I had my last VRT (Vestibular Rehabilitation Therapy appointment today. And it was partially successful. And partially not.
Successful in some areas
There are habituation exercises to help you make rapid head movements that I can now do. Like nod or look at someone while walking or look suddenly away… and these mostly do not bother me (unless I have a vestibular migraine or it is a bad day). But mostly this is quite good now.
My balance is quite improved as well. Such that I am not walking like I am drunk. I do not need my cane to walk. I don’t feel really unsteady. (When I don’t have a vestibular migraine and it isn’t a bad day. This is sort of variable.
It is improved a lot but I am still on .50 of clonazepam and without that, I still get some mild/moderate disequilibrium and then sudden drops of disequilibrium, and sudden drops where I just fall forward. It can be erratic. I still do all right on the exercises though and I am more stable. It is just without my medication I believe my vestibular migraines are pretty commonly spitting out symptoms- and with it also, just some are sort of suppressed with that medication and others just are not. And certainly, some days medication doesn’t matter because I guess my vestibular migraine is more severe and everything is just way wonky.
Things that are the same
Obviously, the vestibular migraines are the same. And they are still way more frequent than they ever were prior to the onset of daily symptoms. And no longer respond to the preventative medication they used to.
See post: Let’s talk vestibular migraine
That is a problem because only the clonazapam is making the daily symptoms decent. I can be pretty unsteady otherwise and unpredictably fall as well without it. And that gets annoying fast. (Still VRT made me more stable. With more of a sense of balance than I had for sure) But the more aggressive symptoms are pretty much beyond that medication and come as they please and last as long as they please.
The super confusing dizziness symptom I have a hell of a time explaining and comes with some serious cognitive problems as it gets more severe hasn’t changed at all. It is a Huge functionality problem. I can’t drive more than 10 minutes with it. I can’t work at my desktop computer for more than an hour without it getting completely intolerable. I can’t do any activity, like housework for long, without a good break between anything. And at least one good nap a day.
It is disorientation. It can make me confused. It makes it hard to focus. I try to ignore it but the fact is, the more I do and persist in doing anything the worse it gets. And if I persist then it stays severe the rest of that day and sometimes into the next. I must pace everything. I have No endurance at all to do anything for long. So it is a Big problem. And VRT did nothing for that. Sleep helps, laying down helps (sitting and standing are worse), pacing helps. Decreasing all the other vestibular crud has helped a bit.
It could be vestibular migraine-related since those have gotten so much more frequent. And VM can endure so long symptom-wise and even between attacks. VM is confusing a migraine as it is. It could be I never had that symptom Before and then it started as the VM attacks became so frequent and problematic.
I want to eliminate the possibility it might be hypermobility related though.
As in hEDS and a neck instability issue. There are some reasons to think it might be (Namely the neck exercises made my neck pain way worse, my back of the head pain worse, headaches worse, messed up my arm and hand nerve damage… so perhaps it is the cause of this dizziness) so I do want to eliminate that possibility. If this persists for the long haul and I have such limited functionality and I Didn’t at least eliminate this possibility I would always wonder. And if it Isn’t then we can definitely conclude it is severe vestibular migraine disease.
In the end, I got some functionality back in mobility. A little bit in functionality because I can do some housework if I pace and some things if I pace. And I am on less medication for sure.
Just not that much of a change. Not enough for Endurance in activities. Not enough to drive much. Not enough to sit at a computer desk for over an hour. Both are pretty important for basic functioning for me.
If I pace a lot, take a lot of rest breaks lying down, a nap or two, I can do things (as long as I am careful what I choose to do and how long I choose to do it for). But not every day. Some days are just not good dizzy-wise or vestibular migraine-wise (Not counting bad pain days with migraine attacks or fibro pain which obviously are also a problem of their own). But I have learned to utilize the average day usable hours pretty well with my new Time Planner app.
Expectations didn’t meet reality
I suppose I anticipated better results from the VRT from the initial conversation I had with the vestibular clinic. I mean, they basically made me think it would be 100% effective despite the stats I had read. And I worked really hard on those exercises. I just expected really awesome results.
Nevertheless, I did get results and that is something. The VRT therapist believes all those results are due to correcting the damage done to my left ear (maybe done years ago from N1H1) In the end I have more balance, and the ability to move my body and head without horrible symptoms most days, fewer falls… but that damned dizziness and inability to do some things for any length of time just bugs the hell out of me. And no impact on my vestibular migraines sucks but I can and will pursue treatments for that- it is just that I have never had any real response to migraine prevention. It is just complicated. Vertigo and dizziness are just… complicated. So any improvement and any inch gained in quality of life does mean a whole lot.
Maybe I can build on that bit of improvement. Maybe I can’t. I accept this is how things are right now. I have to because mourning the loss of functionality is no way to live. But I will continue to pursue more treatment. One never knows what will help.