Some advanced VRT for folks who want a challenge
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Some advanced VRT for folks who want a challenge
I already walk backwards in the park so I guess pretending to pee like my dog won’t raise too many eyebrows!!!
Perhaps it would be best not to try it, in the park, just in case though?
Want a challenge? I already have my daily challenge, thanks. It’s called ‘Staying Upright’!
Let’s be serious now. This MAV monster is an odd beast. As long as I can stand upright, I can feel as off balance and as queer as you like but I can still do toe-to-toe walking forwards and backwards, pass the Romberg test and carry out a Tai Chi Right, or Left, foot kick. Surely that means it’s all an illusion. Without mirrors!
Doesn’t this show that there’s nothing wrong with my balance ‘underneath’, it’s just something’s misfiring, false messages creating an illusion of movement. Just my thoughts. Doesn’t make getting around any easier though. Just more frustrating.
I personally believe its about sensory noise and decompensation. Sure, your outright facility is not massively impacted, but your anxiety level IS raised (especially if you are not used to it) because you brain is slightly doubting the information it’s receiving and you have lost a little confidence. It’s a subtle and not so subtle thing.
The exercise, the VRT are all there to try and re-compensate. If you are fully compensated you would not feel any imbalance or dizziness. I believe that what lies behind MAV is an unstable state, making it much more difficult for you to compensate, and hence the chronic imbalance. You can absolutely minimise this though by keeping active. I’ve noticed that Ami helped me and reduced dizziness, but didn’t do a lot for the imbalance. That has improved with time of its own accord.
I agree VRT does not help everyone with MAV. I think there are many underlying reasons for MAV. I highly recommend VRT only if your tests like VEMP found inner ear damage. If you aced all the tests then don’t worry about VRT. The only reason the doc’s have me on VRT is because of the VEMP result. If your MAV is hormone triggered VRT will not do squat.
Also i do VRT only when i am not in a migraine state. Also stop doing it if it causes migraine again
I have found general exercise more helpful. There are couple of good papers on how VO2 max can help reduce migraine(VO2 = stamina for continuous cardio).
Thanks for your response. Agreed many underlying reasons. I think MAV is probably a ‘dustbin’ diagnosis, somewhere the mysterious ‘they’ put all the balance case leftovers ‘they’ don’t know what to do with. I think there may well be a female MAV syndrome that’s linked to hormones. I can see several distinct patterns and there may be a true MAV condition but I find it hard to believe such a variety of symptoms can still be ONE condition. I am pretty sure mine is hormone related. Hoping one day, with time, it might sort itself out and settle down and end years of living this sort of ‘half life’.
Can’t say I came out ace in any tests. Never had any, not in 15 years. Just a CT scan, MRI and a few ‘follow my finger’, ‘walk across the room and back for me if you please’, ‘stand on one leg, thank you’. And lots of balance experts (pls save somebody save me from ‘experts’ in future) who didn’t know what they were talking about and had no idea what they were looking at. Oh and a GP who was and still is slightly more useless than the neighbour one might chat to over the garden fence.
These days I just walk. Hope to get back to Tai Chi one day. I Avoid VRT. I do have a job knowing whether I am in a migraneous state or not. 24/7 dizziness and I don’t get any headaches so it is difficult to tell. Sometimes it gets much more acute. Is this a new attack, or a relapse. Who knows. MAV continues to frustrate.
Agreed. It’s total sensory overload. Hyper (migraine?) brain - central sensitisation . Unstable migraine and off we go again.
How exactly did the Ami Help you. You say it helped the dizziness but not the imbalance. What’s the difference?
For over 3 yrs now I have had 24/7 dizziness. I feel I am moving, rotating clockwise. Is that dizziness or imbalance. I have had the rotational vertigo where the room spins everytime you open your eyes or move (attacks would last up to 72 hours) and also to mimic BPPV and the swimmy head dizziness type too. I take propranolol IMHO enough to slay a horse and have been told, if the Prop is helping but not enough (the last few weeks, the 24/7 dizziness has ceased but returns with any sensory overload) to add in Ami. As I am very med sensitive, particularly to anything even slightly sedating - 2 diazipam taken once years ago for a back complaint and I knew nothing for 10 hours - I’m not convinced.
The propranolol stopped virtually all the visual vertigo, reduced the photophobia dramatically, cut the severity of acute attacks by more than 50% and eventually stopped the 24/7’s or almost (took a year), I feel better in myself and my balance underneath seems normal, stable and is still continuing to improve very slowly and in minute steps.
