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Vestibular Neuritis- any recovery stories?

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cally_44573
cally_44573

Hi, new poster here. Have been suffering with VN for 10 weeks. I was initially diagnosed with a gastro virus due to my main symptoms being dizziness, nausea and diarrhoea but after seeking private ENT consultant I was diagnosed with Vestibular neuronitis. I secretly suspected it was this but think I was in a bit of denial as all the stories on the Internet speak of long term chronic suffering and that terrifies the life out of me.

This condition is hell! I am dizzy and nauseous 95% of the time with lots of ear and head pressure. When I get really dizzy and sick I also get diarrhoea. I've lost a stone and a half in ten weeks as I can barely eat.  It even plagues me in my sleep with dizziness making me wake up and feel horrendous, until I get up and move about which eases it a little.  I have been off work since the start and need to return soon which seems impossible right now.

I have started seeing a physio and have been doing VRT exercises for a week which have made me feel much worse. I used to have the odd few hours where I felt okay but not in the last couple of weeks.  Can it get worse before it gets better?  Reading, writing, typing, watching TV all make me feel Worse too.  I feel like there is literally no pleasure in my life right now and I can't even get relief in my sleep.  I have two kids and have kept as a active as possible, caring for them and trying to keep life normal for them so I haven't been hiding away.  

I don't seem to have had the acute stage at the start which slowly improves, I've just been the same for about 8 weeks and worse for the last two.

im scared I'll,never get better. I would love to hear from anyone who did get better after this time, or at least improved enough to enjoy life again or who was able to return to work.  Did VRT help anyone out there and how long did it take for you to notice improvements? Sorry for all the questions! Any advice would be very welcome

Thanks

7 likes, 610 replies

610 Replies

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  • nikki1978
    nikki1978 cally_44573

    Posted

    Hello,

    Yes, doing VRT will make you feel worse before getting better, because it's working through your vestibular system and brain to compensate.  I really don't know how long until you should see a difference.  Everyone's different.  Did you have any vestibular testing to show if you have damage to the vestibular nerve?

    I hope you get better soon.

    Take care,

    Nicole

    • cally_44573
      cally_44573 nikki1978

      Posted

      Hi Nicole, thanks for your reply. The ENT consultant just tested my hearing and balance and went by my symptoms, which do seem to match VN but didn't do any damage testing.  I've eased off a bit on the VRT, especially today as I have poorly children who have been up half the night!!! Going to stick to around 5 mins three times a day for now.

      Thanks

      Cally

    • nikki1978
      nikki1978 cally_44573

      Posted

      You're welcome, Cally.  The testing I had were:

      Rotary chair

      ENG/VNG-Caloric included

      Positional testing

      VEMPs

      You might want to ask about these just so you have a complete check on your balance system.

      Take care,

      Nicole

    • charlotte57794
      charlotte57794 nikki1978

      Posted

      Hi Nikki smile,

      Do you have Vestibular Neuritis? or what are your symptoms?

      I have been diagnosed with VN and finding it very hard to live a normal life at the moment and it can be quite debilitating and depressing.

      How are you feeling now? smile

      Thank you for your time! :D

    • kim34950
      kim34950 cally_44573

      Posted

      Cally, How are you? 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. 
  • Razouski
    Razouski cally_44573

    Posted

    http://www.umc.edu/uploadedFiles/UMCedu/Content/Education/Schools/Medicine/Clinical_Science/Otolaryngology__Communicative_Sciences/Handouts/VestibularExercise.pdf

    I've been doing these VRT exercises for about 3 or 4 weeks. To begin with my vertigo got worse, but then things started to get better. I'm feeling a lot more stable now and able to go out for walks on my own, and have even managed (badly) to go to the gym for short session and a Zumba class. I have also managed to put back on the weight i lost through the nausea.

    My biggest challenge is now my hearing loss - as I'm now profoundly deaf in one ear, and unable to hear over background noise etc. But I'm trying to keep positive. I know it won't come back, just need to develop some coping strategies for that now.

    • cally_44573
      cally_44573 Razouski

      Posted

      Hi, thanks for your input . I luckily don't have any hearing issues , just pressure and burning sensations in both ears, worse in the right ear.

      I am persevering with the VRT but only doing 5 mins 3 x a day. I am active every day which I hope will help too. Fingers crossed for some improvement soon. I just hate this, it impacts on every aspect of life. I feel for you with your hearing loss , yet another cruel effect .

