Controlling Hemiplegic Migraines

[pabell70]

I am a 36 yr old female and was diagnosed sporatic hemiplegic migraines in 2002. Before that, my neurologist thought I was just having TIAs.  I was diagnosed as a child as having gran mal and partial complex seizures but was later told by a neurologist that this is how hemiplegic migraines starts in childhood and usually is misdiagnosed as Epilepsy.  In 2002, according to my doctor, I had a double hemiplegic migraine(total body paralysis) which left me with no feeling on the left side of my body permanently and brain damage.  I had to relearn how to walk, talk, eat, read, etc.  I spent 3 weeks in the hospital and 3 months inhouse rehab and 1 year of outpatient rehab.  Today, I still live with no sensation on my left side except for the occasional "pins and needles" sensation in my left hand.  My doctor believes that I am having a seizure when this happens.  Is this true?  My migraines and hemiplegic migraines are not being controlled very well.  I avoid triptans (migraine meds)and foods containing tyramine and currently on Depakote and Primodone and yet I still get migraines and hemiplegic migraines.  The only thing my doctor gives me to control the pain of the migraine is Stadol.  The Stadol works at the onset the migraine but if I wait too long, it is not effective.  My doctors have tried seizure medications as preventative and Ultracet, Toradol, Medrol pack (works every time but doctor does not like to prescribe too often) and Fiorcet to try to help end the pain.  I am allergic to Topamax and Dilantin so these were not an option to use as maintenance meds.  I currently have a severe migraine (for several days now) that will not quit.  My doctor just wants me to increase my Depakote.  At one time I was taking 7 500mg of Depakote a day which cause severe stomach problems and no help in preventing migraines.  I am now on 2 500mg of Depakote and still have the stomach problem and no control over the migraines.
Do you have any advise as to how I can control the migraines with maintenance meds and a safer pain reliever than Stadol?  I am also moving across country and will have to find another Neurolgist.  Is there any advise as to how I can find a Neurologist that is knowledgeable in Hemiplegic migraines (I have found out the hard way that a lot of Neurologist are not familiar with hemiplegic migraines-i.e. one "Neurologist" was prescribing a triptan medication that was inducing my hemiplegic migraines)?

[nola606]

I too have hemiplegic migraines and I take a rare drug called Sibelium or Flunarazine.  It has made the world of difference to me and I would thoroughly recommend it.  It makes you put on weight and can make you depressed but is an amazingly effective drug for hemiplegic migraine.  Worth a try.

[Heiferly]

I have total body paralysis with my migraines as well.  I'm being treated at Ohio State University Medical Center and the neurologists here are excellent.  Are you anywhere near a nationally ranked teaching university hospital?  Usually the best docs and cutting edge medicine can be found at the teaching hospitals; also, multiple neurologists with sub-specialties can collaborate to help on your case.