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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.