familial hemiplegic migraine

[AirForceD360]

I am a healthy 34yr old male no major medical issues.  I had a recent situation were I was under a lot of stress.  In late Jun I was in a car accident. Then about late Aug I had a something wierd happen to me.  As i was lying down watching tv and half my body started getting a tingling sensation. It lasted for a few minutes then slight speech slur.  I thought it was a stroke.  I called a paramedic who came out to my house and said i had low pressure but other than that everything was normal.  Went to ER after to get checked out and nothing was wrong just sat there with i.v and darkeness since I felt better when i was sleep.  About a week later it happened again.  This time a little worse and they transported me to the hospital and ran test, kept me over night.  I had a CT scan and blood drawn, I also was vomiting throughout the process.  This all stopped around midnight after which i went to sleep and woke up ok.  All test and blood work came back neg.  During these events a headache did occur but not very painful.  I went to a Neurologist and was told i have familial hemiplegic migraines in which case they did a dna test which came back neg/inconclusive.  I did not have the trait that causes this but my gene was not normal.  My mother has acid reflex but nothing more.  The doctor put me on topamax but i feel as though this does nothing for me.  They are guessing familial hemiplegic migraine, I am wondering if it really is this or something else.  I have been event free since this has happened.

[Dr Santos]

Hi,
How are you? It is good that the tests done were normal. Researchers have indeed identified three genes linked with hemiplegic migraine. However, if you did not test positive, this can be due to  sporadic hemiplegic migraine. Both preventive and abortive medications may also help provide relief. If the prescribed medication is not working, inform your doctor for proper management. Take care and do keep us posted.

[twitchychick]

After an "attack" and you fall asleep, do you feel better?  How do you look physically when you are having an attack? Pale, dark circles under your eyes?  Have you ever had an MRA?

I ask because my son has migraines and when his begin he is very pale with dark circles.  Also, after he falls asleep, when he wakes up, it's like it didn't even happen.  Drs explained to me that it's like a 'reset' button has been pressed.  When he sleeps, the brain can re-boot and return to normal function.

I believe the MRA is similar to the MRI but looks at the arteries of the brain.

Also, did your dr mention the possibility of a seizure disorder?  Have you ever tried Neurontin for the pain?  It seems to help some people if the pain is possibly from a nerve misfiring.  Topamax worked great for me but had many side effects.  Are you currently on the max dose?  You may want to try upping it if it is not at the max for you or adding nortriptyline.  It's an old medicine but has been shown to be effective for migraine prevention in some people.

Please keep me posted!