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.

Physical wreck: There will be snot

I’m a physical wreck this weekend, from head to foot.

Some new shoes are fine for me, but the ones I wore on Thursday resulted in three blisters: one on each heel, and another on one of my toes. I’m sure the shoes will settle down after a couple of wears, but in the mean time, I’ve got bandaids on every time I leave the house.

And I’ve got a head cold. It’s not at the top of the scale when it comes to colds and flu, but it’s not very pleasant either.

The movie In The Loop (which is a spin-off from the TV series The Thick Of It) has some very funny deleted scenes on the Blu-Ray disc. In one, Jamie (aka The Crossest Man In Scotland) rants to Malcolm about going to see the movie There Will Be Blood… he complains that there’s hardly any blood in it.

My weekend so far could be called There Will Be Snot. On Saturday I went through an unbelievable number of tissues, thanks to an alternating blocked/sneezy/runny nose. The house sounded a little as if someone was doing a day-long really really bad trumpet rehearsal.

So far Sunday is looking like it might be a day for a sore throat rather than lots of nose action, but we’ll see.

Hopefully this cold will be on the retreat by tomorrow. I’ve got important things to do during the week.

Here for your enjoyment is Jamie McDonald, the Crossest Man In Scotland. (Coarse language)

Finally, what is amazing about In The Loop is that they managed to construct a trailer with no swearing (apart from one bleep):

Ouchy

Those Swiss Army knife people certainly know how to make knives. Very sharp knives.

While using one of their kitchen knives earlier in the week, I carelessly took a small chunk out of my thumb.

Be warned: slightly gory picture ahead.
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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?

Double excision

From time to time some of my blog posts are about personal stuff, rather than the wider world. This is one of those posts.

Yesterday was a day of excisions.

I had many thousands of hairs excised from my head at the barber. Easy.

And I got the lump taken out of my leg.

You may recall from my last post the quandary of paying for private vs getting it done in the public system. Multiple health professionals had said it would take ages to get through the public system elective surgery queue. They were wrong.

In fact within a few weeks of getting onto the list, Southern Health Monash Health contacted me and said they could do it at Cranbourne, sometime on the 10th of September — the precise time TBA. This was not just surprising, but also amusing, because I’d made an appointment on the same day (at 4:30pm) to get it done privately, at the rooms in Dandenong of the surgeon who had seen me at Monash Medical Centre in Moorabbin (East Bentleigh).

I ummed and ahhed and eventually cancelled the public appointment, on the basis that it was worth paying the $150 to be able to know a definite time, to not have to potentially wait for long periods, for the possibly nicer service and environs, and to not have to travel as far.

Plus, although I have a philosophical objection to private health insurance, I have the income that I can afford an occasional burst of money to get something like this done, and save a space on the public queue for someone who can’t.

So anyway, similar to last time, they took a look, shaved some hair off, and gave me a local anaesthetic. I asked if this would render my leg unusable — a question I almost immediately felt foolish for. No — it really is a local anaesthetic, so only the surface near the lump is affected. The rest of the leg is fine.

Then they drew lines on my skin, and sliced me open. I didn’t watch, but from what I can gather, the surgeon simply made an incision, then basically squeezed out the lump.

It came out in bits, and he proclaimed it harmless — if I heard him right, it was calciosis aka calcinosis, specifically dystrophic calcinosis — a build-up of calcium in soft tissue, often caused by previous damage, such as injury. He asked me, and I couldn’t recall any injury in my right leg. I couldn’t. Any football injuries? Unlikely! I did fall off my bike as a teenager once, but I don’t recall if I fell on that part of my leg. Oh well.

Anyway, the bits will be sent off to pathology for analysis. The nurse joked that some people like to take photos of what comes out, and so I decided to too. But I’ll spare showing you that here. It ain’t pretty.