractic adjustments I have come along way ,monthly cycle get better each month , I take supplements like co-q10 and others which has helped me a lot I only took benzos for about 2 months but it didn't help me so I stop taking them , I was taking formula 303 after the bensos i waited like a month because you cant mix valerian with bensos ,now am only taking co-q10,st. Johns wort,b2,ginkgo biloba,garden of life women multi vitamin ,and noni juice from dr Becker from bioinnovations ,I had similar symptoms you had but they been gradually decreasing some are gone ...... am not house bound anymore I walk alot ,I go shopping, I drive again ,I believe soon I'll be 100 percent again with the help of God , I feel like am 80 percent recovered , Thank You for your videos ,their inspiring ....... :)
YOu WILL get to 100%!! keep me updated on your journey!!
Pili Villarreal did you get the rocking sensations 24/7?
yes and constant ear popping , still do at times but it's very faint .......
Thank you so much for making this video. I have been struggling with similar symptoms for a month and a half now- still trying to get a diagnosis. But listening to this gave me hope for an answer and a treatment plan. Thanks again- make more updates if you ever can!
I’ll be doing a update this week!
Svea Ellen how are you doing now? Are you still taking the same medication?
thank you so much. This is what I have been going through. Thank you
I love this.. I really wonder if i have it sometimes. thanks for sharing
Effexor xr is an antidepressant antianxiety medication.
I'm from Germany, suffering, too. Have to do some medical checks, also an MRI but my Neurologist guessed it could be a vestibular migraine.
I have a question to all the sufferers out there... Are you allowed to continue driving your car or not?
In the beginning the vertigo was very bad, so the doctor in hospital says, I can't drive as long as I have the vertigo attacks. At the moment the vertigo is gone, it's a mix up to headaches, dizziness and nausea. I would be able to drive short distance and I hope the doctor agree with it.
It makes me so sad to be so trapped and unfree.
Did you drive or not?
How long did it take for the Effexor to work? What was your daily dosage? I’ve been on 37.5 mg for a week with no change and trying to not freak out 😜
Beta blockers (Metoprolol) solved it for me.
In short...try different medications until you find the one that works.
I recently started on Effexor XR. Can you tell me what dosage you found to be helpful?
mine starts last dec 11,2018 . i had vertigo for 5 seconds and im about to fall evertyhing spinning and it stops. after im normal but after 2 days after my flight i had this BOAT sensation dizziness, brain fog, tinnitus, my eyes hard to focus.. when im in bed im normal in sitting position still normal but everytime i try to stand and walk its like im in a boat or trampoline. i cried a lot .. i see many doctors did blood works my thuroid is normal... so what i did i change my diet... take some multivitamin supplements and CLONAZEPAM for me to sleep... after 2 months i am 90% fine just a bit dizzy because of clonazepam side effect maybe.. i can drive now go to mall i can run.. 8hours sleep is what we need ... sorry for my grammar.... God bless guys we’ll be fine and normal soon...
MiniMimi how are u now fully recoved？ is it a kind allergy reaction?
I also thought I had sinus issues, also. I'm not officially diagnosed yet, but ENT thinks this is what I have. I am still working on it. I'm sure looking forward to feeling better.
I haven’t been able to move my head in any direction without being dizzy for almost a year. Anyone else have this?
If your dizziness is only dependent on movement (that is, you do not feel it if you sit still for a minute or more) then you may have crystals in the wrong place in your inner ear. Look up the Epley maneuver online and try it (also look up how to tell which ear is the issue) and see if it helps.
@@noahjaybee I am dizzy all the time, including when I move my head sideways...Epley wasn't the answer. Get on Vestibular.org chat...and get on www.thedizzycook.com Alice Wolfe wrote a cookbook, has tons of info IN the front and back of the book but has a website with lots of info. Biggest problem for me since I found her is dealing with the food triggers, like sugar, I MUST WORK HARD to get off...and apparently Gluten is a problem at least now..I also found out we need Magnesium, B2, CoQ10, Vitamin C...but I do NOT have headaches. Hope this gets to you and helps although I hope by now, you are better since you wrote 6 mos ago.
Yes. I have been diagnosed with Vestibular migraines and cannot move my head without feeling dizzy as well. Some days are better than others.
