Vestibular Neuritis- any recovery stories?

Hi Geraldine, thankyou for your reply. I will definitely try drinking more water.  I am not taking any medication as I was advised that this would slow down the recovery process.  My GP gave me prochlaperizine at the start but it made me feel worse!  Did you use medication? How long did it take you to feel better ?

Cally

Hi Geraldine,

what is the other thing that men has helped you with? Do you remember.. please? Thanks to you i have been drinking a lot of water and it did help. But i have much to go as i did not even reach 2nd month yet. 

Thanks

Sham

Not quite sure who to reply to when you just have a general comment, so I'm jumping around ;-) . These symptoms sound very familiar, as if I wrote them myself! lol. The annoying symptom I have is the "retinal slip" or oscillopsia which makes me feel like I'm walking on a trampoline. It's so bad that I even have the sumptoms when I'm just sitting there sometimes, and the jumping vision is in synch with my pulse! I read up on it, and this is a rare, but real, condition. It is NOT "just anxiety" - I am so sick of people thinking that it's all in your head (pun intended). It CAUSES anxiety, because I feel like I'm going to fall with almost every step I take, but it is physical in nature. No reason given, had 2 MRIs and nothing weird showed up, just the bilateral vestibular dysfunction/loss with the caloric test. VRTs are not helping AT ALL, and I've benn doing them for 10 months. I walk several times a week for this purpose, as I was told that "just living life" will help retrain the brain to lessen the symptoms/off-balance sensation. I fee like I am drunk when I walk, and I really get discouraged when no one can tell me why I have this and it is not improving with time. Suggestions? Recommendations? I have been to a neurologist and ENT specializing in balance, also PT at a balance center. I'm lucky I don't have nausea with it, and that I have only fallen a few times, I suppose! This is just the most bizzare condition I have ever heard of, and not sure why the Vestibular Rehab Training is not working.

dee, I'm going to probably ask about 20 questions below but here goes.

Curious have you been tested for any vitamin deficiency?

How does your RBC Magnesium look like?

How about B12 or D?

Any GI issues like leaky gut or anything in the diet that had changed?

 

Hello Geraldine, I too, suffer from VN and the associated disequilibrium and unsteadiness, as if things are not staying focused on my retina when I move my head (oscillopsia). I am curious though... when people here talk about "good days" and "bad days", I don't undeeeerstand this. Every single day is the same for me, for about 10 months now. No good days. The only good "moments" I have are when I don't move my head! Can someone explain this to me? I have been doing vestibular rehab exercises for 8 months and I see no difference. As a whole, I think this is getting worse with time, but I certainly do not have ups and downs, day-by-day. Thank you, anyone who like to reply.

Hi - I only see 4 questions, but here goes... Yes, neurologist asked for blood tests for vitamin levels, and found my B6 was a little over 1 (on a scale of 5 - 40, I understand) so I am very low, but taking 100mg of B6 a day and will be tested again in a month. All other levels were ok, except for my vitamin D, which has always been low (11ish) on a scale of 20-50. I'm on 50,000 IU per weekd for that. No change in diet. Can vitamin D give me these symptoms?

Hi Dee,

I have been suffering with VN since December 19th 2014.  Like you I have felt no improvmeent and in fact feel worse now than I did at the start.  For the first month of the illness I was still able to work and drive but things deteriorated and I have not worked since January 2015 or driven since September.

I never have any good days, I may have slightly better days but most of the time I wake up very dizzy and go to bed feeling the same way with a myriad of weird symptoms popping up along the way.

I have been doing the Vestibular exrercises since July and do not feel any improvment.  I was told at my last appointment that my balance had inmproved but it doesn't feel like it.  When first getting the illness I wanted to keep walking over to the left now it is very different as I feel I am constantly rocking and swaying even when sitting or standing still.  I also feel very lightheaded and like I could pass out at any time.  I am told that tension and anxiety are hindering my recovery as I complain about having a very stiff neck all the time.  I would accept this if my weight stayed low, I initially lost 11ib but not due to nausea and sickness as I have never suffered this in all  the time I have been ill, the weight loss was probably due to anxiety (at that time), I have now put all the wieght back on as I have become more relaxed about things but am still told I am suffering anxiety and to try and relax!!

I do have a slight problem with my thyroid as my TSH level was 7 at the last blood test, I have since gone for another test and await  the result.  In the UK GP's won't do anything for thyroid unless it goes over 10 even though the normal range is max of 5.5.  I am hoping that my next result shows up abnormal and they put me on a course of tablets as It will be interesting to see if this has been the reason for my ongoing and worsening problems, have you had your thyroid checked?

I am in regular communication with Cally and we have both theorised that our problems could be due to an on-going virus (if not the thyroid) but GP's and consultants we have spoken to do not agree.

Anyway, I hope you get to the bottom of why you have felt no improvment.

Best wishes

Laurence

There is much information out there indicating that vitamin D deficiency does cause dizziness/vertigo.  11 is extremely low.  Look the deficiency up on Google to confirm this informaion.  I take liquid vitamin D as mine was on the low end of the spectrum as well.  This condition can take several months to resolve and I can attest that there is no quick fix.  At 21 months I find myself nearing 100%.  Getting my neck issue resolved has  made a difference as well.

You have to find a course and stick with it.  You will not find much help from the medical community.  Nothing out there is going to end it as quickly as it started.  It takes time and in some cases a looooong time. 

Thank you. I will stick with it, and between the low vitamin D and the low B6, I think it's all contibuting to my non-progress. Also, now I think I may have POSTerior BPPV, not anterior, which is what they were treating. We are our own reserchers, for sure!

Hello Laurence. Thanks for the suggestion, but my thyoid level is normal. Perfectly in the middle of the range, in fact. Will ask this 2nd Ear-Nose-Throat doctor if it could possibly be posterior BPPV when I have my appt at the end of this month. That's a whole other ballgame and could explain everything.

If he can't offer help, I'll ask to be referred to a otoneurologist as I think may be the right professional.

Like you, I don't really have good or bad days. From Novemeber of 2014, till now, it's been exactly the same, no matter what I do. Discouraging, but nice to see some people do improve, as long as they are diagnosed correctly! Don't lose hope...

Hi there, 

I know this thread is old and I'm just stumbling upon it.  I could not help but respond as what you just wrote Dee is exactly how I feel.  I feel like I'm walking on a trampoline and and unsteady when walking.  I cannot walk or stand for more than a few minutes without discomfort.  I have this constant state of unsteadiness ( I call it rocking or swaying).  It feels like my body is constantly swaying back and forth, back and forth.  I've been to an ENT, they found nothing wrong with my ears.  I've been to a neurologist who labeled me with "Chronic dizziness".  I am just wondering if you have gotten better since your last post.  Thanks!

Hi Terry don,t know if you still on forum.   This is my 3rd round of VN and am having terrible neck issues.  How did your neck react and how did you get it sorted.  It feels as though tingling running down my neck when I do certain moves.  Doctor says it is anxiety but did have a whip lash injury last year which seemed to be getting better.  Hope you are fully better now.  Ruth

I still have neck issues.  I have degenertion in C3 and C4 and cervical oseophytes.  I go to a massage therapist every 3 weeks to try to keep it under control.  I do believe that neck problems contribute to what is termed as VN.  It is hard to sell doctors on this belief.  I usually stay at 95% recovered from my episode from a little over 2 years ago. I did have some issue last night where I felt dizzy while seated and leaning forward. That was a first and it's been a long time since I had a dizzy sensation.  Not sure what it was.   

Hi Emily

I've just stumbled on this thread trying to find some answers for my own dizziness and visual disturbances. How you describe your symptoms is exactly how Mal de debarquement is described. I'd never heard of it before but have a look online. Sufferers describe the feeling as walking on a trampoline and a swaying or rocking feeling. Good luck.

Thank you Terry6872737 ! What sort of neck issue resolving helped you in BPPV symptoms ? I'm in some what similar boat with constant repitation of BPPV every other month.

I also got my Vitamin D level tested and it came in lower 30's range of ng/ml. Do you think boosting vitamin d level could help me in BPPV vertigo here ?

 

Hi Pamela

I hope you are well

Can I just ask what Symptoms you have?

I had what was diagnosed as labrynthitis in June 2014 and had 2 MRI scans and countless visits to the gp and ent specialist... also had VRT. And still I feel the same as I did on day one, with foggy head, bad tinnitus, tiredness, nausea etc. But also strained eyes that feel like they are focussing at different rates and make my forehead tight.... I tend to have a few half decent weeks then take a nose dive down and start feeling awful again then very very slowly start feeling marginally better

if anyone else sees this and has any input , I would love to hear from you.

Chin up people, all the best.

Rob

Hi Rob,

Wanted to reply to your thread as it is the newest one on here, and I'm finding this condition beyond isolating. How have things been lately?

I am in my fourth month of VN. I had been making some progress a month ago but a physio therapist put me on a treadmill, and it sent me back to the beginning. Three months of recovery and VRT down the drain, bed ridden and off work again. The symptom I find hardest to take is the 'fog'. The thing that is just all encompassing and makes you feel like you are in a nightmare or other reality. Hope/spirits go up and down and just feel like being taking on a rollercoaster ride.

Anyways hope you have had some relief and/or answers over the last few months.

Laura

I had the same thing happen to me.  I was hit in late March 2014 and in July over did some VRT that I found on the internet and went back to square one.  Actually, was worse after that than I was at square one.  Things gradually began to improve again, though.  It took me a long time to recover to a manageable level and even after almost 3 years I am only at what I call 95% recovered.

Don't let anyone overdo therapy with you.  The exercises have to be measured in small increments.  No more than 10 minutes at a time and only what your body/inner ear can tolerate.  It will get better again.

