Cluster headaches – back for spring

Oh joy. My cluster headaches are back for spring. In fact they returned on the 1st of September, which Australians consider to be the first day of spring. Boom, just like that.

(Previous posts. Doesn’t everybody use blog posts to track their personal health history? I know I do.)

To recap

Cluster headaches are, as Wikipedia describes them: excruciating unilateral headaches of extreme intensity.

“Cluster headache is probably the worst pain that humans experience.

Women with cluster headache will tell you that an attack is worse than giving birth. So you can imagine that these people give birth without anesthetic once or twice a day, for six, eight, or ten weeks at a time, and then have a break. It’s just awful.” — Dr Peter Goadsby

They occur in clusters during active periods (hence the name), and many people get them seasonally, though others have them permanently.

They affect about 0.1% of the population. They cause a sharp pain across one side of the head, from around the temple, down to the jaw, typically lasting between 15 minutes and 3 hours.

This is important: no conventional painkillers are effective against them. Not paracetomol, not aspirin, not Nurofen. Nothing works. It is not the same as migraine.

Mine

The more I read, the more it’s clear that I don’t get them as badly as some people (thank goodness).

But they’re still bloody painful. On this pain scale (which is not specific to Cluster headaches) mine probably peak at about a 4 or 5 out of 10. (“5 – Very Distressing – Strong, deep, piercing pain, such as a sprained ankle when you stand on it wrong, or mild back pain.”)

I get them seasonally, usually for a couple of weeks, and typically 3-4 times per day, starting around 6am (and yes, they are painful enough to wake me up) until around lunchtime or early afternoon. Mine last about 20-30 minutes.

I thought that I’d first suffered from these around 2007, but in fact when I saw the doctor on Tuesday, he said he had notes indicating that I’d had them (undiagnosed) going back to 2002 — though my recollection is they didn’t get really bad until 2006 or 07.

The doctor seems quite interested in it — I gather they’re rare enough for a local GP that he doesn’t see many cases.

The pain is intense, from the temple and behind the eyeball down to my mouth.

At its worst, all I can do is try and apply some pressure with my hand, or push my head into the pillow if still in bed, which may or may not help. Really at best the force of the pressure merely distracts me from the pain.

It’s said that oxygen helps: many people respond to inhalation of 100% oxygen (12-15 litres per minute in a non-re-breathing mask). While I haven’t tried this (I suppose it could be organised at home, with some effort/cost) it does seem to be that exposure to a chill wind, eg stepping outside in the morning air, does helps soothe the pain.

Caffeine seems to help as well — tea or Coke. Perhaps the latter helps more than the former.

The pain is so intense that when it just fades away and you’re back to normal, for a while there’s a huge feeling of relief that it’s gone… until it returns.

And the medication? In previous years I wrote that I thought the Veracaps SR the doctor prescribed helped. But I’ve got to say that now I’m not totally convinced it does. Perhaps it’s not really been doing anything, and the headaches have naturally faded after a week or two. Certainly this time around, I’ve been taking it since day one, and while it’s possible it’s taken the edge off it, so far they’re still hitting me every morning. (Though this morning’s first was later than previous days’, and not quite as strong.)

Maybe it just needs a few days to kick in. Hopefully in the next week or so mine will disappear again until next autumn.

Support

Every time they come around again, I end up doing a little more research.

This time around I’ve discovered that there is an Organisation for the Understanding of Cluster Headaches (“OUCH”). The US arm had a conference in Nashville in July — they have a bunch of videos with Peter Goadsby which I intend on watching soon.

A recent Triple J Hack story on chronic pain, which opens with a guy from Darwin describing his cluster headaches. Well worth a listen.

I’ve just discovered a Facebook group, which has some posts from fellow-sufferers which, I can tell you, are inspiring to read. Because people are sympathetic, but I’m not totally sure anybody can really fully understand it unless they’ve experienced repeating bouts of extreme pain themselves.

And there’s now an Australian support site as well.

I might lurk a bit in some of the forums. The more I read, the more it’s clear to me that while mine are very painful, I’m not getting them anywhere near as badly as some other people. But it’s nice that know that other people understand what it’s like.

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10 thoughts on “Cluster headaches – back for spring

  1. Hmm… I probably shouldn’t be recommending this, and I’m sure you’ve crossed it in your own research, but there seems to be a lot of anecdotal evidence that low doeses of psilocybin can do wonders, often causing symptoms to disappear for weeks or months at a time after a single dose.

    A quick scan of journal articles has unfortunately only turned up two results. One in Spanish that I can’t read and the another that simply interviewed sufferers that had self medicated of which I can only find the abstract. The abstract stated that the topic warranted further research.

    Unfortunately once any drug gets classified as a recreational drug, medical investigation seems to almost stop.

  2. Following up on Andrew’s hayfever comment, it seems prudent to see an allergist.

    Here in the southeastern USA, trees dominate spring allergy season, with grass in the Summer and weeds (especially ragweed) in the Fall. I’m allergic to those and more.

    good luck!

  3. I developed a mild cluster headache daily during the time I was suffering a thyroid deficiency. After the deficiency was corrected the headache persisted, but I am able to block it with a daily dose of Vitamin B. Vitamins B2, B6 and B12 are the ones most commonly mentioned, e.g. here:

    http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=medsarchive2003;action=display;num=1070238461

    It seems to work for me, and Vitamin B is pretty cheap and otherwise fairly harmless, so it might be worth a trial. It may also be worth getting a blood test for thyroid conditions, as they tend to crop up in early middle age.

  4. You poor sod – I get the them too (as well as migraines which are the lingering legacy of a brain tumour diagnosed in ’95 which is now behaving itself). Caffeine certainly does help – a strong coffee (for clusters or migraines) can often ‘unfold the face’ for an hour or two which gives you time to get home, climb into your bed in the dark and die for a while.

  5. Hi. The only thing that works for me is the over-the-counter (although you have to ask/beg for it) nurofen with codine. 2 takes it away completely for a good while, but pretty hard to get much work done on them. I guess they act as a pain killer rather than something that actually stops the headaches occuring – but any pain relief is most welcome

  6. Also, if you get a throbbing jaw while feeling the headaches, maybe look into whether it is TMD/TMJ, which seems to have similar symptoms

  7. @schmoggs, thanks, will look into it. But it doesn’t throb at all, it’s just constant pain when it’s around (which is an indicator of CH, rather than something else).

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