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my 6th visit to the neurologist - aggravated


#21

All that time talking about the Stanton Migraine Protocol and nobody remembers the simple electrolytes basis for her whole theory?


#22

First, congratulations and long may it work for you. It isn’t til you feel better you realise how bad it really was. You’ve really got me thinking about following suite. You really have.

Trouble is, it’s got me thinking about the VRT, again. It’s going round and round in my head - as I have enough going round and round already - I thought to share my thoughts thinking it may help me if no-one else. All I have is questions, no answers I’m afraid.

Somebody with MAV - in the position you now find yourself - would you need to return to VRT? At least until you no longer need the drugs.

I’ve read conflicting reports on this so it’s confusing.

I have read numerous places that migraineurs should only attempt VRT once their condition is stabilised. Surely usually this would be by medication.

I know many places here in UK at least won’t take people for VRT who are on meds because the drug is masking the symptoms and/or, presumably, depending on its category, preventing compensation.

I’m a long way off from that point, but it does make one wonder.


#23

Personally feel that light, normal activity (e.g. a long walk) is all the VRT you need. Your brain has to deal with moving around all day … I don’t think a few minutes of exercises make a huge big difference and I totally agree don’t bother if you are feeling symptomatic.


#24

I’m going to disagree there, at least in part. VRT has been very helpful for me with and without medication. I’ve been doing VRT and making significant progress for months. This trial on Effexor is less than a month old. More often than not, I’ve been unmedicated.

From a balance standpoint, I was already largely compensated. Even at my worst, I could ride my bike, carefully. I’ve always been active. With the exception of short bursts of true vertigo (caused by, I think, vestibular paroxysmia from the vascular loop on my left auditory nerve/8th nerve), I have always just pushed forward. I’m pretty much always some level of dizzy, even now on a med I really like. I never stopped walking, biking, hiking, even kayaking. I am sometimes wobbly and hike like someone on a tightrope with arms outstretched, but I’m out there just the same. Sometimes, especially with kayaking, I take a half a Meclizine to suppress my vestibular system. I try to do that less and less so that I can truly compensate. So yes, exercise is key. My VRT never included balance exercises because I don’t need them.

My biggest issue by far is visual vertigo. My VRT has included a huge amount of visual exercises. The day we started she ran me thru the standard tests and did the Eppley for BPPV. I don’t and didn’t have BPPV, but she explained it was low hanging fruit. We did the maneuver once more the next time and abandoned it. Ever since it’s been increasingly complex visual exercises that I continue to do at home daily. Unmedicated and at the start, 15 minutes on a screen meant 4 hours of spinning. Again, unmedicated I managed to get to 6 hours on a screen and I’m just mildly tired. That’s huge and it saved my career. Effexor is a great help to me and it’s showing in VRT, but it’s been hard work up to this point that made the difference. Effexor has calmed a lot of my visual noise (halos, refractions and other aura symptoms), which in turn has improved my visual vertigo by removing some of the extra stimulus.

VRT doesn’t want you on vestibular suppressants (benzodiazepines, anticholinergergics, antihistamines) because you’re trying to retrain your vestibular system. You can’t do that when you’ve effectively sedated it. I don’t walk into VRT with Meclizine in my system.


#25

Well, if you believe it’s been helpful for you I’m not going to argue.

But personally, giving up VRT did not harm my recovery trajectory at all and in fact I ended up with fewer migraines (and more money in my pocket!).

This makes total sense, agree. If it is to help you don’t want to be sedated.

However, I will say this is yet another element of the treatment where somebody is making > $150 a visit …

… we chronic vestibular patients are a very profitable commodity!


#26

I don’t just ‘believe’ VRT has been helpful. It has, in fact, been massively helpful and worth the expense. It saved my career.

We always follow the rule of only do an exercise until pain and/or dizziness increase by no more than 2 levels beyond where you start. At first just glancing at the exercise was enough. I couldn’t look at paper. Now, I can watch a train go by and read the logo on the last car. Low, slow, consistent. Every day a little better than the day before.


#27

VRT has two components to be trained and experienced therapists can chart out exercises for each of the below

  1. VOR - Vestibular optical reflex
  2. VSR- Vestibular Spinal Relfex

VOR training involves usually gaze stabilization exercises.
VSR training involves standing on foam with one leg and such. Walking with one foot in front of the other. Mostly gait training.
Some exercises can target both at the same time (standing on one leg and moving head side to side looking at a target)

Emily looks like all that physical activity keeps your VSR in good shape. And majority of your problems are with VOR.


