Hello… I am in the grips of MAV for the first time (it’s been going for just over 2 months now) and obviously I’m hoping that it doesn’t stay as a permanent thing. What are your experiences of the periods of time you’ve “activity” had it?.. If you’ve had periods of it, for it to then subside, did it just end abruptly one day - Like a switch being turned off? Or did it perhaps slowly decrease over maybe a number of weeks? Any insight would be greatly appreciated.
For me there were four (!) classes of impacts:
- Persistent 24/7 stuff
- Vestibular attacks that would last seconds to minutes to hours (on occasion) (e.g. spinning, magneto head, feeling of push-pull, rocking and false motion, visual hallucinations) - very variable in timing, location and duration.
- Horrific migraines that would last hours (which for a period of a couple of months, every three days)
- Positional discomfort, mainly in bed, more or less EVERY NIGHT or morning.
I’ve had every one of these symptoms listed here
24/7 after 3 months, then steadily worse for the next 3 at which point I hit my first migraine which would make me a vegetable every 3 days and lay me out for 14 hours at a time. Then it all began to improve at the same time I took Ami and then after a very rocky further year with infrequent vestibular attacks with a relapse that lasted 1-2 weeks then definitely improved until 2 yrs in I was able to drop meds. Attacks disappeared but some gruelling imbalance persisted but generally faded. Today 2.5 years after the start of my chronic phase I’m attack & med free but suffer mild imbalance worse at times and persistent tinnitus and hearing loss. But I’ve not given up hope of further improvement as that has been the trend.
Hi James… So the imbalance you still experience, does it still affect you every day? When you say it is mild do you mean just a minor nuisance, or does it still have a real impact on your everyday life? Any insight greatly appreciated
Sometimes it’s bad enough to cause anxiety (but I’m mostly in control of my anxiety having had this so long) and sometimes mild depression can creep in. At the very least it can be very distracting at times.
I have been getting generally much better last 6 months, but recently had a relapse. I’m pretty sure of the trigger for it. It was nothing like as bad as the relapses I used to have, but I was so enjoying the month by month improvement, feeling like I did several months ago again was a bit of a kick in the teeth and hit my confidence.
I’m really sorry to hear you had a relapse… I hope you can get back on track soon. Do you believe this ever eventually goes once its started, or do you think we’re set for a life time of it?
In my experience, it gets less and less. I’m way way way better than I was 2 years ago. I’ve had one vestibular migraine in 12 months? I no longer get vertigo. I’ve posted of my improvement here.
My doctor, who diagnosed me with MAV, told me “it disappears into the background”. Which is a bit vague … but that’s been true so far, I’m glad to say.
I suspect there are different drivers of MAV. I personally do not accept 'Migraine" as root cause - what is causing the Migraine in the first place? This is what needs to be established. Tinnitus is not migraine, it’s indicative of pressure in the inner ear … Medical science has a significant way to go.
so happy to hear of your progress and I hope you continue to do so. I havent been officially diagnosed with MAV but given my strong family history of migraines and my own as well as 24/7 symptoms and the preceding BPPV which set off everything I’m almost sure its way I have
I’m currently on topamax though 75mg havent reached the target 100mg but and symptoms in general are better but I dont feek like its really doing the trick. I was considering trying ami aa I heard people doing so well on it and zi was interested about your experience with it
Thank you Dina!
Here’s post I wrote a while back on Ami. It ROCKS. Give it a try, even at low dose!