I just wanted to get an idea of how many people do some kind of VRT exercises, like the Cawthorne Cooksey head turning type thing? Do you do it weekly, daily, several times a day?
Those who see Dr Surenthiran, do you do the VRT exercises he gives on the printed sheets at the first appt?
Do they make you feel more dizzy and crappy straight after doing them?
Hi Jem you are supposed to do them several times a day until they make you feel dizzy then stop. Apparently building up the repetitions until you can do them for longer each time. I was given printed sheet years ago but stubborn me wouldn’t do the exercises because I said I didn’t want to induce dizziness. I wanted a life. 15 years on a doctor told me that my avoidance of doing certain things in life and not doing the exercises have made my condition chronic today and in other words my own fault. This summer I went to physio who specialised in balance and again reiterated what the doctor had said. I gave built up ways of avoiding doing stuff like not bending my head right over to pick up something from the floor that my brain on longer recognises ruling movement nor my ears and that I gave to try doing the exercises or I will be one sick old lady. I still won’t do the exercises but in my daily movement in normal life I do try hard not to avoid moving in a certain way but it is hard. Changing the habit of 15 years.
Thanks Ang. I have done VRT daily for years and I was just wondering if it really is worthwhile or not. Just because it always makes me feel more dizzy for 5 or 10 mins or so afterwards but it doesn’t seem to have that much effect overall. It is hard to tell but i thought with MAV maybe it isn’t as helpful as it is with labyrinthitis where you need to compensate for damage done. I can see why you have avoided certain movements especially having this so long. One thing’s for sure it doesn’t do anything to prevent relapses! xx
Hi Jem
My story is that in Nov 2010 I went to a Physio (back in Oz) because I noticed my balance was a little ‘off’ on a holiday walking on the coastal path in Cornwall (narrow path, lots of rocks & steep descents!). The physio gave me the Cawthorne Cooksey VRT exercises to do warning me that they would make me a bit dizzy. What she didn’t tell me was that just one day of it would plunge me into chronic mav!
Eventually I found Professor, Doctor Margie Sharpe - a neuro physiotherapist who has a Balance & Dizzy centre here in South Australia. She knows a great deal about Migraine Associated Vertigo & told me that if I continued to do the VRT (CC) I would never get better! It works well for BPPV & other vestibular disorders but Prof Sharpe says it is too stimulating for the mav brain. She gave me a list of things to gradually ‘achieve’ alongside finding a med to calm the brain stem activity. They were all just the everyday activities that we do when we are ‘normal’ eg looking down at a desk or kitchen bench, putting on socks & shoes, going shopping, walking without a stick, Pilates, etc.
I have been to other physios who still tell me I should be doing the Cawthorne/Cooksey VRT exercises. There are a lot of physios out there who have NO IDEA what MAV is all about!
I’d be interested to see what Dr Surenthiran recommends & whether his patients need to be stablised on meds before trying them.
Barb
Hi barb I like the sound of your Neuro physio and would tend to agree that doing the exercises make you worse and agree with doing just daily activities. Trouble is with me for too long I have been treated for menIeres so they are into the compensation thing and place great emphasis on the exercises and because they could never definitely diagnose it was easier I reckon to blame me for not doing the exercises. After my next pointless balance tests in the new year I an going to demand a neuroreferal.
Angela, haven’t you seen a neuro at all yet? So yes, push for that referral - who will you ask to see? My GP sent me to two ENT guys because he was positive I had Menieres. He couldn’t believe that it wasn’t but didn’t suggest seeing a neuro - it was Margie Sharpe who suggested it and told me I probably had mav. Then I found the forum and knew I’d found a lifebelt in my stormy sea!!
Barb
Barb thanks for your reply. Strange how we get conflicting info from the specialists. I had suspected that VRT may not really help with MAV but Dr Surenthiran gave me some VRT exercises to do. He said to start slowly. So he does think they are of some benefit to us I guess. I just wondered who else did them and whether his other patients on this forum do them every day? x
Jem, I have copied and pasted my experience of VRT with a VRT specialist in Sydney below from the physicians, specialists and clinics sections of this forum:
Sydney VRT Specialist
by nabeel on 05 Nov 2012, 18:11
Hello All
During my 3 month stay in Sydney from August to October, I took VRT sessions from Ross Black, an occupational therapist at the Prince of Wales Hospital. I was recommended to see him by Dr Ron Granot and it was a wise decision that I did. I can tell you that he is a gentleman!!!. Extremely nice man with a great sense of humour. He makes you feel extremely comfortable and will spend plenty of time explaining things to you about the tests he performs on you and gives great advice on how to cope with a balance and dizziness disorder.