#28

And as an aside I found that Ami was GREAT at severing this reflex making TV and computer use FAR more bearable.


#29

Trouble I’ve found is, to misquote George Orwell, some physical therapists are less equal than others.

Thanks for this post. It has reminded of things that had long since slipped to the back of mind. I remember long ago reading a rule of thumb ‘test’ for defective VOR which presumably stands true as it was written by a consultant to avoid prospective and paying clients travelling long distances unnecessarily. It stated if you can pick out one specific word from a page of text on a computer screen and keep it in focus whilst turning your head left to right and back again as quickly as comfortable and you can still read that word, your VOR was OK. Interesting.

What really interests me at present is VSR. We don’t hear much about it. ‘The reflex movement that maintains and stabilises’. That what keeps us constantly upright, or not as the case may be. I wonder what percentage of MAVers really do suffer with a persistent loss of balance. Everybody I would have thought before joining this forum but thinking about it now and from what I have NOT read, surprisingly I would imagine very few, The variations within MAV never cease to amaze me. How indeed can it all be the one condition or is this where MAV separates from MAD (migraine associated dizziness). Making full allowance for habituation. Queen Elizabeth II still rides her horse, at 92. The variations are still amazing.


#30

VSR is super important and very very common defecit in vestibular disorders.

  1. What you perceive as your center of gravity is way off from the real one. I can stand on a balance board and see my CG is way off from my the real CG. Happens for many reasons. Badly compensated with more weigth on one leg. There are exercises like swaying between heel and toe and many others which fix this

  2. Second more poorly understood cause of neck pain is VSR. one of your neck muscles land up taking 60-75% of head weight compared to the other side because of poor compensation. This has far reaching effects on back and spine as well. Again this can be fixed as well with VRT.

All of this works wonders once you have a stable baseline. Stable baselines is elusive for migraineurs. So you keep doing this once in a while so we don’t stray too far away from baseline.

I have downloaded a Phd thesis which speaks to yoga as the best form of VRT. You can avoid poses like downward facing dog but some of the poses do really train your vestibular system in ways day to day life can’t.


#31

Probably it’s past my bedtime. I cannot blame brain fog cos I haven’t had that for 12 months which is why I’m trying to avoid Ami. (My mother took that and used to say she’d wake up every morning feeling like ‘a stupefied owl’),

But cannot seem to follow this bit.

What am I supposed to keep doing, please.


#32

The exercises. You learn them at VRT and practice them at home. Even after you achieve decent compensation, you keep doing them every once in a while to keep your balance steady.


#33

You’ ve got it in one. Both (1) and (2), that’s me and a couple of minutes Tai Chi and I can see how far out my CG is. Also head tilt and trunk lean. Since my 24/7 dizzies settled I seem to get worse backache, more neckache etc than before. Also breakthroughs or whatever now. Everything is less consistent although overall My balance is better and I feel much better most of the time. I’m trying to work out how much of my leftover imbalance I could sort without resorting to further drugs so your comments have been most helpful.

@flutters thanks for yr input. I did do VRT, 50 minutes a day for nearly 6 months 3 years ago before I got my MAV diagnosis. I’ve never since been able to walk along turning my head left and right alternately still maybe one day. I hold the therapist responsible hence my original comment about equality. You fortunately have been luckier in your choice.


#34

Hi Helen,

You are an “almost” success story. Propranolol works well at higher doses as it does in your case. You can conquer the last mile using a combination of lifestyle and VRT. You are the first person i know who has taken Tai Chi. I have an idiots guide to Tai Chi and it does make me look like an idiot. Did you find a neighborhood class and just show up. Do they have any special Tai Chi for vestibular disorders ?

PS: I told my wife i am gonna try Tai Chi and she goes “May sure they is no MSG in it” :slight_smile:


#35

I agree with James that just getting out and walking type activity is helpful and important even when you are feeling bad. I am much worse if I stay sitting when having a bad spell and walking is helpful.

