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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.

By Daniel Bowen

Transport blogger / campaigner and spokesperson for the Public Transport Users Association / professional geek.
Bunurong land, Melbourne, Australia.
Opinions on this blog are all mine.

6 replies on “CHs: Here’s what I know”

Fascinating information – just a shame it’s a reality for you. Do sufferers report a family history? Has your conditioned worsened since you moved house or office? I guess you’ve considered all these possibilities.

Daniel – from everything I have read (and from my own experiences….Touch wood) CH tend to get less as you get older. Funnily enough, things like smoking actually help to lessen the impact over the years because as you get older your arteries – including those in your head – tend to harden and therefore the impact is not as great….

At least that is what I am telling myself!

Thankfully I haven’t had an attack for a couple of years but I get them between winter and spring so I always look towards that period with dread – and the longer I haven’t had an episode, the more i am worried about the next winter to spring transition….

I have tried imigran injections – but at $40 (or $60?) a shot, it never really worked for me – certainly not a silver bullet and then there is the question of whether it actually does anything or if it is just the normal end to a CH….

And yes, your last sentence is so accurate it is scary… Last episode I had, I was at work one day when I just dropped like a stone in a staff meeting – my team thought I had had a stroke or something…. It lasted about 15 minutes – I can’t help but move – I can’t stay still, I HAVE to walk around – generally running into stuff because I go blind in my right eye (mine are always right side) and get tunnel vision in the left. But when it finished, the endorphins released (I assume?) are so immense that I walk around with this huge grin because I suddenly feel so much better….

Not sure about you – but there is no family history of CH in my family – lots of migraine history, and I get those as well – but I’m the only one in my family who “enjoys” cluster headaches…

I hope yours pass quickly!

Hi Daniel,

I thoroughly enjoy your blog and couldn’t resist to respond for the first time.

Your cluster headaches sound dreadful. Sorry to hear about your pain.

For what it’s worth, I am able to rid myself of headaches and recently my sister’s headaches through a simple relaxation technique, some may call it mindfulness. Takes about 5 minutes.

In short, get the mind and body in a deep relaxed state, then let the headache do whatever it wants to do – as opposed to resisting/fighting it. The critical thing is not to think it but to feel it.

Seems like cluster headaches are on a completely different level, but it may be worth trying mindfulness if medicine doesn’t help.

All the best.

@Randall, thanks for your comment – I recall you commented way back when I was first diagnosed. I suspect you have it worse than me, but (as I’ve found when looking around online at support groups), it’s enormously comforting just to know someone else understands what this is like. Thinking about how mine have gone, I suspect you’re right about them getting less painful as I get older. Either that or I’m getting more used to them!

@Brandon, I’ll give it some thought. I have found that breathing in and out heavily can help, but I don’t think that’s to do with calm, rather the increase in oxygen coming in. It’s a bit hard to know if any kind of relaxation would be enough to “ignore” the pain.

Well I guess the Anon aspect goes away when Gravatar automatically pulls the Avatar from its records…

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