What exactly does the V in MAV mean to YOU?

I ask this because it seems to widely vary. For instance, to me it means off balance, rocking, false movement sensations…24/7. But the true definition of vertigo means spinning?! My symptoms are seriously pretty constant and consistent. I’m just wondering what it means to all of you. Do you spin? Only with headache or all the time? Or are you more off balance and rocky like me? Just curious…

Hi I do not spin either and never have, for 6 months i have a constant sensation of pulling or movement inside my head. I kind of feel the sensation of being in an elevator but all throughout the day like a dropping down sensation rather than spinning. I also have had 5 ocular migraines.

My symptoms are similar to yours pharmgirl. I “rock”, have motion in my head like being on a boat. I get headaches too but i rock 24/7 headache or not.

Just off balance, whacky feeling and brain fog 24/7.

Does the off balance feeling/rocking come from your head, or are you really off balance,ie do your legs feel funny, can you balance on one foot etc?

my stuff is feeling “high” and not in a good way…brain fogginess…like my eyes aren’t telling my brain the same thing…so difficult to explain. I have had 2 episodes of true vertigo years and years ago…after drinking red wine both times (no more than 2 glasses) and it went away within hours after taking promethazine whichI take nightly now at a low dose, and it has helped.
Kelley

For the most part it’s in my brain, however, when I’m really bad I can not stand on one foot. Is that what you feel?

A lot of symptoms are in my head but I also have the actual physical symptom of being off balance, I can balance on one foot pretty well but if I close my eyes I fall…I also often feel like I’m falling to the left making sitting still uncomfortable just wondering if physical therapy would help and if this is common to mav?

I don’t know about PT? I’ve thought about it too. My neuro said not to bother but it’s something I may consider? I wonder how many MAVers have had success with it?

In answer to the original question my vertigo for many years was of the rocking type - feeling like the floor was moving beneath me, spongy floors, feeling pulled to one side and even when sitting or standing completely still feeling as though I was falling over. With this recent series of attacks which have affected my ears I have for the first time had bouts of ‘true’ vertigo, i.e. the spinning/rotational kind. It’s absolutely awful.

My neurologist has alluded to episodes of MdDS (not verbally, it’s just in my notes).

As for PT or VRT - my understanding is that it doesn’t work for migraine and that trying it without success (or even feeling worse) is (according to Rauch) a very good indication that the symptoms are caused by migraine rather than something else.

Vic

Hi all…I have dizziness and lightheadedness 24/7. Have chronic headaches, some days horrific, some days so light I am not aware of them (this is rare though), I have photophobia, phonophobia and I almost always feel like I am listing to one side. I also rock with spinning sensations. I have had several true vertigo episodes for which I was given IV steroids which gave me almost instant relief. Thank goodness the actual vertigo seems to have stopped for now.

The food triggers are big for the vertigo and dizziness. Chocolate, peanut butter and red wine. I try to avoid them but sometimes I just can’t resist.

I have not tried PT because my neuro doesn’t believe it helps and my copays are high. Still thinking about giving it a try after I get my tax return.

When the dizziness is really bad I take a xanax .25 mg and it helps.

So basically the V in MAV to me is my dizziness along with brain fogginess and like Kelley I feel like I am high.

Take care, Karen

I have both…off balance most of the time. But i also get really bad spinning attacks, like i just got off the tilt a whirl. :shock: I cannot walk straight & if my eyes are open i have dble vision…followed by nausea. I havent had a severe attack in a few wks, just have a constant off balance feeling like im walking on a suspended bridge.

yes, i get brain fog…my memory seems to be getting worse, is this a symptom of MAV…or menopause?..i dunno.

I have never had true spinning vertigo either. For me it’s a “floaty” feeling like my brain and body are slightly disconnected, blurry vision, nystagmus and it’s like I am walking on sponges and can’t balance. On and off during this I get a feeling of depersonalization like my voice isn’t my own and derealization like the world isn’t real. This is then followed by extreme anxiety and a panic attack because it is such a strange feeling. It’s like I am on drugs and can’t think or find words.

I do not have any constant vertigo, have only had episodes like this twice; one for two days and one for an hour. (I’ve only been dealing with MAV for 4 months so far.) It took my balance a week to recover from the first episode, I was walking into everything after the other symptoms subsided and constantly leaning to the left side.

V stands for hangover… But without the fun last night. (plus ear and sinus-pain)…

I was diagnosed 4 years ago with Migraine Syndrome rather than MAV. I don’t have rotational vertigo, mine is hwere everything in front of me is moving and shifting…turns out I had Nystagmus which I’m wondering is the “vertigo”? Anyway, since being on my daily prevents, the furthest mine goes now is a woozy head.
Pam

Oh i also wanted to add that since Ive been on the meds…i have not had the ear fullness problems anymore. they were quite annoying, especially if i was on the phone at the time…the sound would be muffled & then the voice on the other end would get higher pitched like they were inhaling Helium… :shock:

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I have never had true spinning vertigo either. For me it’s a “floaty” feeling like my brain and body are slightly disconnected, blurry vision, nystagmus and it’s like I am walking on sponges and can’t balance. On and off during this I get a feeling of depersonalization like my voice isn’t my own and derealization like the world isn’t real. This is then followed by extreme anxiety and a panic attack because it is such a strange feeling. It’s like I am on drugs and can’t think or find words.

I do not have any constant vertigo, have only had episodes like this twice; one for two days and one for an hour. (I’ve only been dealing with MAV for 4 months so far.) It took my balance a week to recover from the first episode, I was walking into everything after the other symptoms subsided and constantly leaning to the left side.

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Wow… just, wow… that’s me. To a ‘t’. Couldn’t have said (typed) it better myself.

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A lot of symptoms are in my head but I also have the actual physical symptom of being off balance, I can balance on one foot pretty well but if I close my eyes I fall…I also often feel like I’m falling to the left making sitting still uncomfortable just wondering if physical therapy would help and if this is common to mav?

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Hi there. I went through some time in PT and while it helped in the beginning, once I had another vertigo attack, everything I learned from PT went out the window. I felt like all the improvements I made while on PT was gone because I would feel so sick and right back to square one after a vertigo attack.

to me, vertigo is actual spinning. i feel like i am in the washer machine and everything in my sight is spinning in circles. when this happens, i tend to drop and go hold on to something stationary (like a desk) and close my eyes. with my eyes closed, i feel like i am spinning in a circle even though I know I am physically not moving. its a nightmare when i get these. the vertigo lasts for about 5-7 seconds then i have low grade dizziness and am nauseous for the rest of the day and sometimes even the day after.

My progression has been unpredictable. First year and a half, it was simply episodic, mild dizzy spells. During those spells, I would either feel like i made a quick turn, or was floating just a bit, or like I was walking down the aisles of a train. It varied. Since I’ve been involved in this current flare-up (11 days now), it’s feeling more like a wobbling boat with that occasional light spin or tumbling feeling. Wwwwweird.