I also try therapy exercises as much as possible on my walks as learned from the few therapy sessions I went to. I don’t need to pay a lot of money to have someone watch me do these. When I’m bad it’s hard to do these and I never noticed an improvement in ability to do them. But lately I’ve improved in the MAV symptoms and I do think the therapy has helped me to improve my balance.


#36

all i can recommend is not to give up… my neurologist said that my situation aggravated only after my 10th visit. but we kept on fighting and now i’m getting better. just don’t get depressed.


#37

Great news but do you know how or why?

Like @dave I’ve been Dumped too, or redirected. Think all these consultants should have a legal requirement to follow through to conclusion on all their cases. Be made to maintain detailed notes on difficult to define medical cases and record final outcome. Heaven forbid, they might LEARN something and so be better able to help somebody else in future. Surely it would be about the cheapest way to conduct at least preliminary research, the sort of ‘and I enclose a SAE for yr reply’ (ah, remember those). I’ve yet to met a consultant who said ‘pls let me know how you get on’. I live in hope.


#38

I was dumped but refused to leave. I made a follow up appointment and just kept coming.


#39

So long as you make an appointment to tell them, they are more than happy to get an update any time on Harley Street :smiley:

(and delighted to relieve you or your insurer of ~£200 at the same time :moneybag: )

(it’s a wonder that it’s worthwhile for them to get us better at all :wink: )


#40

I think it would be great if there was a “big data” effort by the medical profession where details of every patient from symptoms to test results to patient history to affectiveness of treatments and long term results (kept updated) would allow some real information for patients to review when seeking treatment… Yes there are big issue with keeping it secure or anonymous but doable. (maybe James could do it for dizzy issues)

Whenever I ask the doctors about affectiveness of prescribed treatment plan all I get is -“yes plenty of people are helped by this”. I remember after my big attack and still unable to walk without a cane and touching walls - and was told to go on this “migraine diet” and i asked if it really cured people that had the damage to their balance system that i knew i had. They of course said yes. If you read the book you see that he talks about not using the accepted principles of testing the diet in any scientific manner. While I’m sure there could be some connection between foods and some dizziness or even perhaps cause or contribute to or exasperate a problem - I am very skeptical of the science and would like some data. I was convinced something broke and wanted it fixed.

In fact most prescriptions for these conditions state that it may take many months to have a positive affect and you might be worse in the meantime. I always wonder if you might just get better in that amount of time.

I spent tons of effort making notes about the progression of my condition and tracking everything I did and ate I made an effort to describe in writing all of the issues I had in a way that I thought would help them to pin down the cause (as only an engineer would do) . THEY DIDN’T REALLY WANT TO SEE IT. They have a small set of things they ask and a few test they think are important which depends on what they do (neurologist vs ENT vs…) and don’t care about those details.

I guess a big issue with the dizzy labels is that all of them are labeled as benign (it isn’t likely to kill you) plus you look and talk like a normal person so you seem ok. And they have to triage patients (only so much money and time) and they will focus on the ones in the worst condition and where they are able to clearly find something to fix. For the others (majority). They will give you some nice labels, prescribe some meds to lesson your CURRENT symptoms, talk about diet and lowering your stress and anxiety levels, and send you away.

The drugs and diet are not bad and probably help lots of people. But I always wonder about the long term and fixing the actual problem. Telling me to lower my stress level when I haven’t worked in years isn’t helpful. I’m trying to get back to where I can work.

My biggest concern remains avoiding attacks which always make my steady state worse and my recent bad ones take years to recover from. It’s not helpful to see me as a doctor and conclude I’m basically OK now so go forth and live your life. When I know that another attack is likely going to happen and I’ll spend some more years in “BENIGN” hell where my life is one of a disabled condition where I’m constantly dizzy and my brain is in a fog trying to make sense of the broken balance signals it is getting.

And to be clear I’m not saying to not try the diet and drug and therapy prescriptions. These often help and may get you back to something close to normal. I’m just saying for someone like me where this has been a progressively worse cycle starting with short attacks and imbalance to severe ones over many years - YOU WANT TO FIX THE PROBLEM AND NOT JUST TREAT THE CURRENT SYMPTOMS. .

And I’d like more data on how people do over time that have similar symptoms and what worked long term. My doctors don’t give me confidence that they know these things. Even when I have searched out success stories I often find that those people claiming success at some point regressed later. I’d like some real long term facts. And I will keep hoping for better technology to determine the actual causes and development of real fixes.