I hope that you are all well?
I am just wondering, how common is it in MAV to just have dizziness and an (occasional) feeling of butterflies in the stomach with anxiety as symptoms of MAV? I was originally diagnosed with VN or Labs, but have been dizzy now to varying degrees for nearly 2.5 years. I’m therefore now tying to look into other options.
The first year was the worst, but I still have fairly constant mild dizziness, with a period every few weeks where it gets really bad for a few days or a week at a time.
Thanks for your thoughts
what sort of dizziness do you have?
I have had constant disequilibrium for almost 3 years. where i have a sensation that the ground is simply not flat.
Lately i’ve also started to get spinning vertigo attacks but i think it is from my medication.
I don’t get headaches. My specialists suspect it could be MAV but who really knows?
I’ve tried my first Migraine medication and it hasn’t worked.
Like a lot of other people, I thought I’d been having “sinus” headaches throughout my life, but I’d actually been a migraineur all along. If you don’t curl up into fetal position with your headaches, or don’t get them only on one side, or don’t have to go home from work because your headaches aren’t disabling, you may not think you really have migraine headaches.
In fact, it turns out that a high percentage of people who are buying over the counter “sinus” remedies are migraineurs but don’t know it.
Usually, to be diagnosed with MAV there needs to be some evidence of migraine headache for yourself at some point in time, or at least some family history of it - but is it possible that like me, you’ve had migraine headaches but not realized that’s what they were?
(But since many people don’t know they have migraine headaches, then it follows that many family members wouldn’t either, so a “possible diagnosis” of MAV might be based on the “family possibility” idea!)
Hi there - and thanks for your responses,
Basically, I have been describing my condition as feeling dizzy to the Doctors, but possibly I’ve been using the wrong term. I have felt nausea and a fuzzy headedness with the sickness increasing with movement, whether I move myself or just see movement on say the television. There has been no spinning though as such.
I gradually began feeling this 2.5 years ago and it got worse and worse for about three months, then stopped almost overnight for a week or two, before coming back again in a weaker form. It’s been with me ever since in one form or another. I seem to be much better for a few weeks (although the symptoms never go away), then it gets worse again for a while and then the cycle goes around again.
Hey, Mark -
I’ve never felt a spinning sensation either. Only the disequilibrium, and the feeling that if I move my head one way it’s still moving that way even when I know I stopped moving it (either up and down, or side to side). Dizzy is a very vague term, and it’s always good to tell docs exactly what that experience is like for you.
In my case, I have MAV with no family OR personal history of migraine headache or aura. However, 2 of my grandparents have suffered with chronic dizziness at various periods of their lives, I suspect one or both of them have MAV. Luckily for them, the dizziness has never been in a chronic state for more than a few months. But they have had quite a few episodes.
Additionally, my mom has had a few spells where she gets positional vertigo, and its not BPPV. Plus my mom gets carsickness easily, and she cannot watch video games without getting carsick. Both of these symptoms are much more common in people with migraine tendencies.
So in summary, its VERY possible to have MAV without the headache. But if you look very closely in your family history, you will almost for sure find some indicators that are complimentary to the MAV diagnosis.
Vertigo has been my main migraine complaint, especially with the two chronic episodes I’ve had; one I’m in the midst of now since January, and one I had 11 years ago for about 10 or 12 months.
I had aura, tunnel vision, blind in my left eye & then headache on the left side ‘regular’ miraines starting about 16 years ago. They went thru some changes, I started to get mostly tunnel vision and less aura, things like that. I rarely got a screaming headache but what I did get was severe brain fog, and aphasia. When the first episode of chronic, and at first violent, vertigo came along, docs just thought it was a really long case of labyrinthitis along with dysfunctional eustacian tubes. The tubes started acting up almost 30 years ago btw…after a bad head cold.
The episode 11 years ago was brought on by the flu. This current one was brought on by the flu shot followed by a month of pneumonia.
The dizziness can be mild or wild, and I almost always feel as tho I am standing on a canoe. I walk like a drunk. The other symptoms all fluctuate; brain fog, aphasia, eustacian tubes, tinnitus, chronic fatigue, flu like symptoms, light sensitivity esp to flourescent lights, and headache.
But mainly, my complaint is with vertigo, dizziness and loss of balance control.
For some reason the violent vertigo episodes have just in the last 3 weeks started up again. I thought I was getting better!
Any way, my PT and neurologist confirm that the dizziness is in my case the presentation of migraine. We used to be called Atypical, which just meant they didn’t know what the hell to do with us! I hope to get back to somewhat normal so that I can work again, but am afraid as I am so much older this time, that things will go on longer than last time.
I have had what was dx as “classic Migraines” starting at the age of 18
They were pretty consistent until I hit my 30’s
I am now 56 and have had a handful in the last 20+ years BUTTTTT I have had episodes of vertigo (dx with BPPV) and off balanced feeling off and on.
6 months ago I came off Zoloft (15yrs use) and since then I am having daily woozy/dizzy/off balanced/ walking like a drunk.
I also get pressure behind my eyes,nose and forehead.
had MRI and that was “clear” Neurologist thinks this is all migraine.
IF so what can I do? I read “heal your headache” and am going to try the diet…but what else.
I should mention I am on lorazepam daily also (anxiety) and wanted to try to get off that but with my dizziness and whacked head feeling I am scared.
so this may not be the right thread to have posted all this but I definitely am DIZZY.