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Vestibular Neuritis

Posted , 8 users are following.

helen34461
helen34461

Hi All, 2 years ago I had gotten a bad ear infection after a trip to Disney from pool is what doctors believe.  It was misdiagnosed at first so it severly damaged my vestibular nerve on my left side with 80% weakness.  Of course this was all found out after the slew of mri's, mra's, various vestibular testing, color/hot water in ears etc.  6 months of testing and 2 rounds of vestibular therapy have not helped me at all.  I am on my 4th

specialist in NYC who finally put me on acetazolamide for the sick side effects of nausea and brain fog.  6 months into these pills and now my body is starting to become accustomed to them and are not working so well.  My symptoms are

1) Overall unsteadness and dizziness (fall to the left)

I work in NYC so my commute walking is the worst, shopping too.

2) Brain Fog - how else to explain this just a horrible feeling in my head

constantly that very rarely feels better.

3) Nausea (without the pills I could just be laying in my bed and fell like

I am going to throw up)

4) Disgust and Depresssion over this whole mess I am only 51.

I am told by many doctors 95% of people recover, right side compensates for the left side over time.  This has not happened at all.  I also have never heard of anyone having it constantly for this long.  Can someone at least tell me they are the same?  Or hopefully give me some hope please?

Helen

0 likes, 52 replies

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  • trisha99857
    trisha99857 helen34461

    Posted

    I was researching alot of stuff. I'm not dizzy to where I'm off balance but I've been lightheaded for almost 5 months now. I've been to a couple doctors quite a few times and all I kept getting were eardrops, antibiotics, and motion sickness pills. Nothing works. I research something called bppv.... that's what it sounds like. And there is an easy fix for it that ur ENT can do. I guess it is not recommended to do this therapy urself or someone who is not a specialist but you can youtube dix hall pike and epley manuver.... going to the ENT Monday and I'm curious what he has to say because I'm going to be getting on a plane in a few weeks and not sure what the danger can be
  • Notabene
    Notabene helen34461

    Posted

    I read an article by a doctor who used dilute hydrogen peroxide even in children's ears for infection,  I use it EVERY time I feel a cold or sore throat, using a pipette and diluting it (food grade12% - you can't buy the 35% here any more) to about 2%.  Gargle and drip into ear canal....it will fizz.  Read up on hydrogen peroxide therapy.  When things are as bad as your symptoms, conventional medicine is at a loss.  See a homeopath or a naturopath with medical qualifications.  There are other more natural ways especially when you are so damaged by PHARMA. 

    You must read and research and even something like acupuncture could ease some of that disabling stuff.  I recall skullcap used for similar symptoms.  I think it's [u]scutellaria (herbal pharmacopoeia)[/u]

    • helen34461
      helen34461 Notabene

      Posted

      Thank you.  I will visit the website.  The ear infection is all cleared up just stuck with the damage it left behind.
    • helen34461
      helen34461 trisha99857

      Posted

      I fly all the time for work it does not really make me feel worse.

      You should be ok but ask the doc for sure.

    • trisha99857
      trisha99857 helen34461

      Posted

      That makes me feel so much better I am going to talk to my doctor I'm flying for about 14 hours so I was very scared
    • trisha99857
      trisha99857 helen34461

      Posted

      Everthing I was ready online was saying not to sleep and try to keep popping my ears... I also had an ear infection but I think that's gone.. I don't want to take the chance of getting vertigo when I get off the flight.
    • trisha99857
      trisha99857 helen34461

      Posted

      Everthing I was ready online was saying not to sleep and try to keep popping my ears... I also had an ear infection but I think that's gone.. I don't want to take the chance of getting vertigo when I get off the flight.
  • Kevin5555
    Kevin5555 helen34461

    Posted

    Hello Helen, your case sounds very severe, and I haven't heard too many cases that have lasted that long.  Based on everything I've learned, the ONLY way out of it is to get your right side to compensate.  Sounds like your brain is being very stubborn.  My suggestion would be to double up on the vestubular exercises; expose yourself to the stores as much as you can, get a balance cushion, find exercises on the Internet that are different than the ones they currently have you doing, make sure you are doing some exercises with your eyes closed, be as active around the house as you can,  The dizzy expert I saw told me "make yourself dizzy."  Also, being on antidizzy medicine will slow the compensation, so you may want to quit taking them.
    • helen34461
      helen34461 Kevin5555

      Posted

      Hi Kevin yes my brain is stubborn.  I was going to have thr operation to cut the nerve but it is very invasive, not a guarantee and I could lose my hearing. Honesty I gave up on rehab.  I am active because I have to be with my job and felt that was enough. Do you really think doing exercises again could help?   I feel like it is hopeless. 
  • donna40025
    donna40025 helen34461

    Posted

    Oh Helen we are hearing you as we are all in the same boat more or less!  POP your ears and chew gum whilst on the plane that will help stop the pressure in your ears , not sure about the sleeping part as it only when your descending and ascending that causes the problems.  I'm getting to know a lot of these people that have replied to you and they know their stuff so take on board most of what they are saying and YouTube/Google a lot  what they recommend and you can take it from there. I have BPPV and still pretty bad with the headaches nausea and the spins if I tilt more to the left . Confusion when I walk into shopping centre etc. I'm on Serc Betahistine for the viertigo and I am now doing the Foster's half Sumersult in the mornings before I get my day going -  if they do a Hallpike on you and you spin out it high chance it's BPPV - that's your first step with the doctor if they haven't tried that but Since I'm not a doctor and others hear have different diagnosis of ear problems I'm not sure what else to suggest !  I'm heading to Sydney in 3 weeks for the Omniac Chair hoping that will sort out my BPPV which is 1243 km away so as you can see your not alone and it's a shocking depressing condition we have to go thru - chins up and hang in there! I'm 53 so your not alone ! 
    • helen34461
      helen34461 donna40025

      Posted

      Hi Donna.  Thanks for the advice.  The drs said defintely not BPPV. I wish it was that at least it would have a cure.  Good luck to you.  I should not be happy I am not alone but its nice to know I am not crazy. 
    • trisha99857
      trisha99857 helen34461

      Posted

      Helen, I feel for u, ur symptoms sound a little worse than mine. I've only been going this through 4-5 months now and I break down and cry alot because I'm tired of being lightheaded all the time. But I don't have vertigo and I'm not nausea. I'm just light headed everyday and feel zoned out. But it only happens at work or when I'm driving to an unfamiliar place. It's not anxiety because I've had that since I was 18 so I know that feeling. I think maybe urs wasn't treated right away and that is why u have more symptoms then me. We need to figure this out. I will let u kniw what the ENT says monday
    • trisha99857
      trisha99857 helen34461

      Posted

      I will update on my appointment just incase I'm told something that might be beneficial to ur disorder. I'm glad I found this forum because it really helps knowing that I'm not the only one dealing with this weird feeling.
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