Terry

I have to ask you- this post was a long time ago but I also have this vision in sync wit my pulse.. I just started getting worked up and the doc doesn't think it's my ears- getting VNG and audiogram in a month

Hi Geraldine

I just asking if there is any quick and positive solutions for this problem it's make so upset and fell very uncomfortable in my current life ,

I have symptoms sudden dezznes, spanning, vertigo, and sickness and also ear blook , loosing hearing tones in my ear , as like explains by one cally, the same I have ,

First time I went to doctor 11 months ago he prescribe me some tablets for 5 mg it's already been mention there in sobody comments

So the first time was regularly dezznes sick all these start I was layed in home can't go to work and nob any where , then I am get better and then again cuple months later the same symptoms started again and also it's been requmend during liquid how much you can water and I agree it does helps but I went to Gp he refer me to (ent )but it's takes ages to check and to find out where is the problem to treat the problem and I ready want my life back as like I was before , and very no happy I can't drive , I can't go away to drive because the symptoms very bad for cuple of hours it's make so uncomfortable, so please any that cold help with this

Thanks

Hi Terry! Thank you SO much for responding back to me. For some reason I did not get a notification for it, so only seeing it now.

Well it's nice to know that I am not the only one that has had such a severe set back. VRT is not the same this time around. Can barely do any VRT without getting severe headache ect, so need to change my approach this time. Thank you for the advice on going very slow and gentle. Happy to hear you are at 95%. I was at a pretty stable 70% before this happened.

It's so wonderful that you stay on here encouraging people. Thank you.

Laura

Dee50000, yours is the first post that aligns with my symptoms more closely. On Aug 12, 2016, I was driving to work and within 5 minutes felt the right side of my face and body just drop. After racing to the ER for what was originally thought to be a stroke, I was diagnosed with Ramsay Hunt, a rare viral condition caused by varicella zoster ---- the same virus that causes chicken pox as a kid, and shingles as an adult. I'm 54 and extremely active and healthy, but this virus knocked me on my butt! The right side of my face remained completely paralyzed for 2 months but eventually returned in full, but the vertigo and dizziness persisted and worsened. It appears my intra-cranial viral episode permanently damaged my 8th cranial nerve on the right side of my head. I am just over 5 months of living in perpetual dizziness EXCEPT when I am perfectly still (reading, watching TV, sleeping). I thank God there is at least that element of relief! I'm a very vibrant person, so even talking in my naturally animated way sends me whirling until I just have to go lie down and rest. I am seeing a neurotologist and specialists in the vestibular center at the Cleveland Clinic, and they have told me that, even with a permanently damaged right vestibular system, with time and as much PT and 'normal living' as possible, my brain SHOULD eventually re-train and form new pathways that rely more on the left side. I remain on medical leave because I can barely drive. It's ski season and I can't ski with my daughter and friends. I walk my daughter to school and move and go about my day as best I can, but I am constantly whirling ---- never a break unless I just sit down and remain perfectly still!  Unless I move too fast and you see me reel, most people don't know anything's wrong because I'm 'learning to live with vertigo,' but if I needed to walk fast or do ANYTHING athletic, you'd see me turn into an old woman, stiff and cautious and terribly imbalanced. Thus far, the PT gives me days where I get down to a 6 1/2 on a scale of 10, but when I get too tired or I get a migraine or headache, I race back to an 8 and just need to sleep half the day away!! I HATE THIS!!! It has affected every part of my vibrant and engaged life, and I am struggling to try and be as 'normal' as possible, but I wonder if I'll ever get on the slopes again or coach my daughter's soccer team or get on my mountain bike or just LIVE NORMALLY!! And I NEED and want to get back to work where I thrive and find so much satisfaction (and income!)!

How are you doing now? Your post was over a year ago, so I'm praying, for your sake and my hopefulness, that you are doing much better now! 

Thanks for listening (-:

I came across this thread now, Feb 2017, because I check back on the internet every few months to find a new angle, if any.  I had an acoustic neuroma more than 5 years ago. They took out the tumor and in the process they should cut the vestibular nerve.  I asked the surgeon to try to preserve the auditory nerve. Coming out of the operation he thought he was successful.  However the auditory nerve was severed.  During recovery I had severe balance and dizziness issues.  After about 2 months the balance improved a lot.  There is a residual dizziness that is there all the time with any head motion at all. If I sit and watch tv and don't move my head, it is barely noticiable.  There is not much change in the dizziness which is similar to a drunken feeling.  At rare times it feels a little light-headed.  There has been no improvement in the last few years. I had vestibular tests done and there is a small signal coming from the vestibular nerve.  They believe it is not entirely cut. So I think it is similar to the condition described here where the vestibular nerve is damaged.  I coming to the decision to have the surgeons go in there again and sever the nerve completely.  This I think would be much better than what I have now.  I would give everybody with this condition a hug because I can relate to this feeling and believe nobody has a clue what it is like unless you have it. 

Hello,

​How do they diagnose Ramsay Hunt?

​Thank you,

​Nicole

Hi,

I have the bouncing swaying sensations like I walk, sit, and lay on a 24 hour waterbed. How are you doing now?

How did you find out it was your eyes oscillating? Did you get cured, and if so how??

Hope you are better, looking for hope.

Melody

Jeffdal,  I recently… In the last four weeks… Had a massive migraine. When I woke up, I was spinning even worse than I have in the previous six months after my Ramsay Hunt episode.  Went to my neurotology us at the university of Colorado and they did a caloric test would show that my right eighth cranial what's now completely dead. So now I've gone from partial signaling to all out death. I am one month out and the world is dizzier than ever. I still only get relief when I have absolutely no head movement...Reading, watching TV, working on the computer.  I continue my vestibular PT and cranial dry needling (to reduce migraines and open up vertical pathways for blood flow), take 400mg Magnesium daily, and am now working with a neurological chiropractor (just started, so no thoughts yet). I've also had blood drawn to test for pathogens and food cross-reactors, the primary goal being to see what else might be contributing to unrelenting inflammation which contribute to persistent symptoms and interference with healing (compensation). I continue to get out there and live life, albeit much more slowly and avoiding things I love such as mountain biking and skiing. I'm a total of 7 months out and am determined to get my life back, even if that means learning to fully live in a spinning world! I just want the spinning to come down a few notches because it's relentlessly over the top still. I moved from an 8 1/2 to a 5 1/2 after 6 months of PT, only to be hit with the 'final death' of the nerve. I'm like you ---- I feel that my brain will, eventually, figure out how to better deal with a fully dead nerve than trying to compensate for a sporadically-functioning one. I have confidence I will have a breakthrough and the lightbulb will go on!

Nicole, Ramsay Hunt can be diagnosed several ways, but mine was the classic (well, as classic as can be for a rare condition): within 10 minutes (while driving, no less), the right side of my body suddenly felt very weak and my my face (rt side) started to drop. We went right to the ER and MRI and CT showed no brain involvement (to rule out strike). By the end of the day, my face was paralyzed but my body was coming back to normal. Within 24 hours painful and disgusting blisters and red bumps were coming out of my ear canal onto my outer ear. Classic RH. The subsequent inflammation that persisted, despite high dose steroids and valcyclovir, ended up permanently damaging my right-side 8th cranial although 7 and 5 returned back to normal (hearing and face returned to normal, tinnitus reduced dramatically). So all symptoms except vertigo subsided. There are also blood tests that can show active VZV or high antibodies to VZV, both indicating a recurrence of the virus. GET A SHINGLES VACCINE if you had chicken pox as a kid!! Don't wait until you're 60 (which is the currently approved indication). Shingles is terrible unto itself, especially if it's intracranial! 😬

Oh my.  That sounds horrible to have to experience.  So the Ramsay Hunt is caused by the same virus as the chickenpox?  My daughter was able to get a vaccine for chickenpox.  That was surprising to me because I had it when I was in third grade.  I never knew there was a vaccine for chickenpox!  So she should be ok but I should be careful because my grandmother had shingles so it's possible I could get them too.  This stuff is so frustrating.  How do you manage now?  Are you able to get around by yourself?  Do you ever feel like you're in a dream (derealization)?

Yes, I get around, but I am CONSTANTLY whirling. I've had to give up things I live like skiing and mountain bike riding, but I refuse to give up. My brain WILL figure this out and begin to compensate. I know this because our brains are miracles and they compensate all the time, even when we don't know it. For instance, a couple years ago I went to have a routine eye exam and they discovered that, although I did not have 20/20 vision, I don't need glasses because, somehow, I have developed mono-vision, meaning one eye is now nearsighted and the other is farsighted, so one takes the lead in seeing close while the other leads in seeing far! Who knew! People who donate a kidney live life just fine because their remaining kidney grows and learns to compensate for all kidney functioning. Our brains figure it out. We just need to eat right, get good sleep, and don't sweat the small stuff that can cause anxiety and stress. Staying positive is essential. Staying active and involved. Exercising. Even when all these things wipe me out so much more quickly and the intensity of my involvement is much less, it's still important to plow ahead. And have faith.👍👍👍

So frustrating that some docs and nurses and even PT say is this anxiety no but when you walk around and feel like everything is moving around you yes I get a little anxious bc I'm afraid Im going to fall. Ear pain people moving up and down when you walk and even people walking around you sets you off. Being nauseas light headed and dizzy all the time is a challenge. But I keep pushing myself. I need to get home to my kids and my two jobs. These posts are a little frightening does it really last that long. Very nervous Help!!!

Hi

just read your post. Same symptoms as minebut all my efforts are going into my neck. Has anyone mentioned cervical spine problems as cause? 

