New Member - Possible MAV?

Hi Everyone!

I am new to this board and must say reading all your posts have been a great comfort to me. Not to go into too much history, I’ve been a migraine sufferer since I was 14 years old (46 now, female). I would get migraine with aura followed by nausea, etc. As I got older, I noticed my migraine frequency was getting less and less. At about age 36 I started getting complicated migraines - all the aura but no headache. While it was nice not to have the headache, the aura symptoms were frightening. For the past 10 years now I’ve been getting these complicated migraines off and on which I could usually treat with over the counter meds when needed. Bothersome but managable. Two years ago I noticed I was getting phantom smells - a new aura symptom. I went for an MRI which came back normal. Diagnosis back to complicated migraine.

Then in September of 2010 I had a really bad episode of dizziness - a new symptom for me - almost to the point where I blacked out. It came with palpitations, aura symptoms, as well as bad ear ringing, etc. I went to the ER where I was checked for heart, etc. - all normal and sent me home. October again I had another episode, went to the ER again, same result. November it happened again - this time it was severe and lasted several weeks. I had to take time off work as the dizziness was uncontrollable. I saw a neuro on November 30 who diagnosed atypical migraine and prescribed 10 mg of amitriptyline and ordered another MRI just to be safe. I started taking the med which seemed to diminish the dizzy spells to a manageable level but I got weird side effects from the med - a total personality change (not for the better), anxiety and I wasn’t sleeping well. I talked to my family doctor about it and said I’d rather go off the drug and try and treat these new symptoms of migraine (dizziness, ear ringing etc.) holistically - massage, physio, exercise, diet, vitamin, etc. If it comes back really bad then I might have to look at something else but for now this is my plan.

I went for my MRI yesterday and should have my results next week sometime. I’m hoping nothing serious turns up and then I can try and treat this problem. Everything I read about MAV seems to fit me. I also notice that these symptoms flare up the worst when I have my monthly period. That would explain part of the month but not the 2 months so far that I’ve been suffering with this.

I am wondering how you all handle this. I am a very active person, full-time job, hobbies, etc. and to go from that to being flat out in bed, not being able to work full-time (thank god I have an understanding employer and they are allowing me to work flex-time) and being very depressed, I have had to resort to taking Ativan once in a while just to calm down my anxiety! My daughter is worried I have a brain tumor (so do I…lol) and between her anxiety and mine I am really struggling. The sub zero depressing Canadian winter doesn’t help either! If my MRI comes back clean I am going to ask my family doc to refer me to a headache specialist, bring forward my idea of MAV and see what he says.

Thanks for letting me tell my story. In the interim, any comments, suggestions, etc. are greatly appreciated.

Welcome -but sorry you have to be here!

Have you read through the MAV survival guide? there are lots of lifestyle tips you can try

Hi Tamsha,

It does sound like your dizziness responded to a migraine preventative drug, and also its pattern of coming and going also sounds like MAV. I hope you can get to see the right sort of specialist soon. Perhaps someone else on this forum from your part of the world might be able to suggest a good balance specialist.

I also hope you can manage to treat your MAV successfully through the lifestyle interventions etc you have managed, but if not, there are other migraine preventative meds that might be worth a try, as you may find another one works for you, but without the negative side effects.