I had my assessment for Vestibular Rehabilitation Therapy. It was a long but very thorough appointment to assess problem areas and set up exercises. The aim of course is to, well, stimulate the vestibular system so that it accommodates and adjusts to the stimulus that typically triggers symptoms. Stimulate means- shake the system up a bit so that it gets damn used to the idea.
I think it was extremely thorough and I did exceptionally well too, I think. Perhaps because I have been sleeping a bit much lately but my fatigue has also been a bit much lately- yet by doing so it actually helps my symptoms. So there is that.
I mean, I did take my clonazepam and it was in the morning, which is my best time to function, but regardless I still think overall it went quite well. I think it might be time to start cutting down on the low amount of clonazepam I am on because I have now started VRT. I will have to ask about that.
The actual testing itself was pretty cool really. I mean, it is a bit draining, to be honest. But the setup they have there is neat.
They have this machine there that is extremely sensitive to motion. So obviously when I stand and many people with balance problems stand- we sway. It is one reason I started using a cane. Because when standing in line for any amount of time I sway and it will get worse the longer I have to stand. People think you are drunk and this really pisses me off. A cane is a sign that something is Wrong and people do not bug you.
Anyway, this can detect even a slight sway in any direction. So the idea is you try to stand in the center. Or correct yourself. Because it will move according to your slightest sway. You sway forward and the whole thing tilts forward. Which is a bit alarming really. So you try to adjust to the center by tilting back to the center. At one point I felt like I was seriously Leaning Back but I was actually moving to the center. It didn’t feel like that though. Not to me. And on one I kept falling back. I just couldn’t find the center. My body kept ‘correcting’ backward until I had to catch myself. We tried that one a few times and I just couldn’t figure out how to correct myself manually. Not sure why. Anyway, I thought this thing was neat. So responsive but neat.
If I was in that thing at night when my disequilibrium is bad I have no idea what it would be like. But it would not be fun. It would be a rockin’ ride for sure!
Then there is a metal plate beneath your feet that moves and you have to balance to that. And that one I am sure I aced. I have fine reflexes. In fact, there are times I have suddenly fallen and caught myself right before hitting the ground. Automatically without thought. Still not sure how those falls happened. Almost feels like I was losing consciousness. Anyway, I didn’t face plant and that is all that counts. So that one I felt like I really did well in. Makes me think I totally could rock snowboarding after all!
They have computer screen tests. And shaking your head till your brain rattles tests. And balance tests. And walking and turning tests. The walking in a line foot by foot test which I really suck at for some reason. And standing on one leg which I also am not so hot at but I suspect might by my crappy knees.
Some problems I didn’t anticipate and I suppose I should have are:
- Hypermobility syndrome: I actually think some balance issues with some of these tests they have given me are actually just do to my really hypermobile joints. I don’t much think about it because those joints cause pain as well. I tend not to think much about the fact that they still do not have as much stability and that is why the pain clinic has me doing specific physio exercises for my knees, for example, to strengthen them. So standing on one leg and not having good balance may be Less a vestibular issue and Way more a hypermobile weak knee issue. So I am really going to have to do those knee exercises daily now. Otherwise some stability issues are literally just going to be because my knees are weak.
- Pain: Obviously, pain is an issue with fibromyalgia. I didn’t think it would be for these vestibular exercises but weirdly enough when I got home I was in a lot of pain. I am forcing specific muscles to work to try and keep me balanced that is really pissing my body off. I think getting around this might be doing some every day stretches to loosen things up a bit in the morning. Because generally my muscles are very tight. I suppose that is a pain thing. I always try to ‘stretch out the pain’ but it never seems to really work. But I suppose it might help a bit. And then I think an afternoon bath with Epson salts might also help. And more stretches again in the evening. Just to keep things loose-er, anyway.
- Migraine: Turns out the VRT exercises that involve head movement are sort of a migraine aggravation. Go figure. I treated a migraine before I went in for my assessment. So I was good to go. And I went home… with a migraine. So… that was not cool. And the first day of my VRT at home I had a hell of a day. No migraine at first. But the end of the day one hell of a migraine. I mean, a nasty beast of one.
