Other hemiplegic migraine people?

Hi!

This is all very new to me, I was diagnosed with them about 5 weeks ago and they are pure awful. Still slightly confused over it all.

I also have temporal lobe epilepsy, which was diagnosed in 2004, and luckily is more or less under control. For a long time I've had tingling in my right arm when I have a migraine and numbness around my mouth. But about 5 weeks ago I woke up with Bell's Palsy and then the next day my right arm was completely paralysed by a migraine. I've never had total paralysis before, so ended up in hospital. At first they they thought it was my epilepsy and todd's paralysis. Anyone else have hemiplegic migraine and epilepsy?

Although this last week has been a good week, I was getting the migraine attacks everyday in the end and it left my arm completely dead. It's left me with some muscle wasting and weakness in my arm, seeing a physio this week. I have feeling and strength back in my arm, but I was wondering how long it takes other peoples arm/leg etc to come back to? Also when it does my arm can be very painful and go into cramp. My leg has also started to get pins and needles during an attack and will turn in sometimes when I try to walk.

My GP has started me on Amitriptyline, but the tablets are making me feel awful. I get the impression hemiplegic migraines are very rare and health professionals are always slightly confused over the condition.

I've been looking at different drugs used for the migraines and came across topomax, which is also used for epilepsy. I'm seeing my neuro at the end of August and feel like asking to try topomax for both the migraines and seizures. I'm on Keppra for the epilepsy and would prefer to be on only one drug if it will work for both conditions. Would it be wrong of me to ask to try the drug (I live in the UK and wonder if topomax is an expensive drug that the NHS only use as a last try).

Any advice on the migraines and your own experience would be greatly appreciated.

Thanks

Elyza

Hey,

I can relate I have just been diagoised as well. I have the stroke like episodes multiple times a day. My doctor told me yesterday he can't help me that I need to get another doctor. That is easier said than done. I am on a beta blocker at this time I have increased my meds on my on in the past 5 days and today is a good day so far. I just have the heavy feeling in my head no episodes. I am now having both sides of my body go weak. I would like to hear from anyone with any comments on this. I have not been able to work in a month I have been in the hospital with IV's to get them under control and for testing.

I have found that doctors are not that familiar with this problem nor do they want to learn more.

Any help would be appreciated.

Thanks