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Posted , 6 users are following.

holly08719
holly08719

Hi all,

I've been going through the ENT referral process for a few months now, have had my symptoms for just under a year. I'm yet to me officially diagnosed but have very little doubt given what I have read that I have some kind of vestibular disorder.

I'm currently signed off work because using a computer and keeping a straight posture and eye contact within meetings has become impossible. Lighting, low ceilings and crowds are also huge triggers for me. Oddly in walking in

open spaces feels fine so there's a silver lining.

A lot of what people have wrote on here has made me feel less crazy, less anxious and a little relived so I just wanted to see if anyone has experienced some additional symptoms I have. I've been having sensations in the right side of my head, almost little jolt type feelings (like when you catch yourself about to nod off and catch yourself), these scare me to be honest which then probably leads to me beginning to panic. Sometimes the sensations leave me feeling stiff in my arms and kneel like I'm unable to move. I also feel like I have a constant drooping feeling behind my eye.

-I've just had an MRI on my head and inner ear and they have come back clear.

Any thoughts or observations would be really appreciated. Cheers. Holly

0 likes, 19 replies

19 Replies

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  • aveline
    aveline holly08719

    Posted

    Hi, Holly!

    The trouble with focusing and moving your head (like looking at text and looking up to type on a computer) sound exactly like my BPPV issues when it started! I had shoulder and arm pain at that time, too, but it was a heavy bag for work that was the cause there, in my case.

    I think you should mention the jolt type feelings and rule out small seizure activity, which would probably be done with an EEG and not an MRI (I think). Good to know that your MRI was clear!

    Good Luck!

  • dee50000
    dee50000 holly08719

    Posted

    Not exactly sure this is what you are talking about, but I used to have BPPV, now resolved. Sometimes if I move my head, I get a short "half of a spin". Audiologist at my ENT office said that is the brain compensationg for what it thinks is going to ba e full-blown vertigo (BPPV) episode, but stops short of the room-spinning. I would ask my doctor if you might have BPPV. It's usally easily treated with a maneuver called the "Epley". Good luck!
  • eleftherio33095
    eleftherio33095 holly08719

    Posted

    One thing that is not clear from you description:

    Specifically, do you have vertigo (feeling of movement either of yourself or your environment)?  Or, do you feel that you are unable to focus on your environment while walking? If the answer is no to both questions, then it is likely that your problem is not vestibular in origin.

    Eleftherios S. Papathanasiou, PhD, FEAN

    Clinical Neurophysiologist

    Fellow of the European Academy of Neurology

    • dee50000
      dee50000 eleftherio33095

      Posted

      Hello Dr. Papathanasiou. I have the symptom of being unable to focus on the environment while walking. I know this is retinal slip/oscillopsia, and I am doing vestibular rehab exercises but they are not really helping. What is this caused by? I have a low VOR, failed the head-thrust test, 29% overal balance score on the posturography moving walls/floor test. I know it's brain-related, but no one can pinpoint why I have it. They say I don't fit the usual population that has this. Not hit on head, no tumor, no vestibular infection, etc. Do you have any other idea what this can be cause from? I've noticed going over bumpy road is not quite as bad as it used to be (1.5 yrs ago) but I do have the symptoms when I walk or move my head, 24/7. Thank you!
    • eleftherio33095
      eleftherio33095 dee50000

      Posted

      Your symptom description is now clearer.  I am assuming that the failed head-thrust test is on both sides.  In this case, it sounds like you have a bilateral vestibulopathy (significant involvement of the vestibular system on both sides).  Unfortunately, a significant percentage of these cases are of unknown cause.  You should continue the vestibular rehabilitation.  The fact that going over bumpy roads is not as bad as it used to be is a very good sign.

      Eleftherios S. Papathanasiou, PhD, FEAN

      Clinical Neurophysiologist

      Fellow of the European Academy of Neurology

    • dee50000
      dee50000 eleftherio33095

      Posted

      Thank you, but I am not Holly (the original poster). wink I just jumped into her post. I was tested and the calorics test showed I had signifigant bilatlateral deficits (no reaction). My ENT seemed to think it was central, because it was poor in both ears. I was referred to a neuro-ophthalmologist who is stumped (no apparent cause), but I think it might be related to my migraines (with persistant auras). I think I am having silent migraines, but that diagnosis hasn't been confirmed. I am on Mg just in case! Head thrust test was just done with my head, neither side in particular. They say it might be neuropathy of the vestibular nerves because I have diabetes, and very slight peripheral neuropathy in my feet. No where else...
    • edward76742
      edward76742 eleftherio33095

