Would you say dizzy or something else

Everyone , even the doctors seem to associate this or similar diseases to dizziness…but in my case that is not the correct word…

It is not spinning, but more of a wave sensation in the head, and a heavy head feeling when it gets worse…

I seem to have a very hard time describing it to people , even the doctors kinda of look at me strange when I start telling them how mine spells act.

I have an appointment with the specialist at Emory Tuesday and everything on the questionnaire keeps refereeing to dizziness and that really is not what I am …I guess I will try and explain it the best I can…

How do you all describe your symptoms along these lines?

Hi,

I do get dizzy and don’t get this wave sensation. However, a neighbour and friend of mine has a much less severe case of MAV - hers is sporadic and intermittent and tends to last for 48hrs at time. I think she gets what you describe and says it feels like a bucket of water sloshing from side to side in her head. She was only recently diagnosed with MAV and the neurologist she saw said that this description of MAV symptoms is very common.

H

I like the word I learned on this site, “dysequilibrium.”

Though to describe it in layman’s terms, I tell people that on most days for at least part of the day (or sometimes for most of the day) I feel like you feel when you first step off a rollercoaster: I’m able to walk, but I sure wouldn’t try to walk very fast and I wouldn’t turn my head quickly to one side or the other because any of those actions might make me start to fall over - but if I walk slowly and carefully, I can function. If I’m sitting, and I turn my head too quickly, I feel like it keeps moving even after I know I’ve stopped it.

But when I’m at my worst (I think it’s when my perimenopausal hormones are spiking or plummeting), that’s when I get so off balance that I wouldn’t even try to walk - fortunately, I’ve only had a few episodes like that, but I had tunnel vision with a couple of those, which was pretty scary.

I think “disequilibrium” really is the best way to convey it.

When I’ve talked about this to friends and others, I use that word, and then tell them that I’m always a little “off” in terms of my equilibrium, and that full blown vertigo—or any form of dizzy “attack”— is rare.

I think a lot of people equate vertigo with a spinning sensation, which it seems is not the case for most people with MAV. From my own experience I would describe it as a sensation of rocking, or falling, or like being on a boat on choppy seas. Also, when walking it can feel like the ground is falling from under me, is spongy and/or like walking on a trampoline. It is definitely not spinning.

Hope that helps!

Luckily I only very rarely get these sensations now, and only fleetingly. It seems my preventative (prothiaden) is pretty successful.

Victoria

I think a lot of people equate vertigo with a spinning sensation, which it seems is not the case for most people with MAV. From my own experience I would describe it as a sensation of rocking, or falling, or like being on a boat on choppy seas. Also, when walking it can feel like the ground is falling from under me, is spongy and/or like walking on a trampoline. It is definitely not spinning.

Hope that helps!

Luckily I only very rarely get these sensations now, and only fleetingly. It seems my preventative (prothiaden) is pretty successful.

Victoria