I 've had MAV since Sept of 2010 but didn’t get diagnosed with it until June of 2011 now that I’m diagnosed with MAV does it mean that it will never go away and that I will always have it and have to be on medications for the rest of my life?
Thanks
According to information that I have gathered from this website, medical journals, and reading about neurologists experience, the majority of MAV sufferers are able to suppress their symptoms and lead a normal life (while still avoiding triggers). There are a fair number of people on this website who have been able to force MAV into remission through diet, lifestyle and medication. Read the “Success Stories” thread for encouragement.
It can be discouraging at times before you get treatment. But keep in mind that MAV is very common, and you usually dont see the simple straightforward cases presented in forums because those people get their problems fixed and dont have the time or interest in sharing their experiences on forums. In medical forums you will find a lot of the more complicated cases because forums are not a random sample of the MAV population.
Hi,
Don’t be disheartened. I know it’s really difficult to imagine a recovery after so many months, but people do get better. I was ill from Dec 2009 and only have felt totally better since last month really, so it was over 18 months for me, but it has happened. Even though at times I thought it never would.
Ichbindarren’s comment about a forum not being representative is spot on. Not many people stay on forums once they are better, so you tend to get the difficult or more unusual cases on here. And people who are more sensitive to medication/have more side effects too.
I like the comment that MAV is common but the milder cases don’t get as far as fora like these. Never thought of it like that. 
xx
Hi - don’t get too down - Tom Boisimier is a really well respected resident expert (and a director of a balance centre in America) over at DizzyTimes.com, and here’s what he told me:
"We do a 2 month trial, starting with the lowest posible dose and gradually building to the highest dose. If we haven’t seen any improvement after 2 months, we try something else. I don’t have average dose info - it avriesa lot from one patient to the next. Most patients can start gradually reducing their mirgaine preventative within 3 to 6 months. A very small number seem to need to stay on preventative med indefinitely. "
To which I replied:
“Thanks for the info Tom. When you say “Most patients can start gradually reducing their mirgaine preventative within 3 to 6 months”, what do you mean - that they have some success, have broken the migraine cycle, and can already start coming off the drug?”
To which he replied:
“That’s correct.”
The thread is here:
dizzytimes.com/showthread.ph … th-Topamax
So, there is hope!
Tony.
I’m at the one year point. I would say that I am improving about 2% per month without medication other than to help me sleep.
I white knuckled it for the first six months, not taking a single medicine. The doctors told me I had BPPV and spent months in physical therapy. I did not get better. All of my tests were normal except the caloric (water in the ear) which showed 25% lack of function on the left side.
After six months, I started taking a little bit of valium a few times a week, then went to daily low dose klonopin at night. Those medicines have helped me sleep, and give me the confidence that I won’t wake up spinning.
My first months were hell. I could barely stand up, could not stand in lines, and constantly felt like I was falling over. Now I am pretty stable except at night with the lights out (when I feel like I am in a airplane), and when I use the computer (I feel like the room is moving).
So I would say that after a year I am about 25% better than I was a year ago.
I will soon start other meds.
But to answer your questions - Does it every go away? – the answer is that for some people it does and for others it doesn’t.
For me I had awful migraine from the age of about 12 until my late 20’s,amitriptilene and stress reduction helped me the most.
Now I have silent ones which again are being helped by the same formula,with the addition of verapamil,so far so good!
Thanks Tony for posting the link to that thread,very interesting to hear of what he said regarding blood flow and scar tissue,makes sense to me!