- Fatigue: Obviously, the issues I have been having are causing a lot of fatigue. It is quite hard to do anything without wanting to just lay down after. And sometimes I need to lay down anyway. But I am so exhausted all the time. I do know the more I rest the better I feel. But that isn’t exactly a good solution either.
So obviously there will be some challenges and some pacing that will need to be done to work my VRT in my day.
The testing results
My vestibular physiotherapist said I did really well. So that is good. I believe that means the VRT will yield positive results if these symptoms are vestibular in nature. That is the kicker. If the specific symptom that is non-stop is actually vestibular. Namely, this infernal dizziness. That also makes it so hard to concentrate and focus. And has made my fatigue such a major issue.
Obviously, all the associated symptoms with my vestibular migraine disease are vestibular and I think VRT will work for that. Or I hope. I have gone back on my Sebelium medication so I hope in combo with that it will.
I am just not sure what caused that gradual onset of dizziness, cognitive issues and insane fatigue three years ago. Prior to the vestibular symptoms joining the show.
She is sure that my left ear damage that shows on one of the tests, my brain has fully compensated for. We think that occurred in 2009 due to H1N1 given I had severe vertigo during that. I mean, we can’t be sure, of course. And if that is so, of course, my brain has compensated for that some time ago. So it has nothing to do with whatever is going on now. It is just the remnants of previous damage. Or if it does, it doesn’t have much to do with it.
Vestibular migraine disease could be a problem. They were episodic and not much of an issue before. And maybe whatever caused the dizziness made them worse. Who knows. I don’t.
What the dizziness is or caused it… I also don’t know. It was weird. That is all I can say about that.
But I do know I did well on the tests and that I have my set exercises to do to improve the situation. I do know back when this all began I wouldn’t have done as well on those tests so I think I am gradually improving myself. Or it is because I am resting so much which I have noticed is improving things, but obviously, is not great for accomplishing anything.
Dizziness sucks. It is entirely too vague a symptom
I loathe dizziness as a symptom. I have truly learned to despise it. It isn’t like being lightheaded from standing up or lightheaded and feeling like your going to pass out. Or at least not That sort of lightheaded I get. I get why doctors loathe dizziness as a term as well. I have a hell of a time explaining it and describing it and I get that it is a very vague term. It sucks. All around. I wish it was something easy to cross things off a list or do tests for and just figure out. But it isn’t.
It has crossed my mind it isn’t vestibular at all and that worries me a whole lot. Because if it isn’t then who the hell even knows what it is or what is causing it. Especially if it is combined with an aggravation of my vestibular migraines because then even harder to peel apart what is going on there. It just makes no sense to me how it started. How slowly it started which is so unlike a vestibular event. It makes no sense to me that for the first while there were no vestibular symptoms at all and all it was the dizziness and the associated cognitive impairment and fatigue with it. And at the time, I definitely didn’t think it was my vestibular migraines. It felt nothing like that. But it sure got mixed up with those symptoms as well.
Now I can only hope it Is vestibular because that is all I got for a treatment plan at this point. And I really want these constant symptoms to just stop.
Vestibular Rehabilitation Therapy
VRT is different for everyone and as you might expect it starts slowly and then will get harder once your brain adjusts to the lower level. So I have some head motion exercises since my head is definitely sensitive to motion. I have some walking and turning exercises and walking and head movement exercises. That is because when I turn abruptly I will get dizzier or when I am walking and looking at something my body will totally move with that head motion. I have balance exercises with my eyes open and closed. Eyes closed because my eyes are taking some of the work for my vestibular balance which is easy to determine since I lose a lot of balance in a dark room.
I will continue to go on walks along with this and I think that will be tricky with the level of fatigue I have. -And I was right since I walked today and I think I mostly dragged myself through that. But endurance gets better when you add these sorts of things on. So it will get better day by day.
In addition to walks, part of my therapy is day-to-day things I want to increase my endurance in. Things I had to decrease that I want back into my life. Things that obviously will increase my quality of life to be able to do for longer durations without the excessive need to rest. So a very important part of this therapy. Some of that is tricky during the pandemic- we are currently in a progressing 4th wave here.
I am damn determined to do this plan as outlined to the letter. Because I am damn determined for this to improve as much as it humanly can improve. It will take work. Physio always does. I am in for it though. You can’t get results unless you do the work.