Does VRT exercises make anyone else worse or better? I started doing VRT exercises almost two weeks ago, thought I would try it, and some of the exercises make me feel way worse. I don’t seem to be getting any real benefit from it. I kinda feel it’s one of those things you try, but I don’t have much faith in it.
They made me feel far, far worse, so much so that I had to give them up. I think you’ll find a lot of people on the forum find the same thing. It’s said that feeling worse when doing them is almost indicative of having a migraine brain.
During my first spell with this - dx as labyrinthitis at the time, I started VRT and it made a huge difference, every day I was seeing improvements. I was around 97% better after 6 weeks or so. I absolutely swear by VRT.
This time round - dx with MAV I have the migraine brain, if I do a set of VRT excercises during the day, I will normally get a migraine attack by the end of the day. Interestingly though I saw Dr S last week, he is obviously well aware of this fact but has still booked me in for VRT, starting next month. I did question him on it and he said “they’ll know how far to push you”.
There have been recent papers published stating the benefit of VRT even with migraine, without migraine it has astoundingly good results.
Have you had professional therapy or just done things you’ve found on the Internet ?
I am seeing a professional. I had 3 sessions so far. I couldn’t do any of the last exercise set I was given. Made me feel too ill. It’s hard to know though, as I basically feel ill 90% of the time, so I always have symptoms, so it’s nearly impossible to know is anything helping. I just know that after doing them, I feel even worse.
I haven’t officially been diagnosed with MAV, but it’s what my VRT physio thinks may be the most likely diagnosis. I’ve been doing VRT since about March & have found it really helpful. At the beginning it was much more difficult and it made me feel a whole lot worse for days on end, I was close to giving up on it at times because of how I felt. But as I persevered with the the exercises things began to get much better and I could do them much faster/better - my gaze & balance have improved and I can do so much more now than I could a few months ago.
Every time I got a more challenging set of exercises I would feel worse again, but in time it would get better and better. If an exercise is making you feel really bad then talk about it with your physio - they’ll be the only one who can tell if it’s too much for you or not. It may be that you need to go slower or need a different approach, it happened to me a few times.
What I’ve also found invaluable is the advice from my physio and their knowledge on balance issues, they’ve helped me understand a lot of what was happening and made a very weird looking world much more understandable! Without their help I’d still be lost, waiting 7 months to see a consultant, very ill and very scared! It’s been a blessing to have someone to ask about all the weird stuff that goes with vestibular problems.
I know not everyone with MAV has had good results from VRT, but it’s worth keeping in mind that it’s supposed to challenge you and will make you feel worse for a time, don’t give up on anything without talking it through with your physio, they’ll be the best person to help you figure this out.
Will be very interested to see what VRT exercises Dr S has recommended for you. As the general advice from most MAV specialists has been to hold the VRT until the migraine patient is stablilised on meds, I assume there are exercises that can be done without making things worse and before the migraine brain is stablised. If you have the opportunity, could you ask the physio about the recent papers you mention about the benefit of VRT even with migraine. Thanks.
When we read that VRT is really helping someone, like Honeybee (which is great), and we decide to try it ourselves then it seems the most important thing is to find a physio who knows exactly what MAV is, what a patient can/cannot tolerate and whether he/she is stablised on medication. VRT covers a wide range of exercises so it would be useful to know which type of exercises are helpful and which ones make you worse!
I certainly intend to ask some questions about it - my headaches have improved on the propanolol to the point where I rarely need painkillers, although if I perform particular actions then I can feel the start of a migraine returning. Maybe Dr S thought I was ready, I did also make clear about my issues using computers and the fact I cannot work until this has improved - perhaps he decided it was worth at least trying.
I’m certainly aware of the benifits as honeybee described. When I had the replace I immediately went into VRT mode - I improved significantly (dizziness) but it seems the daily headaches were preventing full recovery and eventually it went into MAV.
Ill let you know how it goes.
I went to a therapist who specializes in VRT and the exercises did not help me at all. I went for approx. 2 months. At least I gave it a try for awhile because at that point I was willing to try anything.
HI all, unfortunately it sounds like alot of people are falling into the VRT MAV trap… I have been to NHN&N and they are the best in the UK. They have told me that it is impossible for us to get fully better unless we do VRT because the migraine damages our vestibular system to the point where it becomes so sensitive that it won’t recover without being EXPOSED to things which make it feel dizzier and worse.
The fact is, those exercises which make you feel the worst of all, are the ones you NEED to do.
I completely agree, i hate it… and it’s knowing when your migraine is too angry to handle the exercises, as somethings, yes, you shouldn’t do them or you will make yourself worse.
But as soon as you are JUST ABOUT able then you should try. I can now balance on one leg with my eyes closed, which i couldn’t do 6 months ago. A small feat, but something. I’m now trying to do the visual stabilisation exercises, which i HATE but am going to persist with.
