24/7 -Vestibular Migraine - Living With A Chronic Illness
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- Опубликовано: 19 авг 2019
- My experience with Vestibular Migraine (VM). Useful links:
FL-41 glasses - UK Sports Eyewear: www.uksportseyewear.co.uk/sec...
FL-41 glasses - Axon Optics: www.axonoptics.com/fl-41-glas...
Sheffield balance clinic:sheffieldbalance.co.uk/
Amy Shockett: / @amyshockett1662
Disclaimer: I am not a Doctor and cannot offer medical advice. If you require professional advice please consult with your Doctor.
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I have never heard anyone describe the symptoms so well. That is almost exactly whats happening to me. All of the tests, multiple doctors, it's awful and I'm finally hearing someone else outside of me saying it outloud. Im in the US and have been suffering for 15 years. Probably before they even knew VM was a thing and didn't know what to do with me.
Ah bless you, that is a nice compliment. Yes, they wont have known and many still dont. Now you can go back to them and suggest VM!
I also was diagnosed with Vestibular Migranes and the miracle for me was botox and a nerve block!
My Neurologist stabbed my head with botox with a tiny needle about 40 times all over my scalp and a week later I received a nerve back at the lower portion of of my head. It made my life way better and brought my Vestibular disorder into remission! I have to go back every 3 months for botox.
Ah OK! I have heard about botox being a big help. I am really glad it helped. Sounds defo worth going back. I might do a video on it tbh.
Silly question what's the nerve block called please for lower neck ?
It is an occipital nerve block- Cervicogenic migraines are very common and are a big contributor to my vestibular migraine condition- That and Botox has helped me too
"As you were, you'll be again." ❤
Thanks Sam.
Samantha Maleda i hope
The Blunt Yorkshireman hi do you have the weird sort of crazy vision which is really difficult in duller lights ?
I’ve got it .. the world looks crazy , so frightening .
Plus double and blurred vision .
Can’t look at anything properly .
So so difficult .
I think if you let time pass you should recover . With or without drugs
@@kayalexander2372 Hi Kay. Time is indeed a great healer, but IMO meds are there to help (and do help) - that's the beauty of science and medicine. Yes, I had the visual symptoms you mention - have a look at my video on FL 41 specs - they will help with the visual symptoms. :)
Thank you for sharing your experience; you're so pleasant to. We never know when we will help lots of people for so many years by speaking out. I was nodding my head with everything you said. I've been dizzy and All The Things for about 5 years and just last year a specialist neurologist (not my regular one) immediately diagnosed me with this and PPPD. I'm still looking for the answers - looks like more to this story - because i want to raise my son and need to work to have health care. I'm in the US, feel really stuck in an impossible situation. Anyway, thanks for your help today! I have a little more motivation again and that's what I needed. 😊
Ah youre welcome and I am glad the video helped. You will get there! Best wishes to you and your son.
I've had debilitating migraines for 30 years. I'm 51 now. The hardest part is the loneliness and the people who should love and support you walk away. Having my dreams for my life just gone. It's stressful when you know one is coming on. Listening to your story made me feel less alone. Thanksfor your suggestions.
I am so sorry to read this. I hope you do find something that works. Keep going x
It's hard for people to understand how awful we are feeling but talking to each other is such a help .I work in the NHS and havnt come across any member of staff who knows how debilitating this is . X
I feel your pain. I’ve had debilitating migraines for 11 years. It’s destroyed my life. And recently diagnosed with vestibular migraines. As if things wasn’t painful enough. People who don’t experience our pain will never understand what we go through on a daily basis. Reading your comment and watching this video is the only place I can come. And hear stories from others that can relate.
Definitely can empathize. I have had this condition for about 7 months now. Long journey but getting better. Taking Aimovig and Effexor together and my symptoms have improved about 80%. Some days are worse than others but there is a light at the end of the tunnel. For anyone suffering please keep the faith, there is hope.
Oh wow - 80% is great progress. Absolutely, everyone can get to where you are - keep the faith indeed!
I'm now 4 and a half years into 24/7 vestibular migraines. Its brutal. I have a similar story. It feels like I'm going to faint every second that I'm alive and have never ending headaches, dizziness, light headedness and more. Its torture. But I have come a long way into coping with it. I'm back to work. I'm starting online school soon. I exercise a lot which helps indirectly. Makes my tolerance stronger and I think slightly helps the symptoms. But its usually temporary so I have to keep up with the exercise a lot. Eating healthy helps some too. I have tried tons and tons of medications and none have helped enough to really to be worth it for me. Vestibular physical therapy helps slightly but that is also temporary so you have to keep up with it
I am very sorry to read you have been suffering for a long time. However, I am warmed to read you have found some good ways to cope. Getting back to work is a key milestone in any recovery!
yes, all of this.. also stopped Rx meds for so long, to try to mitigate with more organic methods
Try going on walks a lot, do some vestibular physical therapy and then work your way up to running. In the beginning it might trigger it worse during and after the run for a few hours to the rest of the day but in the long term it helps your brain to cope with it better. Later on the immediate symptoms will basically stop and you just feel the long term benefit. You have to keep up with it but it is what has kept me going. Not a cure by any means but helps your brain strengthen to combat some of the symptoms
50 mg amitriptyline has helped with the depression and anxiety side but I still spend all day feeling out of it. I tell people it's like being high without the fun part of it. Some days are worse than others. I'm exhausted from fighting every day. I work in a school so the loud kids and fluorescent lights and hundreds of them moving around me are awful when I'm in a bad spell. We're trying Botox on Monday. I've read Clonazepam in the lowest dose can help. But we haven't tried that yet. Noise cancelling ear buds help me not going into panic attack mode. I was going to get those glasses, haven't yet. Blue blockers haven't been effective. Thanks for posting this. I've been battling a few years and it makes me feel less crazy when I hear other people's stories.
My neurologist keeps trying to treat mine like a regular migraine. He is open to letting me try suggestions I've researched though. Propanol gave me a rash. But you said it nicely and I've said it to my doctor. It feels like my body is firing on all cylinders all day every day. I just want to feel normal again.
