The Electric Convulsions in My Head

Last updated: September 2018

My migraines shoved their way into my life when I was 16, having joined forces with heavy, painful periods. I was well versed in migraines because both my mother and grandmother were at war with them before me. My mother pointed an infrared light at hers from her headboard, and waited for the warm red heat to hopefully melt them away. I tried the same tactic. It felt great, but the pain didn’t dissolve.

In time, my doctor prescribed Fiorinal, and then eventually Darvocet, the later of which helped the crushing pain of menstral cramps that were to torture all my life, but only took the edge off my migraines. According to many doctors, I’ve experienced almost every typical variety of migraine in existence — in and on every part of my head and neck. My migraines and my periods had a happy marriage — they always arrived together for as long as my periods lasted. And since my periods were at least 10 days long, so were my migraines. Until my early 20’s, that is. By my late 20’s, the migraines decided to hang around longer — like about 28 days a month.

That’s when I saw a neurologist and had whatever tests they did at that time. I am 69 now. But I was “thoroughly checked out,” and the diagnosis remained the same. Sometimes it was called “chronic migraine”; other times it was branded “cluster migraine”. I was a single mother of 2 with a full-time teaching job. I was teaching, i.e., “performing in front of an audience” every day. No; of course my supervisors didn’t understand. I don’t know how I survived, but being a single Mom and having to endure, and being in therapy must explain how I managed to get through those excruciating years without shoving a gun down my throat.

I knew about migraine triggers, and I knew I had many of them. How could I avoid light? How could I not hear sound? Smells??? Yeah, I already had “mild” asthma. I knew all about that, too.

Listen, just forget about giving up chocolate — are you kidding me???? I mean, give a girl a break, OK? Isn’t having 28 migraines a month giving up enough on living a life worth living? However, I was able to look myself in the mirror and tell myself I could buck up and “decrease chocolate” — a lot, if fact. I mean, I really didn’t eat “a lot” to begin with. (Really — no kidding!) And so it wasn’t that difficult. “A little” isn’t even a trigger anymore now. WHEW!

Giving up caffeine was pure torture. Even though I only drank 2 or 3 cups a day. But giving that up gave me a month of the worse migraines I’d had in a very long time. And now I see why. Coffee is now a very rare treat. And when I do drink any, I can feel the “drug” that caffeine is. OMG, who would ever want any other drug, huh? I mean caffeine is a HIGH! And & a cup is great for some of my migraines, but I drift here.

Fast forward to today. I’d had a huge respite from migraines between my 40’s and menopause. Don’t ask me why because I’ve absolutely no idea. But menopause came and brought a few little gifts slowly — ever so slowly — creeping up on me. It began very slowly. Feverfew and vitamin B2 worked about 50% of the time — I was FOFLOL with delight at those little fixes for those few glimpses of migraines to strike again. Once every 3-6 months and crawling ever so slowly — like the wrinkles — from somewhere down my brainstem until a shotgun exploded in my head with the largest blast I’ve ever known.

As they felled me into bed for months of pure agony, I found a great neurologist and pain management specialist. I began Topomax, slowly increasing it to a fairly high dose. I also take Lamictal for chronic depression, but it’s also an anti-seizure medication. (Yes, I’m closely monitored for Lamictal by my therapist who communicates with my neurologist — I keep everyone in a loop around me, poor dears...) I had to decrease the Topomax recently because of shortness of breath, and unfortunately it isn’t working as well on my migraines, but no severe attacks sending me back to hellish darkness…yet.

However, that’s probably due to having had Botox in January. I’m super impressed — and very grateful for — Botox for migraines. I never would have thought! But even with my insurance, it cost me almost $400, and that’s a tough nut for us to swallow, but I’m hoping we might qualify for help if I need another course of treatment when this one wears off. And I’ve been told to search for coupons online. Which I will do.

But I’d been bed-ridden for 2 months straight, in horrid severe incapacitating pain for 6 months in a row, and ready to crawl down some rat hole in 2012. So, right now I’m a happy camper headache-wise. I’ve got 2 other nasty health conditions dampening my spirit right now, but I’m hoping my migraines can remain on the back burner, and I can read all your stories and learn and empathize and pick up some great hints and ideas here. My hugs and good wishes and big smiles of encouragement to keep fighting the good fight go out to all of you. Sometimes one has a crappy life dealt to one; I say that giving up is not an option because it’s the only life we’ve got. So this is a great place for folks with the same “crap” to try to fight together!

My best, Susan

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