      Posted

      Hey! My ENT is having a difficult time understanding what is goin on. I have been dizzy/lightheaded, headaches, unbalanced for the last 7 months or so.. Back in Mid September I remember I had a real bad sinus cold. Used a significant amount of nasal spray to relieve stuffiness.. The sinus symptoms passed but then a few days after that I got hit with a massive blow of dizziness out of know where. Hit me so hard, I believe I blacked out for a few seconds and couldn't believe I was still standing.. Legs were extremely weak, sweating on forehead and could barely walk. Went to ER a few days later where they diagnosed me with Labrynthinitis/ear infection.. Was given Prednisone and a few days later I was 100% percent back to normal from steroid. After I ran out, a few days later symptoms came back and has never left. The first 4 months I was dizzy 24/7. Month 7, I still am but seems more mild but do usually have a period of about an hour that it hits at pretty good at work. Feels like I'm in a boat and have swaying sensation. Even falling like I'm airborne feeling at times while standing. I've had headaches most days last 7 months now. What do you think this could be?
    • eleftherio33095
      eleftherio33095 dee50000

      Posted

      Bilateral vestibular nerve involvement (even perhaps due to diabetes) is a cause of bilateral vestibulopathy as suspected by myself.  If they believe that this is the case, there should be a focus on the diabetes itself in parralel with your vestibular rehabilitation.

      Eleftherios S. Papathanasiou, PhD, FEAN

      Clinical Neurophysiologist

      Fellow of the European Academy of Neurology

    • eleftherio33095
      eleftherio33095 edward76742

      Posted

      Are these recent episodes triggered by anything, e.g body/head movement, or are they spontaneous?

      Eleftherios S. Papathanasiou, PhD, FEAN

      Clinical Neurophysiologist

      Fellow of the European Academy of Neurology

    • dee50000
      dee50000 eleftherio33095

      Posted

      Just one more question. Thank you very much. Is this damage reversible, since it is a single nerve, not a nerve bundle? My diabetes is under good control. And this would be considered "central"?

       

    • eleftherio33095
      eleftherio33095 dee50000

      Posted

      This is still a peripheral problem (not involving the brain and spinal cord). However, as with any diabetes-related neuropathy, I would expect this to be reversible at least to some extent.  However, you need to continue with the vestibular rehabiliation.

      Eleftherios S. Papathanasiou, PhD, FEAN

      Clinical Neurophysiologist

      Fellow of the European Academy of Neurology

    • edward76742
      edward76742 eleftherio33095

      Posted

      It's really hard to tell... I'm extremely busy with work as I have 5 jobs. But I've noticed, that it gets worse at the two newest ones? Being in an unfamiliar area may trigger it? I do believe when I have anxiety it does get worse.. This whole thing though has been getting a little better with time. When this started back in September, I remember after the initial attack I had to almost like teach myself how to walk again. Constant dizziness, lightheadeness, and headaches. Now everything is more mild and not as extreme all the time.
    • holly08719
      holly08719 eleftherio33095

      Posted

      Hi,

      Sorry I did not reply to this sooner. I believe so, my environment seems still but I'm definitely moving. Walking an be tricky with a sponge like feeling under my feet. Sometimes with rooms with low ceilings and bright lights I feel like I can't control my body at all.

    • dee50000
      dee50000 eleftherio33095

      Posted

      Not central, even with my palinopsia, oscillopsia, and low bilateral VOR? That is surprising.
    • eleftherio33095
      eleftherio33095 holly08719

      Posted

      The sponge like feeling under your feet may be suggestive of a polyneuropathy.  I recommend that you see a neurologist.

      Eleftherios S. Papathanasiou, PhD, FEAN

      Clinical Neurophysiologist

      Fellow of the European Academy of Neurology

    • eleftherio33095
      eleftherio33095 dee50000

      Posted

      I do not know what palinopsia is.  But the oscilopsia and low bilateral VOR is typical of a bilateral peripheral vestibulopathy.

      Eleftherios S. Papathanasiou, PhD, FEAN

      Clinical Neurophysiologist

      Fellow of the European Academy of Neurology

    • dee50000
      dee50000 eleftherio33095

      Posted

      Palinopsia is having positive after-images. Thank you for your time in answering my questions!
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