Hi Kathy. I am sorry to read you are suffering. I am planning to do a video on botox as it does seem to help some sufferers. Probably because it stops the nerves from getitng overstimulated (for example, by horrible electric lights). No, you are not crazy and no worries for posting! Yes, your body needs to calm down and the threatment via meds can help do this. You will feel normal again in time and with treatment x
💯 thank you for sharing your journey with us, it’s been progressive in my case, migraines in my teen years have been a chronic issue; by my late 20s enter BPPV / PPPD, by my 40s to date vestibular migraine w/all the bells & whistles and walking sideways… gave up on a lot of the archaic treatments, yoga helped somewhat, hopeful to pursue some of the latest treatments ❤ heartfelt best wishes for continued healing to all
Ah thanks Diana - youre welcome. Let me know how some of your new treatments go! Ps no way are you 40!
Thanks so much for posting this. I have been suffering with vertigo and other symptoms for around 10 months and have only recently been diagnosed with probable vestibular migraine and Persistent Postural Perceptual Dizziness (PPPD). Just hearing about others having similar symptoms is reassuring for me particularly during stressful moments which are happening everyday and making life unbearable. There are definitely some days when it all feels too much, but I'm trying to hang on in there and your story gives me courage. God bless everyone who is suffering with similar symptoms and thanks again Matt for highlighting a very hidden and not well understood illness.
Thanks Allyson - I am sorry you are suffering but I think you will get to a point where you can manage your symptoms and get some normality back - honestly x
Understood illnesss , exactly
Thank you for all your information , I have had this illness for 3 yrs , suddenly past 2 months severe vertigo and cluster migraines with it very debilitating, I am disabled due to autoimmune and epilepsy and now this ,I loved hearing your story so glad to hear we are not alone let us pray for each other and ask God to wrap his healing hand around you in a mighty mighty way God bless you ❤
Ah I am sorry you are not well, Debbie. I wonder if yours has sprung out of the autoimmune issues you have? Thanks for listening to my story.
33 years with this and Menierre's. Pure and unadulterated torture..
Oh goodness. That must have been so trying for you. I am very sorrt to read this.
Just found your channel - fellow chronic VM sufferer here - thank you for sharing your story, looking forward to watching some of your other videos!
Hey Jennifer! I hope they help. If you want to chat at all I'm on Insta @coredelliassmile
Great video, man. I suffer from VM too. I’m wishing you the best.
Thanks Sun - right back at you!
MATT...thank you. I plan to share this with my family & friends to help them understand my struggles. You described this shit perfectly & IT IS a bear! I also plan to check out the glasses you mentioned, maybe they can be of some help. I lost my job last Tuesday...due to this crap! Hope you're feeling better too!!
Great - I really hope it helped your firends and family to understand the condition!
Well done Matt. Our symptoms similar. Explained everything well. Thanks for sharing.
Thanks Michael.
Very well explained and very very helpful, thank you!
Thanks Rachel
Sounds so similar to my story, loved the quote!
Thanks J
Thanks for sharing your experience on this matter Matt. Based on all the responses below Im glad Im not alone on this!
No you are not alone. You are wellcome, Yuri.
Thanks for this video, you have a calming voice and manner. I have been recently diagnosed with VM and I can relate to a lot of the things you said. Doing my best to stay positive, and thanks for the quote.
Ah thanks Cellia :) I am sorry you are suffering but now you have the diagnosis, you can begin the journey towards recovery x
Thank you so much. It's miserable. It's not good you feel this way but I'm so thankful you shared. I will binge watch.
Fab. Welcome!
I just want to say thank you for making this video, I’m experiencing everything you are! Seriously you don’t know how much this helped me!
Ah - I am humbled it has helped you! x
It is nice to know that we are not alone in this.
I seem to be having these symptoms on a daily basis now. Most days I’ll wake up in the morning with this. Thank you for these videos. May you and your family have a wonderful Easter!
Just starting on the journey with Vistibular Migraine. Somedays it is 24/7. I feel better listening to you. Thanks
Ah bless you. I hope the journey is a short one and you get the right treatment and feel better soon.
Thanks so much.
I can totally relate to everything you've said. I was diagnosed in January 2020. 24/7 it was nice to put a name on it. I was feeling like I was going crazy. Thank you for telling your story. God bless us all.
Ah I am sorry you are suffering but it is good you have a diagnosis - as that allows for proper treatement to help you get better.
Thank you so much for making this video! I was diagnosed with vestibular migraine in February 2021, and I'm looking for others who felt the same way as me. I hope you are feeling better. Love from Brazil
Ah thanks Paula! I am glad you have got your diagnosis - that makes treatment a lot easier! I am doing a lot better, ta. Love from Brazil gratefully received! x
Awww babe. Stay strong x
Thanks love x
Thank you for the video. Sounds like you are describing me, although I do get headaches along with the ear pain and dizziness. Trying some meds and hoping with all these doctor’s appointments that something will click. Be well soon!
No worries. Oh, I hope the meds kick in soon!
A lot of this resonated with me. I was eventually diagnosed in 2014, when I was over 60. Looking at my history the consultant suspected that I'd had symptoms for many years - at least 30 and likely longer. Ad hoc treatments hadn't helped but my symptoms were less severe when I was younger so I just lived with it. Propranolol helped me, and still does, but the chief consideration is lifestyle: foods and environment. The 'supermarket syndrome' really rang true - I get stressed by loud noises (screaming kids) particularly. Thanks for doing this. A real help.
Ah, I am glad it helped. Yes, I bet you have had it for years but the science (medicine) hadnt caught up with you! I defo have more awarness now of food - I try to avoid stuff that uspets my bowel which I think is a root-cause of the VM. Thanks for your message!
Explained so well sure this will help many Matt ! :)
Thanks you :) x
Thanks for you video and sorry for what you are going through. I was diagnosed with BPPV 2 1/2 years ago. It took 9 months to recover 80%. I'm very light/smell/noise sensitive and just researching VM now. Vertigo comes and go but nausea and feeling off for days at a time. I look forward to watching the rest of your videos. Anxiety on top is horrific so I'm glad at the time of recording you were getting on top of this. I don't get headache but get visual migraines.
Thanks Emma. I am well now, ta - this was a few years back. I am glad to hear you are at 80% better now too x
Thank you so much. Very helpful.
No problem! :)
This is almost exactly the same as what I've experienced. Thanks for sharing.
You are welcome. Get well soon.