Yes my neck is making me dizzy also cervicogenica or something like that I'm holding my head so focused on things in front of me to help with dizziness that my neck and shoulders are a mess. Seeing a neuro ophthalmologist Friday to get more info on this diagnosis of vestibular neuritis. I did get a diagnosis from a vestibular ENT though so know that is the main problem. Wish you luck

Hi there I hope you are getting better! I wanted to share my story to let you know that it does get better even though it is extremely frustrating . I came down with what was eventually diagnosed as vestibular neuritis in June of 2014. I was out in an ambulance because I couldn't get up off the ground and my partner had to stay home with me for the week because I couldn't even walk myself to the bathroom. It took a couple weeks before I could watch tv, and could only lay on my left side (even to eat). After testing the nerve in my right ear was permanently damaged about 40%. I didn't go to work for 2 months and even working from home it took me ages to write the simplest of emails. In retrospect I went back too soon. It was still months before I could handle the grocery store (so much head swiveling!!), crowds, roll over in my sleep or even walk half a block without seeing stars. I was just exhausted all the time and frustrated at not being able to think straight (I'm a lawyer so the only skill I had was thinking!!). I, too, am an active person, love to travel, we do agility with our insane dog, and am always out and about. Needless to say I became a hermit. I would go to work and come home and be a zombie every night and weekend. And get on a plane? Forget about it! I had to take anti nausea meds 4 times a day just to get through it (I've always gotten motion sickness so vertigo was especially dicey for me). The ENT said 18mo-2 years for recovery. And I cried. But - BUT I did my physio, walked as much as I could tolerate and about a year ago I realized I kept forgetting to take my pills because I didn't need them nor the gallons of ginger tea I had been drinking daily. My head was clear and I had...energy...!! I'm about 90-95 % now. Going down stairs is still trickier than it used to be, but my PT says a small bit of visual distortion is to be expected permanently, grocery stores can still be a pain and the change in weather can give me headaches and some dizziness. But I've climbed mountains and waterfalls in Hawaii (and, flown to Hawaii!), run agility with my pup again and roll over in my sleep whenever I want. So I guess I just wanted to tell you it is tough and discouraging but you will get better. Your body is an amazing thing. Patience is hard but once you fell yourself again, even with minor setbacks, it'll all be worth it

Jasmine, what a great story! Thank you for passing along your story! I'm 8 months in now and was making headway until a month or so ago when the nerve sent on and died completely. My last calories test showed 100% loss. It's been an extra extra extra whirly world since, and I can only do my PT every few days because of the nausea, but I'm persisting. Still not back to work, but still remaining optimistic. Exploring stem cell therapy through Okyanos. Working with the medical director to see if I might be a viable patient. They've not had a patient with 8th cranial loss, so I would be a 'first,' but the properties of my inflammatory response (the virus destroying my nerve) and the properties of adipose-derived stem cells marry fairly well. I've also had blood panels drawn for foods and pathogens to see what other inflammatory activity might still be going on in my body that could be inhibiting the progression of my compensation. And, of course, I am walking and doing exercise everyday to the extent that my nausea and energy can handle it. And staying positive!!!! Hope I get to the point of improvement that you are experiencing! I'm very happy for you!!👍👍👍

I'm sorry to hear you had a setback but happy you are staying positive. I spent the day on bed yesterday spinning more than I have in years which was a reminder that it's not something that just goes away but have to keep working on! I was still a mess 8 months in. And although I sometimes feels I lost 2 years of my life in the grand scheme things that's a small bit and, to be honest, I feel like it has changed my perspective for the better - work isn't the most important thing and I am so thankful for such a great support system - and made me a stronger person over all. (Head cold - that's nothing!). I'm also thankful that no matter how hard it gets and how much it impacts your day to day this isn't fatal. Frustrating, debilitating, and literally turns your world upside down but not fatal I hope you turn that corner very soon!!! Hang in there 😃

Hi Jasmine,

Hope you don't mind my interjecting! I'm 8 months in VN after facing a huge set back 4 months again. May I ask did you have nausea/diarreah to the extent of feeling like it was a stomach virus as well? Thought I was past this nausea phase but it has come back. Did you still have digestive upset at 8 months in?

Thanks for your positive posts!

Hi Laura,

My nausea was constant - I drank ginger tea all day and took anti-nausea pills (gravol here in Canada) for about 18 mo! I did have digestive distress from the stress / anxiety for sure. My friend is a GI doctor and recommended Align (depending where you are) which helped. But honestly the thing that helped the most was going on an SSRI for my anxiety (which got unbearable when my dad passed while I still had constant vertigo) and seeing a therapist! But ginger and probiotics (lots of yogurt!) definitely helped. Good luck! I was only getting back to rolling over in my sleep at 8 mo! But when I thought back to where I was at the beginning I knew I had made progress...and I've learned progress isn't always linear 😊

Thank you Jasmine!! It helps to know that it's normal! I keep wondering if its part of the VN 'virus' or just a symptom of vertigo. Alway feel like a bug. I just got a probiotic and started an SSRI. So sorry to hear of your Dad. That must have been so difficult. Thanks for your support.

And I'm in Canada too Vancouver.

Hey Laura, I am in Vancouver as well. What doctor is treating you? I am still yet to get a diagnosis, but have been dizzy, nauseous and headachy for two and a half months now. Had MRI and catscan but no one has said what I have. I have just been researching on my own.

Jen

Thanks, Laura! Try some align and some ginger tea and hopefully the SSRI helps - definitely better than all the Advil and gravol I was taking... you'll get through it!

Hi guys sorry to interject,,

If I could just put my symptoms forward,, I woke up one morning in June 2014 with terrible tinnitus, nausea and what I can only describe as weird vision, as if my eyes are focussing against each other..nearly 3 years later and 2 clear MRI scans and countless visits to the GP, and 2 lots of vestibular rehabilitation I still have the symptoms every day. It seems as if I get very slowly better over a long period, to maybe 80% then all of a sudden it gets worse over a few days and stays with me for a good few weeks , and so the cycle starts again. Up down up down, but mostly down! Along with all the other symptoms I get severe tiredness, lack of enthusiasm to do anything and anxiety. I have been back to my gp several times when it's bad and he keeps telling me it's down to the labrynthitis, but I'm intrigued to read about the vertibrae possibilities as sometimes I get a very stiff neck , mainly when driving. I've learned to cope when it's the UP cycle, but man, is it horrible when it's DOWN.. but then you don't need me to tell you that. It helps to know we are not alone, but I find the hardest thing is that visually I look in good health and so people assume I am well, and sometimes I just can't be bothered to explain.......

Anyway, keep your chins up people.. all the best..

Thanks Rob. Chin up to you too! Hang in there.

Hang in there Rob!! Not to sound like a pusher but have you tried an anti-depressant? My ENT said that if symptoms didn't subside after 2 years that's what they prescribed (regardless of your mood) because the drug treats the same problem in the brain - the vertigo is your brain is caused by it misreading the cues that it's being sent (i.e. acting like you're not upright even if your eyes are telling it you are) and the drugs treat that the same way as it treats mood disorders which is also your brain misreading situations and causing anxiety / depression... Do what you're comfortable with and know that it gets better and you're not alone!! I'm going through a set back right now and it's super frustrating to have to limit my life again but I am telling myself it's temporary

Also, the whole invisible illness thing was super hard for me, too. Sometimes I just wanted to put bandages on my head so I wouldn't get looks when I didn't offer up my seat on the subway because if I stood I'd puke! But it definitely made me a more empathetic person...

Thanks for the reply Jasmine, re anti depressants, I'm not sure if that is an option that I'll be offered here in the U.K., but I do know that there are some migraine tablets that are also used as an anti depressant as my daughter had them when she was suffering from bad headaches a couple of years ago (anatriptoline) or something like that. So I may ask.....The strange thing is that I have never really had the vertigo episodes but I have a constant dizziness and the feeling of being in a dream as other people have said. Anyway, I'll update once I have been back to see the doc. I hope your set back is not too long. Good luck everyone and try as hard as it is to keep positive.

Hi Rob - that foggy feeling is definitely almost as bad as the dizziness itself. It's so curious that treatment varies from country to country. I hope you find something that works for you - my head is much clearer today and I hope you can have that soon too.

Thanks again Jasmine. It's been a nice warm day today and we went out for a few hours. I definitely feel better when the weather is nice and I'm out in the open.

Keep well. Bye for now....

Hi Rob,

I think we have liaised via the Patient site before?  Like you I got dizzy in 2014 and after seeing numerous Doctors was diagnosed with VN.  After seeing a top specialist in Leicester he also diagnosed Migraine so put me on Amitriptyline.  These tablets were (in days gone by) prescribed for depression and anxiety but it was later discovered they helped with all sorts of other conditions.  My VN and migraine has improved no end since taking these, I only take the lowest dose of 10mg.  Getting enough sleep was always a problem for me and affected my VN badly, since taking these I get a far better nights sleep and hence feel far less dizzy.

I am now back working (since Se[ptember 2016), socilaising (go out every two weeks with mates for a drink) and doing normal day to day things.  I still feel the dizziness (mosly wanting to walk over to the left) but I don't let it interfere with my life.  Like you I have thankfully never suffered with the neausea so really feel for those that do.

Anyway, I am hopeful that this thing will eventually go completely but if it deosn't I think I have learned to cope reasonably well with it.

All the best

Laurence

 

Hi Jasmine,

?I read you have 40% loss.  Did they find that on the caloric test?  I've had problems since March 2012 and it seems like they are worse in the bad weather.  My biggest problem currently is disassociation/derealization.  I get this feeling in my head where it's like I'm not there and it quite frightening.  Did you ever have this with yours?

?I read on another website that a person said their ent said it can take up to five years for recovery.  I'm not sure if that it meant for people with vestibular loss but I figure it is because we are mainly the ones with lingering symptoms.  Were you on an antidepressant and did it help with anything like derealization?  When I'm in stores I feel it the most.  It's like I'm out of my body and it's very scary and brings on panic.  Any information is greatly appreciated!  Thanks!

Hi Laurence

Thanks for that reply mate, it feels some what better to know that there are other people with the same varying symptoms as me. I'm planning on getting to see the doctor AGAIN! this week if poss so I'll talk to him about the amytriptiline and see what he says. Hope you continue to feel relatively well. Can you tell me, do you have tinnitus?