When I first went to see him, he performed a number of tests on me, I do not remember what those tests were called but he did them basically to determine the extent of disability caused by my dizziness. On the basis of his tests, he worked out a strategy and plan of action. I attended VRT sessions with him every week. He was very experienced in this field and his exercises comprised static and dynamic balance tasks as well as head rotation activities designed to challenge my symptoms and to promote, strength, balance and confidence. He made me play balance games on the Nintendo Wii which btw is great fun. There are different balance games to choose from with levels ranging from easy to difficult and you can choose and work your way up as you get better at the game. This promotes mental thinking, builds confidence in you as you get better in the games, and overall is a fun activity you can enjoy with your family and at the same time helps in brain compensation. It also makes you sweat and its like doing exercise in front of your television without having to go to the gym. He explained the importance of maintenance of regular sleep, physical activity levels (as much as possible) and stress management, in the control of migrainious vertigo.
Whilst the vestibular rehabilitation exercises assisted me with building confidence in my balance abilities and general functioning, it did little to control the MAV. The combination of cymbalta and VRT has helped me fight this illness to a manageable level now where I can continue with my life as long as I avoid the triggers.
For those of you considering VRT, I strongly recommend Ross Black whom you can contact at the Prince of Wales Hospital for your sessions but you will need a referral from your Doctor for it. Its free of charge as long as you have medicare and a doctor’s referral.
Nabeel, Dr Granot also referred me to Ross Black. Unfortunately, I didn’t have enough time in Sydney to see him but spoke with him on the phone. He knows Prof Margie Sharpe & was very complimentary of her knowledge of MAV and said ‘I would be in great hands’ being treated by her. At the time I saw Margie I could hardly stand without support & because the Cawthorn/Cooksey had been a trigger for my MAV she didn’t recommend I do them. Were you ‘stabilised’ on meds when Ross recommended them to you?
Jem I don’t think the VRT treatment that Nabeel & I received is conflicting. Ross & Margie are both extremely experienced neuro physiotherapists so, like any professional who is treating a patient they take into account all known factors regarding their illness. Just find a physio who understands the MAV brain!
When I was stabilised Margie recommended that I ride my bike (yeah, was I happy when I got back on my bike after 18 months of dizzy!) and continue with Pilates which is great for balance. It was summer so the fans were on - sent me dizzy in a few minutes! Do the exercises at home but admit don’t have the same commitment.
Barb
I do not know the names of the exercises which Ross made me do. But they were excellent in building my confidence to make me realize that I do not need to stay home all day and can actually get out and do stuff. I was not stabilized on meds when I started vrt. in fact after the first couple of sessions I was going to give up as it was not helping with the dizzies at all. However Ross was an excellent source of moral support and provided talk therapy along with the vrt exercises. The talks we had and the exercises boosted my confidence level and every time I walked out of the sessions i felt like a changed man with or without the MAV symptoms. Then it was this one particular week I flew to Melbourne and back to Sydney in a few days. That week was terrible and it felt close to a relapse. So I decided to up my dose of the cymbalta that night. Guess what, next morning I felt better than I ever did since this junk hit me. So I continued on the higher dose and went for further vrt sessions with Ross. At the end, I don’t think the vrt helped my MAV but it certainly helped with confidence. These were granots exact words when he referred me to Ross. He said that vrt will help u regain confidence and he was so right!! And through Ross I managed to see Dr Shaun Watson for a second opinion who in my opinion is just brilliant. He specializes in balance disorders and knows his stuff inside out. For those who ever need to visit a neurotrologist for a consultation I highly recommend him. U will not go wrong. I promise
Barb how did you find riding your bike for the first time- did the balance just come back as it “normally” would? I often think about getting a bike but I am afraid I will just fall off and have a horrible accident…
Hi Sarah
I was very sceptical & a bit scared as to how it would go. We chose a bike path with grass on either side for a fair distance which seemed a reasonably ‘safe’ place if I did fall off. Well, I was truly amazed ( still am considering I couldn’t stand/walk without lurching around!) that as soon as I got on my bike it was like I was never dizzy at all - I just rode as tho I was ‘normal’! I sat on a nearby bench and just cried! My husband thought the worst but when I could speak I told him I was crying because I was so happy!! And since that day I haven’t looked back. Some really bad days I wouldn’t ride & it has taken me well over a year to get back to a 40km ride due to relapses, etc. I love cycling because I just feel really ‘normal’ have to watch out when stopping & standing still because I still have very wobbly days. So go for it Sarah!
