A rare condition involving temporary weakness on one side of the body
So… Fun, right? Except mine’s not temporary. It’s pretty much very permeant… and to complicate factors there’s also the Fibromyalgia. Even more fun.
It’s good to know it’s yet another uncommon condition… life would be too boring if it was something dull and mundane that everybody else has got. I’m collecting them… I wonder if somehow the universe thinks these things are my very own Pokémon…? I’m doing quite well so far, and the only mundane and boring thing I have is asthma. On the other hand, Fibro as Asperger’s is getting more common now too…
Anyway, Hemiplegic Migraine… My neurologist wrote it down as Migraine Variant Syndrome, which might be the old name for it – or rather a collection of non-headache migraines, perhaps used before genetic analysis and fMRIs were available or common. There’s not a lot out there on that last name, but Hemiplegic is the one they’re going for now, which makes more sense.
It turns out I’ve had it all along. I don’t just mean the genetics, which I was obviously born with, I mean the actual Hemiplegic condition.
From the age of 17 I’ve been suffering constant on-and-off paralysis down my right side, which – since the doctors dismissed it (I was classed as hysterical , attention-seeking and hypochondriac since I was about 11 years old by them… Lovely…) – so did I. I just waited until it went away and got on with things again. You know, until the whole pneumonia-fibro-insane-pain thing turned up…
Looking back, so many things now makes sense – things that were wrong, strange sensations and blackouts (I used to “blackout” with migraine headaches – they were so awful my brain just literally shut off and shut down), changes in migraine, until they “vanished”… Well, I thought they’d vanished anyway. Turns out it had just gone bananas instead.
I suffered “normal” migraines since I was little, as in really little. I remember my first massive one in my grandparents’ house (ironically the one I live in now my mother inherited… Again, weird!) when I was maybe 5 or 6. They were the most god-awful, evil, killing “headaches” (it’s not just a bloody headache!”) that had Thor’s own hammer slamming itself every nanosecond inside my brain, with an impaling thing clearly attached to it. These could be triggered by almost anything – stress, cheese, chocolate, eggs, certain additives or colour E numbers, MSG… and that’s the short list. I had a vastly restricted diet as a child because of it, never had chocolate after a certain age after that was added to the list, and when MSG was found to be a culprit of a mass of cluster migraines, my general food choices went out the window but at least the migraines went away.
I was a child and teenager who lived quite a lot of her life in a dark room with the blackout curtains up, trying not to cry because that just makes it worse. I had to suffer through the agonising pain by lying down in my dark, quiet room, playing my Poirot or Patricia Cornwell tapes (this was the ’90s!) very quietly and effectively blacking out for many hours per day, for many days on end, averaging 3-5 days. Per migraine. And there was a lot of them. I didn’t go to school much already, because of the problems I was having with everything else in my life, so it’s hard to calculate how difficult the migraine alone made to my school attendance, but I did miss quite a lot of days and weeks full-stop because of it. It was just batten down the hatches until it went away. It’s not something a child should have to get used to, but I did. It was another complication of a life already full of them.
Eventually, I ended up with homeopathic treatment when I was a teenager, which was utterly disgusting but worked better than other things. Chocolate and MSG sensitivity was eased greatly, and I could eat a small amount of eggs per week (three, specifically). Remember – this was also in the dark ages before they even knew what migraines were. I was about 17 when I got the latest newsletter from a migraine charity I had signed up to stating they not only knew what migraines were, they had pills to fix it. It was a genuine miracle when I took my first dose of Naramig and after a three hour nap I was right as rain and quite bouncy. It was utterly, and literally, unbelievable.
With time, the headaches dissipated, and I had the rare Aura-only migraines instead as an adult. However, it now turns out they were always there, always around, and never left. They just… went left at the roundabout and headed somewhere very bad. They turned hemiplegic and I ended up with this sporadic paralysis and/or weakness, until it became permeant. Along with Fibromyalgia it obviously just went insane and then some.
So… yeh. Hemiplegic Migraine with Fibromyalgia. Did I mention… fun…? [*insert sarcasm radar screeching here*].