Take care

Rob

Hi Nikki,

I'm not sure what the names for the tests actually are (sorry!) but I did the Ike with the blackout goggles and lights on the ceiling and the water in my ears (ugh!). It was actually the tech that told me the differential not the dr. So my right systems is at about 60%.

And yes, I totally understand what you're feeling. When it was really bad I wouldn't even know how I managed to get home it all felt so surreal! It'll be 3 years for me this coming June and it's really the weather changes and going down stairs that still bother me the most. The weather changes just makes it feel like there's a vice on my brain and that it's just floating around my head...not exactly the kind of thing painkillers can help... But if that's as good as it gets I'll take it. It was really when the fogginess cleared that I realized I was feeling better and now I definitely don't take a clear head for granted!

Tbh, I ended up on the antidepressants after losing my dad (but having the vertigo for over a year at that point definitely contributed) so I can't be sure if it was just time or the drugs that helped (or a combination of both). I just know that would have been the treatment regardless after I hit year 2 and it was a few months after that my my head finally started to clear.

The vertigo definitely contributed to my general anxiety and panic attacks and I began self limiting a lot. So SSRIs may just help you with that - again, not to be a pusher but I think it's worth talking to a dr about. I know everyone is different but I also know how hard it is to not be able to thinks straight...

Good luck! Happy to answer any other questions.

Hi Rob,

Yes i do get tinnitus but this comes and goes.  I get a hissing noise in my ears, my consultant (Mr Rea) described this as white tinnitus.  I have come to the conclusion that this is also linked to foods and have narrowed it down to dairy and salt.

Try the Amitriptyline and see how you get on with it.

All the best

Laurence

I am approaching 1 year since I was diagnosed with VN. Most days I feel amazing. I find so much comfort and drive from the people here. I wonder from those who have been through therapy if you experience this; some days I struggle with a floating sensation, my head feels light and a little dizzy. I have trouble gathering my thoughts and ccommunicating. My words come out backwards when this feeling is at its worst. Today is one of those days. I find myself becoming frustrated and unable to explain to others why. If i try to explain im worried i will sound crazy or my family will want me to see a dr. i just think it will be a waste of time. After some rest i usually feel better. Does anyone have this?

Hi Mel,

Yes for the last year and when it flares up now that is my main symptom. When I first got it it would take me a half hour to write an email that would normally take me 5 minutes! It's so frustrating. I wasn't dizzy so much most of the time rather it was that clouded headed feeling. And I hated that I got so exhausted from doing normal everyday things. My therapist explained to me it was because my brain was working so hard at literally figuring out which way was up because it was getting competing signals from each balance system which means that there's no brain power left for the regular things. I stopped being able to understand sarcasm and would mix up words all the time. It was so frustrating! And was exhausted all the time - and that's the thing that still lingers from time to time. For me understanding why it was happening let me be less frustrated and helped me explain to people why I sounded dumb all of a sudden. And the only thing that helped was rest. I was told to literally put my head down and rest for a few minutes every hour. My PT also explained it like how you normally start the day with your energy like a full glass of water, which depletes during the day as you go about your normal routine, but with VN you start with half the glass so it delpletes that much quicker so you have to be more mindful of doing things to replenish it even for the normal stuff. Hopefully that helps you but know that your brain does adapt!!

Hi Jasmine, I tried Lexapro but I felt more spaced out and derealization with the 5mg so my doctor put me back on Imipramine. But I'm still feel derealization, not as scary as it's felt in the stores and malls but still uncomfortable even at home. May I ask what antidepressant it was that helped you? Thanks!

Hi Nikki,

Sorry for the delayed reply! I'm on Sertraline which I think is Zoloft? But I only went on it over a year into my VN and it helped tremendously with my anxiety which I think made me able to go out and do more which was key in my recovery. It was within 6 mo or so of taking it that I realized I didn't need to take anti nausea meds every day. I was on a very high dose but have since been tapering down...

Good luck! I hope you find something that works well for you. That detached feeling is the worst.

Hi Jasmine,

Has the Zoloft helped lessen the detached feeling? Also, were you told if you have vestibular loss before? Thank you for your information.

Hi Nikki,

Yes, I knew I had vestibular loss. It may have been a combination of the Zoloft and time that helped. Yes, I finally felt more present and clearer. I still get dizzy from time to time but I don't have that detached feeling anymore...

Jasmine, What do you think originally caused the detached feeling?

Hi Nikki,

I think it was just a different symptom of my brain trying to compensate that wasn't actual vertigo / dizziness. I know it's so hard to describe - I used to just say it was a headache but it obviously wasn't but it wasn't dizziness either... it was definitely the symptom that lasts the longest and I still get it from time to time especially if I'm tired / stressed / grocery shopping or in a crowd. I guess I've just learned to treat it as a sign that I need to take a time out.

So you try to ignore it and keep from panic? My problem seems to be that the disassociation feeling is scary enough to turn me into a panic attack, which probably makes the disassociation/derealization/detached feeling worse. Thank you for you help. Oh, are you able to drive and feel fine while driving?

Hi Nikki,

There's no ignoring it It took me a lot of time (and therapy) to shift my thinking from the panic and anxiety to taking a deep breath, accepting that it was happening and doing what I could to manage it and know that it would eventually pass.  I had many panic attacks too especially when things I normally loved doing (shopping, baseball games) made me feel terrible. To be honest I haven't really driven - only a couple of times in the last year and only short distances / no traffic.  I'm lucky I live in a city and can rely on public transport. That is definitely my biggest remaining fear especially in the city...

Hi Jasmine,

I just remembered two questions I had for you.

Were you ever told you had vestibular migraine without the headache?

Do you remember what your percentage of vestibular loss was?

Mine started after a sinus infection. I sometimes wonder if mine was from the sinus infection or the antibiotic. I wish I could go back and never have taken that antibiotic and just let the sinus infection run it's course. But I had a new baby and couldn't be sick. Then I ended up way worse then the sinus infection. My mom had to stay with us and help take care of my baby girl. It was frustrating and humiliating for me.

Hi Nikki,

Mine was from an inner ear infection - the first ear infection I ever had.  If it makes you feel any better I didn't take any antibiotics.  I just had a bad cold that settled in my inner ear and drugs wouldn't have done anything...

I never actually discussed the VM with my doctor, I just figured out that's what they were.  But you're right that it's not really a headache.  It's not painful just debilitating in it's own way.  Usually I take an advil, anti nausea (gravol / dramamine) and, I swear, I rub basil oil on my temples and dot the back of my neck with it. I know this sounds crazy but I was totally desperate to try anything and my sister is really into therapeutic oils so told me which were good for migraines.  It was literally the only thing (or maybe it's a combination of all 3) that got my head "straight" again so I could focus. I think mine are mainly triggered by weather changes - I always seem to know when it's going to rain.  I take the drugs, use the oil and lay down for a bit.

I had 40% loss in my right ear.

I totaly understand being frustrated and humiliated. I don't have kids but we had to send our dog to my mom's and my boyfriend had stay home from work to walk me the 20 feet to the bathroom that first week or else I would fall. But nothing you did / didn't do caused this. I was told that sometimes it happens even without an infection and they have no idea why.  We just won the worst lottery ever...but now that it's been almost 3 years that time I spent laying down to eat seems forever ago...

 

did you ever have a caloric test

Hi dee, I had a caloric test reveal 33% weakness in my left inner year a few months ago and have experienced disequilibrium ever since. I just started VRT, hope it helps. How are you doing these days? Did you have a caloric test do, CT, or MRI? I hope youre improving and staying strong. 

Hi Jasmine, I had a caloric test reveal 33% weakness in my left inner year a few months ago and have experienced disequilibrium ever since. I just started VRT, hope it helps. How are you doing these days? Did you have a caloric test do, CT, or MRI? I hope youre improving and staying strong. 

Hi Nikkie, Hi dee, I had a caloric test reveal 33% weakness in my left inner year a few months ago and have experienced disequilibrium ever since. I just started VRT, hope it helps.  I was also given lexapro but a 10mg and im feeling even more dizzy now--maybe its too strong? Im only 115lbs. anyway, how are you doing these days and did you find another antidepressant that works?

Hi Gerladine, i just got this about ten weeks ago and started vrt last week. I have inner ear weakness in my left ear and causing balance issues. May I ask how you are doing today? Any advice is greatly appeciated...

Hi Cally, how are you doing these days? i just go this a few months ago, slow improvement doing VRT. Water, vitamins, melatonin, magneisum, milk thistle, and an antihistime--hydroxine every now and then for anxiety Started on lexapro low dose. I want the swaying to go away, thats the only thing i cant stand. I dont even care about the tinnitis or hearing. Hows it going for y ou? Any suggestions?

Hhi Jasmine, how are you doing these days? Have you been improving? 

Hi Laura, have you tried magnesium? Also, feverfew might be worth a try. 

Hi Kim,

​I went of an anti-depressant in December and decided to go back on it in March.  It does not seem to be helping me like it did when I first started taking it.  I will be making a follow-up appointment soon.

what antidepressant did you take? My dr encouraged me to take it today-he said i need to tak ethe full 10mg bcause i was cuttign it in half. Are you on FB vestibular group website? 

Hi Kim,

Thanks, I'm doing magnesium, B12 shots, d.

Been following your posts on here. You're not alone! Hang in there.

Laura

Hi Terry, did you have any damage to the inner ear nerve? I know this is an old post but hoping youll get the message. I have inner ear nerve damage and am attending VRT now. Do you know if this works over time, have you gone thru this? Also, i just had a vitiamin deficiency test so ill know if theres anything else going on. 

Hi Kim,

?I am on a medicine called Imipramine.  It's an old anti-depressant.  What anti-depressant are you going to be taking. 

?Do you also have vestibular loss found on vestibular tests?

?Yes, I'm on the vestibular pages on FB.  Vestibular neuritis and dizziness and Vestibular disorders page.