Nabeel
Did Ross give you the 'looking at a mark about 2m away & then turning my head from left to right quite fast counting to about 20 (not sure exact no). Then walking towards the mark keeping a straight line. Do it 3 times each and 5 times a day.
(This is the basic Cawthorn/Cooksey VRT). A friend had BPPV and they worked really well for her.
Barb
when u r biking u r using ur feet and back (to stay balanced) more than ur head hence there is less head motion involved. When u walk, u use ur feet but your head also moves automatically without u realizing hence it feels worst when u walk. For me I don’t feel a scratch when I drive apart from the visuals which I can ignore but as soon as I get out of the car I am like whoaaaaa.
Ross made walk in a straight line by keeping me my focus straight and made me read out sentences or words to the left right or above as we walked. He also made me hold a business card with my arm stretched and told me to focus on one word on it and move my head left right up down a couple of times counting to 10 or 20 each time. Is this the same exercise as yours?
Nabeel,
i think you’re right about balancing on a bike using pressure on pedals & keeping back & neck in one position. I can move my head to look over my shoulder tho and I have a mirror on the bike so not too much head moving. I suppose it’s like driving the car - the body is relaxed & holding steering wheel gives support & brain focussing on the road ahead. Not quite sure why being a passenger makes me nauseous even tho I concentrate on the road in front without looking around at the scenery!
Same thing when I’m walking at a fast pace - can’t understand why I just want my body to go faster! My hubby (who is six foot tall so has long legs) often struggles to keep up!
With the VRT my neuro had me turning my head very fast a couple of metres away from the mark on the wall then walking along a line towards the mark trying to keep my balance. One day of this very fast side to side head movement 20times x 5 a day) was just too much for my brain! Margie Sharpe certainly gave me so much confidence to gain control of my symptoms so it was definitely worth visiting her. Good news that Ross Black was so helpful - unfortunately I think neuro physios like these two are hard to find!
Barb
likewise I get nauseous too as a passenger in the car not all the time but mostly if the driver brakes too much. I too feel a lot better when I walk fast and the head motion intolerance almost vanishes. As soon as I start to walk slowly I notice my symptoms creep back up and feel like I sway side to side with each step. The exercise which u mention sounds very good for people like us. I should give It a go some time. I agree there not that many vrt specialists around the world. I could only find one vrt clinic in the whole of singapore. Ross did mention this to me that vrt is still not well recognized by the medical profession hence Medicare Australia does not cover it. But awareness is getting around and I think with time the world’s medical boards are understanding how useful it can b in brain rewiring and confidence building especially if u have a vrt specialist like Ross who does talk therapy along with vestibular therapy both combination makes a huge boost in confidence
I’ve had mixed results with VRT. After a spell of BPPV and MAV I was left with a few problems. One was vertigo on getting up/lying down and also turning over in bed. I had an Epley maneouvre done by my consultant, which instantly resolved the getting up/lying down problems, but weeks later I was still get vertigo turning over in bed. I was referred for VRT and was given the Brandt-Daroff exercises. I have to say, I was very surprised to find that within a few days of doing these the problem was completely resolved. I also have some other problems, for which I was given a set of exercises following pencils/looking at dots on walls/moving my head in various ways. These seemed to make me worse. Whereas the vertigo provoked initially by the B-D exercises was just for a few seconds, the dizziness provoked by the other exercises persisted and made me feel worse the whole day. So I gave them up after a couple of weeks as I felt that I was making myself much worse when I had actually got to a point before where my symptoms were live-able with. Perhaps I should have persisted for longer, but I felt my migraine brain just wasn’t going to get used to these.
I do it!
The last two weeks, not so much.
I’m starting again today.
My balance problems always catch me off guard, meaning that if I concentrate on the VRT
I manage pretty well.
I just always wonder what ‘normal’ should be.
How long can a person without balance problems stand on one leg eyes closed?!