Hi Seva
I got diagnosed with pppd but when you said the swaying it brought tears to my eyes because this is contanstant symptom of mine even when I turn my head it looks like things are swaying my doctor just percrisbe me effxor but I'm so scared to take it hes starting me at 2mg then working my way up each week how long did it take you to notice the symtpoms to go away did you also get lightheaded and couldn't focus your eyes super markers are a big trigger for me I also cany walk straight feel like I'm swaying side to side so if you can give me your input that would be great thank you for inspring us that there is hope in our dark times
Jenny Lopez Hi there, I also have PPPD and the swaying used to be much much worse but has improved a lot. What helped me the most was an exercise from my physical therapist. Stand up straight and rock to the left and right 10 times, then front to back 10 times. The movements will be small and that’s fine, the idea is to give your brain more of an idea as to where it is in space. When you get more comfortable with it, start doing it with your eyes closed. I can’t help with the meds but if you haven’t done any PT this is a good exercise to try. Hope it’s helpful, sending lots of love because PPPD is the worst thing in the world.
I agree 100 % about the benzos , for many years I wouldn't take it everyday , once I started taking the benzo at a low dose I was gradually getting back to life , I have trialed all the meds but they all made me worse . For the first 2 years I was so depressed from this horrible illness I started drinking heavily and was on a fast track to becoming an alcoholic , one day I was fed up and started taking benzo and forcing myself to exercise (walking ) and gradually driving short distance . It is very hard pushing yourself with this illness but it does help , even the small things .
jasmine420 how much of what Benzo do you take?
Diazapam 5 mg once a day
jasmine420 thanks, and that's all you take as meds, no Effexor ?
No way I had horrible side effects , I cant tolerate any of those meds , they make me worse
jasmine420 I already take klonopin .25 mg once a day for last five years, and .5 the previous 5 years and I was always against these meds but they truly helped. I weened to .25 mg 5 years ago and felt pretty good at that dose. Now it seems like something else is going on like vestibular migraines. I really don't want to increase dosage of Klon or add another drug unless I truly know what is going on since they are so addictive and withdraw and weeding is hell. Ugh.
Did you have ear symptoms tinnitus, ear pain ? Confusion?
I do. I have ear pain and very loud tinnutis.
Have any medication helped with Tinnitus and ear pain. Any tips sleeping with tinnitus?
I am a vestibular Migraine sufferer..last 4 years I am suffering..
Everyday I constantly feels dizziness.. without medications..
After applying medications it cures for 1 day then again it triggers..
Sir pls help me same problem
How to recovery pls tell me
Same here
Any luck yet?
Anyone willing to give a summary here please? I respect this is your channel with a personal update, but I am struggling to watch the video beacuse of low ability to focus through my symptoms of BPPV/ Vestib Migraine. I too have had two neurologists (who point to this diagnosis), MRI, CatScan, Angio's, blood tests, etc. Is there a way of living a normal life not on meds? Please assist if you can. Tx.
Hi Svea, glad you are feeling much better now.
The dizziness, do you feel the rocking as though you are on a boat 24/7?
When I was at my worst yes I did have that sensation. Now that Im on proper meds I am much
better, and do not have that sensation anymore
Tk you so much for this video you have to put it out I want to hearing you cause is my story but no luck I never got treated for it hopefully now I will..
Hi I been alot better with nucca chiropractor treatment but still have a little symptoms here and then but I feel like now am dealing with a little of PTSD due to the dramatic event of mav , anyone else recovering experience this , I was doing better when I was walking long miles but it's been kinda cold here in Houston Texas , am just wondering if it's normal to feel this way .... One day I feel like am on top on the world because can conquering this horrible illness then all of a sudden I remember and I break down ..... How do I completely get over this ... And over the fear that it can happen again
I wasn't an addict and took a benzo only as needed for 6 years for anxieties and I still hit tolerance after 6years. I wanted to die.
Hope u are doing well.
Thank you so much for this video. It has helped me so much
Im so happy! Sending healing vibes!
I use low dosage of Xanax occasionally for years and it helped me survive anxiety. Ive never went up in the dosage so not everyone becomes a hardcore addict.
Svea, when you started taking Nortriptyline were your symptoms worse? And if so, how long did it take before they started to work?
I have seizures and that time of the month is the hardest. My son is on a ton of banzels and he is only 7.
