CHs: Here’s what I know

As time goes on, I learn more about the cluster headaches that hit me from time to time. They’re different for each person, obviously, but here’s what I know this time around, from my experiences and from my ongoing Googling research — and I must say, the online resources available have been steadily improving.

The word “headache” in the name is a misnomer. They’re not related to conventional headaches, which is why no conventional painkiller medicine works on them.

The UK National Health Service has a very informative page which I didn’t find the last time I went looking.

Cluster headaches … [are] much more painful than migraines or any other type of headache.

They’re called cluster headaches because sufferers usually get one to three of these attacks every day, for several weeks or months, before they subside. A pain-free period will follow, which sometimes lasts months or years, before the headache attacks start again.

Because of the intensity of the pain, some people will pace the room, rock, or bang their head against the wall out of frustration, restlessness and despair.

Bourke Street fog, looking east towards Parliament
Bourke Street in the fog, looking east towards Parliament

The pattern

I get them generally at the change of seasons. Mine started about 3 weeks ago, just as the coldest part of the winter seemed to pass and the days started getting longer.

From past experience, alcohol can help bring cluster headaches on, so I steer clear of booze when they’re around.

I get them mostly in the mornings, 2 or 3 per day. For me this time around it’s been mostly on Sunday and Monday mornings, which is a bit strange. Some of mine have been early in the morning, waking me up.

I can feel them coming about 5-10 minutes before it really hits. They’re at full strength generally for about 15 minutes.

My CHs are always on the left side of my head. Some, such as today (so far), are relatively mild. Some, such as over the weekend, are incredibly intense and painful (and yet perhaps only halfway up the scale compared to what some people suffer in length and intensity).

The intensity of the pain for the worst of the ones I get actually makes me wonder how I’ll handle it as I get older.

Abortive treatments

I used to think that applying pressure to my head helped, but I’m not so sure now.

Cold air does seem to help, perhaps reflecting that some people use oxygen treatment for them. On Sunday morning, possibly influenced by the description of pacing that some people do, I quickly got dressed and paced the back yard in the cold. It did help. Nothing makes the pain actually go away, but it does help reduce it.

Blowing my nose also helps. Some people get a runny nose when it happens — this includes me.

Most documentation says caffeine doesn’t help (nor hinder) fighting CHs. Perhaps the use of an ice cold Coke helping (my so-called medicinal Coke) is my imagination. Or maybe it’s really the cold in the drink plus the sugar? That said, a cup of tea helps a bit too, so perhaps caffeine is making a difference. Given the CH will generally start to fade within about 15 minutes anyway, it’s really hard to tell.

Apparently sumatriptan/Imigran can be injected or applied via a nasal spray, and can help stop an attack, but takes about 10 minutes to work — mine are usually gone within 15 anyway, but given I often have 5-10 minutes warning that one is coming, that may be worth discussing next time I see my GP.

Preventative medication and research

Verapamil is a common treatment to try and prevent them. That’s what my GP put me on. It’s a little hard to know if it really works. It must be powerful stuff — sometimes my head feels really funny after taking one. It also affects the heart, and unfortunately the higher doses needed to really influence cluster headaches are likely to be dangerous without careful supervision.

They still don’t seem to know what causes cluster headaches. Hmm: this claim is interesting:

“Cluster headache is widely regarded as the most severe pain a human can experience ? that’s not hyperbole. It has a population prevalence that’s approximately the same as multiple sclerosis.”

Over the past decade, [Professor Robert] Shapiro said, NIH [US National Institutes of Health] has directed $1.872 billion to multiple sclerosis research, which he said is warranted. By contrast, less than $2 million has gone to cluster headaches over the last 25 years. “It’s completely invisible,” he said.

Anybody care to start up a Cluster Headache Readathon?

To close, here’s a silver lining amongst the cloud of this medical doom and gloom:

The pain during a bad cluster headache is so intense that it’s a relief — almost a natural high, a feeling of elation — when it stops.

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!