The elliptical should definitely be giving you some good exercise plus some VRT. I think you’ll just have to experiment and see what works best.
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Hi all,
someone in this thread has metioned Tom Boismier (the community advisor/expert) over at DizzyTimes, and I have to say he has provided me with some invaluable advice over the past year or so. One thing I remember him saying about VRT that surprised me, was in response to a question I raised about being able to play football and badminton (and even squash occasionally) - I was asking whether that should be providing enough ‘natural’ VRT to mean that I wouldn’t have to do any ‘formal’ VRT, and his reply was along the lines of, “VRT doesn’t generalise”. In other words, specific, formal VRT exercises were still required in order to achieve the best results, even though I’m playing football and badminton! Just thought that may be of interest. Best wishes to all,
Just chiming in here on the MAV diagnosis side of the topic. My neuro doesn’t recognize MAV as a formal diagnosis but uses migraine variant only versus classic migraine, etc. She was quick to point out that patients with MAV or dizziness as a primary symptom also have so many other accompanying symptoms that it was not of clinical or practical value to use an oversimplified term such as migraine associated vertigo (much like chronic fatigue is mistakenly played off as a condition of just tiredness). I can see her point as I do not get vertigo but dizziness/head swimming/light headedness/wooziness and a whole other array of migraine symptoms on any given bad migraine day. Migraine variant is the large diagnostic umbrella where the atypical migraine conditions and experiences are tossed. You have to ask yourself: do I feel lucky?? LOL. I loved Scott’s post. Can they puhleeze find some simple reason that dizziness persists or constantly recurs and just fix it?
Gail : )
That does make sense about the VRT. I imagine you’d see faster results continuing the VRT exercises that are given to you along and anything else you do rather it be football or badmitten would just be extra. After all, they did create a specified exercise program for a reason right? If just playing sports would work then the docs would just tell us to get out there and play some sports and you’ll get better. Playing sports alone would probably work, but would just take a lot longer for you to compensate.
I do believe those exercises are the way to go more than anything when it comes to VRT cause they are so specific to what your needs are.
My neuro doesn’t recognize MAV as a formal diagnosis but uses migraine variant only versus classic migraine, etc. She was quick to point out that patients with MAV or dizziness as a primary symptom also have so many other accompanying symptoms that it was not of clinical or practical value to use an oversimplified term such as migraine associated vertigo
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I agree with this. It’s all just migraine and it shows up differently in everyone that has it – like a fingerprint. No two people are identical yet the main symptoms are usually there. We’ve hit on this before … that no one would say “I’ve got migraine associated headache”. There is the classic and probably most common sort that is strictly headaches with and without aura, and then all the variants which most of us fall under. But for the sake of discussion, MAV works.
We could always change the site name to Variant.org :lol:
I agree with the first post. A lot of diagnosed MAV sufferers have migraine as a result of something else.
I have had very similar vertigo attacks with and without a migraine prophylactic. In the latter case it was the same kind of attack but didn’t escalate into a headache because of the drugs. But I still had the attack and it wasn’t a migraine! I still had the very same motion sensitivity and had to sit for hours in bed, just the same. The key difference I noticed were my eyes: they were freed from the attack because of the drug I’m taking so I didn’t have to stare at a spot on the wall with my eyes open to feel comfortable as I would have without the drug. As a result the brain was also not angry.
MAV has wastebasket diagnosis written all over it.
Thanks for bumping James. There are so many old posts on this site I’ve never seen. It seems like a totally different group of people back then… Maybe they all found relief somewhere/somehow so are no longer active? Or perhaps they’ve said all they could possibly say about this experience…
I’ve doubted my MAV diagnosis for a while now. I’ve never had an inner ear issue. I’ve never had a “classic” migraine headache or any other “classic” migraine symptoms. I’ve never had vertigo. I do, however, have a pretty long history with anxiety, as do many people in my family. And as I mention in almost all my posts, my #1 symptom is constant fatigue. And I definitely have something going on with my eyes, even if it’s just that they get fatigued super easily. So this wastebasket diagnosis doesn’t feel right to me. Or, at least, it feels like it’s trying to do too much. I keep circling back to chronic fatigue syndrome… except without the joint/muscle pain… and without the sleepiness (in contrast to fatigue)… so who knows.
This is always a thread worth reading and I always think of it when I hear people mention PPPD. I like Beatles initial post but it’s all worth a re-read. I thought of it again today most probably because I’ve been really UNbalanced (not dizzy, and not IMbalanced) but unbalanced for the last few days myself. Helen
My doctor told me (on something like 3rd visit, wth) … “oh it will burn out … but I can’t tell you if it will be 6 months or 6 years” (would have been nice if he’d told me earlier, but I guess he needed to work out what he was dealing with)
I was also told categorically that it would burn itself out and that all my symptoms would seem like a bad dream in a few months or at the most 3 years time (… that was 23 years ago). I think for a lot of lucky people that is true. For some reason my brain couldn’t fully reset.
I do think for me that sometimes I came close to being free, I had many many years of being okay except for a bad week or so in the summer and tinnitus and a bit of a swimmy head if I did too much and got too tired out but I always had some degree of ear fullness everyday even on great days. I wasn’t on meds as the diagnosis at the time was Menieres and the meds for it hadn’t worked so I was told there was nothing else to be done ( I did see 3 private specialists who all agreed on this diagnosis as well as the NHS ENT). When I was diagnosed with MAV the consultant said the majority of diagnoses of Menieres in the 1990’s were wrong and were actually MAV
I have also wondered if MAV isn’t really migraine. I had chronic migraine for a few years and the headache specialist said that having the 24/7 symptoms of MAV were something else and that dizziness could only be episodic as part of the migraine prodrome and told me to go back to ENT to have the dizziness and feeling of ear fullness and tinnitus treated. I saw a different headache specialist who said the same, you could have all the symptoms I experience but only as part of a prodrome. They both thought “vestibular headaches” only had episodic symptoms.
My GP thinks I have PTSD (from being in bomb blasts as a child and various other ills that befallen me that haven’t allowed my body to reset properly from high alert) and my body is giving out a bit in my mid fifties due to the cumlative effect which is why I’m having bad MAV symptoms again. He also said that it doesn’t matter whether what I have is called MAV/Menieres/MIgraine etc. I have a complex set of symptoms that “very little is known about.” I disagree, I think the diagnosis does matter as Menieres is treated with different meds to MAV and it is the migraine meds that seem to help with MAV (or whatever we want to call it).
A close friend is a gynaecologist, if I came to her menopause clinic with my symptoms she said she would recommend a Mirena coil and play around with oestrogen patches.
I suppose MAV is a diagnosis of exclusion, a “wastepaper basket” diagnosis. I think we are part of the awkward squad for doctors along with ME/CFS and fibromyalgia sufferers.
the fatigue on some days is so bad some days i think i have “ME/CFS”.
VM or MAV can be chronic. It was not well understood earlier now i think more Neuro-Otologists agree with that.
I think as you recover the dizziness can have episodic spurts with a constant baseline dizziness in the background. The same can be said for migraine symptoms as well.
I see a bunch of folks posting promising things about the new CGRP meds in the facebook groups which is encouraging.