Hemi…whaat?

Hemiplegic Migraine- what is it?

Hemiplegic Migraine is a sub type of migraine disease and considered the “Grandfather of Migraines”. So you’d think there would be more known about it. There are two types of HM; familial Hemiplegic migraine(fhm) and sporadic Hemiplegic migraine(shm). It’s about as rare as they come, as only 1 in 10,000 people present with it. Lucky us. 

They tell us an attack is like a stroke, epilepsy, spinal meningitis and a LSD trip all coming together causing terror through your whole body. I say it’s simply a trip through Hell. 

Hemiplegic Migraine- symptoms?

There are so many different symptoms that people in the HM world put up with. Personally, my most debilitating factors are; lack of muscle control, intense visual disturbances, intense sensory and motor disturbances, major loss of appetite/nausea/vomiting, and severe head/facial pain. These are just the worst five amongst the tons. I’ve seen people with cases not as bad as mine, fortunately. But also many with cases much much farther along than mine, unfortunately. 

 Hemiplegic Migraine- Brain glitches?

At the end of the day, little is known about the reason for this nasty disease. But we do know it’s a gene mutation involving muscle and nerve cells, calcium channels and energy. It’s said that during an attack the calcium channel doors are “stuck open”, causing an imbalance amongst calcium and other ions. This basically makes the brain freak out and something called Cortical Spreading Depression happens(no, not clinical depression). Aka- cells are first hyper-stimulated and secondly suppressed. So, it has a domino effect. All the cells start going crazy(hyper-stimulated), but then get overly exhausted(suppressed). Eventually this spreads to the trigeminal nerve; causing dilation, tingling and swelling of the areas affected by this nerve. Serotonin levels are thrown off and affect more body processes as well. My extremely low magnesium levels cause me a lot of problems, I try to watch my low iron, and my very low blood pressure is kept an eye on. All in all, when an attack starts take your rescue meds and get to a comfortable setting to wait out the ride, you never know what may hit this time. 

Hemiplegic Migraine- what helps?

Now that you know more about this, it should come as no surprise that there is little known about the proper treatment for HM. We do, however, know to avoid Triptan medications as they greatly increase our, already, high risk of stroke. Ergots are another NO. You have to make your doctors aware of this, because most have no idea what to do after hearing “I have Hemiplegic Migraines”. I used multiple Triptan’s before Diamond. 😬

My med list?

Currently I take four medications and 2 supplements daily. I have four rescue meds, and get weekly infusions in the hospital. 

What works best for me? Shockingly, high doses of Benadryl given via IV make the largest impact. 

Daily 

-Morning: I take a 500mg magnesium supplement, Vitamin B12 supplement, stomach ulcer medication, and nausea suppressing/appetite inducing medication 

-Afternoon: nausea suppressing/appetite inducing medication 

-Evening: nausea suppressing/appetite inducing med, Serotonin medication, & calcium channel blocker 

Rescue meds 

-Triple Shot: three medications used together 1-pain med 2-antiemetic 3-histamine 

-Anti-epileptic medicine 

-Benadryl Intramuscular Injections

-Anti-nausea 

Infusions

-Benadryl 

-Valium 

-Phenergan 

-Magnesium 

-Fluids