We have to be patient with MAV, it can be a very slow road, but we can all recover. and we will xx
I am still confused by the whole VRT thing! In 2010 I had slight balance problems after a holiday in UK. We did quite a bit of walking/hiking along rugged cliff footpaths in Cornwall, climbing fells in the Lake District, etc. etc. but the balance thing didn’t bother me that much - just mentioned it to a friend when we got back. She suggested I see a neuro physiotherapist for some balance therapy which turned out to be VRT exercises involving gazing at the X on the wall & moving my head rapidly from side to side. I tried these four times a day as suggested and WHAM after one day that was the start of MAV for me!!
I was so ill afterwards that now three years on, and with things now under med control, I am still really scared of even trying the head moving exercises again. :mrgreen:
This is what I understood would happen - With MAV being a diagnosis of exclusion - meaning all tests show no signs of damage to the vestibular system and migraine causing an ‘irritable brain stem’ so when the medications calm everything down then the brain returns to normal. If this isn’t the case then if we don’t do the VRT then we will NEVER EVER get completely better - is that what the NHN&N (not sure what that stands for) mean?
Wow- So basically, you did the exercises 4 times a day for 1 day, it made you a million times worse, and you have stayed that bad for 3 years straight ever since- is that right??? That is insane! Before the VRT, was your only symptom some slight balance issues? What new symptoms came about after the VRT?
So I tried VRT about a year ago. About a month into it, my balance randomly became horrible- I would say I went from about a baseline of 75% normal to probably 10-20% normal overnight- and it has stayed that way ever since (1 year now). I have no idea if I can really blame the VRT though- this happened 1 month into it totally randomly- so I’m not sure I can really draw that conclusion. Still trying mav meds and not having much luck.
I continued with the VRT for another 2 weeks- my balance remained at my new horrible baseline- so I decided it was worthless for me to continue. I don’t know, it seems like some with mav do benefit from it, but most don’t??? I find it hard to understand how VRT can make your mav permanently worse but I guess anything is possible???
I read another story on here of a girl who just had bppv, and when her therapist was trying to do the epply on her, it triggered mav and then that whole mess started- so who really knows??? I think if you are predisposed to it happening, then it will happen, regardless of what you do or don’t do.
I don’t think not doing VRT would mean you can’t recover fully. I did it for 3.5 years and recovered at a much slower pace and then had a massive relapse. Then I went on meds and have recovered back to where I was before and probably better a lot quicker without doing much VRT at all. I think trying to do normal things and live your life as far as you can is more testing than VRT and will allow for compensation to take place. I mean yes if you sit still in a chair all day without moving your head or lie in bed then maybe you won’t ever adapt but I think most of us here are doing everyday activities as far as possible anyway and that is very testing if you think about it x
I agree with you Jem. VRT exercises put me on the sofa too nauseous and dizzy to do anything for hours. For me they were just counter productive and I found, still find, that everyday living, and particularly my work - proofreading and copy editing - have me doing similar moves as VRT all day long! I can somehow put up far more with the fall out from simply living and working than I ever could the fall out from VRT.
Yes, the VRT did make me a million times worse and no - I haven’t stayed that bad for three years because I found this forum & thought my symptoms sounded like MAV. Saw several ENTs who couldn’t give me a diagnosis. Asked my GP (who had never heard of MAV) for Nortriptyiline. Got a referral to Dr Granot, a Neurologist and MAV specialist (found his details here) and have gradually been trialling meds and slowly getting my life back!
So although I haven’t been doing any VRT exercises, as such, as my health has been improving I’ve been incorporating more activities into daily life. Being outdoors always helped, so walking was good. Finding I could cycle, fairly early on was amazing, even tho when I got off I could hardly stand without support! Also some Pilates exercises which didn’t involve any mat work or bending over worked for me.
Positional vertigo has been a big problem so head movements have restricted much of what I could do. Just the tasks of showering, dressing, getting breakfast, etc was exhausting! Topamax has helped resolve some of these issues.
As you can appreciate, I would not dare start doing any fast head movements again and possibly put myself back in MAV hell!
Still trying to understand whether I actually have any vestibular damage. If so, how does the damage occur and what part of the ear does it affect when hearing itself if fine? Does anyone know the answer? It’s something I’ve been puzzling over.
Yes from what i’ve been told by my neuro-otologist who is meant to be the best in the UK, you can’t fully recover with just meds, because the vestibular system is in need of retraining from the damage the migraine has caused. I don’t know anything more than what i’ve been told, but i’m willing to try everything. The VRT does make you feel worse, because it’s MEANT to… that is how the brain works. If you don’t feel worse,then you don’t need it - simple test according to my physio! xx