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Unilateral Vestibular Hypofunction (more than 6 months now)

Posted , 6 users are following.

ella4447
ella4447

I was diagnosed with UVH (right side) in April 2015. Since then I have yet to experience a dizzy-free moment. For the first 2 months: very heavy dizziness and short vertigo episodes. The following 2 months I started improving slowly (no more vertigo, dizziness got milder, but still present). Then, after atempting to go back to work, things rapidly got worse dizziness wise and vertigo returned for a few weeks. Stopped work, started improving again, but a month ago, after a bad night with little sleep, the system completely decompensated and the hypofunction is very strong again (and so are my symptoms). The VRT exercises don't seem to help me, and my symptoms intensify from anything like walking to visual stimulae (TV, computer screen, shopping is a nightmare...).

Anybody out there with similar diagnosis and experiences? Anybody for whom the symptoms dissapeared? I am starting to be very worried of this neverending cycle. Any hope out there? Any advice? Thank you!

0 likes, 12 replies

12 Replies

  • lisa08672
    lisa08672 ella4447

    Posted

    Hi Ella,I've had similar problems for 5 months where it would come and go,I've now got dizziness 24/7 for 6 weeks,I'm signed off work as having tests to find out what's wrong,I'm bed ridden most the time,just eat a healthy diet and take vitamins to boost your immune system and fish oils are meant to be good,I hope you feel better soon,lisa
    • ella4447
      ella4447 lisa08672

      Posted

      Lisa, I am sorry to hear it is this serious. Let me know what your tests reveal. I have done them as well (including the caloric test and an MRI) and the conclusion was that the issue is not of a central cause, but rather peripheral UVH. Unf, it doesn't look like there is a treatment, but I am seeing another specialist in 3 weeks, so we'll see...
    • lisa08672
      lisa08672 ella4447

      Posted

      Hi Ella, I hope they can fix me or it will just go away on its own, I also hope you get some answers as your to young to have this problem, it is life ruining, Lisa x
  • arria
    arria ella4447

    Posted

    Hi Ella we do sound similar, I have UVH left side. i avoid loud noise, bright light, and do not walk much. What you call dizziness I call imbalance (I think).

    The left side is sending scrambled msgs to brain, makes me very fatigued. It is like walking on a balance beam - needs lots of concentration, I have to rest in afternoons. Office work is challenging. Its been 3 years, Specialist has not helped but does come up with some ideas, his latest is to send me to neurologist and treat as if migraines, (I do not have migraines).  All the best keep sending info.

    • ella4447
      ella4447 arria

      Posted

      Hi Arria, thank you for your account. 3 years?? That is terribly disconcerting! Could you tell me in a bit more details how did your symptoms evolve? When were you able to return to work and in general to be able to be functional? Are you still symptomatic all the time? Thank you!
    • arria
      arria ella4447

      Posted

      Hi Ella,here is info from one of my earlier posts, sorry no time to write extra tonite.

      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. I do not have Menieres, or Bppv. I do have nystagmus.

      Dr says canals are atrophied, kaput, could be from age too 75, 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. I have 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.

       

      Current - For awhile I am going to concentrate  online and use vestibular therapy and life to retrain my brain.  Must walk more.

  • carmen16297
    carmen16297 ella4447

    Posted

    Hi,

    Ive been having the very same issues almost a year now.

    I have had 20 " good days" without any issues within

    the 10 months.

    Many ER visits, Neuro, Dr visits, PT, Hospital stays and the list goes on.

    Misery, is the way to explain it.

    The only thing that somewhat works is nerve medication Xanax. It doesn't remove all symptoms but does tone them down to allow me to work sometimes.

    My Neuro Dr has as well wanted to treat me for migraines, but I'm fearful of the side effects.

    I am 49 years old, single and if I can no longer work, I am doomed.

    I will keep an eye on this feed to add any possible progress that I can, maybe one of us will stumble upon something that will work for us all?.. hopefully..

    Good luck and best wishes to you.

  • arnold05982
    arnold05982 ella4447

    Posted

    I was Dx in August of 2016 after extensive testing although symptoms were hardly noticeable but became fairly obvious by October Aathough they increased after a while they stabilised enough to allow me to have a holiday abroad but everything changed after I develop Pneumonia in April - do you know it takes 6 months to recover once you over 50 + ??

    that seemed to make the dizziness much much worse - in fact it's been downhill al the way since then in spite of  Prescribed exercises can't find anything that gives relief just some days are better some or worst

    The CT scan etc negative It seems one decompensates after a cold or even bad sleep

    im due to have a VHIT testing in Octobdr( I had to look it up

  • arnold05982
    arnold05982 ella4447

    Posted

    Is their definite evidence that poor early wakoing sleep decompensates all the benifits of vor exercises?

    any heard that ginger tea helps - I know a dr who uses it for vestibular migraine?

    • ella4447
      ella4447 arnold05982

      Posted

      Hi Arnold,

      I can tell you that exercises did not help me either. Neither did Ginger tea. However, eventually I was prescribed SSRI's and they did help, together with time. So after more than 2 years now, I am significantly better (even though not completely recovered).

    • arnold05982
      arnold05982 ella4447

      Posted

      Hi ella

      interesting to know that the ssri's helped They are treating the depression that we all get when faced with the diagnosis but wonder if it helps. The dizziness if depression was not a factor ? But perhaps it's impossible to separate the two ??

       

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