 

Hi Nikki, ill post now on FB with your username in the message so you know its me, its a private board and rather chat on there...

Hi Laura,

?I was told my vemps were fine at one doctor's office and at another doctor's office I was told that they showed no activity or that there was something going on with the left ear for me.  Do you know what vemps can diagnose?

Thank you.

?Nicole

HI Jasmine, thank you for this post. I was just wondering how are you doing these days? Are you still have any residual issues and how are you handling them? 

Hi Jasmine,

You said you had vestibular loss, do you know how much and was it found on VNG or caloric tests?

Hi Kim,

Sorry for the delayed reply!  I'm doing great these days (it's been 3 years for me and for the last year I've been pretty much back to normal!). I do have some residual issues - the worst of which is I still get really bad headaches / vertigo usually when there's big pressure changes in the weather (sometimes when I'm tired and stressed too, but usually a couple of days before a giant rain / snow storm). I try and not get too frustrated and take it easy or down a bunch of Advil / anti nausea meds out of desperation.  I actually find basil oil on my temples / back of next helps too.  But I try and take it as a sign to take it easy, and I know it'll pass which is very helpful.  Going down stairs is still a bit tricky but I'm fine with compared with how it used to be...

So it will get better and even if it's not 100%, trust me, 95% feels like 100% most days

Hi Nikki,

Yes, I think I had 40% loss in my right ear, and yes it was through testing - I had both the caloric and VNG which is what determined it was VN and permanent damage to the nerve in my inner ear...

Hang in there!

Jasmine

Hi Jasmine,

I think maybe the dreamy derealization that's been affecting me so much is mostly anxiety but then I worry it'll never go away. I might ask about Zoloft. I was on Imipramine for two years and went off because I didn't feel it was working as well anymore but then I was in Walmart a month later and felt horrid and scared to death thinking I was going to pass out or die from the derealization. It felt like I was trapped inside my head, stuck in a dream and couldn't get out. So I decided to go back on it and now I'm feeling off pretty much every day. So I'm considering changing. Sorry so long. Glad to hear you're doing better.

Nikki

Hi Jasmine, 

My friend works with the oils too. Which one or which scent works best for you? What symptoms does the oil really help you with? 

I hope you’re doing well. My symptoms are acting up again and I thought about checking into the essential oils.

How is the Zoloft doing? Still making you better and lessen that scary derealization?

Thank you,

Nicole

Hi Nicole,

Sorry for the delayed reply! The weather changes are always tough but I’m getting through it - hope you are too. More good days than bad so that’s what’s important. 

The oil that works the best for me is basil oil. Not necessarily for the pure dizziness but that headache / cloudy head feeling that painkillers can’t help. I rub some into my temples and back of my neck and it often helps clear my head (sometimes with a nap, too). Yes you smell like pizza but it’s the only thing I’ve found when ibuprofen and anti nausea pills don’t do anything. Sometimes I mix it with lavender which is calming.  I tried it out of desperation, too, and ended up always having some at my desk. It’s not a cure all but definitely worth a try seeing as it can’t hurt...

Hope your symptoms settle soon!

Jasmine 

Oh and the Zoloft is still good. I’m slowly lessening my dose every month or so if I don’t see a worsening of symptoms...

Hello Laura

I’m in Uk and my daughter is in Squamish ..bc she has just been diagnosed with vestibular neuritis and is struggling . She’s had panic attacks and had had to give up working in Vancouver . She’s alone and depressed and this is the first time I’ve found a forum with people in Vancouver . Is there anyway to meet up or chat for support as she has no one .

If there is a way to make contact please let me know . I have discouraged her from googling as too many websites are making her feel that there is no hope for recovery. . Hence my contact with you and not her. It’s heartbreaking to be so far away and not be able to help . 

J

Hi June! Yes, I will private message you my contact info. I am 14 months into VN (with improvements though), and it has been quite the struggle. Lucky she has you to help like this.

Hi June,

I’m in Toronto but I’m happy to chat with her as well. I pretty much am fully recovered but it took about 18 months. It’s slow and hard but there is hope. I had a great doctor and physiotherapy and ended up seeing a therapist. It was really hard for me because I’ve never had any limitations and it was so difficult explaining what was wrong. My dad also passed away while I was still recovering. The point is you recover! And I’m happy to speak with her if she’s interested. A lot of the internet is terrible but this thread has been a great resource. 

Hi Rob 

Your symptoms are so very similar to mine that I started to get 9 weeks ago. 

However I woke one morning and collapsed that’s how it all began for me, I since am dizzy all the time weird feelings in my head / the attacks have lessened in severity but still come - I have times where I feel completely back to normal and then it’s hits again.. wondering if you’ve recovered, so scared I have this for life - anyone have great recovery stories ? 8 weeks is a long time - I’m doing VRT exercises and also acupuncture- booked to an ENT in January 

Thanks so much 

Hi Jasmine,

?How has the derealization been?  Was yours at it worst point, the scary feeling of detachment, like your head was really losing it and I explain it like being in a coma and not able to reach out to anyone.  Was yours anything like this and has the lessened a lot by now with the help of the Zoloft?  I'm also considering taking VRT again.

Thank you,

?Nicole

I am pending my diagnosis and still getting tested, but I am guessing I have VN.  About 3 weeks now.  It is reassuring to know that I am not the only one with a foggy feeling.  It is very hard to describe and there is not alot online to describe it.  I feel like I have been drugged almost all the time.  Thanks for your post.

Hi, yes you are not the only one. It gets better overview time though. If you find you need more support search vestibular support groups on Facebook. There are many good groups with many people going through the same issues. I hope you feel well soon! 

Thanks.  It would have been reassuring if most of the internet articles about VN described all of the other symptoms besides just dizziness.  Such as, fogginess, eye strain, tired, fatigue, weight loss, and anxiety about it.

Might be a reason for me to join FB.

I know! All the symptoms are just so brutal. So awful in the beginning, such a shock to the system. Will improve over time and with VRT. 

Yes, I have found lots of reassurance in the Facebook groups. Ironically I  now want to leave Facebook haha, just to get away from the phone more. 

Hi Stuart,

I’m so sorry that you’re struck with VN. I know it’s tough when no one else around you has heard of it or understands why your still not better or why it’s so bad. But it does get better! I’m pretty much fully recovered but it was a battle. But I’ll never take walking for granted again. This is a great group. Let me know if you have any questions as I’m always happy to share my experience...even though we’re all different. 

Jasmine/Stewart,

Yes, there are amazing people on here. Jasmine (and others) gave me hope invaluable advice in a really dark time.  

Jasmine I’m so glad you are doing well and still on here! Would love to hear more how you are doing only if you have time.  

Thanks Laura it’s funny because I’m literally wearing heels for the first time in years and I’m a little wobbly but very proud of myself! Not that I normally like wearing them, and they’re only 2 inches, but I’m getting married next weekend so I’m trying to practice. I didn’t even think twice when I bought them but then I realized how much balance it takes!! I hope you are doing better the spring was harder with weather headaches  but three years ago I couldn’t imagine walking straight in flats let along heels and having the energy to have a wedding. I hope you are doing better! On days I am frustrated still it helps to think about how far I’ve come

Hi Jasmine,

When did your VN hit you?  I remember you saying you were taking Zoloft.  Are you still on that?

I hope your wedding goes well.

Take care,

Nicole

Hi Stuart,

I think maybe the foggy and out of it feeling is derealization.  I get this a lot.  I have been told that it can happen from the anxiety that comes along with VN. 

I hope you feel better soon.

Nicole

Hi Nicole,

It hit me 4 years ago this month. Yes still on Zoloft, but slowly weening off thank you!!

I agree the "fog" is very hard to take.  I wish it were described more often in the literature, but that is why I came to this forum.  I see a lot of people have described it.  Doesn't cure it, but reassuring helps.

Amazing ... congrats!!! Wish you a wonderful day. Oh yeah I think I’m fine with heals for this lifetime.

I’m doing ok thanks... better. My baseline is about 80%, and it’s been about 20 months. It’s not perfect but just grateful for improvements. 

Done ** with heals

Hi Stuart.

I am 8 weeks into VN. I don't have a concrete diagnosis but the ER doc said either Labrynthitis or VN, and I don't seem to have any hearing loss, so I'm thinking VN. I understand what you're saying about the literature being vague. Even in the ER they told me my symptoms should subside "in a couple weeks"... that was 6 weeks ago.  I am 5 weeks into doing VRT and I can just now tell it's starting to work. The fog and fatigue still get me though, I even got lost on my way home from work earlier this week because my brain fog was so thick. I have trouble doing simple, normal things that I used to not even think about, such as balancing my checkbook or comprehending recipe steps I've just read. People who have not experienced it really have no idea. I am tired of hearing "what do you mean you're not better yet? You look normal".  I finally get to see the ENT at the end of next week and am hoping for some answers. 

Best of luck to you... You're in a good spot full of support and great information here. 

Hi Laura - I was about there at 20 months so hopefully you get even better over the next little while. I hope you look back and feel happy about your progress even if it seems like forever...I normally never wore heels but now I’m just proud that I can if that makes sense? But it won’t happen often 😆 

Hi Jasmine,

One last thing, has the derealization disappeared or mostly disappeared?

 

Thanks Jasmine!! That’s is great to know it’s on track. 

I’m quite sure that at about 4 months in a developed Vestibular Migraine as well, which complicated things. 