I am sorry you are dealing with this , and I hope you are feeling better. Good explanation of the symptoms. I get most of what you described, but I also get phonophobia, scent sensitivies, numbness on one side of my face and in one arm, and occasionally the traditional headache. Each episode can last anywhere from hours to a couple of weeks. I was diagnosed several years ago, after months of exams. My neurologist put me on high doses of magnesium and B2, and it has helped enough I have been able to stay off the more serious medications. Physical therapy exercises and avoiding migraine triggers also help. One of the hardest things about this disease is that it's an invisible disease, and it's really hard to explain to people who've never experienced it. As you mentioned at the end of your video, you feel like you just kind of have to drop out have everything from time to time to deal with it and it takes its toll on your friendships and relationships. It is always helpful to know others share your experiences and you are not just losing your mind.
Thanks Michelle. I am so sorry to hear about your symptoms. The scent one is something I havent come across before? It really is an invisible disease. You are definitely not alone!
Thank you so much for posting this. My 8 yo granddaughter has been struggling since birth, as a family we have learned to avoid the triggers that cause her to meltdown (she is also autistic)! She has always said she “feels dizzy”! Because of COVID she has had to wait 18months to see the ENT consultant, who is pretty certain she has this illness, she is being referred to Birmingham children’s hospital for the tests to facilitate a diagnosis!
Ah I am sorry to hear this (for somebody so young) but glad the videos helped. I am sure now the right treatment is on the way, it will help!
Best wishes !!! Thank you for the useful info ! My first few ER visits they told me to drink more Gatorade! Years of struggle, took forever to diagnose for me .
Oh heck - unfortunately, ER docs wont and dont know much about VM. I've had a similar experience too. I am glad you have a diagnosis now. :o)
So glad you've had the right diagnosis sooner than I have. One thing about the meds is you can't just start and stop at will otherwise they can really knock you about and then sometimes you waste 8 weeks realising that a particular drug isn't doing anything. On the up side there's alot of them perhaps representing hope. 👍🤞
Absolutely, you have to give them a good go.
I can relate so much to this experience. Work has always been a big part of my mental and social health wellbeing and I've always been strong and healthy so when this hit it hit hard but the lack of support can be debilitating too.I do not wish to dampen the spirit of folks as I have had a medical nightmare and that is not everybodys experience, I just feel it is really sad migraines and CSF issues are not taken as a clear indicator that something needs to be looked at fully and managed, I know I'm not alone now but it's incredibly sad to have to fight to be listened to about a body you are having these experiences in. i had explained this initially in around 2017 but was in a new GP catchment area and as my work had become dangerous i knew I was having real problems functioning at even a basic level. Anxiety had risen but wasn't what I was concerned about as I knew it was coming from a place of losing independence very rapidly. Not rocket science is it 😅 My sarcastic sense of humour remains but My GP at the time saw fibromyalgia which led to many things being overlooked and anxiety being the highlight (I was told and I quote "to use the power of the mind" I nearly lost my shit) as after a few falls and a concussion between 2014 and 2017 the last fall affecting my neck which began the chronic ear pain/pressure, heightened sensory sensitivity to light and barometric changes, balance issues, swallowing problems, motion sickness, neck and shoulder pain, weakness and inability to control body temperature that was so sensitive that wind could touch my skin and id vomit. My body dissambles upon walking or i have to be so mindful of going over. I'm unable to process auditory or visual stimulation when in full migraine swing which can leave residues for days after and wake up in a drunk state but not fun at all, fullness in ears, hearing distorted, hoarseness and appetite changes. I had already been aware after a concussion aged 14 of a shift in my brain but I was embarrassed and internalised a lot. I feel mine began then without the debilitating affects. My balance and sound sensitivity issues had begun and I'd present Alice in Wonderland syndrome after said concussion but I worked on this and my nervous system with martial arts and other movement practices. I would have overloads at points in my working life as the weather and artificial lighting, air con machines etc has always affected me but it made me hyperactive so a great employer as I was fast until boom, nervous system shutdown which i feel was/is from overstimulation. Before and during the falls I was working in practical conservation and gradually I realised on a neurological level it wasn't good to be working on dangerous vibrating tools and even lifting became a big fat no. A fall i had ignored which led to falling off my bike i had regularly used but could suddenly not balance on, led to concussion as I had not addressed them. I take full responsibility for my own ignorance. I have problems to this day of not being able to manouvre properly to the right so door frames bump into me😄😑 Sadly I have had a medical nightmare as even with very clear vestibular issues my anxiety due to the the drastic reduction in my life output. I have had a few MRI's. 2019 I was told I have an incidental finding Chiari type 1 malformation, the symptoms very similar as its cerebellum herniation anatomical malformation so balance is up there as is many similar symptoms. I was sent into a medical ptsd nightmare as instead of them investigating they instead focused on age old notes of an emotional trauma from years ago that was the least of any of my issues ever. It was so bizarre. I contested it for further investigation because I work with the body (Qigong practicioner) I was dismissed under an FND diagnosis which is a big issue in getting any support and in fact this diagnosis is statistically increasing and even Long covid sufferers are being directed under it. 3 yrs unemployed (I've always supported myself) and migraine symptoms increased although I've slowed down and am under pending EMDR which i hope may help somwehere in there. I have ptsd at a level workable to decrease any more intensified symptoms but my daily life is limited. The chiari that was incidental is further down my spinal chord after 2nd MRI so could I believe be causing csf issues and triggering the age old vestibular issue but they will only treat me as functional until chiari wor sens. It's been incredible. I just wanted to look into pysio incase I was overlooking something in my regime. My goodness. I was also shown white matter iscemic changes and a vertebral displacement, I was made to feel a pest but I know these migraines are at the root of being unable to work or live normally. I work on myself through Traditional Chinese medicine practices and Qigong which has been life saving and changing. I have little faith in allopathic medicine right now and i worked in it for years so had faith in combing the two.😅. Allopathic approaches can be missing very big components in understanding matters of the brain and nervous system and cranial nerve functions get so overlooked it's frustrating as there are modalities that can treat them. I wish all dealing with this and other imbalances wellness and relief from suffering. Being a witness or an advocate to or for others is beautiful and you've done this by telling your story. Thank you🙌🏽
Thanks for sharing your story, Kris and I agree it is very sad in this day and age that something as debiliating as migraines is not at the level it should be. Thanks also for your kind words!
