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How to get the most out of VRT

So I’ve started doing more intensive VRT exercises prescribed by the physio in the same hospital service as Dr S. Dr S said that the medication would take care of the migraines (I’m now on 40 mg nortriptyline and not really feeling any difference yet) and the VRT would take care of the background dizziness. Now this confused me, as I thought people with MAV also recover without VRT, just with the medication… and what’s the difference between migraine and dizziness? I don’t get classic migraines at the moment (touch wood), but I do get head pressure at the back of my head, is that migraine?
Anyway. My main question is: any thoughts on how to maximise the benefits of VRT - from what I understand the exercises are designed to trigger dizziness (and they do trigger a worsening of a good 10 seconds usually after each exercise) so that the brain can learn to adapt and create new neural pathways. So the aim is to trigger dizziness BUT the physio and the paper she gave me are very clear that I should stop if I trigger a worsening of symptoms and wait to go back to baseline… so basically what I do is one exercise, then five minutes something else, then another exercise etc… I’m hoping I’m not leaving too long or too short between them…! I’m finding the VRT a real grind with so far only an overall worsening and no positive effect! :tired_face:

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My experience with VRT for MAV is that it can help or hurt (if you overdo it). Only you know if you are worse in the next hour after the VRT or better/same. Keep dialing back the VRT (intensity and/or duration) until it doesn’t affect you as much. If I do it right, I usually notice my balance tightens up after VRT in the next hour. It doesn’t last, but even if it helps for a few hours that’s a win I think.

For me it is still a mistery, but what I learned from Joey Remeni is that if we have the rocking dizziness, sort of PPPD, VRT does not help that much anymore. This is particularly true if you already do all your regular activities. In my case I do everything “normal”. I am remodeling my bathroom and was up in a ladder painting the ceiling, I got a little dizzy up there. Anyway, a vestibular therapist told me that just handling my toddler was enough VRT, so what I needed to do is not avoid anything. I have been avoiding computer work, so I am trying to sit more to see if that helps with the dizziness while seating. Anyway, do them but I would not put so much effort on it. It is better that you move “normally” at home (bending, moving the head naturally, climbing stairs, etc.).

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Thank you, my intuition is to avoid doing it when I have a headache going, as that’s probably migraine and my brain is already under too much strain.
How frustrating (sorry!) though to hear you find it helps with balance for a few hours and doesn’t last. I’m feeling so frustrated with MAV right now… some days it can feel like it just doesn’t get better, no matter how much medication / diet / VRt / rest / sacrifices I throw at it… GRR. Grumble over. Will keep doing VRT.

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So maybe that explains why people who don’t do VRT but take the medication get better, they get their vestibular rehab from life.
I have to admit I was a bit surprised that Dr S emphasised VRT, saying it was the VRT that would tackle the background dizziness. Really hoping I’ll see some improvement at some point… right now am only feeling worse.

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you can lower the intensity or the amount of times per day (it is usually recommended 3 times a day for 5 minutes).
And yes, I guess that is true, the real VRT is life, that is why exercise is important, as well as not avoiding activities (restaurants and supermarkets are avoidable, but parks, streets). Now if you want hard core VRT, Dr. Hain recommends walking against cars in a loud busy street. Or watching crazy videos on TVs, he has some on his website.
https://www.dizziness-and-balance.com/treatment/rehab.html
https://www.dizziness-and-balance.com/treatment/rehab/visual%20dependence%20exercises.html

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I’d say follow the physio’s instructions to the letter and insist on an out of hour number to contact her. I’m surprised to see Dr S started you on VRT as he doesn’t usually seem too keen on it from what I’ve read. I know he told @janb he would tell her to do it if he thought she needed to and he hasn’t so far but knowing how precious UK consultants can be about people not complying with their instructions (and must add that’s general in my exp. I’ve had no dealings with yr consultant) I suppose you must try it, Would suggest you look up a thread entitled ‘Here we go again’ which relates to somebody else’s VRT experience with Dr S, where it appears to me the physios working at his centre were out of sync with his requirements. Might be of use to you.

I think many UK MAVers have the same problem. I assume you were told initially to expect to feel much worse before you felt better. I was. I was also told to expect ‘anything to happen’, and not to walk outside alone once I’d started VRT exercises in case of sudden changes/dizziness. I was also told it could take six months to improve. I was eventually doing ten minutes five times daily and found the dizziness eventually escalated to permanency on top of the 24/7 rotary stuff.

Be a good question for the consultant to answer I guess. We’d all like to know, Dr Silver refers to ‘crystal clear head’ days as success as presumable rear head pressure would be ‘migraine’.

VRT isn’t practised much in UK. So I guess most people just get by on the meds. Walking outside is most beneficial as is normal daily movement as @dizzy3’s advisor explained. Helen

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It is a bit of a conundrum isn’t it! I get head and ear pressure plus tinnitus - the loud ringing kind - and when I do too much, or maybe eat something I shouldn’t they all kick in. I have had increased ear and head pressure since last Thursday but worked a five day week instead of a 3 day one, so maybe that contributed. Plus I ate a fired egg - eggs are on beware list - and a couple of hours later the pressure increased. I am still on Dr S’s 6Cs diet so there may be other food culprits but at this stage I haven’t a clue what although I have my suspicions about canned tuna. As @Onandon03 has mentioned, Dr S initially didn’t feel that I needed VRT and hasn’t suggested it in subsequent appointments and I certainly don’t have dizziness or vertigo any more - thanks to the diet and Pizotifen!

