How long have you had MAV?

Had my MAV crash January 24th 2008. Spent a good part of the first month in bed until I learned to compensate slightly. Spent the next 10 months in MAV hell, with visual stimulation overload, head symptoms that would drive you crazy (buzzing, vibrating, usually constantly, fullness,), pressure in the ears, rocking, swaying, the whole 9 yards. Never had a break in those 10 months. Started topamax earlier in that 10 month period and by the 10th month, the topamax had me about 75% controlled. Now, 1 year and 10 months after that horrible crash, I am 95% most days, and 100% on many days. On my bad days I’m about 85-90%, and those happen maybe once every 1-2 months now and I’m only down for one day and it’s very maneagble. No big symptoms. And every month that goes by brings more steady improvements. Lack of sleep used to trigger me. Now it doesn’t. Light used to trigger me, now it doesn’t. It seems that on the topamax, time has healed more than anything else. I will never stop taking it. I take 50mg a day. That’s it. Before the topamax, I was an MAV disaster.

Rich

RICH2008 -

Did you follow the migraine diet?

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RICH2008 -

Did you follow the migraine diet?

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Yes, I had been following the MAV diet from basically the start, with little success. The most important factor for me was not avoiding specific foods like yogurt or nuts, but avoiding SUGAR in general, and keeping a diet lower in carbs/sugar. the higher protein/fat diet keeps my blood sugar stable, keeps me neurologically stable, and keeps my anxiety low. No caffeine either. Bother sugar and caffeine increase anxiety, so I dumped it and it made a huge difference :slight_smile:

Rich

Rich–I have a question about avoiding sugar. Did you totally eliminate sugar from your diet or did you just cut back? I have just heard about how cutting sugar has helped someone else with their migraines. I would like to try it but it seems so hard because sugar is in EVERYTHING…ketchup, mayo, bread etc. And when you’re not feeling good cooking everything from scratch is not that appealing. Also, do you use any sugar substitutes? Thanks!

Wow! At 37 years old I thought I would be one of the newbies. I think I have had MAV (although not formally diagnosed) for about half of my life. It tends to wax and wane with severe bouts cropping up about every 5 years or so. The worst bout I had was about 10 years ago. I had two attacks within a week. I was diagnosed with vestibular menieres (by three specialists) as I did not have hearing loss, fullness or tinnitus (and don’t want it either :smiley: ) The menieres treatments were not working and I was desperate. I started doing my own research and found that my symptoms were stunningly similar to MAV so I convinced my neuro to start treating my condition as such and finally I got some relief! Imagine diagnosing myself! I don’t take any meds except Maxalt for the headache. I carry Klonopin and Meclizine around with me 24/7 for the anxiety and dizziness. I will go years feeling fairly well and then it returns and I go for periods of imbalance, motion intolerance etc. I also suffer from recurring bouts of BPPV.

I’m in my 9th month with problems. The first 5-6 months I had only the balance/dizzy type of probs w/ a lot of motion sickness. In the 7th month
I got trigeminal nerve pain on one side and the next month migraine w/ visual aura and then ones w/out visual aura. The balance problems
reduced dramatically after following migraine diet and regular sleep for 2-3 months. Now the balance probs are not constant, but I don’t think
I’ve had more than 1 wk w/out feeling bad one way or another since this started. Trying different meds, most of which are making me sick too.
This isn’t fun, but I love it when I have good days.