Basilar migraine

Is anybody here diagnosed with basilar type migraine? I was diagnosed with MAV in Dec 07 and then with basilar migraine in Nov 08. Both at London Neurology hospital. Initially took topiramate (Jan 08) but came off due to bad s.e. Then lamotrigine for 8 months…but no real relief, just hoping that various levels of lamotrigine would help. In Nov 08 it was suggested I try propanalol or a re-trial of topiramate (low and slow). So far I have not been brave enough to try anything as too worried about s.e stopping me working and weight gain issues. It has been suggested via another website that I am being somewhat fool-hardy not taking the advice of the neurologist re: medication and am putting myself at risk of stroke. I am now worried.
Does anybody have any experiences?
Does anybody go running with their symptoms?
My symptoms tended to be on a low simmer for months with an occasional turning-up of the heat so that symptoms bubbled up into action. I have been in a state of bad motion stuff, back of head thumping heads AND side of head pains, lots of hideous nausea, thick foggy heads, screwed up vision…for the last two weeks. Maybe it is time to go back to my GP and discuss the neurologists recommendations. I just feel rubbish about this. All these meds. have such hideous side effects. :frowning:

I wish I had the answer if you are med sensitive then that makes you nervous as I can understand that as the meds I have tried before did not work for me as the se were worse than the disease itself.

Can you take anything that helps the symptoms?

The only thing I take - and not regularly - is ibuprofen or paracetmol. I have triptans presecribed by my GP but have read that they should not be used by those diagnosed with basilar migraine so am surprised that he continued to prescribe them.

Hi Ali

That was my very first diagnosis over 20 years ago, basilar migraine. Nearly all my migraines were at the back of the head (like being hit with an iron bar, not that I ever have!) and they often lasted 3 days. I was suffering severe vertigo attacks too and never made the connection. In desperation, I kept a diary and saw a connection. Since then, the diagnosises with tests have been menieres, then inner ear lesion, vestibular migraine etc. They have found certain things on the ear tests, but I think its all the same thing.

No, dont take the triptans, they are dangerous to people with basilar migraine and can cause stroke. I tried them at the beginning and didnt find them very effective anyway. If I got a stinker, I took veganin and still do which is paracetamol, codeine and caffeine (I know we are all trying to get off codeine and caffeine, me included, but for a really bad migraine they work for me).