I’m still not able to exercise or do much exertion without aggravating migraines which I’m a bit frustrated with but being patient. We’re you about to get into gentle exercise at some point? Going to try swimming soon. 

tambraltn12..  This is Rebecca,I have have had mine VN for 3 years in March. I have had my ups & downs. Gone thru all the brain fog,dizziness, falling, eyes hurting & sensitive to light. After 1 year,  then the migraines started. I had regular migraines from age 2-46 & the Drs at Cleveland Clinic said they probably came back in another form. I have had 7 day migraines, 9 day, 14 day, 45 day one & thought I was going to lose my mind. That is when I started looking for anybody that was going through this. Found this group on google, & it has been a life saver. There were 3 people in the group that told me not to give up like the Dr at C Clinic told me to do. They (Drs)told me to quit looking for answers because there weren’t any. Well I did find some answers. So much for all the support of Cleveland Clinic in Fl. I went all over Fl trying to find the answers for my dizziness & foggy head. Did therapy for 6 weeks, that did nothing. Finally people on here told me they had gotten relief from a Canadian drug called 

GRAVOL. I ordered it off Amazon, you can get 40 for $10. Or 80 for $20. It is for motion sickness, but it got rid of my headache that I had for 45 days. I also had been  nauseous for 5 mos & it also helps with that. I think vestibular migraines must have the same  characteristics of a regular migraine. Get rid of the upset stomach &  nausea and you get rid of your headache. Sure has worked for me. I still have a few of my dizzy spells, but nothing like 24/7 for 2 years. It has pretty much taken over my life for 3 years but the Gravol has really helped me.  

If you want anymore info or if I can help in anyway, you can contact me on IM, on Fb as Rebecca Murphy Wells, Fort Myers Fl.... or if you want to talk & ask anything I will give you my number. I know how scary this is when you first get it, sure is life changing. I was an avid golfer & haven’t played now for 3 years. Been mostly in my house since this hit, woke up the morning after playing golf on Sat with my room spinning & nothing has been the same since. Anyway, good luck, hope you find relief soon, will be glad to talk or chat. 

...Rebecca 

Hi Nicole,

We have talked a few times over the past couple of years.  I remember that you have been struggling for quite a long time, have you not seen any improvement in symptoms over the years?

Hi Terry,

I feel like my symptoms wax and wane.  I think when I tried going off Imipramine, that it made me feel worse, so I went back on it.  I actually had an appointment today with my neuro-otologist.  He still feels it is migraine associated vertigo.  I explained that I feel anxiety is being a hindrance to feeling better.  He might put me on Zoloft but he said that I could up the Imipramine because I’m on a small dose.  One of my biggest issues is still derealization and feeling disoriented in stores.  I’m still not driving on my own any further than my daughter’s bus stop.  

How are you?

There are so many things that affect this illness.  I know that any issues with other systems seem to always impact the vestibular issues for me.  Anything stomach related or related to issues with my neck seem to add to the vestibular issues and makes things worse.  I've also had issues with Ferritin levels and recently found that I have a gene mutation that affects the absorbtion of vitamin B6 and B12.  Both vitamins being deficient can impact dizzy symptoms.  I feel that I am around 90% to 95% recovered.  I can have periods where I lapse back to 75% to 80% if I have other issues going on.(i.e. sinus issues, head cold, stomach virus, barometric changes, etc.)  It is just a constant battle it seems and I have said the same thing about the anxiety.  I tried Zoloft and Trintellix and did not do well on either.  I had nausea and vomiting with the Zoloft and derealization with the Trintellix.  I find that that is a problem for most medications for me now.  Since the VN issue I usually experience all of the side effects that a medication lists.  I do take Xanax on occasion as needed to provide some relief.

Stores can cause me issues also and large crowds or wide open spaces.  Sometimes I can go in a store and have no issues.  It's just crazy.  I plan to try to see a new Neurotologist when I can to try to see why I can't get back to normally functioning.  I think that the anxiety will always be there as long as the VN symptoms are there.  It is a natural response for the body to try to protect itself.  I have read postings from others that found an SSRI or SNRI that they could tolerate and they have said that the dizziness is still there but, being on the medication that it just doesn't bother them.

I'm not sure what the answers are but, we just keep pressing forward.  Acceptance is the hardest part and dealing with the ups and downs over such a long period weighs on you. 

Hi Laura,

There are great bunch of people on here with so much helpful information. Terry and others have helped me out a lot. My VN took about close to couple of years until I felt 95% better. At the time I was about 27 years old and pretty active. One thing that def helped me was to push myself to be active and do movements that we would generally not do on a daily basis. Tai chi, basket ball, dancing can be a great tool to get better. It does get better! Even now after 3 years.. here and there, I feel a bit dizzy at times (the feeling is very similar to being tipsy). When this happens, you must think to yourself that it's totally okay to feel that and you will not fall, just imagine you had some alcohol. Air pressure, humidity, and lack of sleep can contribute to the dizzy feeling. Once I developed VN, I finally understood why my wife always said her coordination sucked since she was a child. We believe that she was born with VN but we are not fully sure about her. As for me, I have gone through fever, headaches and all symptoms mentioned here on this thread for sure. I must say one other thing that helped me was being in the most crowded city of the world (NYC). On a daily basis, my brain must process crazy traffics, sidewalks full of pedestrians, subway full of people, noise and etc. In the beginning these things my symptoms worse and then it helped me to get better. Always try to retrain your brain with things you do not do on a daily basis. I really hope my information here helps you and others. We the people must rely on our brain every second so it can be frustrating to have something that messes with our heads. However, brain is the most powerful gift one can have, so.. try your best to protect and retrain it. 

I also wanted to thank Terry from the bottom of my heart! He is an amazing person and you all for helping out other people need!!

 

Hi Terry,

I am not sure if you remember me but I remember you! You have been the most amazing person I have ever met. I wanted to thank you for all your help when I was at my worst. I also wanted to mention that you are true champ for keeping up your work here. I wanted you to know that I feel almost 100% better now and I do get a few tipsy feeling here and there which I believe has to do with lack of sleep, humidity and air pressure and certain crowded place. However, I am very blessed to be feeling the way i feel now! I did want to mention that.. my daily sporty (tai chi, basketball, slow dance etc) activity has helped me a lot to get better with VN. I hope that it helps others. The more movements they will do the faster and better they will get. More importantly, I wanted to thank you for all you do! Please keep up the good work.

Thanks again!

 

Yes, Sham, I remember you well.  So glad to hear how well you are doing.  This has been such a long thread started by Cally over 3 years ago.  So much information has been shared and people have reached out to each other offering compassion and hope for an illness that is not well understood.  I have met people from all over the world trying to find answers.  I am a firm believer that if you have not traveled in our footsteps, you can never fully understand the pain and struggles caused by this illness.  We are all we have to offer hope and insight to help one another navigate through the bad times.  Those of us that have seen progress are blessed and we need to try to help in any way that we can as new people join this journey.  You have shared a lot of good information and hopefully others will continue to offer insight to those that need a ray of hope that there is light at the end of the tunnel.  The best advice that someone on this forum gave me almost 4 years ago was that progress with this illness is measured in weeks and months, not days.  I found that to be so true and your story seems to reflect the same.  Life is now different but, it is far better than it was when this stuff started for me.

We must never lose hope.   

You are such a nice person, so reassuring. I am still awaiting a definite diagnosis. I am getting better agonizingly slowly. For whatever it's worth I would be very relieved to get a definite diagnosis of VN since the other possibilities seemed much more scary. I'm wondering how many people out there that have been definitely diagnosed with VN have had the following weird symptoms as well:. When I I'm not at my constant Baseline queasiness I have no appetite whatsoever and have to force myself to eat. I think it's the end however because the nausea it does get worse when I move around and see if the subside when I sit still but I never get the absolute real spins. Also, I am walking around all day in a sort of drugged feeling like somebody slipped me a Mickey or something. Another symptom I have had which I have read about on other posts here is that after I do a lot of reading on the computer or some more activity my forehead and temples feel very sore and tight.

Thank you for the message! Yes I’ve had incredible help from Terry and Jasmine. Would type more but just back from a meditation retreat and completely plastered. Glad to hear another hopeful story. <3

Stuart,.. Rebecca here, I sympathize with your nausea problems. I found this thread last year when I got desperate from a 45 day migraine & nausea for 5 mos. Someone or really 3 people told me GRAVOL, a Canadian drug for motion sickness. I ordered it off Amazon, 40 for $10. or 80 for $20. The second day my migraine & nausea was gone. Now when I start feeling nauseous I take a Gravol. I have been so thankful to the ones that gave me this info. Went through the first two years with no hope, but with this I can stop the migraine. Good luck, hope this is helpful. 

Hi Terry,

Have you heard about this migraine associated vertigo?  

The doctors appt was pretty much same old thing.  This doctor feels that my issues are stemming from migraines.  I guess you can have migraine activity in the brain and it can present itself as the symptoms I've been getting.  I have told him that I don’t usually get headaches.  I’ve been told you can have this without the actual headache.  My mri or cat scan had shown migraine activity.  

I don’t know if I fully believe it because I had a sinus infection before all of this started.  I thought that was more VN.

MAV and VM are migraines without headaches. VN could have been from the sinus infection, and MAV could have been developed after that.

Swimming was the only thing that worked for me so I hope it works for you, too! Maybe the floating takes the burden off your vestibular system. I’m still hesitant to get on a treadmill and still get dizzy faster when I exert myself ( or maybe that’s just and excuse for being lazy?). I also do yin yoga which has helped with my balance and anxiety good luck!!

Hi Nikki, 

It’s mostly gone but reappears when I get headaches - usually from weather changes / lack of sleep /stress. I tend not to get too anxious about it knowing it will pass but it’s still frustrating when it happens! I hope it’s bwtter for you...

I second that gravol is a godsend! When I can’t shake a headache it usually helps and I definitely need it for plane travel. It full your brains overactity from the impact of the VN so I think that helps with the headaches.  But it also slows down you eventual recovery because of the dulling but when you need it, it works!

How are you at driving with this?  Was it bad but has gotten better with practice?

Ok thanks, looking forward to trying swimming then.  Gentle yoga works too, if I don’t over do. For some reason Yin makes me feel really sick. Treadmills are my nemesis, that’s what caused my massive set back and I think triggered VM.