Thankyou for your video, Sir. I will send it to my daughter, who was finally diagnosed with VM last year, after being 18 months with symptoms and tests etc. I know she'll find your video and suggestions helpful; I have found it very educational and enlightening - thankyou once again from a grateful mum. 😊🇦🇺
Ah bless you Lorraine, I hope it helped your daughter and I am happy to be of service to Mums around the world! ;o)
Watching this I just starting bawling. I've been suffering for three years from debilitating symptoms. I've gotten criticism from work and family for it. And now i finally have something to bring up to my Dr. Thank u!!!
Ah fab. Yes, please do mention it to your GP. I am glad it was an enlightening video!
Thankyou so much. I have been having symptoms for a year. I am better but not back to what I used to be. I am pretty sure it's VM. Off to a specialist this week(after seeing numerous other medical specialists and mMRIs, CT scans etc) the list is narrowed down considerably. Glad I found you, gives me hope 🙏
Ah thanks Megan. You should and must have hope!
Hi so glad I found your video I have just come out of hospital after four days as I had the worst experience in my life which turned out to be a vestibular migraine. I collapsed in my bathroom and my son had to phone a ambulance. I'm now living in fear of another migraine and still don't feel right and glad to find out m not alone in suffering thank you
Oh no, I am sorry to hear that Leanne. I nearly collapsed with it once outside my workplace. Are you getting any treatment to try and prevent any future attacks?
I’ve had chronic vestibular migraines since I was 12. I’m now 17 and it just keeps getting worse and worse as I age and it’s horrendous. Its refreshing seeing it talked about
Hi Gabby. I am really sorry to hear that. It's probably linked to your hormones?
I am so grateful to have find your video. Thank you for sharing your experience. I am dealing with symptoms similar to your own.
As an artist, the light sensitivity is what devastates me the most. Now it has been 8 months of this hell! Cannot draw, have a very hard time exercising because every movement feels like I am on a rollercoaster.
I am almost bedridden at this point.
I hope we can get better.
I am glad you have found my videos but sad to read you have been suffering. Have a watch of my other videos as there are tips to help - and they may help you getting paining again.
Great share! THANK YOU 🤗
I had my first VM when I was 32! I thought I was dying. Many misdiagnoses & 30 years later… I’ve simply learned to not panic, rest & just let it pass. I only recently was able to self-diagnose this condition as VM & I feel so much better hearing stories from people such as yourself. I’m not alone & I’m not losing my mind! My last one has lingered for several days since the initial “spin”. And interestingly enough, this one did produce a headache. That was a first. I’m definitely going to take your advice on the “rockstar” glasses because you’re spot on about the shopping issue. Thanks again & praying for you & everyone who’s dealing with this blasted issue.
Ah thanks, Kim. Yes, exactly, the first time you think you are having a stoke, but once you know what it is, you can manage an attack much better. You sound to be managing it well which is great. You are not alone, Kim. Stay in touch x
Thank you for sharing. Praise God I don't have this. 24/7, but I do have it almost every day. My Dr. hasn't been very helpful so I've been doing a lot of research(I'm a retired nurse so I do know how). I was hoping this was BPPV which is much easier to take care of, but not so. Your descriptions are spot on.
Thanks Rise, and I hope now you know what you have, you can get t treated.
I am so glad u shared because I for the weird chest feelings too. Wow
You are weclome - yep - see my latest video where I've come up with a theory about the odd symptoms like the chest stuff.
Thanks for the talk . I'm in my 4th month of VM and these are my symptoms
Hang in there....it will get better....
Diagnosed in April 2022 with VM and PPPD so dizzy all the time and no headache. Finding my triggers (still working on this) has been really useful and I bought Theraspecs which work really well in supermarkets and anywhere indoor with strip lighting. I have also started to work on my diet as there are food triggers to consider. John Hopkins University has an excellent paper and I’d recommend their book Heal Your Headache.
Hate not being able to exercise at all - moving up and down is horrendous. Or work at the doors I am used to - am a gardener and use the work like a gym
Pc and scrolling on phone makes my head ring!
Have not been given any meds except supplements and working with excellent vestibular physio has helped.
Thanks for sharing.
Some excellent tips - that book sounds good. I am guessing it is on Amazon. I know, I have altered my diet a little bit too. It sounds like you are progressing which is great news!
@@thebluntyorkshireman5161 David Buchholz and 1 more
Heal Your Headache: The 1-2-3 Program for Taking Charge of Your Headaches
Highly recommended. Loads of excellent clinical advice, which works for me.
@@ThumperKai Thanks duck. I am really glad it worked for you!
Very interesting video. The symptoms I have are similar although the light sensitivity is not so much of an issue for me. I have symptoms of nausea, balance issues, my head feels under pressure and I feel totally drained of energy along with depression. I’ve had numerous tests in the past and all I was told was it was the after affects of Labyrinthitis. I’ve had this condition for 11 years now.
Thanks for sharing your experiences, very helpful.
Sounds like you have VM or PPPD! I'm no Doctor but it seems strange they think it's the after-affects of a virus you had 11 years ago.
Thank you for such a clear explanation of this terrible disease. Mine started in 2018 although I’ve had migraines all my life. I was put on Flunarazine + Topiramate for 2 months and I was fine. They came back a month ago and could not tolerate the same medication combo. I think I am in trouble now because I cannot tolerate antidepressants either. I can only take Valium. It is the only thing that calms it down. This is really a nightmare. I also get very nauseous all the time. Every time I get the symptoms, feels like a real panick/anxiety attack, then I get better with Valium. I know I cannot be hooked on Valium for life, this is why this is so scary. I have a mental health appointment in 2 weeks, I am sure they’ll suggest an antidepressant, which I am not very fond of. Great video, THANK YOU!
THanks for the comments, Stanley -I hope you do stablise again - if you have already the odds are very likely you will again!
Thank you for this! After 2 1\2 years of neurologist telling me nothings wrong, an ENT finally told me she thought it was my vestibular. I get balance tested soon. I felt better listening to you.
Excellent. Now you have the diagnosis you can start getting treated properly!
Thank you for sharing. I suffer with chronic migraines and recently have been diagnosed with vestibular migraines too that are 24/7 yay! I'm insheffield so knowing about the balance clinic was a bonus and something that hadn't been mentioned, only drugs and physiotherapy have mentioned so far but I'm only at the beginning of my journey.
How have you been doing?
