Ouch

Recently, I’ve been diagnosed with cluster headaches. I could tell you more about them, but I’d rather just point you at the Wikipedia article and say “that’s pretty much spot on.”

This picture, from Wikipedia, covers it pretty nicely, actually.

So that’s pretty shit.

It’s been several months now – long enough that, to begin with, I suspected that these new, severe headaches were something to do with the concussion I suffered while moving house. I’m still not convinced that they’re not: it just seems a little too much like a coincidence that that’d happen just weeks before they started.

Since then, they’ve come and gone. Attacks will come on every couple of days – usually at about 3am, but sometimes in the afternoon – for about two weeks, and then will be gone for several weeks. And then they come back again.

The pain is… incredible. I can’t even begin to describe it nor compare it to anything else. Painkillers don’t seem to touch it at all. The only success I’ve had with painkillers has been when I’ve taken so much codeine that I’ve had an “opium high”. The pain doesn’t go away, but at least then I don’t care so much. Then within a couple of (long, long) hours, it’s gone, leaving me drained and exhausted. Sometimes it leaves me with a headache – just a “normal” one, the kind that you can wince and ignore, or treat with asprin – for about a day afterwards, but usually it just disappears as quickly as it came on.

Those things on the left that are shaped like space rockets? They go up my fucking nose, would you believe it. They're supposed to be for migraines, and they seem to work for me - at best - about one time in three.

I’ve been working my way through a variety of medications, with limited success. Basically, the doctors are guessing. In sheer desperation, I’ve even been caught using mild-to-moderately ridiculous alternative treatment, like chiropractic. It didn’t work – it just left me with a new variety of back pain: temporary, I hope – but I think  it goes some way to expressing how crippling it is when I of all people will go to a “spine wizard”. Needless to say, I’m still a long way from desparate enough to try the really stupid alternative medicines: it’s still got to at least sound like it might work before you’ll get me to try it – after all, it’s not like any of these therapies are without risks.

There’s next to no build-up, and no warning, and no relief: they just start and go away their own accord. That’s a terrifying feeling of powerlessness. It’s genuinely scary, going to bed during one of their episodic periods, and not knowing if you’re going to wake up in agony a few hours later.

We’re getting somewhere, though, hopefully. I’ve been assigned to a specialist (to whom I’m sure I’ll be as much a research subject as a patient: I suppose it’s pretty ideal – if you have a rare, barely-understood disease and you’re at the point of being willing to try anything, you probably make a great research subject), and in the meantime there are plenty more medications left to “try”. And I’ve been reading some of the thoughts of other sufferers via an online support group, some of whom have shared some of their relief/coping strategies (some of which I’ve tried already; others of which I’ll try in the future). So there’s still plenty of opportunity for a “fix”.

I didn’t blog about this before now because I was hoping to get to a point where I’d be looking back on it and laughing, first. I quite liked the idea of putting up a blog post – perhaps with some photos of my MRI scans, or something – and saying “Hey; look what happened to me! It’s medication-controlled, now, and the only side-effect is that I can shoot frickin’ laser beams out of my eyes! Muhahahaha!” But I guess that point might still be a way away, and I didn’t want to keep you all in the dark.

Anyway: there’s that, then. If you were hoping for a clean, concise blog post with some closure at the end, you’ll be left hanging. But hey: if I have to suffer, I might as well spread a little bit of suffering to you, too.

5 replies to Ouch

  1. You have my sympathies. I suffered quite badly with migraines for a long time, espicially in the final year of my degree when on a couple of instances I couldn’t leave my bed or do *anything* for several days at a time. Thankfully I’ve not had any in some time. I got some pretty good pills and found some alternative things that helped a lot (for example 4head cream is oddly good for me). Thankfully I’ve not had one in a year or so, but I do get them I can literally do nothing for several days, even lying down is difficult as it makes my head spin.

    I’ve heard of cluster headaches, and that they are notoriously difficult to diagnose, so at least if nothing else, you have an answer now.

    • Similarly, an attack leaves me in difficulty even of lying down. The best antidote I’ve found is burying my head in a sinkful of ice, which provides a little relief – and even a little is very welcome, of course.

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