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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

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52 Replies

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  • christine42810
    christine42810 helen34461

    Posted

    I've had this for over 12 months now and whenever I get another virus I get what the specialist calls 'decompensation', IEEE go backwards with the rehab!  I don't have the nausea anymore but definitely have brainfog and lightheadness.  I do the rehab exercises and I do a lot of my own exercise as well.  I've just learnt to live with it - not saying I like it but I've given up being stressed and depressed about it because I think that just makes it worse. I am hopeful that I will recover eventually and look forward to the day when I don't even think about this thing that has affected my life.  I don't take any drugs.  BTW it affects all age groups, it's a virus and that's it really. My specialist says that everyone recovers in their own time? No comfort I know.  I have been very depressed about it but, as I said before, I think that is something you do have to try and resolve, hard as it might be.
    • helen34461
      helen34461 christine42810

      Posted

      Thanks Christine. Most days I am in your place but then some days I look around and say why me?  I know its not cancer but at least in some cases that has a cure. I am so tired of complaining about it to friends and family they just dont understand. 
  • christine42810
    christine42810 helen34461

    Posted

    Hi Helen, you're right, no-one understands, not even the medical profession, that is the hardest part, at least for me.  They say, eventually your brain will compensate - then, it has decompensated after a virus infection - then just keep doing the rehab exercises it goes on and on... But in the end I have to get on with my life as best I can and for me that involves knowing there will be bad days and good days and better days. It's a horrible thing to have to live with and I hope things start to improve for you soon. Christine
  • donna40025
    donna40025 helen34461

    Posted

    I hear you girls - Ive had this for 5 months now and can't work. Spent a lot of time researching and spending time on FB .   Depression hits hard and no one , no one understands 😢 I think I was becoming a melancholic FB stalker and shut myself down as no one understands and I was reaching out to friends who started to ignore me. Feeling good the last few days but the brain fog and slurs of vertigo remind that it hasn't gone away and lurking in the back ground. 
    • trisha99857
      trisha99857 donna40025

      Posted

      I hear you Donna, I do findeed myself crying because I just want it to go away. I'm sure ppl at work probably think I'm a hypochondriac lol as much as I have been to the doctor. It really does affect my life. It makes me scared to go do things such as drive and fly... I'm just hoping this will go away soon. U have had it since june
    • donna40025
      donna40025 trisha99857

      Posted

      yeah since June and slowly going mad ! Everyday is a lottery and I am on a winner the last few days just stopping the triggers , not getting upset or stressing about nothing because I can't afford to be as the anxiety takes over ! Doing my exercises and taking the meds prescribe to me - I have spoken to people who have slowly come out of it (months) and getting back with life , so just holding on to that and being positive as the end is near ! Fingers Crossed ! I'm in Australia (Queensland ) where are you from Trish? 
    • trisha99857
      trisha99857 donna40025

      Posted

      Hey donna, I hear ya, scared of it, this is nothing I've ever experienced. I'm in new York right but about to take a job in japan so I'm freaking out about the flying. I want the job but I am willing to turn it down if I'm going to have side effects on the plane. I have had panic attacks since I was 18 but learned to control it until I started getting this. I'm trying to stay positive. I'm seeing and ent in a couple days so we will see. I'm going mad too lol. I cry about every couple days over this

    • donna40025
      donna40025 trisha99857

      Posted

      I'm heading on a plane on the 6th October to be treated for my BPPV in Sydney (balance clinic ) only two in Australia so my flight is a few hours long ! I'm also freaking out about it but it's only a room , it's only a long room so trying for the front of the plane if I can! Or enter from the back ! Take a sedative of some sort for the trip or talk someone to travel over with you ( wow Japan that's pretty cool)! You will know when your ready , I'm only just venturing out and telling myself it's only a room.  I am a teacher and I've headed into classrooms to see if I can deal with it all and yep not ready yet but I see an improvement everytime I head in. So force yourself to the unknown before you fully  commit to Japan .  I got confused recently and threw in a holiday as I wasn't ready but a few weeks later I'm on board again to tackle it! Delay , delay if you can and take yourself to areas that are you new and just tell yourself it's only a room/space! 
    • helen34461
      helen34461 trisha99857

      Posted

      Hi Trisha and Donna. Thanks for including me. Its so nice to know Im not alone.   Trisha not sure if it will be the same for you but flying is not bad for me. I am from NY but traveled to germany twice this year and Italy for work. Last year Japan which is a awesome country. And everything moves a bit slower so should be good for you. Dont cry just do it life is short. Listen to me giving pep talks I love it.  Im going to start exercises again. You both give me inspiration. 
    • trisha99857
      trisha99857 donna40025

      Posted

      Hey donna I'm not worried about anxiety from the plane, I have no issues flying. I'm concerned about getting vertigo when I get off the plane from the pressure in the cabin. That's really why I'm going going to see the doctor. So you were just a little dizzy when flying? I can handle that, as lon as I can get myself to baggage claim lol.
  • donna40025
    donna40025 helen34461

    Posted

    Just to brighten you two New Yorkers ! I'm in the country and all I get to see is Kangaroos everyday where I live - good to hear re flying as I was stressing out about that myself !  Will find out myself in a few weeks ! Yes we can go mad together and we will understand when we do😱
    • helen34461
      helen34461 donna40025

      Posted

      I love kangaroos!  Wish I could see one. All we see here are homeless and rude New Yorkers lol. Its so busy in the streets its my biggest problem plus a bit dangerous if I am not looking around with cars, people, buses etc. they just keep coming so you constanly have to be looking. Not so easy woth VM.  I look drunk staggering to the left. 
  • donna40025
    donna40025 helen34461

    Posted

    Hi Helen and Trisha , I've just found a self help group on FB in Australia Dizzy Vestibular Australia - there could be one in USA ? It's a closed group and they  offer Drs , specialist and community chats based  on our condition !  The more we talk about it and talk with people that are dealing with it like us , we are not so much alone ( sleep tight as I know it's zzzzzzz time there)!
    • trisha99857
      trisha99857 donna40025

      Posted

      If I can't get this fixed I will definitely look into the self help group.
  • christine42810
    christine42810 helen34461

    Posted

    Hi. Donna, Trisha, Helen (hope I haven't left anyone out), great that you are coming to. Sydney to the balance clinic. I see Dr Miriam Welgampola there and thee clinic is her 'baby'!  She is reckoned to be the guru for BPPV and Vestibular Neuritis, which I have. She is brilliant and very calm and reassuring. I'm sure if it were not for her, I would be much more stressed about this 14 months down the track, than I am.  I've flown a few times since getting VN and to be honest it was fine.  I was a little unbalanced and wobbly when I got off the plane from Brisbane last time, but it didn't last very long. No ear problems at all.  So good luck, Donna, if you are by yourself and want to have a coffee with a fellow sufferer, private message me and I will give you my telephone no. I only live a short distance from RPA where e clinic is and I can meet up with you for some reassuring coffee and a chat.  Christine
    • donna40025
      donna40025 christine42810

      Posted

      Christine not sure how do you private message - I'll have my husband with me as I can become extremely ill so I can't be alone! Give me a hint on the private message and I'll contact you in the next couple of weeks ! 
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