Cluster headaches are back

The term blog is a shortening of web log… well, this blog post is a log for primarily my own purposes, though it may be of interest to others.

Seems the cluster headaches are back this morning.

They often return at the change of season, but I haven’t had them since about two years ago.

(That blog post went into some detail about them — and this point is particularly worth noting: no conventional painkillers are effective against them. Not paracetomol, not aspirin, not Nurofen. Nothing works. It is not the same as migraine.)

So, this time around, so far:

5:40am, for about fifteen minutes. Started to fade when I went outside for some fresh air. Thankfully at this time of year it’s light, not too cold outside.

7:30am, about the same length of time. Again went outside, which seemed to help.

9:10am, I thought another was coming on, but it only gave the warning signs (pain in starting in the nose and moving to the left hand side of my forehead), without the main event, the searing pain through the left side of my head, of the earlier ones.

This time around they seem to go for about 10-15 minutes — in the past it appears mine have gone for longer. It’s always a little hard to tell what is helping, or if it’s simply disappearing by itself. That said, oxygen is recognised by many as providing relief.

I’ve found in the past that consumption of caffeine and sugar (that is, a Coke) can also help. My GP long-ago prescribed medicine, and I’ve never really determined if it helps or not, but on the off-chance it does, I’ll be getting some more.

While I’m not afflicted by them as badly as other sufferers, the pain is intense, and When it fades, there’s a feeling of immense relief.

I’m hoping they don’t hang around for long.

(Past posts)

Update Sunday 1/12/2013 — Thankfully, no further recurrences… quite unlike previous episodes, but hopefully it was just the two yesterday and that’ll be it for now.

Update Tuesday 3/12/2013 — …however, I have had another, more conventional headache, since Sunday night. Not clear if it’s related. It’s not as strong, but it’s almost constant.

Update Saturday 7/12/2013 — One again this morning, 7:15-7:30. Helped by fresh air outside. Could it be that after a few days of winter-like weather, the turning back to spring/summer today helped spark this one?

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.

I’m not a drinker

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.

Cluster headaches are back for autumn

Cluster headacheOn 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.”

Dr. Peter Goadsby

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!

Brief things

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.