Hi Emily how are you now
I am in the process of diagnosised for all the above symptoms except for light doesn't seem to bother me. I haven't been to work since October 2021 but was having issues for a year that slowly lead up to me taking time off when the migraines were persistent. I daily have dizziness, nausea and sound sensitivity. Migraines are weekly and can take up half the week or more. I still try to be a mom and wife but there is days that it is very hard. Watching this by the end made me cry because I rarely can find someone that can appreciate 100% what I am going through. My family though they see me don't see how I really feel because this is not a cut which can be seen this is internal. It makes me feel alone and weak. So thank you for making this video for the people like us can see they are not alone.
Ah Sarah, I am sorry you are struggling. No you are not alone at all. You are exactly right, as this is a 'silent' illness you cant show your loved ones a broken leg (nor even scans or test results for evidence of something wrong inside, given most VM scans show not vestibular issue). Are you having any treatment? x
I am 13 and I was diagnosed at 10yrs old. I had nearly a year of school and couldn’t walk and was so so dizzy anyway that was three years ago and now I have symptoms 24/7 I find it hard because some of my friends just think that oh she’s just got migraines what’s the deal. They don’t understand how hard and severe it is. My best friends understand though :)
Ah I am sorry to hear that, Alice. Why not play your friends my latest video called "The Moon is Made of Stilton" - it makes it clear that this is not just a migraine?
Matt C Thank you Matt. I will be sure to show them. Thank you for your help! :)
I understand. It's difficult for those who don't suffer to understand what we go through on a daily basis. You are not alone. God bless you in your life's journey. ❤
I am 24 and started having dizziness and nausea with any movement. Definitely sucks when you were previously healthy and now have to deal with something so debilitating. I even have these weird moments where I feel so “off” I can’t even lay in bed comfortably like I feel like I need to sit up or something. Ugh. You’re not alone, hang in there! Circumstances can change very quickly, I literally could not move around for more than 10 minutes without throwing up a month ago, now I’m walking hours at a time. Things are always changing! Remember that
Sooo sorry you're having to deal with this. Hang in there and do get better. Jesus loves you.
I completely feel the same way. Not a room spinning dizzy ness but something hard to explain. Been chasing this problem for a year now with my doctors. He mentioned today it may be this. I am struggling with my mental health during my uni studies and all. It’s so difficult because no one can visually see anything wrong, but you’re breaking on the inside. I hope therapy helps, that may be the next step.
Yes, as VM is a silent illness it makes it really hard to show people how debilitating it is. Getting a diagnosis is key - it sounds like you have that now and can begin the road to recovery :)
Thank God for this video. I was starting to think I had something severely wrong with me. It’s been 3 months of hell. Thank you
Ah sorry to hear that Cole, but I am glad my video has helped in some way. Check out my others as they could help too.
I have been diagnosed with VM for over a year now. I am currently having a bad “attack”. I have been off work now for 4 days. The symptoms you describe are so horrid. My nhs doctors just kept passing me from department to department and I ended up paying to go private and i got an answer within 20 minutes. I don’t have an issue with the nhs at all but I needed help and my only answer was to go private. I am on medication to help. I did physio therapy for years. I do drive but at times I can’t. My hubby is convinced that I am worse when I am stressed or anxious. I have missed out on weddings birthday parties etc. After reading a bit more I can now see the link. I do need to learn more about the condition and accept I need to do more to get myself through my bad days. But you have hit the nail on the head with how you feel. I often say to people turn around in circle 50+ times and stand on the spot. This episode has been the worst and I am still not out of it yet. Thanks for helping me see that I am not the only one.
Hi Tina. I am glad the video helped! There is no shame in going private - when suffering it is money worth spending. Yes, when you are stressed it will put your body under extra stress which puts you over the threshold into an episode. Have a look at my video on staying below the threshold x
It gives me a little hope just knowing I'm not alone, but the part where you said, is this how it's going to be forever? That resonated with me, from the light sensitivity to the face twitching and the stiff neck, it's like your telling my story.I have no personality, I want to be around people and be happy. No one can come to understand unless you deal with it! My mom and sister had migraines and couldn't get out of bed. I assumed it wasn't migraines, but from what the eye, nose and ear doctor told me migraines can take on many forms. Thanks for the video!
Ah you are welcome. Nothing lasts forever, and people tend to forget that means crap things like illness too. Yes, migraines run in our family too and like you, I am unlucky in that I got the worst form - VM x
Hi there, I have not been diagnosed with vestibular migraine, but it is chronic and it affects equilibrium and cognition and has all the hallmarks of vestibular. I have been suffering since 1997 and seen a million doctors and specialists. Sertraline helped me in 2003 to stabilise and get back to work. Currently on amitriptyline with my neurologist. I have had long periods of good and stable days and I have had bad patches and been through all the anxiety and panic attacks. Yuck. I think my migraines and chronic dizziness are hormone driven. I still hope it will get better. I'm 51 now. Just hang in. Keep doing what you're doing to help yourself. You will have good days. Try regular massage. A good osteopath to work with neck and skull. You will survive. I'm here to tell you. It's hard as hell but you will adjust in your own way. I'm going to try the glasses. Thank you. Looking like a rock star can't be a bad thing.
Hi Ceri. I am sorry to hear you have had to contend with this for many yes. I agree, I think women in particular suffer harder with this, and I think it must be due to hormones. Ha ha you offering a massage? Ha ha image is everything ;o) x
I’ve been dealing with this for 3 years and I’m actually crying my eyes out watching your video.
Aww I am so, sorry Kat. It's rubbish inst it x
I cry over it too. You aren't alone. So many things I can't do anymore. I used to be more athletic but now I feel like an oompa loompa. It's ok for us to cry to get out our frustration with it all. God bless
Same
Hi Matt, I tried to contact
You previously. I’m so glad you’re on the road to recovery. I couldn’t find you on Facebook. Would really appreciate if you could get in contact with me. I live in Kent. I have been dealing with VM for 4 months now and it’s the toughest thing I’ve ever had to deal with. Your strength is inspiring. Thank you.
Sorry Alex -missed this comment - glad we have made contact.
I live in Surrey would you please let me know where can I find affordable balance clinic thanks a lot
Thanks - this helps - I have just been diagnosed
Glad it helped and great you have a diagnosis.
Thanks for sharing. I’m glad I found your site. I’m a chronic migraine person my self. Vestibular migraines are horrible. I get the head pain with mine.
