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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

52 Replies

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  • trisha99857
    trisha99857 helen34461

    Posted

    So I went to the ENT today and he said they will run the tests on me but couldn't figure out why my doc diagnosed me with labyrinthitis. He pretty much laughed and said he doesn't think it's anything with my inner ear and if the tests comes back fine I should see a neurologist. I don't know anymore. I don't think I can get all this done fast enough. I think because I'm not nausea and my head isn't spinning he thinks it's not it. I told him it's like I have a buzz or my brain feels numb all day at work. I can't figure it out. I probably sound like a hypochondriac, but I'm at a loss here. And scared to see a neurologist but I need to rule that out
  • christine42810
    christine42810 helen34461

    Posted

    Hi Trisham my ENT sneered at me and told me I was imagining things and it was anxiety. However I persisted and saw the balance specialist (neurologist) and yes it was vestibular neuritis or labrynthitis (sometimes they use these interchangeably though strictly laypbrynthitis involves hearing loss which i didn't have). Go to the neurologist, they are the experts, and that's where you'll get help and a correct diagnosis,  all the best. Christine
  • donna40025
    donna40025 helen34461

    Posted

    Hi Trish, Helen andchristine - just adding to Christine's reply not just a neurologist but a neuriogist that specialises in balance conditions like vertigo.  Neologist  also specialise in different areas and not experts on this matter as I found out and was told by a so called expert neurologist that it was anxiety ! It has to be a specialist that deals with Balnace , BPPV , Vestibular etc - GP's have a guide book that informs them who are and aren't in this specialist field - God I've leant a lot in these past months that I've had to find out myself and not the 7 minute quack behind the desk! 
  • christine42810
    christine42810 helen34461

    Posted

    Hi all,  Donna is correct, they are called neuro otologists and specialise in balance disorders. Don't know what part of the world you are in but if you can get to one of these, best way to go. some neurologists are okay and can recognise it, but you'll really only get referred on - Again!!  Best of luck. Christine
    • helen34461
      helen34461 christine42810

      Posted

      Hi all

      Christine if the drs sneer at you they are idiots. This condition was face is really difficult to diagnose as everyone has different systems. Nerve damage is unpredictable. HonestlyI feel we have to take the bits and pieces and figure it out for ourselves since drugs or surgery do not work.  I stopped the exercise and realize I did myself more harm than good. I am so dizzy this past week. I have to get back on it and continue until I see see results even if it takes years. I think this is my only avenue to good health. Doctors are almost afraid of these type of vestibular disorders. There really no cure they have to work them selves out. Lets try to concentrate on ourselves. 

       

    • trisha99857
      trisha99857 helen34461

      Posted

      I'm going to go through the ENT therapy and try to get a neurologist this week to at least knock out all possibilities. I'm a wreck..
    • christine42810
      christine42810 helen34461

      Posted

      Hi Helen, I truly don't think the medical profession know enough about these disorders. They are winging it most of the time, I'm sure. And yes, we have to do it for ourselves, whatever it takes.
  • trisha99857
    trisha99857 helen34461

    Posted

    They do have me making an appointment today to see an otologist. So I guess do that then see a neurologist next.
  • arria
    arria helen34461

    Posted

    Hi Helen, 3 years ago I had very violent attack of spinning vertigo, vomiting, sweating, hospital, it severly damaged my vestibular nerve on my left side. Do not not know the cause, could have been virus? 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 did first year of compensation excercise ... got sciatica, argh, gone now. I was told compensation only happens in first year and that seems true for me. (Yes I have borrowed some of your words, we are so similar). I do not have Menieres, or Bppv. I do have nystagmus.

    Dr says canals are atrophied, kaput, could be from age too, so my condition is permanent. The only thing he can offer is gentamicin which will destroy my perfectly good hearing on left. also it may stop some of confused nerve impulses still fuzzing up my brain. This does not sound good. I am retired and walk with cane. I think the fuzzy brain is even worse than the lack of balance. I volunteer and look after self, but then nap in afternoon, I only do 1/2 days. Nap leaves me more fuzzy. There are no medications, just coffee.

    I have a window of clarity in the middle of the night occasionally, when I wake in the dark, with no motion, or sound my brain is clear. Yeah, I get up and search for forums :-). Sensory deprivation seems to be a help - but hard to live that way.

    I am mostly vegetarian vegan, do not smoke or drink, and my numbers are all good.

    My symptoms are:

    Overall unsteadness and dizziness, like walking on balance beam. makes me very fatigued

    Turning head to talk to friends and shopping are bad, also noise and bright light.

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

    I have felt on really hot days, like I could pass out or fall.

    Frequently fall asleep when I rest on bed.

    ps I agree with Christine, we are on our own, getting nowhere with doctors.

  • arria
    arria helen34461

    Posted

    I agree with Christine, we are on our own, getting nowhere with doctors. After 2 years of Drs, I have not seen any this year.
    • christine42810
      christine42810 arria

      Posted

      Hi Arria. Sounds similar scenario to me except I don't wake up in the middle of the night, and stay awKe that is. I have lost track of all my symptoms but the brain fog is consistent. Also i have pain in the VN affected ear that no doctor seems interested in resolving, coupled with pulsating tinnitus in the same ear (though not all the time). I am off to my GP today to try and get a referral to a decent ENT specialist as the GP has done nothing. I find this pain the most anxiety provoking. I'm not getting any hopes up that I will get an answer but feel I must do it to stave off my anxiety. I'm now going in the gym for a session. Keeps me sanesmile

      Christine

    • trisha99857
      trisha99857 christine42810

      Posted

      Hhey Christine, I also feel the doctors have no idea.. I have been finding that I am self diagnosing myself . I looked up vitamins that I lack that could cause lightheadedness. I found vitamin b, c, b12, b6, and vitamin a. I'm going to pick those up tomorrow and try that. It's not just lightheaded bit also dizziness
    • trisha99857
      trisha99857

      Posted

      Not cause, I'm sorry but prevent and help
    • arria
      arria christine42810

      Posted

      Hi Christine, I found 2 ENTs were particularly don't care, said things like 'one day it will be all gone', Hah!, 3 yrs later, the same. I do have an otolaryngologist, specialty vertigo. But even he just does yearly check and no recos but gentamicin (scary, I do not want to lose hearing and have other unknown effects).

      Sorry to hear of pain, that is one thing I have not had much of. For general ear pain I blow hair dryer into ear. Also ibuprofen and heating pad. And antibiotic like Bactrim.

      I am too fatigued for gym.

    • arria
      arria trisha99857

      Posted

      hi trish

      I am not lightheaded, more brain fog and fuzz and cannot manage any work requiring thought and concentration.  My brain is confused by faulty signals.

      i would think light headed is not enuf blood to brain, also drink more water.

      I do take D, B12, C and lutein.

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