My vestibular issues are what actually put me on disability, in addition to fibromyalgia and chronic migraine. Prior to my MS diagnosis. When I talked to my MS neurologist, he speculated that the vertigo issues were not MS-related. Likely because they were far too persistent, severe and constant.
What he said it was, was PPPD (Persistent Postural-Perceptual Dizziness). I will write a specific post about this because it is interesting and complex. I was given this theory by my old neurologist, so it may be accurate. My old neurologist worked at my vestibular clinic. Mostly, the PPPD diagnosis goes along with vestibular migraines and the other separate vestibular event I had, of unknown origin.
I had vestibular migraine attacks, and I had some sort of vestibular event that caused damage to my left ear. (Causing me to not respond vestibular caloric test) And that suggested something happening or Had happened to that ear. That test induces a vestibular response, except it didn’t for me. Not at all. No response at all. Given the time, I had severe symptoms so it wasn’t the only thing wrong it was just the only test to show something specifically wrong.
I went to vestibular rehabilitation and did help for a little bit. Then it flared again. And fluctuated ever since. The vertigo I had remaining since it never left, they informed me, must be vestibular migraine attacks. Which I did get, prior to the assault of severe vestibular symptoms. And then also PPPD.
Vestibular Migraine attacks
And I agree. This must be vestibular migraine attacks. In addition to other migraine attacks. Migraines change over time. And I do have chronic migraine disease. Not made any easier by my existing chronic conditions of fibromyalgia and MS.
I thought this was complicated to treat. And I don’t know what sort of preventatives will work for this compared to the migraine with aura. It seems quite tricky compared to my migraine with aura. And I have been pretty resistant to treatment regardless. Although I have had modest success with just Topamax.
I know for a fact I do get vestibular migraine attacks. But I also know there are vestibular-like symptoms outside of that. So I also agree with the MS neurologist that PPPD is still a diagnosis. I have a book on vestibular migraines specifically I want to read because I know they are tricky to treat.
This leaves me with:
Two primary diagnoses when it comes to vertigo and dizziness. Vestibular migraine attacks and then, as a result of those, PPPD (Persistent Postural-Perceptual Dizziness). The problem I find with this is that PPPD does respond to vestibular rehabilitation (VBRT reduces the severity of vestibular symptoms by 60%-80% and it did for me somewhat for a bit. Source), but it won’t if the trigger never goes away, like vestibular migraine attacks not being treated all that well. So one occurs, the migraine attacks, fairly regularly, and that triggers the other, PPPD.
But it just comes back in severity
It ebbs and flows. The PPPD side of things. Vestibular migraine attacks are what they are. And not a fun experience at all. Not any migraine is. But the PPPD isn’t constant for me. My response in my brain to the assault of the chronic migraine attacks, I guess.
It doesn’t go away though. It just never goes away. It stays in this vestibular migraine spot. Which varies from mild to severe attacks.
Then, out of the blue, I get much more consistent, persistent and severe symptoms. Starting with nausea and dizziness. Then swarmed with dizziness that is insanely intense and way beyond my bouts that are far more moderate. And balance issues due to that sudden dropping sensation, and just vestibular balance issues.
And that just hasn’t stopped for a bit here. I can’t fathom that this is vestibular migraine. Unless it is significantly worse due to spring and my lack of sleep. I assume it is the PPPD itself responding to the migraine attacks. It just, itself, gets worse. And when it does? That is not good for overall functionality. At all.
I get so sick. I feel these sensations in my head when I try to rest- like this, back and forth, back and forth. And then walking becomes problematic- with swaying and dropping sensations. I have severe bouts of dizziness when using the computer for short durations, which is so intense. So nauseating. I read that it can happen with PPPD and computer use.
The only answer here
Is back to a neurologist to treat the vestibular migraine attacks. And the PPPD. Both. And hope I do not end up back where I was with severe functionality loss- as in unable to get off the couch at all. Or walk far. I already have mobility issues without getting back to being drunk walking all the time and false sensations of falling abruptly every two steps.
This level I am at is not good. It takes a bit to get to a new neurologist. So I hope I just maintain for a bit. And then get in as soon as I can. Even a new migraine, acute and preventative treatment may help tremendously. I just do not know.
I will personally start by going for walks. Just walks. It helps to go out and about in vestibularly stimulating environments with PPPD. And then, ever so slowly, increasing that to some careful vestibular exercises, I remember. But that will be very careful given this state it is in and my other health concerns.
It is extremely complicated. A delicate to not trigger it more. But you also have to not avoid stimulating environments either.
Chronically Nikki 
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