The vestibular clinic adventure

Update on my vertigo situation

So I finally made it into the vestibular clinic. There were three specialists including their neurologist. They asked me a bunch of questions, went over my results, and we did the usual stand with your eyes closed sort of funness.

riding the wave of vestibular migraine

What they do know

I definitely have vestibular migraine. And since I have had that ongoing sporadically from 2009 that isn’t a surprise for me. However, confirmation is good. And they want me to go on Aimovig to treat the migraine. Since I am keen to try that myself, I am all for this.

What they do not know

So my VNG showed a difference of 45% between my left ear and the other. However, indicated no damage… so not a virus, not Meniere’s disease. What it showed instead was hyperexcitability. And they can’t explain that. No idea what it is or what caused it. So they want to do the caloric test (Part of the VNG test) where they put cold and then warm water into your ears to see if it was the test or me. If it was a faulty test we continue to treat the vestibular migraine. If it was me… then they actually do not have an answer for what is going on here.

What I think about it

I am a little worried. If it is vestibular migraine, with the features it has now, which are significantly worse than any vestibular bout in the past… well I am worried I am going to get stuck like this. Mostly because my migraines are a non-responder to preventative medication and therefore migraines have been brutal for decades.

The result I wanted was them to tell me ‘yeah, you must have gotten a virus and to correct your vestibular system you just have to do vestibular physio’. And I wanted that because VRT, vestibular physio, works quite well for some conditions. And that seemed like the best result… a way to Fix this. But they said it won’t work for me.

Because the migraines do not play nice at all. And I just do not know if any treatment for migraines will help the vertigo. A triptan will kill a migraine for me… but not the vertigo. It seems to be this oppressive entity all its own.

And the vertigo symptoms do not present as any past vertigo bout I have ever had.

Notably:

  • Symptoms are constant but worsen as the day goes on. And my symptoms were never constant even if daily for long stretches. And never got worse as the day went on.
  • I get short bursts of external vertigo… whereas before it was Always internal vertigo. Although, I do also get internal vertigo
  • The brain fog and fatigue are Immense.
  • I am best laying down, whereas before it didn’t matter at all what position I was in when it hit. In fact, laying down could be very unpleasant.

What I don’t like about it

I don’t like that my caloric test was abnormal in a way they cannot explain. I get totally why they want to do it again to confirm. But I worry it was accurate and something is going on that they do not understand. Which would leave me in limbo as to what to do about this odd situation. This happens way too often when symptoms crop up and no one can figure out the problem and we just end up brushing it off as fibromyalgia. I really do not want this to continue as is. I really want to see at the very least, some improvement in it. But I doubt I will if it is this abnormality that doesn’t fit into the right categories.

Other vertigo posts:

7 reasons vestibular migraines suck

Let’s talk vestibular migraine

VNG vertigo test
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6 comments

  1. i get your blog. i have very bad migraines often vomiting .have asthma.m.e.long list health issues .people never see
    the every day effects .i take part in a lot lot research .i do a blog.http;//mark-kent.webs.com
    i am on twitter,supersnooper

    Liked by 1 person

  2. I hope the Aimovig works for you. Must admit I know little (nothing really) about it but I’ll keep my fingers crossed for you. Typical that so often there’s no explanation for things, and I know this isn’t exactly the result you wanted. But, there are more tests, more opinions, and there’s no saying you’ll be stuck like this. When I had cluster headaches that went on for several weeks, I wondered the same. Was told it’s not typical for them to last as long as they were. Then they stopped. And back to ‘normal’ migraines which, awful as they are so damn regularly, are treatable with triptans. I’ve I guess I’m clutching at straws but trying to say hold onto a little hope. It must be so disheartening and worrying, but extra stress is the last thing you need. What’s next.. are they just having you start the Aimovig and see how things go, follow up with you in a few weeks..?
    Caz xx

    Liked by 1 person

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