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Newbie and found the Best Doctor in Boston


#69

Well Erik we most certainly went to different VRT therapists together! And different Tai Chi classes too. Tai Chi is gentle. An integrated structured VRT programme is far more gruelling and demanding.

I see great differences between VRT and Tai Chi. When I was chronic, neither was a viable option, even gentle Tai Chi which I had done virtually daily for more than three years pre-chronic MAV. I’d get my VRT trying to walk around my house!

Yes, but what if you’re already 24/7 dizzy anyway. What if you have already felt sick, all day every day for a year. Can anybody quantify sickness by percentage. I couldn’t.

VRT is designed to reprogramme the brain. VRT therapist (who was supposedly top of her tree and who had been trained in US which is why I paid her so much money, US being streaks ahead of UK with VRT) told me the brain only listens to persistent repetitive movements to this effect performed in multiples of five. Anything less, it just assumes to be normal bodily movements. I carried out VRT exercises for 50 minutes a day, five separate 10 minutes sessions, every day, for nearly six months. This was built up over time but I once calculated eventually meant doing these various exercises (and not including gaze stabilisation exercises) I was turning my neck left to right right to left some 400+ times per day. Nearly all MAVers experience problems with that particular movement. I found it doubly difficult, having, like many other MAVers, a permanent stiff neck before I ever started VRT. I have since discovered that performing these exercises against a stiff neck actually means you are ‘reprogramming’ the brain incorrectly which I well believe as, although when I first started VRT, I could turn my head left/right, right/left and still walk a straight line, I’ve never been able to do so since and still, and it’s three years since I stopped VRT, cannot.

Tai Chi - obviously the ‘no contact’ non-martial arts type - is gentle, based on walking albeit a somewhat different walking experience than most Westerners are accustomed to. It’s far more natural. It’s relaxing, meditative, not gruelling. Helen


#70

I don’t due well with any kind of exercise that moves the head. I have a neck problem from two whiplash injuries and I find that I have to leave my neck and head in a neutral position for now or I can get dizzy. Until I got a diagnosis of MAV I was running to all kinds of alternative doctors for answers. and treatment. I tried acupuncture. The times of my appointment I would arrive with no dizziness and I would leave feeling lightheaded. I tried it two more times and the same thing happened. The next time they changed the needles to a smaller needle and when I got up I was so relieved that I felt pretty good with no lightheadedness. I walked slowly to my car, got in and went to bend over to get my phone in my purse that was on the floor and when I got up the whole car and myself did a 360 degree turn. I said what the heck was that. I was so scared as I never experienced that weird feeling. I called them back and explained what happened and they said this is good the chi is moving, I never went back. The treatment was stimulating my brain instead of calming it down making me feel worse than ever. It just wasn’t the right treatment for me.


#71

Yeah, I hear you, many times the exercises were not helpful. I also have an extremely tight neck that was hard to do the head turns, which my VRT therapist caught and helped me work on.

Maybe not an exact percentage, surely you know when one hour is worse than another, right? VRT will always make you feel a little worse if you do it right, but the point is not to overdo it. If I over did it I could feel it the rest of the day.

Wow! That is an intensive program. No, my therapist said no more than 15min per day. Yeah I would have felt awful doing 50 minutes a day of exercises! Dear god.

Neck turns don’t have to be large, my therapist always suggested starting small and only make bigger ones if possible. Never did she said to strain the neck or push through being sick. Sounds like you had a real drill sergeant as a VRT therapist!

Chen style Tai Chi is gentle and good for combat! Most of the training is standing meditation and silk reeling. Even practicing push hands with a partner can be gentle.


#72

Yeah my VRT was less than 15 minutes morning and evening.

But it was still useless.


#73

Yeah, all this really shows the wide variations of MAV affliction and VRT treatment. You’re young and otherwise fit and I very much doubt you’ve ever been confined to bed by MAV for weeks on end unable to stand unaided, ie without any balance, like middle-aged me?

Certainly, not at that stage, with unstable MAV and I’m not alone there. Alot of specialists don’t recommend it either.

So it might seem now. And she had the gentlest quietly spoken manner, you could hardly hear her speak with just the two of us in an otherwise silent room. She inflicted her torture with the loveliest bedside manner you’d ever find!

I was told on Day One she could get me back to 100% in six months but it would be six months unstinting hard work on a daily basis. I believed her. I kept my side of the bargain unfortunately the VRT eventually made me ten times worse. I collapsed.

Never had a partner to practise with. My husband’s supportive attitude only goes so far! Helen


#74

Ah! I can almost hear @turnitaround leaping to his keyboard, Now that could be the root cause of your MAV. It seems often to stem from some previous trauma.

