Has anyone had an aha moment when taking meds for MAV. When you go, "yes I can see that the medication is helping I feel better, my dizziness is minimized quite a bit."

I somehow think that there is no such moment and that you'll never know if the meds are helping, if it's the VRT, the diet, time. It's just so frustrating. What's the point of taking meds if you never have that AHA moment where you know that's the thing that is helping you. It's just so depressing......

Susan

I noticed a big improvements on the meds.

That moment is more likely to come when you try to stop them ....

The improvement can be gradual, but the drop back to illness is brutal ...

Now I second that..I got to 100% and decided to come off the meds and now I am in month 6 of he relapse on a higher amount of meds than the first time.. I am better like 85% to 90% but when I started to feel lousy again I was like OHHHH No what a nightmare...Ther progression for me is like adam suggested gradual, non-linear ups and downs till you look back and say wow this has been a good run

It seems almost pointless to try the meds to figure out if it's the right thing for you. Everything about this is so ambiguous that it's hard to know what to do and who to listen to.

I'm tapering off propranolol for MAV. The neurologist doesn't think it's MAV anymore because my symptoms fluctuate so much. I'm doing VRT and find that sometimes it makes me feel worse for hours after I do it. If I don't do the VRT I tend to feel better. Does this mean it's MAV according to some specialists? Should I try just meds with no VRT and see how it goes but that can lead to sliding back to bad symptoms. Should I do the VRT with no meds and see how that goes? Every specialist has their own opinion, none of them agree, it adds to my anxiety.

Might as well just put your options in a hat and pull out one and do that because that's how scientific the doctors seem to be.

Sorry about the ranting, I'm just soooooo frustrated and at the end of my rope about this.

Thanks for your input.

Zsuzsa--

I'm new to this problem, but I'd say don't lose hope! Keep consulting the specialists, but be your own best advocate. I've seen several doctors (ENT/neurologist/neurotologist/PTs) and it's true...they all see the matter differently. What do you think about your own situation, based on your symptoms and what you've learned about these illnesses?

I'm still trying to figure out if VN or MAV or some combo is the culprit with me as well. My initial symptoms seem to scream VN, but I get headaches, too. I'm trying to manage with VRTs, the migraine diet, and lots of supplements, including one to raise serotonin.

Time will tell. Either way, at least there are treatment options for both conditions! What are your symptoms like? I would think that large fluctuations would point to MAV, rather than away from it, but I'm just learning about all this...

--Violet

The neurologist doesn't think it's MAV anymore because my symptoms fluctuate so much.

If he/she said that I'd avoid them for a start, its far more likely to be MAV if symptoms fluctuate a lot.

Travel if you have to, and see one of the best if you are getting jerked around on a diagnosis. Hain in Chicago, Baloh in Los Angeles, Rauch (not sure where he is).

Either way, you have nothing to lose by trying the meds. I had to trial 15 before I came across a combination of meds that worked for me. The mindset that you can just take one and it'll work without question or it isn't MAV is a recipe for failure but seems quite common.