I get the head pain too, had this for nearly 3 years now
Ah I am sorry to hear that, Michelle. I am glad you found my videos too and hopefully they will help you a bit. :)
@@kelly2735did your headaches go away and have you ever tried amitriptyline xx
I was diagnosed - tennis player - feels like my life is over 2 months haven’t been able to put my head down to sleep! Wtf so depressed. Thx for the video I hope your feeling better these days. I’m going full anti inflammatory diet.
Hey R. Sorry about your injury (see my other reply). Yes, I think being as anti-inflammatory as possible is perhaps one of the secrets to cracking VM and vestibular disorders....
Hi thanks for your video, I have PPPD which is a similar vestibular condition but I sympathize with the chronic side of conditions and I feel I’m currently in a low point, I feel for anyone with vestibular issues between the dizziness and emotional issues I feel the loneliness is also brutal as you feel no one understands. Best of luck
Hi Troy. It really is awful, but lots of people who watch and comment on these videos DO understand, so you must NEVER FEEL ON YOUR OWN :)
Thank you to your video! It was so useful and gave me more clarity. I'm currently experiencing this now. Ent just diagnosed me with a antidepressant. I'm very hesitate about taking it... 😔
Excellent. I am glad it helped. Well, I would give it a go, if helps with the VM then it will be worth trying it.
I was diagnosed in 2019, with cronic VM and it was quite the journey figuring out what was wrong with me. I’m on meds now that have stabilized my symtoms, but I do have some off days, but its far few and in between. I now can walk down a grocery isle pushing a cart in front of me without passing out. My life style has improve tremendously from when i was first diagnosed.
Find a good neurologist do your do diligence like I did never settle for less. There is medication and help out there you just need to do your home work on what is best for you. VM really effects you mentally and emotionally, but with the right provider and medication plan there’s hope. Be your own DR is the best advice I can give.
Excellent advice, Mitch -I am glad you are getting there and can get to the grocery store now! I agree, getting a good expert is really key.
Mitch, can you tell me what medications you’re taking? My husband has been suffering with VM for over six months now. Won’t be able to see a neurologist till the end of next month.
Thank you for sharing your experience and story with us. I noticed this was posted a few years ago, can you provide us an update with how you are doing now and treatment plan and options you have tried?
Hi Lyn. Have a look at my latest video. :)
I’ve had it for 2 1/2 years, but it took 2 years and a lot of tests and specialists to rule out a lot of other things. I’m in the US so it was also quite expensive to finally get a diagnosis. I still have 24/7 symptoms but I’m finally on a medication that is helping tamp down the symptoms a bit. I keep a cane in my car for especially bad days. I hope you find something that works for you.
Exactly what I am feeling.
Sounds like you might have it ....
Thanks for sharing. I was diagnosed a couple of months ago with vestibular migraines; however, I do not have headaches or photosensitivity. Mine manifests itself in sudden acute attacks of vertigo where I am unable to walk and the sensation of the room spinning at a constant pace. I am completely debilitated for HOURS at a time. I’m left actually crawling on the floor in my house. After taking a huge dose of meclazine, the symptoms subside in a few hours. It takes several days to recover before I can leave the house or drive. It has been terrifying. I spent a year going to my personal doctor, two neurologists and and ENT doctor. It was the physical therapist who properly diagnosed me and gave me those similar exercises which helped. At least now I don’t feel like I’m dying and am managing the condition. I’m retired but am nervous about working if I need to. I’ve had these sudden attacks every few months. I can drive, travel etc like normal, thankfully. It is just when these attacks come I can count on being immobile for 6-8 hours and a day or so to recover. I too have been online trying to find out more. This diagnosis of vestibular migraines is so broad. Your video is a few years old but I hope you are well and have found a sense of peace and acceptance or, better yet, a full recovery 😊
Hi Julie. Yes I never had headaches either (just pressure). It sounds like yours are more episodic then chronic, but like you say, that brings new problems (e.g. could strike when you are out). If you could get a preventative med, that would really help. I am fine, ta and yes all good. Have a look at my other videos (and welcome) :)
@@thebluntyorkshireman5161 just subscribed…you’re now a bit closer to your 1K and monetization👍👏
Thanks for the explanation. Maybe I'm suffering from the same problem. It's been months since I've been feeling my head is spinning it feels like I'm on a roller coaster or something 24/7 with balancing problem, in ear pain and pressure, tingling and numbness. Though, I've visited many medical professionals but nobody able to tell me exactly what's wrong. Thanks for the video this will help me to correlate things.
Yes, it sounds like it - definitely try and find an ENT specialist and present your case! I hope you get some proper answers.
When the room starts spinning they say...try and focus on a fixed point...such as a mark on the wall....until your brain finds the horizon again.
I love your quote. I feel so bad for you because you are so young. From the U.S. and This just hit me in January 2020 (I know such a crap year) for a month, went away for 3 months and now back for 3.5 weeks. I just turned 70 but most of the things you are feeling, I am also seeing the doctor tomorrow again but I was diagnosed with Vestibular Migraine. Let's hope for the best. Thanks for the video.
Hello there! Ah thanks - it's a Smashing Pumpkins song. Firstly, you look absolutely fantastic for 70! I am sorry it has struck you. Well, if you want to chat, let me know and we can link up on FB or Instagram. x
The drug you mentioned at first it's Stemetil (brand) which is Prochlorperazine.
Ah OK. Tbh I didnt have that med for long and had totally forgotten about it until now.
Like you have dealt with horrible balance and visual symptoms 24/7 for just over 13 years now. I woke up one morning in 2007 (I was 27 at the time) to the room spinning around me (vertigo) and ever since that moment I have felt like I am on a boat. The dream like feeling/detached feeling was super strong for the first 5 years or so. However that is the only symptom that eased considerably but it took years. In the last couple of years I have better moments but never normal. I have forgot what normal feels like. It's been a very tough condition to live with. A real struggle. I had so many tests and after many diagnoses over the years I was told its vestibular migraine. No medication I have tried has helped.
I am so sorry to hear of your distress and that the illness has gone on for you for years. :o(
@@thebluntyorkshireman5161 Hi mate. Yeah it's been a long time. I can relate to all of your symptoms. The visual vertigo/motion and head pressure have been prominent symptoms for me. When the head pressure increases all the other visual/balance symptoms increase. Another strong sensation I deal with is a feeling the floor is lifting up and down when walking or standing etc. Do you experience this? I actually have a blog I started years back, also a very basic website detailing my story along with a twitter profile where I share info/videos I can find about vestibular dysfunction for people like you and I -
twitter.com/Swimmyhead
I have shared a video of yours. I hope you don't mind.
