When trying to describe it to someone you could say, “Do you remember when you were a little kid and you used to spin around and around until you got really dizzy, and then when you fell to the ground it felt like things were still spinning and the ground was moving?”
Then, when they say “Yes, I remember doing that,” you can tell them, “That’s what I feel like all the time.”
With respect to #3 on your list, earlier this year both my neurologist and VRT offered to help me with a disability claim. I’m a sole proprietor. I work full time. I absolutely have MAV. It’s not at all easy and it requires a lot of flexibility but it can be done.
@flutters Yes I am very well aware that someone CAN work with MAV, I did so for many years. Mine unfortunately got worse and worse and became too disabling. Yes I went to work dizzy, yes I went to work with head pain, yes I went to work nauseated, but it became too dangerous for me to drive, too difficult to turn my head without getting spinning sensations and nausea, and way too difficult to look at a computer screen for longer than a half hour. I hope to work again in the future, but right now it’s a struggle for me each day to make it around my apartment and survive.
My comment was related to this thread about MAV being common so I wanted to mention that my PCP knows one other person besides me that has it. Also to point out the misinformation among doctors, she thinks just because her other patient is working that I can’t have MAV since I’m not working. This doctor didn’t know me when I did work with the condition. But I know I’m not the only one, far from it, who cannot work during at least part of their MAV journey.
I was agreeing with you. How come you and I know you can have MAV and still manage to drag yourself to work (if you’re lucky) but most doctors don’t? And, why can’t you have MAV that’s disabling? Of course, you can. I can work because I’m lucky, and heavily medicated, and living a lifestyle that works for me. In January and February I was completely disabled. I have no trouble accepting I could get back there.