A very BIG question

Hey Guys,

For those of you who have MAV but do not suffer from the ‘typical’ migraine symptoms (ie, headache)…

How the hell did you get to your diagnosis of MAV???


Hi Ella,

Great question! It took me YEARS to work out I was a migraineur. And now that I know what this is and what sets it off, I have made my mother aware that she too has this but to a much lesser degree. She’s 75 and only now got the message. Previously she never quite understood why she had off days with head pressure, tired eyes, sporadic and fleeting depression etc, etc.

I only worked it out as the evidence piled up. When I was first presented with this as a cause for my misery I thought there was simply no way. On the Healthboards I skipped MAV posts for years thinking it was some weird freak illness that one in a million had. So how did I work it out?

  1. Adam and Hannah both were highly suspect of my case and it was Adam who really nailed it for me. I was, for the longest time, thinking I had uncompensated VN problems … and that each attack was a decompensation event.

  2. I started seeing clear patterns of foods and showers (head sensitivity) producing nasty neck pain and thus headaches.

  3. It explained why Cipramil kept me well and why I slipped back into it all when I stopped taking it (Cipramil is Baloh’s favourite anti-migraine med).

  4. The clincher was a BPPV attack that hit after someone put a bunch of products on my face. That night I had a severe headache and disorientation from it. In the morning I rolled over in bed and had a full blown BPPV attack. A day later I found a newly released paper on the epidemiology of BPPV. The incidence of idiopathic BPPV was found to be 3X higher in migraineurs – far more than any other cause.

  5. With all of the above and my history pre VN, Prof Halmagyi here in Sydney agreed I had MAV.

As soon as I realised all of this and began eliminating triggers, everything improved in a very big way.

Best … Scott

It took 11 years. Like Scott, when I was researching on the computer, I skipped every MAV post because i didn’t have migraine headaches. Every doctor I saw until recently had never heard of chronic dizziness that wasn’t anxiety, or a chronic rocking feeling. I finally found a post about someone who had the rocking sensation and read that this sensation was typical of MAV. I read more about MAV, the waxing and waning of symptoms, that you can have tinnitus and ear fullness, that it comes and goes throughout your life, the “mini-spins” that a lot seem to have and it was my a ha moment. Then I started getting headaches every day. I still went through 4 doctors until I found one that knew about MAV. It has been a long road!

I was diagnosed by Dr. Hain in Chicago, who specializes in dizziness. Honestly, I didn’t believe him, because I was like “migraine…but I don’t get headaches!” He unfortunately didn’t really explain it to me very well, about how you can have MAV without headaches, so I still felt lost after seeing him. It wasn’t until much later, when I connected some other symptoms I have (especially flourescent light sensitivity) to migraine, and saw other people’s stories online, that I finally realized I really did have MAV.

Hi Ella,

It took about 10 years! Well, actually 10 years ago a bunch of doctors were telling me it was migraine but my migraines had always run exactly the same course and this all felt so different and went on for so long I didn’t believe it. I then had various other diagnoses - virus, BPPV, VN etc and suspicion of various other nasties (eg MS) before eventually getting from Dr Halmagyi in Sydney ‘cycle of migraine’. By then I had found about this site and asked ‘is it migraine associated vertigo?’ and he said “yes”. Good to finally have a name for it!