Vestibular disorder answers

I have vestibular migraine. And I have had it since 2010. It is caused by certain motion triggers and can vary from mild to severe. Always sporadic and sometimes just unpredictable.

Vestibular disorder

Here is a good post to read about that: Let’s talk vestibular migraine

Some of my symptoms:

  • Perceived motion where there is none
  • feeling motion where there is none
  • vertigo bouts
  • constant dizziness
  • extreme brain fog
  • Just this horrible long lasting bouts of this falling sensation in my head
  • Feels like the ground is falling or moving, making you use a cane. Sometimes a drop attack where the ground feels like it is gone and you fall.
  • Eyesight problems, and seeing like warpiness

Things that make me worse

  • Reading
  • using the computer
  • watching TV
  • Too much sitting upright
  • too much standing

I was better with a lot of rest and laying down.

But apparently, vestibular migraine is not the issue I have had for the last year.

I had the VNG test for vertigo to rule out ear issues. The VNG caloric test where they shoot water in your ears and then test your reaction… on that I was very dizzy on the right side but not so much on the left.

Test came back very abnormal. 20-25% difference between the ears shows a problem and would present with symptoms. Mine are very out of whack. 45% difference and the left side is the one that is really problematic so that is why I didn’t feel that dizzy with that test… it isn’t functioning as it should.

He had no idea what the cause was. Just that it IS. And it is bad. It certainly wasn’t as bad at the beginning with brief dizzy spells and minor imbalance. But now it is constant and I use a cane.

I was profoundly relieved to hear this. I mean you Know there is something wrong. You know it isn’t like your usual vestibular migraines. And it is constant and relentless. This is proof that something aside from the migraines is the problem… well both are the problem.

So what to do? I can get treatment for the migraines. I do get botox which helps a bit. But I haven’t had much success. I am hoping to soon get Aimovig which is now in Canada. So that is all I can do on that side since I do not respond to medication.

What about this massive imbalance?

Well a temporary treatment is  benzodiazepines as they suppress the vestibular system

  • Ativan
  • Valium
  • Xanax
  • Clonazepam

I am on 1mg of Clonazepam twice a day. It has a longer life than Ativan so works better and for longer. But the reduction isn’t as much as you’d think, just makes the difference from non-functional to sort of really pacing and resting and can do a few things. But trust me that is a Big difference.

But to actually reduce it and see improvement it is vestibular rehabilitation.

Mine will take vestibular rehabilitation. I won’t be able to get into the clinic here for that right away and it is something that takes work. But it is a positive direction.

Some vertigo stats So I know in a lot of cases they never find the cause.

And the treatment for most vestibular conditions, with varying degrees of success, is vestibular rehabilitation. Certain physio programs for the person to adapt and readjust the ears or brain.

I am so happy they found the issue and we have a plan of action. If my doctor had sent me to a neurologist for this they would have assumed it was the vestibular migraine just as the ENT initially did. And then I would be stuck like this. But since she sent me to an ENT due to her concern over the severity I was able to find out the issue with my ears.

Other vertigo posts

Vertigo and Ativan treatment

What it is like cognitively with vertigo

Perks of vertigo? Not so much
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8 comments

  1. While you never wish for more medical crap to add to the list, there is relief in finding answers. I’m happy for you that someone looked beyond and and found the zebra. I hope the vestibular rehab works for you, and that you get in soon, Nikki! 💕.

    Liked by 2 people

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