I hope you are having better days and I wish you a full recovery. Many people do get better. Even after all this time I still believe I can recover. Although it has taken many many years and low moments there have been occasions in the last 2 years that I have felt somewhat normal. These occasions are random and are not very frequent (Perhaps only last an hour) but they do randomly occur now. When I have such moments it tells me my head is capable of getting to a more steadier place. I only wish I knew how I could make these moments more frequent and last much longer.
For the past 8 years I have been taking nortriptyline (not sure how effective it has been to be honest). Before that I was taking a combination of Gabapentin and nortriptyline. I have also tried topamax and also took amitriptyline (50mg daily) for 14 months. I know there are many medications I have left to try so I have not give up hope. A medication I have discussed with my doctor recently is effexor. I imagine that is something I will be taking in the future. Many people have have success with that medication.
@@Jimmycrow1980 No I dont mind at all mate - share whichever you like. I will check out your blog. Yes, never give up hope - you will hit on the right combo of meds!
I have the same symptoms since 2016. After 2016 it was iff for a while and niw again there's a come back with more symptoms sinve the last 6 weeks. I've had my brain and auditory meatus scans last week and I don't know where about to go from here. I live in UK and here the referrals are really slow. I'm still waiting for a Otalaryngalogist and Neurologist appointments. There's a pressure in my head all the time with partial hearing loss. Things juggle in front of me. Very challenging, I hardly sleep in the nights.
Yes, it is very challenging and I am sorry you are suffering. It sounds like you need to find the right meds combo - that will come from the Neuro or ENT. Dont give up - keep hassling your GP for a referral...
Greetings dear sir from someone in the Midlands. I had a diagnosis of a balance organ not working properly some 15 years ago this year further tests were done and the end answer is vestibular migraine. O I thought can treat that. Nortriptyline worked for 1 hour. My GP did warn will take some to find the right med. Like you though it's 24/7 and not much in the way of a headache. Lot of muscle tiredness too. Miss driving you didn't mention that 🤔. Hope you find the right med all the best 👍
Hello to the midlands. I'm sorry you have suffered for so long. I hope you end up finding the right meds. No, I dont drive, so I didnt mention it. Best wishes.
I always feel better when I'm driving, it's weird but true
@@AshGreen359I do too and when I am riding a bike. Doesn’t make sense to me either but it’s true.
Hey mate, I'm in a very similar situation to you. I've had vestibular migraines for about 4 months now. I've been off work with constant migraines, dizziness, fatigue, joint pain, ringing ears, and neck and back pain. I've had a ridiculous amount of doctors' appointments trying to figure out what's wrong with me but things aren't really getting better. The hardest part is not being able to take part in the things I love to do; going to the gym, playing basketball, going out and having some beers with mates, etc. I've always been a happy guy but this has messed up my mental health, as I lost my first good job out of uni, and my social life is basically non-existent as I'm so sick all the time. It's tough, but I'm taking it day by day and making positive strides to improve my health and get better. Hows your condition going now? is it getting any better, and what worked for you when trying to recover?
Hi Lewis. I am really sorry you are suffering. If you want to DM me on instragram, please do - I'm on as @cordelissamile. Yes, it has a dramatic impact on your life. I'd say my condition is about 95% in remission/managed/better at the moment. I think it's a combo of things, time, the right meds and tweaks in lifestyle (such as more rest).
The Blunt Yorkshireman do you mind me asking what meds helped in the end? I am only 3 weeks in and feel like I am loosing my mind.
@@stephanieboldt3506 The ones most helpful to me have been Sertaline and Propranalol. You might need a benzo for a short while (as you get used to your longer term meds) x
Hi . I'm getting better slowly . Betahistine otherwise known as serc has helped . I take Tristan at the first sign of vm . I am sorry you are going through this but you are not alone and understand how debilitating this is . Lots of rest . It's easy to get depressed but we must keep strong . X x
@@thebluntyorkshireman5161 Hey I watched your u tube video . I hope that you are feeling better x
Hi Matt. Hope youre well mate, just listened to your very first video. You say you were off on sick leave for 4 years was that because of the VM?
Four months, not years! Yes it was four months due to VM.
I've been lightly thinking about trying to form a group of us who suffer with it to work together to try and find either a cure or at least the best strategies to combat it. For example we survey all the VM sufferers for possible leads as to what the cause is and if theres a solution to cure it. In my own case I have a small sinus cyst in my maxillary sinus my drs found in my scans. They didn't tell me about it because they thought it wouldn't be related. I had to request my scans and find it myself to find out about it. It is directly in the area where I have constant dull pain and in some of the scans it looks like it goes deep behind the sinus wall near the eustachian tube. Of which the eustachian tube in the scans also looks like it is slightly off, being slightly open in all the scans when compared to the right eustachian tube opening. My dizziness tests showed my left vestibular system has an issue with it and my left ear is also the one with tinnitus since my VM started. To me it might be the cause but doctors refuse to remove the cyst because it is on the smaller side so they assume it isn't related. Anyways I wonder if more people have these cysts as well similar to mine and or have similar disruptions to one of their eustachian tubes.
Edit: I just heard you say you got an MRI. Request for a copy of the scans. You should be able to through whatever release of information forms. I'd be curious if you also have any sinus cysts or disruptions affecting the eustachian tube
Thankyou for your video im really feeling your journey. Similar symptoms. Previous migraines & past off balance after head cold this time round same thing but four weeks to long. Seeing neuro & ent in two weeks to see what they say. Ive been seeing a verstibular physio and all tests she did i was going to the right like you even marching in one spot. I dont get headaches often more balance nausea sensitive to light and sound and crowds etc. i have had mri neuro years ago said spots are from migraine but want to go back see what he says this time want to make sure ita not MS or something. I do have left foot and hand tingling as well not quiet sure what else could be. Its really hard to focus on things specially work and feel motivated as everything is working twice as hard you feel more fatigued. Do you have instagram at all love to chat? Thanks for sharing your journey. Rikki
Hi Rikki! I am sorry to hear you are suffering. Yes, sure, please do get in touch. It's @cordeliassmile Ps you have a lot of symptoms similar to what I had. x
Been dealing with this since last summer. Seen 5 different doctors, 2 mri's brain scans and everything in between. Right not working with neurologist and getting shots in the head. Mine is really bad when weather changes to cold. Ear pressure, dizziness, jaw pain, bad headaches on the side of my head chest tightness, neck stiffness etc feels like you're dying.
