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