      It's good to hear that your VRT is working for you

      Cally

    • debora59596
      debora59596 Razouski

      Posted

      It sounds like you have Labrynthitis, similar to Vestibular Neuritis, but with hearing loss. Have you been diagnosed with this disorder? Have you sought treatment for this specific disorder from a neurotologist?
  • anne86317
    anne86317 cally_44573

    Posted

    Hi Cally, my story is very similar to yours ...mine started without warning in Jan ..2 trips to ER ...CT scans , bloodwork , IV rehydration etc etc ...I have lost 10 lbs and still have difficulty eating ( and resting ) have become very anxious particularly since I am in week 12 and will be leaving in 3 weeks for Europe ...12 day cruise etc which has been planned for 3 years ...my son is getting married in 2 weeks and given that I have difficulty in crowds and dealing with a lot of excitement ,I am a little stressed to say the least ..I have not seen ENT yet ( wait time 6 months ! ) but was at least referred to a great physio who specialises in vestibular therapy and have made some great gains though she feels anxiety is holding me back ( as well as the fact that I am making too much effort too .quickly to reclaim my life .I am trying just to move one foot in front of the other at this point but doing a lot of praying that I can manage this trip without being a complete embarassment to my wonderful, supportive husband of 38 years ...I have had many health issues over the years ( I am a retired nurse ) but nothing compares to the hell that this disease is ...best wishes to you for a full recovery !

     

    • Terry6872737
      Terry6872737 anne86317

      Posted

      Hi Anne,

      This is a rather old thread and not meaning to butt in on your response to Cally but, my recommendation to you would be to not waste your time with an ENT.  From the wait time you list I assume that you are in the UK.  The best doctor to seek out to help with your diagnosis is a Neurotologist or Otologist.  Being a nurse I'm sure that you are more than aware of the health system and issues that we face with health care.  Most on this forum will attest to the fact that their visits to ENTs were a waste of their time.  Neurotologist deal only with inner ear issues, which from you post I assume that you have.  Anxiety plays a tremendous part in this condition.  The feelings in your head create the anxiety and the two then feed off of each other.  I have been recovering from Vestibulat Neuritis for almost 13 months.  I still have bad days and some issues with light headed feelings, spatial feelings, when in large open spaces and in large stores.  The issue is associated with the vestibular occular reflex where the eyes and ears are not in sync.  May want to look into a vestibular sedative for the trip.  

    • anne86317
      anne86317 Terry6872737

      Posted

      Hi Terry, unfortunately I am on the East Coast of Canada and there is no access to an otologist here ...ugh....and yes , you are right about anxiety playing a huge role ...I do have Ativan for when the really bad times hit but am trying not to use it ...scarey dependency on that stuff but I will have it with me for the trip ...I am really pretty good in the great outdoors ...its stores and restaurants that may be my un doing ...no booked shore excursions yet ...will  haveto play all that by ear ....today has been a good one ...pray tomorrow is too ...I tend to get anxious and discouraged when I can,t string the good ones together !
    • cally_44573
      cally_44573 anne86317

      Posted

      Hi Anne, I have commented in detail further down the thread but just wanted to day I am interested to hear how you get on with your trip, I am flying in July and worried about it but determined to do it! I would just say to hang on to the thought that even though it feels awful and the anxiety makes you feel like you will pass out- you won't! During my worst attacks - I just keep telling myself nothing is going to happen and it will pass. When it does I feel triumphant! Good luck and let us know how it goes for you . If I were you I take a travel sickness med with you for the trip. Essentially with vertigo this is what you are experiencing so the boat may exacerbate it, or.... It may cancel it out! You never know. Go for it regardless .
    • janelle57186
      janelle57186 anne86317

      Posted

      I can relate have crohns colitis and had a spontaneous left vertebral artery dissection 2 years ago to find out I have a collagen disorder. Meningitis at the age of four is the reason why I got VN. I just came home this week after 3 weeks in a hospital and then to a rehab hospital. I'm completely overwhelmed with life! I am a very active person who some how worked through two years of central vertigo caused by the dissection but getting VN has been devastating. A word of advice ear plugs for the noise (I have a three year old boy and earplugs have saved me lately) which brings it down a lot; you will still be able to hear, a ton of fluids everyday and if you need it meclazine or Dramamine to help. Best of luck always here to chat. Be strong

    • kim34950
      kim34950 Terry6872737

      Posted

      Hi Terry, How are you? 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. 
  • jimmy97411
    jimmy97411 cally_44573

    Posted

    I have exactly the same feeling at the moment! I am a Vertigoer and today I picked up a phone to book for ENT specialist and guess what, I got an appointment next Monday! Dr William Conam is the top ENT specialist in Brisbane.

    I am working now. I dragged my legs to walk. If I fainted, then ambulance, what else I can do? Just keep walking and trying not to compare and assess my health status everyday. Believe that it takes time to recover and trust your body!

    • kim34950
      kim34950 jimmy97411

      Posted

      Hi Jimmy, 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?  I hope youre improving and staying strong. Kim
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