Have had MAV for 7 years now

Hi I also have MAV migrant variant balance disorder had it for 7 years now , I got it the day before going a skiing trip to Italy 2015 , I was active and in the gym 5 mornings a week before work , I was full of life … then wam it came from nowhere was misdiagnosed with labyrinthitis , and then this journey began .

Like most people didn’t know what was happening for a long time just thy it was not going away , then the anxiety , I found this website I never wrote anything just read everything I could it literally saved my life …
So thank you all for writing about it …

I heard about Dr Sureinthian & got in touch & he was fantastic he gave me back my life I was on meds , & diet it was a long haul but I got there and was doing great .

I was symptom free but was always careful with diet sleep exercise, had no big relapse for 4 years , reduced meds gradually till I was taking no meds this took 18 months. Have been off meds 4 1/2 months and took a relapse 7 weeks ago and it’s still here , so I am now starting back on meds and strict diet again . I never really went off the diet too much , but I have had a lot of stress in the last months.

I feel this illness stalks you , when you do to much when your tired there’s always little signs it’s always in the background, as a lot of others say you learn to live with it , can’t lie when I had relapse couldn’t move my head and was sick for days , felt very low and scared as you think it’s always going to be like this , and you can’t see a way out , but you have to stay positive, and start again with baby steps …

I sometimes get annoyed and think why did this have to happen , as my life as I know it is over , & there’s not enough known about it, it’s like a silent illness no one really can see , and it’s scary as your really left to find out yourself what is wrong as you think your going mad …

Then I think why not me what makes me different from everyone else in the world who has much worse illnesses thank me . So I give myself a good talking to and know I will get my life

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I’ve never relapsed as I’ve never recovered, Mine started 8 months ago and I’m stil in the thick of it. I dont know which is worse, recovering then relapsing or just not getting any better. I hope you hold onto the fact that you sucessfuly managed it before so there’s every chance you’ll do so again.

You know what you need to do. I’m not sure we ever truly recover, rather like an alcoholic MAV just waits in the wings, waiting to pounce and we are always suseptible to getting it again. What triggered it before can do so again. Having a migraine brain means we are more sensitive than other people. Have you stated back on the med you had before? Or a different one? Do you know if anything triggered it this time?