1. Community
  2. Ears, nose, throat and mouth
  3. Vertigo and Dizziness

I think I have Vestibular Neuritis, can't sleep due to nystagmus

Posted , 4 users are following.

jlr
jlr

Hey guys, first poster here. I'm 21 from Australia, just recently turned 21 and have had what I would describe as either Labyrinthitis or Vestibular Neuritis. I take it I'm more learning towards VN since I don't have hearing loss from what I can gather. I've only seen my GP once and haven't been referred any where else. I'm about a month into this, so I take it I'm in the chronic stage of it so I'll most likely need rehabilition for it. 

I had it for a week at first when it first started, it was severe, bouts of vertigo which lasted for 10-20 seconds accompanied by 24/7 severe dizziness. I went back normal for a week, didn't have any issues, and then it hit me again a week later with only bursts of vertigo for 1 time and that was for 1 day, then accompanied by dizziness again. I had few days were I thought I was getting better again, followed by days where it was crap again. 

Within my first week of it all, I did go to the hospital in which they tested my thyroid which was normal, made me do some general eye tests like following the pen with my eyes, touching my nose then touching the doctors finger, they checked my left ear in which stated I had a 'slight' ear infection. 

Within my 3rd week I seen my GP who told me he couldn't see any case of an infection in my ear, but regarding my symptoms I explained told me I might have labyrinthitis. 

Now that I'm in my first month of having this, my dizziness as almost completely stopped, I no longer feel dizzy or "in motion" all the time, but I do get dizzy if I turn to fast or do certain actions which make me slightly dizzy. 

My vision seems to have taken quite a toll on all of this though, my depth percetion seems out of whack, my eyes seem a little slow, though they have gotten better of the weeks. 

I have problems with fatigue and "slow, heavy" body for the first few weeks, but has since seemed to have gotten a lot better, almost 100%

My main problem though currently whilst in my first month of all of this is trying to sleep with nystagmus. I don't have nystagmus in general where my ears are affected in general use, but only when I close my eyes, which makes sleeping almost impossible since my eyes just "flutter" whilst I try to sleep, it's annoying and very dibilatating since I can't sleep with this happening.

My main question is; do I have permanent damage and will I never be 100% again due to this illness, and will the nystagmus when my eyes are closed ever stop? The only thing that has helped was some oxazepam that the hospital prescribed me with for my anxiety since it basically knocks me out for the night resulting in me being able to sleep, though I no longer have any tablets left since they gave me 3 and I know that taking any type of drugs can hinder any sort of compensation process.

I'm booking another appointment with my GP in the following week, and I'll most likely force a referral to a neurologist, though I know I have either Labs or VN so it really doesn't matter, and I'll most likely just get diagnosed and referred to rehabilitation or I won't be diagnosed.

What's your guys' opinions on this? My only issue is I really hope this isn't permanent and I'm only a month in with all of this and I'm already starting to see better results, but I'm scared this nystagmus will never stop and I'm scared I'm already in the chronic stage of this illness.  

0 likes, 6 replies

6 Replies

  • eleftherio33095
    eleftherio33095 jlr

    Posted

    It does sound like vestibular neuritis the way you describe it.  During the day, your eyes have compensated as if focuses on things, but at night and with no focusing the nystagmus comes back again.

    For you to notice it at night, it also means that the loss of vestibular dysfunction must be significant on one side.  I therefore recommend not sleeping in complete darkness, and see if this helps.

    Eleftherios S. Papathanasiou, PhD, FEAN

    Clinical Neurophysiologist

    Fellow of the European Academy of Neurology

    • jlr
      jlr eleftherio33095

      Posted

      Hi, thanks for the reply. 

      Do you think there is a drug or something I can take to stop the "fluttering" over my eyes whilst I sleep? I don't have nystagmus whilst my eyes are open, only when they're shut. 

      Do you also think I'm in chronic stages of VN from my symptoms? I swear I'm like 95% dizzy free considering not even 2 days ago I have been dizzy 24/7 for a month. I'm no longer fatigued and feel heavy, my eyes seem to be moving around a lot faster rather than being "slow, stiff". 

    • eleftherio33095
      eleftherio33095 jlr

      Posted

      Can you tell me if the nystagmus is horizontal (left to right), or vertical ( up to down)?

      Eleftherios S. Papathanasiou, PhD, FEAN

      Clinical Neurophysiologist

      Fellow of the European Academy of Neurology

       

  • amanda95449
    amanda95449 jlr

    Posted

    Hi Jlr,

    I just read your post and i am also from Australia. I've been dealing with Nystagmus and Vertigo issues for about a year and a half now. The nystagmus comes and goes. There is medication that can treat it but it depends what is causing the nystagmus. I highly recommend seeing a neuro-opthamologist to get properly diagnosed and the right treatment. If you're in Sydney i can pass on the details of a great doctor who treats these conditions.

    • jlr
      jlr amanda95449

      Posted

      Hi thanks for the reply. 

      Have you been diagnosed with anything yet? My nystagmus is definitely from having this VN or Labs (not sure yet since I'm un-diagnosed). 

      I'm more country based in NSW so I'm quite some distance from Sydney. My closest place for seeing someone like that would be Melbourne. I'm only 1 month into having whatever it is that I have, and I've seen people say I'm safe until up to the 3 month mark upon then I'm entering the chronic phase of vestibular dysfunction. Is this accurately true or not? 

      I mean wikipedia states you can begin seeing improvements in 3-6 weeks and recovering time can take up to 3 months before you're normal again. 

      I just hope this nystagmus goes away and I begin coming 100% and don't need rehabilitation. 

    • amanda95449
      amanda95449 jlr

      Posted

      My diagnosis has changed a few times as my symptoms have changed. My current diagnosis is vestibular migraine. My nystagmus was quite significant with eyes both open and closed.

      The earlier you seek a professional opinion and treatment the better. When it comes to vestibular issues it's not something you want to wait on. Getting on top of it earlier than later will help in the long run and possibly help you avoid further suffering. You do not want to get

      to that dysfunction stage.

      I'm not familiar with any

      around the Melbourne area but

      if you choose to see someone make sure it is a Neuro-Otologist rather than Neurologist.

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.