"I Don't Even Know What that Is" (Migralepsy)

"What the mind can conceive, the mind can achieve." - W. Clement Stone

Imagine, sitting in the ER as NYE rings in. An attractive male nurse softly enters your room to administer a plethora of medications, ordered by the on-call MD, to treat a raging migraine. You disclose, to said nurse, that you had a seizure that accompanied the migraine hours ago, and that you have a long history of migraines (but not so long a history of the seizures and migraines in their simultaneity). You state that you're being treated for a possible diagnosis of migralepsy.The nurse, in an understated Southern accent, softly admits he has "never heard of it" while shaking his head and chuckling out of awkward bafflement. You still think the nurse is sweet, and you still joke around with him, but you start to resent and insult him in your angry, migrained head. A nurse that has never heard of what I'm being treated for - the irony in the epigraph should not be lost on the reader. 

That's what it seems to be, kiddos. I can't say definitively, one way or another, if I do in fact have migralepsy - mostly because of the stalling nature of medicine that is a hallmark of treatment. Like the bureaucracy we've come to love within our government systems, healthcare itself runs remarkably slowly, with the very nature of progress beaming like some sparkly jewel far off in the horizon. Every day you slouch towards Bethlehem, but wind up on your late grandfather-in-law's recliner, dreaming of that exquisite moment of "knowing."

But, if we just pretend as though what my auspiciously flighty doctor meant to say, when asked the question "what are we looking at here" is the answer of "Migralepsy" (and not some half-assed suggestion that the seizures and migraines are linked), then let's explore this even less understood  and recognized condition further, since it appears as though the only way patients become informed is by pouring their own time and energy into the process.

Let's take a few steps, and many years back - all the way back to 1990. Save yourself the math...I was three years old. That's when I had my first migraine. True story: this is the youngest age that a patient has reported a migraine to my neurologist. I remember very little about this particular migraine, and had absolutely no understanding as to what was happening. I just remember wailing in agony, contemplating death (for what was probably the first time, as I was literally a toddler), and throwing up with voracious effort until I finally fell asleep. This was the beginning of a childhood, adolescence, and adulthood packed to the gills with migraines. 

Of course, like any chronic illness (well, maybe not ANY, but at least most) there are moments of reprieve. These moments seem like bliss, but are actually a carefully disguised form of hell. They would happen annually, and last a series of months, and remind me what it was like to live a normal, pain-free life. And then, one random day, it starts up again. I remember chamomile tea packets on my eyes, ice packs of all shapes and sizes on my wrist, failed attempts at Advil and Naproxen, an even more epically failed attempt at Imitrex (the nose spray, which burned my sinuses AND the kind that dissolves on your tongue, which made me immediately vomit), the MRI's, the Migrelief, and the diet free of additives of all varieties. None of these worked to prevent the migraines, but the ice packs between my wrists and the chamomile tea packets on my eyes worked to alleviate the fury of the migraine.

And then came the miracle drug - Excedrin migraine. Absolutely nothing worked like Excedrin (except perhaps a beheading). I took it almost daily - twice daily if we consider the partner miracle drug- Excedrin PM. I could take either one of the two (although regular Excedrin had a slightly higher success rate) and be migraine free in about 1/2 hour. While timing is everything, and no amount of Excedrin would stop a migraine in it's full form, I found something that offered relief. I finally had a preventative solution. And that solution sustained me for years.

Flash forward to November of this year, to my first seizure induced migraine. If you've read earlier posts, you know that I struggled for most of my childhood with both sensory processing disorder (and was absolutely terrified of loud noises), and had occasional seizures (that became more frequent as I hit my twenties). I would say, since I turned the big 2-0, I've had a seizure each year (give or take). But in November, all of that changed. My first seizure brought with it weekly, then bi-weekly, then nearly daily seizure-migraine combinations that the mighty power of Excedrin couldn't touch.

I've spent more time in a dark room than Batman.

So now, here we are, facing down Migralepsy. If you look at the word, you can essentially assume what it means - it combines epilepsy (which is the presence of more than one type of seizure in a measurable period of time) with the presence of migraines that are connected to the seizure activity. 

According to headacheandmigrainenews (the most reliable website I can find, notwithstanding wikipedia), Migralepsy is when a "seizure occurs during or after migraine attack.  This refers specifically to migraine with aura.  What seems to happen is that the migraine attack begins with a visual aura.  Then the seizure follows, either along with the headache or even afterwards."

But an important point this article makes (find it in the Migralepsy Resource page), one that I find dubious and frustrating, is that the overlap between migraine and epilepsy symptoms creates a confusing network of possibilities, including a barrage of other conditions with confusing names like;
"hemicrania epileptica" (the F...?). I certainly experience auras, which I may have mislabelled as simple photosensitivity, and have a nearly continuous headache, but I  worry that the research is so sparse regarding the condition that the diagnosis seems unnecessary. What's the point of being diagnosed, even tentatively, with something so rare, that so few people understand and can successfully treat? 

I know that there are other's out there like me, slogging our way through social media to try to find the resources unavailable in other places online and in Libraries. I will continue in my journey to find answers, and as I do, I will continue to create resource pages of relevant, and credible articles (etc.) that I find. I hope these will be of use to others. Moreover, I will continue to share my blog among the migraine and epilepsy support communities, to try and build a network that can profit from the work I'm doing and the information I'm gathering.

But reader, we are on the cusp of something here - something new, scary, and that needs to be better understood. I am asking, no, IMPLORING, for you to help get this blog and the resources it provides "out there," especially if you know someone that needs it. Together, we can make changes to help people that typically suffer in silence, and help the caregivers and physicians to increase the quality of life, and even find a cure. 

All of my thanks, and all of my love. 

Here's a Bit of the Funnies for my Fellow Migraneurs