Adam, I posted to you on the dizzy lounge but they told me it would be better to contact you here. I am worried I guess because since I have been diagnosed with MAV I keep second guessing the diagnosis and heres why. I have a neurological/nervous system involvement that is troubling to me. Some examples are shaking, shivering, tremors occ. intolerance to cold temps. I also have a head bob that I notice if I dont take any medication. I feel cognitively disconnected at times, always off balance which I know are associated with this but cant help but shake the feeling that something else is wrong. Despite the fact that 2 neurologists have told me otherwise. I am not panicking, at least I dont think I am but can have this come over me all of a sudden or can have it lingering for hours/days on end. What do you make of it? What other possible tests can I have? I just want to believe it is the MAV but so many symptoms seem like they aren’t connected at all. Anyway, I will be waiting to hear from you and thanks in advance.


hi kim

welcome to the forums!

i’ll just cross-post what i posted to you on the dizzy lounge:

i have to say to start with that you can’t take anything i say as gospel! important to check it with your doctor etc - i have mainly learnt what i have through daily research and talking to the neurotologists i have seen. i just find it frustrating that so many people complain of headaches, light sensitivity and other migraine-specific problems with their dizziness but haven’t taken the route of trying to treat the headaches and seeing what happens with the dizziness. needless suffering. anyway:

the sort of things you describe are pretty normal for us. you become a lot more aware of what’s going on with your health when you’re chronically ill, and while the things we notice might not be noticed by someone who is not generally ill, we notice them and worry about them. i found when i discovered effective treatments for my MAV, a lot of my other complaints disappeared. maybe i just became less interested in them because i felt generally so much better? they’re usually things not worth pursuing as they are non-specific and doctors will often just make you feel worse by telling you “You’re just imagining them etc”. if you go down the path of treating your MAV and start to feel better i’m sure a lot of your other problems will disappear too. i have posture problems, neck pain, lower leg pain, vision problems and numerous other things which either get better or disappear when i am feeling better from migraine meds.

i hate to say it but even though we have such great communities like dizzy lounge etc., they unfortunately cause us to focus more on our health problems which in turn makes things worse as we become more self-aware. it is pretty hard to find a balance of trying to keep on living with the problem and researching it at the same time.

best of luck!


Hello I just read this reply and thought it was very good.