Hi, first of all, just wanted to say that I have found this site not so long ago and wanted to thank you to all for the great work on providing so much useful information and to all of those who share their stories and make us feel like we are not alone
I will try to post my story soon (a bit long, since I have been dizzy for 12 years!) but for the time being, I would like to know what is your experience/knowledge about vestibular rehabilitation therapy…
I have actually been diagnosed with MAV a few months ago and with Bilateral Vestibular Loss (almost total loss on both sides) 12 years ago. Over the past years, I have done a lot of vrt and it always helped me tremendously, to the point that I was actually dizzy/symptom free for several years. However, almost 2 years ago, I had another relapse - started with a very strong spinning vertigo and after that the 24/7 dizziness with all the other symptoms and triggers associated with it.
Because I had BVL I was told to expose myself as much as possible to the triggers so my brain would compensate, but actually what it happened was that all my symptoms got much worse, to the point that I had to go on sick leave (still am). Then I was diagnosed also with Chronic Migraine and told to avoid all my triggers (and trying some medication - now on Nortriptyline but so far not working) which to me are basically everything we have to deal with on a daily basis: computer screens, bright lights, crowds, exercice, trains, driving…
So basically, my question is: doesn’t vestibular rehabilitation basically work like exposing yourself to all the triggers that can cause a migraine? I am just confused… I know I am meant to train my brain to compensate for the vestibular damage, but at the same time, everytime I do try to train my brain, I get massive setbacks and I am unable to move for a few days…??
Well before I received the MAV DX, the very competent person giving me VRT advised me to do some, stop, accommodate/take it in. The point is to give myself an experience that allows me to adjust to challenges. Overwhelming myself with a challenge or challenges–regardless of whether they’re experiences that at other times I could handle fine–accomplishes squat.
Thanks David. I have also noticed that I should learn my limitations and stop overdoing things… Its just hard, because when I usually feel good enough to do something (could be something as simple as going to the supermarket or to a shopping mall) I usually tolerate all the visual/motion stimulation better…the problem is that the next day/days, I usually pay for it big time! So it is a challenge to learn my limitations…
Scott, thanks for the link…only after posting I realised you could actually do a search on the previous posts! I guess, regarding my question, there are a few different theories regarding vrt in patients with MAV but personally it might make sense try to control MAV first and then try vrt… At least that’s what I have decided to do, since exposing myself to a lot of visual/motion stimulation at the moment (still haven’t found the right medication for MAV), makes me feel so much worse. thanks again!
I know the opinion varies amongst doctors, but mine believes in getting the MAV under good control before embarking on any VRT. It took more than a year for my MAV to settle down, and I’ve only just started on VRT. But the audiology physiologist has made me start very slowly and build things up very gradually as she said in their experience of migraineurs at their clinic some of them don’t tolerate doing VRT very well. My consultant said about half her patients improve with VRT, but the others can’t tolerate it and it makes them worse sometimes, so I guess it’s about trying it for you and seeing if it helps. I’ve only been doing it a couple of weeks, but have found I don’t get as many problems at night (vertigo on turning over etc.) as I was having, so I’m hopeful it’s going to be a positive thing for me.
Best of luck to you.