Tag Archives: Migraine Variant Syndrome

Better News

The weather is still terrible and the isobars continue to fall… and having checked the weather app, it appears this is expected to continue all the way into July.

Quite typical, really, considering the news I’ve been given today – you know, after the four days of hot weather and nice days we had…

I’m finally getting my chair on Friday (it’s Monday today) – Horrah! The nice lady who had been dealing with this even took the time to say how much she actually liked it (I put some interesting design choices on it) and that all the colours etc went really well and it looked great. So I’m hopeul I shall appreciate it for its practical and aesthetic reasons.

There is a long way to go still to stabilisation, but this is definitely a trophy chievement award along the way.

Three more days until Parole… 😋😎






10-11 June 2017

Having spent most of this week under extreme distress because of the weather and distinct lack of isobars, yesterday I ended up in extreme meltdowns and severe hemiplegic paralysis. This is, of course, thanks to the terrible weather inducing a horrible migraine… and that migraine travelling down into my extremities instead of up into my head.

Don’t get me wrong – no one in their right (or even wrong) minds want or prefer that horrific and excruciating migraine headache. Ever. However, that does not mean I have to be pleased with the Hemiplegic Migraine that then takes its place.

The problem also is that – despite knowing I have been experiencing hemiplegia instead of “normal” migraines since I was at least 17 – I still readily forget they still have to be treated the same. Not with medication: I mean in how they’re dealt with.

Today, because of this, I ended up blacking out all day. The closest I can describe it is like being seriously generous with Xanax, or Valium, and you are entirely unable to keep your eyes open. You might come round for a few seconds, but then off you go again. Rather like with General Anaesthetic, after the surgery. It took my mother to point out this was exactly my behaviour with “normal” migraines – and given the long-term stress, the extremely low isobars, the fact I’m under wheelchair-inflicted house arrest, it was obvious this was what was happening again. The severe hemiplegia I suffered yesterday was a testament more than anything to that.

It had now made me realise just how seriously I have to treat this – just like I used to treat my migraines when I was young.

I have suffered from them since I was 8 years old. They became more severe from when I was 10. They really hit their stride between about 12 and 15 – and the fact that was the most stressful time of my life (until now) shows testament as to how much stress is a great trigger for them. The Triptans didn’t turn up (well, in north Wales at least) until I was 17, and they were a godsend… but only for “normal” migraines. In Hemiplegic Migraine they can make them worse, or put you at risk of a stroke. So they’re not really that much help.

What has always been some help is mentality…. Kindness and understanding, allowing yourself the time to go through it and recover without expecting anything more than you can give. The next time this happens, I won’t be so scared. I’m a veteran – even Master – migraine-enduring warrior, so I don’t even have to learn anything new. Just go back to what I know.

It saves an awful lot of time and brain-space, I can tell you.

Hemiplegic Migraine


Hemiplegic migraine

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.

No Idea About LifeIt 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.

20120617-233040.jpgI 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*].


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