Hi i have had MAV for a little over a year now. I get terrible migraines and sensitivity to light and sound and i am dizzy (rocking, swaying kinda feeling) pretty much 24/7. I do NOT have true vertigo and spinning feeling but am very worried that it might change into that. I am better then i was when i first got this but not anywhere near where i need to be. Im working with a neurologist and after natural approach didnt work i will be starting medication soon. My main fear is that i am going to develope spinning vertigo, which i cant imagine how bad that would be(and dont want to) but my question is, is it common to develop spinning vertigo when i have never had it as a symptom for this long? Or is it not very likely that it will develop? thanks so much.
Hi Chelsea,
I believe there are a lot of MAVers who don’t have vertigo where the surroundings spin but have ‘positional’ vertigo where you feel you’re the one who is moving. I’ve had positional vertigo for a year and, having recently seen a specialist who prescribed Prothiaden and the rocking, swaying, head juddering, losing balance when moving my head,etc. is calming down at last as well as the migraines easing so I sincerely hope you will get some relief soon. I think the ‘spinning’ if often one of the first signs - someone else will probably be able to tell you what the liklihood is of developing this later on. I can emphathise with worrying about it though - anxiety it one of the major symptoms of this condition!
Regards
Barb
barb-
Thanks so much, and i know anxiety and wory only makes it worse but its hard not to. Im miserbale as it as and cant imagine how much worse it would be if i had to deal with spinning. i had caloric testing which makes you spin and it was terrible. Im glad your doing well. hopefully i will be on the road to recovery soon. Im just trying to put my mind at ease that the spinning wont develop since ive had the same steady symptoms for over a year now. fingers crossed at least 
The neurotologist who diagnosed me didn’t even use the term “migraine associated vertigo” - he calls it “migraine associated dizziness.” And the latter is more appropriate for many of us, because we never feel any spinning sensation (I’m one who never had any spinning either). The term vertigo can be confusing for that reason.
I do have the spinning sensations but from what I was told vertigo is any sensation of false motion. It’s feeling motion where there really isn’t motion. So, you can feel like your moving - spinning, sliding, bouncing, rocking, swaying, falling - all of that can be labeled vertigo. It is also an exaggeration of motion - for example, someone sits next to you on a couch and you feel like you’re falling. All they did was move the couch cushion a bit and you feel it as the exaggerated motion of falling.
I think the worst thing you can do is to be nervous about developing a symptom you don’t have. It’s understandable - sometimes I worry about spinning worse and going into a full on vertigo attack. But with this MAV stuff you’ve really got to take it one day at a time. Chances are good it will not get worse and you will recover from the symptoms you do have.
Omg that is one of my daily fears as well! I haven’t had the rotational spinning but rather 24/7 disequilibrium rocking swaying crap! Idk I guess I fear it do much because I have been able to remain functional with work and home life etc but if I has spinning vertigo I think that would change, and I always fear it’s gonna happen at work or something when I have no control of it. But I guess this is where my anxiety really fuels this disorder for me. The only comfort I have is that it’s now been 10 months and I’m still functioning just wish I could feel normal again : ( there are a lot of things I can’t do that I used to and that sets in the depression
I was told that so-called ‘true vertigo’ - meaning the actual spinning of the room so that you cannot walk straight - is only a symptom from bppv or Meniere’s or possibly ear problems due to a virus.
So if you have just regular MAV rocking 24/7, my bet is that you would not get spinning vertigo.
For example, in my case, I had two episodes of true spinning vertigo that were last July and last September, but then it became 24/7 unsteadiness and the FEAR of spinning. I was told by my doctors at the Dizziness Clinic and the Mayo that it is unlikely that I will get true vertigo again since that it typically a single episode (or a couple episodes back to back). They told me, “Whatever trauma you initially suffered has long since resolved itself, but your brain is still reacting as if there is trouble, that is what is causing your condition.”
So to answer your question, I don’t think you should fear this condition progressing. It’s bad enough as it is!
“I was told by my doctors at the Dizziness Clinic and the Mayo that it is unlikely that I will get true vertigo again since that it typically a single episode (or a couple episodes back to back)”
Not so. I know lots of folks who have multiple episodes of TRUE room spinning vertigo. some quite often , others go years in between