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.)
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.
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.
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.
I’ve never been a drinker.
Oh sure, there were the social pressures in my uni days. But it’s a habit I just never picked up.
My parents weren’t drinkers. My partner isn’t a drinker. It’s just not my thing.
I’m not a teetotaller though. Occasionally (perhaps a few times a year) I’ll indulge in a beer or a glass of wine, but (particularly since the discovery that alcohol can sometimes help trigger cluster headaches), most of the time I’ll decline and stick to water.
So I find it a little puzzling that some people drink to excess. I can understand the enjoyable, social drink if that’s the kind of thing you like, but binge drinking, to the point of being sick? Why would you?
I suppose everybody’s different.
On Friday night at my sister’s place, we were were swapping war stories of head pains. She had a read of the Wikipedia article on cluster headaches and, noting the description, the illustration by J.D.Fletcher, and nickname “suicide headache”, she had to admit they piss all over her puny migraines.
“Cluster headache is probably the worst pain that humans experience. I know that’s quite a strong remark to make, but if you ask a cluster headache patient if they’ve had a worse experience, they’ll universally say they haven’t. 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.”
My cluster headaches are back for autumn — only mildly, I must emphasise. It took until the third day to realise that the headache I had wasn’t going away with Aspirin or Paracetamol. Sure enough popping one of the previously medicated pills and slurping down lots of caffeine in strongly brewed tea and Coke in the afternoon and evening helped sooth the pain. That was Thursday. The catch was I found myself wide-awake at 2am on Friday morning…
While I’ve had some pretty bad ones in the past (particularly before they were properly diagnosed and the medication prescribed), they’re nowhere near as bad as they once were, and nowhere near as bad as some others have them. I’m just glad I know the medication (Veracaps) that helps me.
And I have nothing but sympathy for those who manage with them, without help.
PS. Forgot the worst bit about re-reading the article on cluster headaches: Ingestion of alcohol or chocolate is recognized as a common trigger of cluster headaches when a person is in cycle or susceptible. I don’t really care about alcohol, but chocolate — oh no!
Computer: I like it when computers reach the point at which a good upgrade is cheap, quick and cheerful. In this case on my two-year-old box, tripling the RAM cost me $45, tripling the hard disk space cost $130. And as the new disk is faster than the old one, I’ll take the opportunity to re-install everything onto it, and clear out its sinuses in the process. … Would have helped if I’d bought the correct hard disk cable, of course.
Cluster headaches: They came back for autumn, but the medication has pretty much got them under control.
Solar hot water: It’s been a year since I got solar hot water installed. From a user point of view, there’s absolutely no difference. By the time it reaches you at the tap, it’s just hot water. I’d love to tell you it made a clear and noticeable difference to the gas bills, but looking through them, I’m not seeing it, in part because water, heating, and cooking is all tied up in there, and also apparently (at least according to some BOM figures I cast my untrained eye over), 2008 was slightly colder than 2007.
The toe: It’s healing. Most of the swelling has gone, but it’s still a little uncomfortable to walk in shoes.
Star Trek: Booked for Sunday in Gold Class. Looking forward to this.
I’d been meaning to write about this anyway, but one of Richard’s Twitter posts reminded me: If only more medical problems could be solved by simply ingesting more caffeine. The world would be a better place.
When there is a twinge over and above what the medication can handle, as the Wikipedia article notes, caffeine can make a difference.
I don’t normally drink Coke — overall it’s not a very healthy thing to consume — but have found slurping down a can provides of enough of a burst of caffeine to help a lot.
So as my sister commented (when she gave me some unwanted cans), I drink Coke for medicinal reasons.
PS. It appears that Coke Zero contains the same amount of caffeine, but no sugar, which might be a better option when one requires a medicinal caffeine infusion, though in fact a cup of tea appears to be an even better option.
Spring has sprung. The weather’s getting nicer.
My mind has turned to the cluster headaches that I got for the first time at this time last year. I haven’t had any again yet, but there’s something about the light which just hints that they might be on their way. Or maybe it’s just that my memory of them is now so strongly associated with them now.
Given that conventional painkillers (to quote Natalie: Tylenol, paracetamol or ibuprofen) don’t work, I’m going to make sure I’ve got some Veracaps left from last time in case they come back. Or if not I’ll need to make a rapid visit to the doctor.
Yay. My cluster headaches have gone away, for now, even after having gone off the medication. Something to watch out for next spring, as I suspect they’ll re-appear then.
Funny thing is I had suspected the medication would impede my ability to donate blood. I rang the blood bank and they said no, it’s fine, come on in for your appointment. Moments after hanging up, I remembered I wouldn’t be able to go to my appointment anyway because something else important had cropped up at exactly the same time. I pondered ringing back, but decided it would look like I was trying too hard to weasel my way out of it. I’ll just have to give double next time. (Not!)
Boo! My bottle of hair stuff I like from Aveda ran out, and I went to get more. (I wonder if that post from 2004 was really the last time I bought it? Nah, there must have been another one in the meantime.) It’s been discontinued. But curiously, the guy there said it’ll be back “sometime this year”. Odd. He sold me some other stuff, which I bet isn’t as good. Grumble.
Shell emailed pointing out an old entry from 2001, in which I sent an SMS for the first time. Pretty funny stuff, and I wonder what other old posts of mine might highlight the arrival of technologies that we now take for granted.
Hmmm… the first time I mentioned Google was in 2001. I remember using AltaVista a lot in the 90s, but evidently found no reason to write about it. It wasn’t until 2006 that I finally (permanently) got a camera phone — well behind the pack there, though I had dabbled previously. I first got broadband internet in 2000.
So far it’s not a good month for minor ailments. Last week Jeremy had a coughy-coldy thing; this week Isaac’s had it worse, knocking him out of school… thankfully he’s got over it in time to go off to camp this morning.
As for me, I must have eaten something bad, and my over-sensitive stomach (aka “Bowen Belly“) has been at it again overnight. Maybe it was the snags for dinner last night weren’t cooked right through, but if so, how come I was the only one affected? Not pleasant, and today I’m at home hoping to catch up on sleep.
On the bright side, the cluster headaches have almost completely gone thanks to the medication.
This week my head is a little tender however… but that’s to blame on the huge bang on the temple I got from the front door on Saturday. I know I’ve never been an athlete, but sometimes I astound even myself at my low level of coordination.