Can I get any of vestibular migraines meds over the counter? Or should I go see neurologists. I hate neurologists. One miss diagnosed me with MS 10 years ago. But if I must, I’ll go talk again. I had MRI and EEG this year... they just told me what I don’t have...
I’ve been suffering with bouts of vertigo for about 30 years? However over the last 3.5 years I get vertigo spells and when the spinning subsides I’m left light headed with a headache for days. I’ve had mris and every test in the book including vestibular therapy. I can be sitting at my desk at work normal 1 minute and everything moves and I have to hold on for a couple seconds until it subsides. Once gone I am light headed for hours? Also not sure if it’s anxiety or what but her a strange tension headach in the supermarket and in restaurants. It feels as if someone is squeezing my inner head. When I lay down on either side I often feel like everything is moving with my eyes closed but no actual vertigo? Does this sound like a vestibular migraine?
TheJoeyz1122 yes
Absolutely! Stores are a huge trigger for Vestibular Migraine.
I'm just now researching this and my friend I have the exact thing you are talking about
Absolutely....sounds like my symptoms.
Grocery stores and flat open fileds are a trigger for my vertigo. It's a scary feeling and unfortunately anxiety and an adrenaline rush make it worse when it happens. Got to the point that I hated going to my kids soccer matches.
What other meds you've tried that did not work for you ? Also, what dosage of effexor are you on ?
Effexor 75mg has been the magic number! I tried noritrplyne, amitriptline, topamax, zomeg, and another I cant remember.
Svea Ellen what is magic dosage for the klonopin?
«This will pass», thank you!
???? do you have this or are you just someone who is curious about what VM is...this will pass? strange comment.
Hi Svea,
I was diagnosed with vestibular neuritis, pppd, and vestibular migraine. I was prescribed effexor xr too, but I am afraid of taking antidepressants. With your situation, after taking effexor, did it make all or most of your symptoms go away? I feel like I've tried everything and nothing seems to help and always feel like I nothing left but the effexor.
Your videos do help! Do you work outside the home now? I can’t see me continuing to work outside the home long term if this doesn’t improve as I can’t drive, stay awake, read, write or talk coherently most of the time! I am a coder and I write library software - but coding during vestibular migraine periods (I have multiple attacks a day nonstop) I just can’t code! I have subbed as your channel looks pretty cool 😎 and it’s nice to see another Migraineur doing RUclips as it is inspirational (I do “how to” videos but only for past 6 months) xx
Thank you now I will ask my doctor for information on the medication
Curious if any foods helped... or hurt...
Sugary foods make it worse
yes,they are bad for all types of migranies,,,and alkohol,processed foods,fish doesnt work for me either,,,,,
i stopped caffeine which has really helped with frequency & severity of vertigo/dizziness for me.
Does it ever completely go away? Its really messing with my finances, I can't operate equipment at work safely with this and because I have no idea when its going to happen or how severe it's going to be its really messing things up?
Sadly, this condition is not curable. It can be managed, but once you have it, you have it for life.
Hi Can you tell me the name of the med's you are on. I do have VM as well. I am on Nortatriptaly
Thank You for Sharing Your Story, I've been recently diagnosed with having Vestibular Migraines and have been trying use RUclips to Spread Awareness and Updates as I go through this journey as well. I find the hardest thing I'm still trying to cope with is working even with treatments this is still a challenge, do you have any tips or tricks that you would be willing to share with me.
My biggest issue is being anxious to try medication because of side affects....
Does anyone also try to disguise the dizzy spell with weird gestures because of the uncertainty of fainting? I have had this since 2002 and the only thing that helps me after a experience of vertigo when the fog sets in is kolotopin because I am frightened that it will happen again. Now I see that there are other options. Thank
How long did the effoexor take to work ? I wish you would reply to people :(
I don’t always see when people ask me questions! The Effexor worked very quickly for me, probably two weeks I saw huge improvement!
@@SveaEllen thank you 😃
Love this woman
Thank you for sharing
What is the med, again?
You also mentioned you take an anxiety pill with the Effexor. What dose/kind? Thx!