Congrats again on the wedding and the heels

I don’t really drive in the city, but the few times I have I’ve been nervous but it’s been ok!

Thanks!! Yeah my physiotherapist talked about treadmills being the final frontier but I’m fine avoiding them 😂😂 sometime yin would trigger me but it helped more than not - hope the swimming works for you!!!

Hi Terry, IF you decide to try an SSRI again I didn’t get any side effects from lexepro. I few vestibular friends I made had the same experience. It wasn’t a cure, but did take the edge off things, so maybe it could get you past that last 5%. 

Thanks for all you do to help

I think that doctors get to the point that they don't really have a clue about a diagnosis.  I can understand the dilemma for them because everything does not show up on tests and it is a lot of trying to diagnose on our symptoms that we find hard to explain.  The other issue to me is that so many things make our symptoms worsen trying to treat the condition.  As I have mentioned before, most medications cause side effects or symptoms to worsen for me.  I've had issues the past couple of weeks because of summer allergies and barometric changes.

I have read that you can have vestibular migraines with or without headache.  Symptoms of migraine manifest as disturbed brain signal activity, causing a multitude of symptoms. What I cannot understand about the presumption of MAV/VM is why is there not a break.  I have read that there is a condition of chronic migraine but, I am not sure that I understand that it can exist for years with no period of calm.

There was a guy on here that was posting when you and I joined the group that had suffered for 4 years.  He diagnosed himself with MAV/VM and got his doctor to prescribe Propranolol and Prozac.  He said that after 6 weeks he was much better and could function.  He said that he still experienced occasional dizziness but, that it didn't bother him after starting the medications.  You may want to try to connect with him, his name on the forum was DizzyDarren.  

I looked back on some of the posts here and found where we first communicated 3 years ago and at that time you had been experiencing issues since 2012.  I'm sure that the weight of struggling with this for almost 6 years has taken a toll on you.  I'm not sure what all you have had checked but, I find that other things being off add to my issues.  I fould that I had low Ferritin about a year ago.  Low Ferritin causes fatigue and exhaustion.  This then adds to the VN related issues.  My Ferritin was 7 and after a year of vitamin supplement is only up to 14.  It should be around 30.  I also found that I have a gene mutation in the MTHFR gene that impacts my body's ability to absorb and use folic acid.  That impacts the absorbtion of vitamin B6 and B12, both of which cause fatigue and dizziness/lightheadedness.  I know that a lot of times on blood tests doctors think that everything is alright if the results are within the "normal" range.  The issue with that is that we are all different and our "normal" may be in the high or low point of that range.  I also found that my vitamin D was low, 26 and should be around 70.  Short of the story is that all of these things contributed to my ability to get better.

I know that our anxiety adds to our ability to deal with the issues and can cause them to spiral when they appear.  I just wonder if the anxiety and possibly some added depression from having struggled so long may be contibuting to your ongoing issues.  God knows it is hard to just function in daily life without having to deal with a chronic illness.  You are a strong person and I know that you just want to find answers and resolution to your ongoing issues.

Sent you a PM.  My response went to be moderated for some reason.

Any derealization while driving?

Thank you for all your help!

Nikki

The problem is that our body is a self-regulating mechanism. There is a reason why serum ferritin is low/high, there is a reason why Ca or B12 or D25 , D1.25 are low/high. We can't just manipulate the numbers by supplements. And MTHFR mutations are not just about folic acid. I have several mutations, and have learned about them all there is to learn. I am not going to explain much here. Check Chris Masterjohn PhD site on MtHFR, D1.25 and D25, Ca etc.,  if you are curious. And at least get familiar with what Dr.Jack Kruse teaches (be aware, he is a jerk and don't ask HIM questions), but his teaching- about non native EMF 24/7, circadian rhythm disruption and blue light toxicity are VALID.

What I am going to say as someone who has reached the point of "F ...this" that I have studied it all there is to study, done it all there is to do,  with zero results. I was sort of existing on Lorazepam, the only medicine that worked, and according to Dr.Cha study (last modified: May 12, 2018 on dizziness-and-balance-com)  works for this type of syndrome, but now it stopped working. I am not increasing the dosage. I would be equal to more hell ahead of me. And Klonopin literally tranquilized me with making things much worse when I came awake.

So try to figure out why your blood markers are off, and I don't know anyone better than C.Masterjohn; try for few months Dr.Jack Kruse routine/protocol, then see if you feel any different.

As for those who recommend 5 liters of water/day, have common sense. Anything more that 1.5-2 liter a day would harm you, diluting your electrolytes, it can even kill you.

Also check New Treatment Successful for Rare and Disabling Movement Disorder, the Mal de Debarquement Syndrome (MdDS) by Dr.Dai- low rate success for those with no no trigger (spontaneous), but still worth trying if you can afford.

Last thing, many countries are using PoNS device now, while in the US it is still not approved. The Portable NeuroModulation Stimulator, or PoNS treat brain damage by stimulating nerves on the tongue to send signals to the brain. I know it is being implemented in practice in Moscow, Russia. 

Is it best to stay active or heaps of rest to cure this illness?

If you are going to correct at least read correctly what is posted.  I did not say that the MTHFR gene mutation was about Folic acid, what I said was “I also found that I have a gene mutation in the MTHFR gene that impacts my body's ability to absorb and use folic acid.”

MTHFR is an enzyme that adds a methyl group to folic acid to make it usable by the body. The MTHFR gene produces this enzyme that is necessary for properly using vitamin B. This enzyme is also important for converting homocysteine into methionine, which the body needs for proper metabolism and muscle growth and which is needed for glutathione creation . The process of methylation also involves the enzyme from the MTHFR gene, so those with a mutation may have trouble effectively eliminating toxins from the body.  Those of us with a MTHFR gene mutation have a highly reduced ability to convert folic acid or even folate into a usable form. Research estimates that as much as half of the population may have an MTHFR gene mutation, though there are many variations of the mutation, depending on how the gene was passed down from the parents.  While this is something to look at, it is not the contributing factor for spontaneous disequilibrium symptoms but, it can add symptoms that mimic.

Also there is no such vitamin as D25 or D 1.25.  25(OH)D is the metabolite of vitamin D that is looked at as a marker of nutritional status, and calcitriol or 1-25-dihydroxyvitamin D is the fully activated hormonal form.  So, it is what vitamin D is converted into by the body’s other systems.  Not sure how all of the detail is relevant to a simple vitamin D deficiency.  I guess it would be if I were selling supplements, books or diets as Chris Masterjohn is.  By the way, as you stated, he is not a medical doctor.

I also stated in my post that “I find that other things being off add to my issue”, NOT that they created them.  Again read what is said.  I agree that low levels of Ferritin have a cause, in my case, as with most cases, it was attributed to blood loss.  Again, not the cause but, a contributor to symptoms that I experience.

Residual symptoms that I experience are the result of damage to my Central Nervous System that my brain cannot compensate for but, other things can contribute to adding symptoms if not controlled and addressed.

Maybe I’m misreading it but, I find your post condescending, curt and insulting.  Most people that post on this forum offer things from their experience.  You should do the same and not insinuate that you are some sort of expert trying to correct others.  Everything that we post is OUR OPINION AND EXPERIENCE.  Nothing more

I have been suffering for 2 months now, and had no clue what was going on until I read this whole thread. While I am sorry you are all suffering, I want to thank you for sharing your stories and offering a community of support. My neurologist at the VA Hospital diagnosed me but didn't explain anything to me. In fact, he said I should be better in one month. Is it normal to still have nystagmus after two months? THANK YOU ALL!!!

joe can you see a different specialist nuero-ontologist, otololayngologist, ent??i was diagnosed with vestibular neuritis my nuero was awful and kept telling me i would get better. then after several months she said i just might be disabled. i switched to otologonogist. i am now on meds for vestibular migraines and doing so much better. many times the doctors just say vestibular nueritis. see if you can get a second opinion.

Hi Joseph,

My dr told me only a couple of months too but in realty it took about 18mo before i felt truly normal again - i gradually got better throughout and the first few months were the worst. Did your dr recommend physical therapy? That's what helped me the most especially when it came to the nystagamus. For me that was the last thing to go but it went from being chronic (like if I watched tv for more than an hour or in any moving vehical) to being occasional. I know that doesn't sound helpful but I PROMISE it gets better over time!!!

Hi Joseph,

I have had vestibular neuritis since Jan 2017 and am still suffering now. Nystagmus went after about 4 months, but am still feeling spaced out/detached from reality almost 2yrs later.

Hello,

I also have vestibular issues for several years and I feel that scary kind of derealization/depersonalization, where you feel like you’re not there and you’re really far away and to me it’s very scary as it feels like my brain is slipping away and feels like I’m going to die. I was wondering if you have been told that you have any vestibular loss/damage. I think it shows up on the caloric exam or vemp tests.

Take care,

Nicole

I am trying to get into ENT ASAP. Thank you for the advice!

Thank you, Jasmine. I will see if i can get in with physio. The nystagmus I experience is mainly when i look far to my right and/or up. This is difficult for me as I am currently studying to become a physician, and basically have to read all day long. Days like today, when my eyes feel strained and heavy I feel very dizzy and off.