Yes, I think weather is an influencer too - I may do a video on that soon.
Felt all these things you’re describing! Especially the motion one... but it’s my OWN motion that causes it. Like my heartbeat and breathing etc... so bizarre. But I feel better in a car. All the balance tests I had showed no vestibular dysfunction... and I was like !??? HOW
It's so crap isnt it. Because there probably is no vestibular disfunction (damage etc). The disorder, migraine or whatever we are supposed to call it these days clearly upsets the vestibular system but does it without showing any change to the vestibular system. That's why I think the cause is coming from elsewhere (wider issue with central nervous system, bad neck).
Ps love it that you do music!
I have this as well and MDDS, it sucks and I’ve had it for about a decade now. Probably need to switch careers, computer screens and fluorescent lights are huge triggers for me and being on benzos long term is awful.
I did very similar exercises too, wow we have a lot in common
Ah really sorry to hear that. It does such doesnt it.
Gonna give those FL-41’s a try. If they work I’ll personally come and buy you a pint:D
Cheers mate. JUst replied to you on the other thread. One of the best things I did!
I’ve only just come across this video. I’ve been having these migraines for about 5 or so years now but they only happen now and again and only last a few minutes per episode. The last time I had one, a couple of months ago, I then had another the following day which has never happened before. The only reason I know what they are is because of searching on the internet, I haven’t had any formal diagnosis. I wonder if it can run in families as my Mum had Ménière’s disease. I was also prone to fainting when I was younger.
Quite possibly, Marie - there is regular migraine in my family too....
Anyone that experiences this
Do you ever notice you have dizziness, no headaches, but also have inability to catch breath?
When i get a bad episode and i go for a walk or any physical activity...or even have mental stress...
Ill have a hard time breathing and feel like im gasping for air. Its such an odd thing because my body generally feels strong rather than exhausted and weak...
The difficulty breathing normally comes and goes
I can no longer keep up with my past level of physical activity as ill wake up one day with crazy dizziness that is unbearable...
But have been able to find that line to which point i make sure not to cross. This way i mitigate symptoms while still being somewhat active
Also after watching this i just remembered a somewhat minor sports injury where i fell face first to the ground.
I did not really notice any pain at first but after a day i had a lot of tightness, little pain in my neck
Ever since then my neck constantly pops and gets very tight and tense throughout the day...
Could this be related to my symptoms?
Yes, I have had breathing issues with VM - check out my video on it. My theory is that the VM messes with the central nervous system - and that in turn messes with the breathing.
I feel similar!!! You’re not the only one. I feel otherwise healthy and strong, yet it will feel very hard to breathe, catch a breath and what not.
I've been diagnosed with VM which started last November. One thing I find difficult is I don't like telling people I feel terrible everyday as it's hard to describe and can sound like an excuse to rest. That also gets me down and I have even been told by one person that I am lazy when I desperately need to rest as I tire easily. This is so frustrating and getting me more and more depressed.
I know, Maria. But ultimately anyone who says things like that can go an fuck themselves. Not exactly a great friend if they are saying stuff like that to you?!!? x
Do not listen to the people that call you lazy, in fact you are quite the opposite. You are living through the hardships and a very strong person. I had vestibular neuritis and vestibular migraines since 8 months ago and it’s getting better lately. Things can change in an instant! I could not walk for more than 10 minutes 1 month ago, and now I can be up for hours at a time, albeit with a little dizziness and or nausea. But definite improvement!
My Vestibular Neuritis started in May. I had all of your symptoms. It’s life changing. The anxiety is the worst. It’s an invisible illness. Horrific to say the least.
I'm sorry to hear that, Tasneem. Have you had any relief at all?
Matthew Cheetham Yes feeling a bit better in month 5. Having VRT is helping. It’s a long process. Hopefully want to be fit and well soon .
@@tasneemakhtar166 It is a long process but I honestly believe we all can get better!
❤❤
I had it for almost a year 24/7 it was a living nightmare I couldn't sleep the light bothered me but darkness made the vertigo worse
I know, it is like one continous nightmare where you dont wak up. I hope you are improving?
"Men don't have migraines!" is the most annoying thing I've had said to me, mostly because it's people referring to just the headache and not understanding that migraines are a disease of the brain. I'm still under investigation with mine but, like you, I haven't been able to work for over two years now. Take care 👍 ☺
100% mate, it's so much more than a bit of a headache. I hope your investigation helps you get to the bottom of things and a good treatement plan.
explained pretty well, and your back to work? id be interested to hear about how that goes.
gbennett I’ll do a video on it
Thanks G
Matt! It’s me with my annoying questions as usual!🙈😁
Just wanted to ask if you had any ear fullness or even when your hearing was muffled? Deep or low sounds especially. xxx🥴
Hey there, Misha. No, I didnt have that, but I know a lot of people have. If you want to ask some more questions - are you on Instagram? x
The Blunt Yorkshireman , I don’t. 🙁 should I make one just to annoy you with my questions? 🙃I’m pretty obsessed with this sh-t.. becaue I’m not getting any better.😣
Misha Eli I have the ear fullness Misha , lots of symptoms 😩 if you want to talk I’m happy to .
Kayalex17 @icloud.com
Xxxx
I feel you bro i was diagnosed 5 years ago and i still get dizzy im a youtube gamer and stream with bright lights this condition is very close to epilepsy but me and my medical team have tried all this-
naproxen- cyclizine- propranalol- topamax -stemitil-nortryptiline-amyitripatiline-sumatriptan-frovatriptan-magnesium-riboflavin b2- co q10- butterbur-bitahisine and proberbly more sorry for the spelling my brain dont work like it should! try (life extention) migra eaze its a supplement!
Thanks for the tip! Sorry to hear you have been suffering. I hope you still get to game.
@Master Yoda sertraline help the most
@Master Yoda no tinnitus bud
@Master Yoda They sure have!
Anything work?
Hi thank you for sharing, will you plz tell me the RUclips videos you found informative made by someone named Amy. You mentioned her name toward the end of this video. Thanks.
Hi Shirley. It is Amy Shock.
You sound like me and what I’m going through. I’m sill searching
Ugh - I hope you find something that helps!