I take this tablet Patroxta Plus 12.5 mg... It has helped me a lot...
i wana go see a neuroligist but dont have the money and i want to go out of the states to get treatments but im scared like im litteraly scared to get out of bed im on no meds im so scared of them i try to feel better but my anxiety gets the best of me i have an 8 month old . i have the weierdest symptoms
Helpful video. Where are you located? Looking for new Drs
did effexor make you worse before it helped?
Any tinnitus did you experience?
I get tinnitus with mine.
How do you stop the fear from when or if vertigo happens again is this a life sentence.?.
Aneta P meditation
I had the same problem. Used 400mg of high quality magnesium and that has been a miracle. It took 2 months to get the benefits but worked like a charm. Make sure to take it everyday without missing a day.
@@victormayer8519 can i ask what kind of magnesium you took
What are your rescue meds?
Klonipin and Naratriptan!
Svea Ellen I would love to hear your info on Effexor......I am about to get prescription from my neuro otologist and he is convinced I have vestibular migraines..... This first started off in May as a vestibular neuritis diagnosis but after getting a second vng test they said my ear was fine now.... So after MRIS and what not I was sent to supposedly the best dizziness doctor in Portland Oregon where I live and he says it is migraine Associated vertigo or vestibular migraines as he put it and wants to put me on Effexor...... Did it truly work for you and if so how long did it take for the effects to take??
Are you having to take it every day or will you eventually be able to get off of it? Where there any side effects for you?
How much mg effexor?
What time do you take the effecor xr?
every night around 8pm
Svea Ellen what dosage of Effexor and what kind of benzo/how much? Sorry if I missed it
Why appologize to guys for talking about hornonal cycle? This is 2022.
I jave a fried who got vestibulor migraine after a cruise.. Been jumping up and down even sitting down. So you took effector X. She been to many neuros and nothing worked. Clonpin is supposed to help w sweating. Do you mean Xsnax/ Anti depressant cause dry mouth which will cause you teeth and they make your teeth fall out
Sounds like your friend had/has MdDS. Tell her to always avoid boats and things that float, and to use a benzodiazepine before travel.
Thx for this. I'm at a very low point lately and no meds for 6 months after trying 13 over 4 years. So many side effects. 😢 can you tell me about the dose of low dose klonopin. ?
the low dose of klonipin has been a life saver. Got rid of the severe anxiety and constant dizziness
Svea Ellen how much is a low dose? Thank you for your time
How long did you stick with a med before trying a new one? People keep telling me to stick with the Nortriptyline, but on week two and seeing no improvement yet. Thanks!
Carrie Fielder nortriptyline is an antidepressant and they take time to build up in your system before you know if it works or not. I was on it... it didn’t work for me. But I’d give it 2-3 months to see if it helps you.
Svea, I have been suffering from dizziness for about 6 months and it was first diagnosed as bppv vertigo then it was diagnosed as vestibular neuritis after multiple tests and MRIS my doctor is now saying it is vestibular migraines and has prescribed me Effexor like you mentioned I am starting it next week and was wondering how long did it take for you to benefit from it?
Mine was BPPV first too, and then the symptoms didn't go away and changed to constant moderate-level dizziness. I just got in with a neuro and have all my MRI/MRV/EEG whatnot coming up. I'm just glad to see I'm not the only one who got here from BPPV.
@@brelieveme started with bppv/bppd for me as well. Now 9 months later I've been diagnosed with pppd and vestibular migraines. On 80mg propranolol daily. Not helping much so far (2 weeks into the meds) . Had blood work done, VNG, ct scan, MRI, seen multiple neurologists and ENT specialists and ad several eye scans as well
I have to disagree with you about recommending medications especially benzodiazepines... While it might have helped you, it is not a long term solution and withdrawal symptoms are worse... I am never taking them because they gave me suicidal thoughts and very very dark feelings. I'm just hoping exercise and sleep with help with my constant swaying/rocking dizziness sensation...
What r your recue meds
Hi Svea. I’ve been watching your RUclips videos. I’m struggling. Was wondering if Botox has helped your vestibular migraines? I’m sure you get a lot of messages, but would love to talk to you.... hope you’re doing well.
What is your dr name and state
@svea ellen
When you went to see your neurologist, was an mri a required part of your treatment?
I just received my vng results today and it stated both of my inner ear are not working properly and seeing a neurologist is highly recommended
🥰😇
but sound alot like you can you give me any advice. on this