I'm a lawyer so i totally get it. Is your right ear the one thats damaged? I made my physio explain to me what was happening and it helped knowing it was my brain interpreting a faulty signal from my damaged ear and therefore telling my eyes that I was still moving when I wasn't. I know it's so hard when you're used to be able to plow through tons of reading but unfortunately you need to work with it now! I found frequent breaks helped - like 30 mins of reading then 15 of head down eyes closed to give your brain a break, and try looking to the left as much as possible to send your brain the right signals! You know you're brain is exhausted it just constantly trying to figure out which way is up so reading dense material is even more challenging!! The hardest thing to do was cutting myself some slack on what I took for granted in terms of cognitive function but slowing down did help so I didn't need to shut down completely and feel like total trash...

hi nicole

i am having a bunch of testing on the 18th. balloons and water in my ears ect to try to make me dizzy. among other things i guess. this new doctor the otolongologist is the one who scheduled it at his dizzy clinic. my ent and the awful neuro never did. i had 2 hearing tests both came back normal. so it seems im playing catchup and i have a doctor now who is finally ordering all the tests. i had a bunch of blood work done and will get the results when i see him next week. i felt the same way you described the derealization depersonalization, foggy brain. i told my husband about 3 months into this that this was going to kill me. it wasnt until i asked to try treatment for vestibular migraines that most of my symptoms are gone. my new doctor believes i was misdiagnosed with the vestibular nueritis. he said that people get misdiagnosed with it frequently when it really is vestibular migraines. have you asked your doctor about trying to treat you for vestibular migraines? you dont even need to feel the headache to have this. so you could have it and never know. 2 years is such a long time. my doctors kept changing when i would get better. couple weeks, then a couple months, then disabled. i can say i have had no brain fog, derealization since i started the norotriptiline. what do you have to lose by asking. i found out that most doctors dont know anything about this stuff.

joe, if you dont get a good response from the ENT- switch doctors. people here have recommended a nuero-ontologist. its an ENT NEURO. i am seeing a wonderful Otolongologist. regular neuro and ENTs dont know much. i dont know where you are from but i would suggest looking up a dizzy clinic in the major city near you. this seems to be where the best specialists are located. the doctors that see this every day and arent stumped with your symptoms. good luck.

Hi Nicole, what treatment you had and for how long, how you feel now?

i hope you better.

sab 

hi nicole

you asked me about a month ago if i had any damage vestibular loss. i had my testing and met with my doctor monday. i have no damage no loss my blood work is normal. so its definite he said that its vestibular migraines. which we pretty much knew based on my positive response to the norotriptiline. he is going to slowly increase med until all my symptoms are gone. its taken me 6 months to get the 100% diagnosis. 2 previous misdiagnosis.

sab is this for me or nicole. if its for me- i am being treated now for vestibular migraines. its a definite now. i feel 70 -80 better. i have my life and mind back now. norotriptiline has saved me. what about you? i have been on this treatment since august. i can work and take care of my family. i no longer have vertigo -but i do have visual vertigo periodically. i have exercises to do now. ive had all the testing to rule out damage. i had been misdiagnosed 2x. now seeing an otolongologist-he specializes in this. highly recommend this type of doctor if you can find one in your area.

Hi hmoosey,

Your tests showed no vestibular loss or damage then? Mine showed 25% unilateral damage and that's probably why I was told I had vestibular neuritis. But I was also told I had vestibular migraine. I'm at a loss and its been 6.5 years. I just do what I can each day.

hi nikki

no loss - normal. blood work normal too. i also was told VN- this was a misdiagnosis. 3 months of hell. my doctor now the otolaryngologist told me a lot of people get this diagnosis. he also said sometimes it can be both. i already knew it was vestibular migraines because of my very positive response to the norotriptiline. i cant imagine 6 and half years. can you get a doctor to prescribe you norotriptiline. he said its the best medicine to treat this-your brain needs to be reset and it takes time with slowly increasing the dosage. i have my life back. had i not asked for the med i would be sitting in a fog with no life. he said i will not be on meds forever, once my symptoms are gone, i stay on it for a few months then taper down. i am currently doing visual vertigo exercises. i hate it-he told me it would makeme dizzy and sick and it has. but i am doing everything to be 100 percent. remember with the vestibular migraines you dont actually need the pain of a headache. so it gets misdiagnosed. so dont discount it if you dont have headaches. but you do need the meds to correct your brain. and it has been a miracle for me.

and my blood work in the hospital showed high white blood cells both times. so they just assumed i had an infection in my ear. which i didnt. now white blood cell normal. i have been dealing with this since may- 6 months. 3 months so so sick, 3 months on the norotriptiline with improvement every day. once my brain cleared a bit i did start to realize that i had been having headaches behind my left eye. i just couldnt notice it in the fog.

hi hmoosey

im reading your posts with interest, diagnosed with labrintitus 5 weeks ago and struggling, i know for me its early days but its nice to know there are people on here that know what youre going through, my mine problems are, tiredness, foggy/dizzy head, pressure headaches i literally feel ok one minuet do somthing small then feel shattered im also so anxious which is new to me, its awful, had mri will get results next week and depending on them will see ENT next. I read on here about drinking lots of water which is an easy one to do if you have any other tips? it feels like it'll never end and because i look ok i worry that people will think im faking..... if only

hi lorri

the advice i can give you is not to just accept that diagnosis. i had been misdiagnosed 2x before i asked my doctor to try treatment for vestibular migraines. no doctors had never once mentioned this to me. i went 3 momths in hell like you, people contantly asking me if i was better, i wasnt. i looked ok physically but i was dizzy and in a fog i dont remember much. i kept being told i would get better, they kept moving the time line. my hand went numb one month into this and i had a nuero who treated me in the hospital dismiss me and say i just might be disabled. i knew knew that i was misdiagnosed. i was seeing a very nice ENT- who had thrown out there lbrythitis ect. i was told drink lots of water stay away from salt. this did nothing for me. but i started to remember that i had been having bad headaches, i asked her to prescribe me something to try, she prescribed me norotriptiline and the next day, after 1 pill, i felt like me again. she was angry at what the nuero had said and got me a coveted appt with a otolaryngologist. this is the type of doctor you should look in your area and get an appointment with. he knew everything, validated the brain fog, the dizzy, ect. said vestibular migraines especially since i had a positive reaction to the meds. so i am being treated solely by him now. he is slowly increasing the meds to reset my brain. you should also look up a vestibular PT In your area and start PT for balance and brain exercises. but all of these diagnoses mirror each other and as i was told are clinical, meaning they cant see the issues but just eliminate each one. dont just accept this labs diagnosis. you mention headaches. that is a big deal, if i had just accepted the vestibular nuerits, i would be 6 months in sitting here in a fog. i also have never had anxiety, its just not in my personality. but i started to especially going to store and work. try to find the type of doctor i suggested. a regular ENT and nuero dont know much about this. mine admitted we were going outside her expertise. try taking 800mg of magnesium this can help with the headache. also if you feel one coming on -try to write down how you were feeling before the headache, were you feeling somewhat normal? then started to feel foggy and dizzy when the headache happened. this helped me alot. take tylenol ect but your brain does need to be reset with an antidepressant most likely.

Thank you , what dose nortriptyline are you on?

i started out i think 10- and every couple months my doctor increases slowly. now im on 40. good luck to you.

Joseph,

I am following this thread, as my husband has been suffering with VN since August. He started with dizzy spells back in January and in August had an acute attack of vertigo while driving. His nystagmus was pronounced in the ER and has just started to subside. Vestibular physical therapy has helped tremendously. He still cannot drive or ride long distances and often worries if his condition will get better. He has had 4 major falls and cannot tolerate "busy backgrounds" such as grocery stores, crowds, etc. His blood pressure has also been high since all of this and is now on BP meds. The neurologist also gave him a Scopoline Transdermal Patch and that helps the nausea associated with the dizziness. He is eager to get back to work and doing things he enjoys. We too, did not get answers until we went to the Vestibular Balance Clinic at the University of Virginia. There they did the testing and he has permanent damage to the right vestibular nerve. The brain is still trying to compensate for the nerve damage. Neuro told us they had never seen a case where the individual was not back to work in a month nor did we get educated on the condition until we went to the balance clinic. It's nice to know we are not alone and that others have similar symptoms. We hope you get the answers you need. Take Care.

THEPRESTONS6207, how are you doing now? I WAS DIAGNOSED WITH RHS on MARCH 26, 2019. Dr started me on anti-virals and prednisone within the first 72 hours of symptoms so my facial paralysis, hearing loss, and pain all resolved but almost two months later and the vertigo and post-herpetic itch/pain is still constant! I have discovered that ibuprofin helps CALM it down ( sometimes it feels like squirrels are jumping around in my head!!!!!! ) I'm wondering if you are any better now since you wrote this two years ago according to the post

sorry to say that I remain in perpetual vertigo. Fortunately I am not in any pain or any of the other things you are experiencing. I hope they will pass for you. But I do remain in 24/7 dizziness. I think I’ve done pretty good for myself… Although I had to give up some of my favorite sports like skiing, swimming and cycling, I am still working full-time, coaching my daughter's softball team and looking forward to her graduating sixth grade tomorrow! Every day is exhausting, just remaining engaged and upright, but I’m doing it! I had a stem cell procedure within the first year in hopes to regenerate my damaged eighth cranial nerve, but it did not work. Since then my calorics show that I have 100% loss on the right side. At least it’s below the fork so I still have for hearing. There is a trial right now at Johns Hopkins for bilateral eighth cranial patients. I tried to qualify but I’m not 'bad' enough, meaning it’s not bilateral. They did agree, however, that 100% loss on one side is pretty horrible to live with. I have no idea if I will ever get out of this or if my brain will ever figure out to compensate, but at this point in time, I have not improved in the slightest. I’ve just learned, very well, to just live with it. I hope you have better success! this August it will have been three years.

Terry, not sure if you will see this, but did the doctors ever make a correlation between your neck issues and your vertigo? I have a cervical osteophyte at C6-C7, and am hoping an ablation to the nerve there will improve my dizziness.

Momasun, I'm so glad to hear you had good luck at UVA. I have an appointment with an otologist in Charlottesville in early June, and thinking he will refer me to the Balance Clinic. Did they put your husband on anything?

Doctors, for me at least, proved to be a waste of time. I only had a vertigo episode when the first began, accompanied by an almost complete loss of balance and vomiting. What I had, and continue to experience, is an off balance feeling and a strange spatial feeling when in certain environments. I have a lot of gastro-intestional issues as well. Still struggle with neck issues and when it flares up it makes the spatial/dizziness issues worse.