I have tried not too avoid doing anything too and feel that I have improved slowly by keeping on as much as possible, although in the early days I wasn’t up to much at all. For example my grandchildren’s joyous shouts and fast life tempo did send shock waves through my head and my daughter kept them away from me for about 3 months! It must be really hard having a toddler to look after with MAV - I take my hat off to all mums going through this.

That’s how I felt in the early days last year (sans VRT) and I still have bad days, but they are so much better than before because the dizziness has gone. It is much easier to cope with the pressure and tinnitus without the vertigo/ dizziness. Jan

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Haha - I wonder what a fired egg is - made out of clay perhaps!! :joy:

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Thank you Jan.
Interesting that Dr S didn’t mention VRT to you.
So good to hear you’ve improved thanks to the diet and medication, and no longer have dizziness. Dizziness is really the most difficult symptom for me. Did you have 24/7 unsteadiness/dizziness before this, or episodic? Mine came on 24/7 pretty much straight away 9 months ago and hasn’t gone away or lessened since.
Re: children / toddlers and MAV, yes I agree it’s so hard. I think dizzy3 you have a slightly younger child than me. I remember finding the toddling years really intense physically even without being dizzy. My son is now pre-school age, he’s more independent physically but I have to admit I really struggle to accept how little I can do with him now; we almost always stay at home or in our neighbourhood, days out are impossible for me… sometimes I think he’ll later look back on his childhood and tell people his mum never took him anywhere, no cinema, no beach, no trips… That makes me so sad. I normally am an active and curious person, I love travelling and discovering new places. I try to make up for it by spending lots of quality time playing on the sofa with him. He seems happy with that. He might not have had that time with me if I had carried on being as busy with work before I got ill, that’s a small consolation. When I feel better I’ll make it up to him and take him travelling :slight_smile:

I agree 100%…cant imagine how you all do it. Troopers i say👍

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Hi Lucy
Before I was struck down with MAV I had a bit of vertigo that came and went but this was due to having low folate levels and I was put on a high dosage of folic acid for about one year. After that the levels were okay again.
When the MAV first started I noticed that I was dizzy after every meal - I thought it was due to low folate levels again so ignored it. Then the day that I did a power hoop session ( the last straw for my head) we went out for a meal and on the way home I started to feel dizzy. By the time we got home it was still there - usually it would wear off - and a couple of hours later I didn’t know what had hit me and I spent the rest of the evening vomiting and unable to walk in a straight line. Also my ears were pulsating and everything felt weird - weird is a good word to summarise all the symptoms!
The vertigo stayed with me to varying degrees - always getting worse after food - until I eventually saw Dr S and he prescribed the diet and Pizotifen. I have continue to improve and went back to work last September - I still have ear and head trouble but can put up with that now that the dizziness has gone.
It must be very hard for you not being able to get out and about with your son, but he will be happy to have you there at home with him for now.
I thought that I would never get better but here I am 1 year later feeling almost normal again. Jan

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Thank you Jan for your reply. It gives me hope to read that you’ve managed to get rid of the dizziness. Interesting that you really noticed a difference after meals. You sound like you definitely have food related triggers. I’m not so sure yet I have, I think my triggers are emotional and physical stress / over-exertion and head / ear trauma.

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How’s it going? Any improvement? Helen

Still doing the VRT, still in my setback of more dizziness and headaches, not sure if it’s doing more VRT, reducing propranolol, or maybe life stresses…

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It’s that dreaded ‘Cumulative’ word again that comes with triggers. Makes MAV decisions so hard. Helen

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VRT hasn’t reduced background/baseline dizziness for me at all so far. I have noticed that they shorten my week-long, debilitating attacks though. They seem to help me get back on my feet quicker, probably in combination with walking outside at least a little every day.

My PT’s opinion is that VRT isn’t going to fix my dizziness, but will help me recover quicker as I do address the root cause (hopefully migraine). She said in her experience, dizziness that isn’t cause by a peripheral vestibular issue causes us to lose some vestibular competency, and that the VRT helps us gain back that competency after something central like a head injury or migraines throws us off. It makes sense to me, make of it what you will.

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Thought of you today whilst doing ‘my VRT’ - well my own version. I treat my eyes once a day with a warm compress (commonly called a flannel wet with cooled boiled water) over my eyes, and I always try to do this standing up, so it amounts to ten minutes or so standing with no vision. Yesterday’s ‘VRT’ included some Tai Chi, and after a short break, crawling on hands and knees behind kitchen units cleaning behind the fridge and washing all the (lower) cupboard drawers by alternately bending or kneeling. All this activity- it’s Spring after all - made me wonder how you are getting on with ‘the proper stuff’. Helen

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Hi Helen, kind of you to ask :slight_smile: I’m still doing the VRT, after speaking to the physio over the phone I’m keeping it to only twice a day, not too intensive. I’m very careful not to do it when I’ve got a headache going. The setback I had after coming down on the propranolol - or doing something else my Migraine Brain didn’t like - has passed and I’m settled back into my baseline of tolerable dizziness. So not much to report yet, just carrying on with the meds, diet, VRT, pacing.

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Great to hear you are practicing again Helen, I have also been able to do some!

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