Just over a year ago the migraine specialist neurologist I saw described my dizziness as ‘disequilibrium’ migraine-related and compounded by lack of compensation due to reduction in activity. I was at the time still under the orthopaedic surgeon having broken my shoulder 2 months previously, an injury which was treated by immobilisation. Now, long since back to my normal amount of activity, I am still not where I want to be but very dubious about combining drugs. More propranolol is unfortunately not an option.
And here-in lies one of the big challenges in vestibular medicine: interpretation and description of symptoms.
Imbalance: a feeling of being off kilter, centre of gravity off, yes, ‘disequilibrium’, feeling less coordinated in ones moves
Dizziness: a sort of fuzzy, lighter-headed (not quite ‘lightheaded’) feeling
Neither … I’d describe this as a ‘feeling of false motion’. It’s pretty common with vestibular conditions. I’ve had ‘rocking’ and ‘push-pull’.
You had an upper body injury? Accident? This occurred after MAV onset?
It’s funny you ask about an upper body accident. I had a car accident in 2011 that messed my neck up (bulging disc in c5-c6 which is now degenerative… I only know this since I was rear ended again in Nov 2017 and they did a scan of my neck to tell me that) pretty good and my mother was talking to me yesterday and said she thinks this (MAV) may have slowly occurred over time due to the car accident. I didn’t start getting the migraine ocular vision effects until a year (2012) or so after the accident and then the catalyst for me was the THC as the Big Bang in end of May 2017 which brought on the dizziness and then the MAV symptoms a couple weeks later where eating certain foods set me off. It’s like there’s a delay as to when it occurs.
Oh and those symptom definitions are very accurate for how they should be explained.
Not wishing to diagnose you but my Dr. told me that Secondary Hydrops is a condition which can develop up to 10 years after trauma. In my case it took less than 6 months.
I know definitions - of balance/vertigo etc, are important and not uniform. Did you know it’s different again in the US.
What I have then is ‘Imbalance, unsteadiness’. Not fuzzy. No, not light headedness, not unreal, not woozy. Interestingly I have had a couple of periods when for 3-4 days it stops completely and all is normal. As it was reducing from full rotational 24/7 gradually towards steadiness I had phases of the rocking type - another vertigo manifestation I think. And a period where it felt as if my knees were rocking to and fro, being pushed from behind, quite violent at times that was and the rest of me felt steady. My knees would be moving even whilst I was sitting down, rather as if they were trying to get up without me? Then the imbalance stopped and now that, or very slight rocking starts presumably with too much sensory input.
A feeling of false motion. That’s at the route of it all. First neuro-otologist, the one who gave me my diagnosis placed great emphasis on whether or not it was ‘vertigo’. Was it rotational. It was, so it was vertigo therefore it was MAV.
The upper body injury after MAV onset. Yep. Many years after. I had periods of episodic MAV from 2003 until 2014 when it became chronic - 24/7 and then in in 2016, Exactly one week before Christmas 2016 walking across a field and not feeling any dizzier than normal I caught my foot under a bramble branch which was posing most successfully as a tripwire and hit the ground face down. Fractured my shoulder. Is there some significance?
Interestly I got up from the ground, walked a 1/4 of a mile back to the car and noticed I wasn’t dizzy. Not at all. Even in A&E at the hospital the lights did not trigger the dizziness and I didn’t have an acute attack later either, most unusual. For a while I thought the shock of the fall had somehow stopped the dizziness I’d had for 2 years for good. I wasn’t at all dizzy for more than 2 full days. Then back it came. I guess adrenalin might have kicked in to save the day, don’t know. It stopped instantly for those 2 days and came back as instantly afterwards.
You find you can minimise the imbalance by activity. I wonder how does this work. Yesterday I was feeling very unsready but walked up and down the tarmac drive at home for a good 20 minutes. Felt worse for about 10 minutes when I came back into the house but within half an hour was feeling much better (steadier) than I had for a couple of days. I felt that much better for the rest of the day. One wonders why. This morning back to my previous baseline, not bad but not as good! Unfortunately The same didn’t apply today and I tried twice, a good 15 minutes each time. Umm.
VRT therapist told me I must walk outside everyday if only for 10 minutes. Usually I keep fit walking with the dog, be outside for maybe an hour and often more, and walk varying distances, never as much as 2 miles but usually in that region. Have been doing this even when 24/7 dizzy constantly as often as possible. The migraine consultant I saw advised a short walk daily as it helps compensation and because it is important to try to keep fit. Whilst I appreciate there is also a strong psychological advantage I continue to wonder how it all works.