Quite an experience with acupuncture that was I’d say. My brother had severe vertigo in his twenties caused by lifting extremely heavy tyres single-handed, incapacitated for more than a year, and, eventually cured by acupuncture. Two sessions I believe.

In that case you’d better steer clear of Tai Chi too! Personally I’d say er … ‘Rubbish!’ … for the sake of politeness. Sounds like true rotary vertigo to me. I did Tai Chi for years pre-MAV, and was never aware of the chi at all. I understand you need to be really in tune with Tai Chi to feel it, it takes many years of practice I thought. Helen


#75

What works for me is just “quietness” and avoidance of all the triggers. If I have a busy day at work under all the bright lights you can bet I am no good the next day. I am learning what I can tolerate. I had to cut down my hours at work for awhile until I get this under control. My supervisor was very understanding.


#76

What did she say after it didn’t work for you? Hopefully she didn’t start blaming the patient, which happens so often with these chronic conditions. I find it so hard to fully trust doctors anymore that have strong beliefs about what to do and how to recover as if they were psychic or something and know exactly how to treat you.


#77

First she said ‘what do you mean. You can’t stand up. You’ve ‘lost your balance’. I don’t understand.’. Then, when I said I’d developed new symptoms so I was waiting to hear back from my doctor, she said ‘Well, be sure to tell him it’s not my fault. It was nothing to do with me. Tell him I helped you’. Then she hung up!

The doctor wouldn’t have known I was doing VRT. We don’t have an integrated system. A consultant had told me to try it, as only option, because I was complaining about balance issues and he couldn’t find anything wrong with me. Actually, and I’d forgotten this til now, when I started VRT she did say if I didn’t improve to her satsfaction she’d like me to see a consultant she worked with in due course but she never mentioned that again after our first meeting. I was very surprised with it all. She was very experienced highly qualified audiologist in her own right as well as having trained in VRT in US. I thought she really knew her stuff. Helen


#78

Indeed:

Similar issue to mine. Same MAV treatment.


#79

Yes, indeed. Yours and Greg’s were similar. Treatment indeed the same. Just sometimes reassuring/interesting to have some idea of possible origin I thought cos there is bound to be a root cause there somewhere, Helen


#80

Finally got these, super cheap on amazon and I love them. @turnitaround maybe link to our recommended products page for those on a tight budget?

(NB from admin: these images link to products members have found helpful and at the same time helps fund the site: As an Amazon Associate I earn from qualifying purchases. More recommended products here. Thanks for your support!)

Uvex Skyper Blue Light Blocking
More relevant eyewear here

#81

That is a great price. Thanks for letting me know. I was about to buy the Thera specs
and they are 99.00.


#82

My husband bought a pair of these after we read an article about how the light from computer screens can affect sleep if you use the computer just before going to bed. Then I found some free software, called f.lux, that you can use to adjust the computer screen so that it looks similar to wearing those glasses. The software is pretty cool and I like it. Here’s the site where you can download it: https://justgetflux.com/


#83

Just installed the f.lux. What a difference it makes. Thanks.


#84

Oh, wow! Glad you like it! It has a lot of features and settings that I haven’t really explored. I’m just using the default setting but it really does make it much easier to look at the computer.


#85

Funny enough I was using f.lux before it was cool!
They’re the reason for “night shift” on Apple’s products. You won’t see f.lux for iOS anymore because they paid the rights or something of that nature.
The amber tint helps big time and also, so glad they added a dark mode to Mojave 10.14 on macOS. It’s much gentler on the eyes like using the themes on here. I have mine set to dark theme.


#86

Yeah, I got f.lux but sometimes LED lighting bothers me as well as my TV, so sometimes the glasses are just easier. :grinning:


#87

Yes, LED lighting is bothering me also. I thought it was suppose to be easy on the eyes but I am realizing that all lighting is a problem. The glasses are a huge help.


#88

Once the MAV gets that hypersensitive, all lights can be problematic. I found LED a real killer anyway. Also some of it must be habituation cos I have no trouble with fluorescents, I’ve lived with them in my kitchen and utility for ever, decades. Backlit scenes and mixed lighting were persistently problematic. I had extreme photophobia for a couple of years. Like the 24/7 dizziness it came on as part of an acute attack, and just forgot to go away. Made any sort of ordinary existence impossible. One ‘tip’ a VRT therapist gave me was that you need to stay in constant light levels all the time. Mind you she didn’t say what planet you needed to be living on to achieve that feat! It certainly isn’t Planet Earth. Helen