Hi there,
Just a quick question which I hope that one of you might have the answer to.
How common is MAV, with only dizziness and disequilibrium as symptoms? I mean basically a sensitivity to movement and a general feeling of dizziness/disequilibrium, but without headache, aura or any other obvious symptoms?
Cheers
Mark
I find it a bit difficult to find any solid statistics/numbers (though Scott might have some info on that), but I’m of the impression that it’s fairly common to have vertigo/dizziness and motion sensitivity as the only real symptoms. Many patients have few or no headaches during MAV, and it can occur with or without aura (Dr. Hain says that about 80% of migraines are without aura).
The one thing I’m not clear on is that Hain says hyperacusis is common, and that he sees a lot of people who “have visual sensitivity, and sound sensitivity” for a month or longer. So it’s very curious to me why some people (with MAV) have one sense – vision – affected but not the other sense – hearing. I would have thought all senses were amplified, as Dr. Rauch says migraine is basically a “global disturbance of sensory signal processing.”
Actually, there may be a clue in that, as I think about it. Be interesting to speculate about whether MAV varies, from case to case, in which parts of the brain it affects. If it is variable, then there could be different forms of MAV.
(Anyone care to speculate on the “one but not the other” question about the senses?)
P.S. Sorry, 3/4 of the message was a tangent!
I will say that for the first 6 months or so I had no headaches and just dizziness, lightheadedness, dysequilibrium with weakness and fatigue. For the past 5 months, however, I have added fairly significant headaches to the mix. During the earlier time, my vision was also off, very sharp. However, this sharpness has subsided, slightly. I have continued to be light sensitive in general throughout this entire period. My hearing has been fine but in the early months I did have ear fullness. I have also had ringing in my ears throughout the entire time but now I added high pitch heart beat noises when all is quiet. In summary, I think MAV symptoms change over time depending on the person. It is all a big mess and I can only hope that each of us finds the right mix of measures to let us go back to normal lives! Ben
That is an interesting question and I suspect you will get a different answer depending on how each person has been effected.
I had migraine headaches for years but never had the dizziness, motion intolerance, vertigo , spacial disorientation until about fall of 2–7 and then it was gradual until I had a crash in July 2008 , I had several attacks prior to then. Surprising after doing the diet modification, life style changes , sleep, eat right and reducing the stress the “headache” part is almost never there however the other has not gone away since July of last year. Although it is better in some respects, other symptoms have manifested themselves since that time…the anxiety, extreme weight loss, muscle spasms, ear fullness and pulsating in the ear, fatigue…
So can the MAV be without other symptoms I suppose they can but perhaps they change or morph into another form over time without warning and finding those that understand how to diagnosis and treat this is somewhat difficult. Because I do not think there is a magic fix for one size fits all, so therefore one would conclude that this effects individuals differently so therefore they respond to different treatments.
i
As painful as it was sometimes the headache potion was easier at least you knew what to expect, i only wish I had made the lifstyle changes long ago would I have avoided the disease progressing to this form?
Hi,
Thanks for the info. It does seem that there is a lot of overlap between MAV (without much in the way of headaches) and Labs/VN. Both make you dizzy and feel disequilibrium and both make you sensitive to motion and/or sound.
I suppose that’s why the two conditions are often mixed up. I’m only now thinking I’m MAV not Labs/VN because of the way vrt can make me sick for days and the fact that all the Labs tests came up negative.
Mark
Hi Mark,
Before Mav I would only have traditional painful migraine 3 times a year, No dizziness.
When it morphed into Mav, I had 24/7 rocking like on a small boat in a windy harbour,
It was never ending.
I never found photophobia a problem, except for under fluro lighting, or flashing moving lights.
Phonophobia has always been a huge problem for me.
Last year I had my big crash, and during the attacks felt the vertigo others speak of, but it soon left after each attack.
Occasionally I’d wake up with my vision swirling in the mornings, it left quickly.
Even though I’m doing well on meds, I still see aura 3 days out of 7, it doesn’t morph into a full blown Mav attack anymore.
I used to feel pain in the back of the scull neck and shoulders.
In the first 14 years of having Mav, I only rocked,
jen
Hi Mark,
I am new to all this but looks like I have MAV. I have … no aura, no headache, but a feeling of instability, at times gentle at times severe. Sometimes I feel like I can’t move, sometimes I feel like I am walking on a slightly rocking boat. I feel like my face starts to suck in on itself; I feel like I look different; I have a strange feeling like a presence above one eye. It is hard to talk and hard to swallow…and my jaw goes tight like it has to clench. I get wobbly legs and a feeling like my head and arms have no blood in them. Sometimes I feel like someone has given me a sleeping pill, like that there is no way I can not sleep, then I sleep for hours.
I hope that helps. I think we are all different.
Good luck and take care.
Penny
Hi,
Thanks for your thoughts. It does seem like this condition (if that’s what I have) is very different for everyone. There seems to be 3 conditions that can all have overlapping sympoms. It therefore can be hard to pin down the cause. The conditions are:
If the symptoms are only dizziness, disequilibrium and motion sensitivity, then all 3 can fit the symptoms. Unfortunately it seems that Drs like to jump on number 1 or number 3. Without headaches and if the feelings are present most of the time, then these are favourites. Labs/VN at first, then if you don’t get better they assume it’s in the mind and opt for GAD. MAV (in my case at least) seems to be a last guess for Drs.
Mark