So my wonderful Mass Eye and Ear doc today tells me that vestibular therapy usually doesn’t work for MAVsters. It makes them dizzier. He said sometimes if the patient is already fairly steady it can help but often it makes things worse. Thoughts anyone? Who has tried it? I did it for 10 weeks when I was first diagnosed and it seemed to work! Now about to start again and don’t want to feel worse.
And yes, it’s me AGAIN, desperately trying to figure out how to get back to where I was just 2 months ago. I can’t believe how much I took my “recovery” for granted! Silly me!
VRT was a huge help for me, but really helped once I was more stabilized with meds.
Ive had 2 shots at VRT…made me worse but i wasnt very stable at the time so thats probably why.
Useless for me. Made me very much worse once I started the ‘advanced exercises’. Stuck to light exercise and getting out into varied environments.
Respect it helps some people.
Very strange you’ve had such a significant relapse. Did you perform any physically demanding tasks in the lead up to your relapse?
Everybody’s different so you won’t know til you try it and I am convinced there’s a far greater deep of comprehension about vestibular therapy in US than the UK much as I feel rather disloyal for saying it! Personally it turned out to be a disaster for me. I did it extensively for almost six months before my MAV diagnosis and before medication. At onset The therapist said she could get me right in six months but it would be hard work for me. I worked up to five 10-12 minute sessions a day. The telling point might well be in her letter I received post diagnosis she said she’s be only too happy to treat me again once I was completely sure the MAV was totally controlled by medication. Helen
Vrt was a big help to me initially and got me mobile again, however I got to the point after 12months where I hit a plateau because I not on meds at that point. I suspect you won’t know until you try a couple of sessions, for some it’s great and for others dreadful.
I’m interested in the same question - to VRT or not to VRT. I seem to read really conflicting advice about this.
I’m doing a light programme on daily basis, accompanied by local hospital balance clinic. My physio says that because I feel considerably dizzier for a minute after completing a set, I can benefit from it, because my brain can adjust to that. So I’m giving it a go. I’m also doing this because my aunt who was dizzy for two years, no inner ear damage, suspected MAV, did intensive VRT and has now been non dizzy for several weeks…, I was very suspicious about VRT until I heard her success story. Hence my giving it a real go.
My vrt physio told me that every time you do vrt it’s good if the brain feels a little worse for a little while after eg 30 mins but the brain should learn from it and start to heal via the vrt. He told me that if my brain was in a mess longer than this after each session, to pause because I’d overdone it. I had to really listen to my body doing the vrt exercises 3 times per day. At the time I was off work which helped because I can see how driving your way thru vrt exercises, working full time, caring for family etc… Could push anyone over the edge… I think the approach with vrt is like how we approach the meds and just go low and slow to trial it.
Have you read what Dr Hain writes about vestibular compensation. Might help you decide. Helen
Particularly liked the statement “Many processes that impair vestibular function are time-limited, and recovery occurs because the lesion has disappeared rather than because of any neurological mechanism invoked by the patient.”
Given I personally have had a physical injury to my ear I can attest to the feeling my recovery is largely due to fundamental healing.
I agree with @nin, you should feel a bit worse but then heal quickly from the VRT exercise. I have had success at times with it, I would try again if I were you, just go nice and easy!
I am beginning to think more and more that most MAV are time limited. Those caused by fluctuating hormones must be too. It should surely settle when/if the hormones do,
Dr Hain doesn’t seem to speak positively of VRT in MAV patients. Dr S I know made a comment to @janb that he’d tell her if he thought she needed VRT which I found interesting. I’ve read of others on here to whom he has recommended VRT though, I suspect the MAV needs to be pretty stable before starting VRT otherwise it makes it far worse long term rather than better. I appreciate the exercises are supposed to make you dizzier so the brain recognises the problem and fixes it. That’s the theory. From personal experience here in UK I found a severe lack of expertise with therapists. They lacked depth of knowledge. Helen
Hi everyone! I did VRT for months with no real changes other than potentially more headaches due to it. My therapist was incredible and kept questioning the diagnosis’s I had up to that point since the VRT was not seeming to help. Once I received my VM diagnoses, my Dr said I didn’t need to go back to VRT since it seemed unlikely to help with VM. My own experience tells me that doing my housework (the dreaded vacuuming and mopping etc) are my own version of VRT. YMMV
Yep, you seem to have all the best VRT therapists in the US. I heard before of them recognising people have been misdiagnosed and sending them back to specialists or actually telling them they have MAV not XYZ in the first place by their reaction to treatment. That’s why I was delighted to find one who had trained in US. Unfortunately I think the one I had must have swum back to the UK and washed off any knowledge she’d had gained in the process because she proved hopeless as far as I was concerned.
Initially when recovering from MAV I think you are right about housework being enough of a VRT challenge with MAV although I really cannot imagine anybody who travels as much as you have lately still struggling with that ‘dreaded vacuuming’. I found it troublesome for ages as was trying to make a bed but I don’t really notice it now. Small steps, eh. Small steps. Helen
I really was fortunate to have a very highly skilled Vestibular therapist and one that truly cared. She was my biggest advocate during a time that I felt so alone and scared. She gave me strength to keep on keepin on. I was very emotional (as most of us are I suppose, when chronic and not having any answers) and felt so out of place in life… not knowing why I couldn’t get better. She encouraged me to test myself every day. So, while the “physical” therapies may not have helped me, the “emotional” ones did
Dr S certainly hasn’t suggested VRT for me yet , but we think it was the power hoop session that sent me over the edge into MAV and he told me to also avoid aerobic exercise!