Cluster headaches

So I’ve been having these headaches, regular ones, a piercing pain through the top-left part of my head, from my temple down to my jaw. They come and go several times a day, mostly in the morning, every hour or two for about 15-30 minutes each time. Sometimes they’re early in the morning, waking me up.

During one of the first, I was trying to open a packet of paracetemol to take a couple of pills. It was a new packet, wrapped in tamper-proof plastic packaging. Which is an absolute bastard to get into when you’ve got severe pain throbbing through your head. I was wrenching at the packet, trying any way I could to get it open. I couldn’t find a bit of the plastic to pull, I couldn’t rip it open, I was bending the box around trying to penetrate it, silently cursing whoever designed it.

I know they’ve had problems with medicines being tampered with before, but couldn’t we just have packaging that makes it obvious there’s been tampering, rather than making it impossible to get into, let alone if you’re in pain?

As it happens, conventional painkillers didn’t help anyway. After some thought and a couple of visits, the doctor diagnosed me with a rare condition known as cluster headaches. It sounds impressive because it is — apparently in some people it can induce suicide, and has been described in medical journals as the most severe pain syndromes known to medical science, suffered by human beings.

That said, I’ve evidently got a mild case, but most of the description describes what I’m getting to a tee:

  • very severe headaches of a piercing quality near one eye or temple that last for fifteen minutes to three hours — check
  • typically unilateral and rarely change sides during the same cycle — check
  • often appearing during seasonal change — check, they popped up just as Daylight Saving started, and they virtually disappeared during our time in Adelaide
  • occasionally referred to as “alarm clock headaches”, because of the regularity of its timing and its ability to wake a person from sleep — check

It’s actually caused by a dilation of blood vessels, putting pressure on the trigeminal nerve.

Hopefully this is the correct diagnosis, because I’ve now got medicine which I hope is going to work. It looks damn impressive, a little cluster in itself, a capsule half-filled by smaller bits of stuff. And apart from warnings about heavy machinery and alertness, apparently I’m also banned from eating grapefruit and drinking grapefruit juice for the duration. Not that I’m an enthusiastic grapefruit consumer anyway.

So far so good; they’ve diminished in frequency and length. So I hope we’re on the right track.

Stories from people who have them worse than me.

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.

18 replies on “Cluster headaches”

bloody hell. You poor guy. Sounds dreadful. I wonder if stress is also a factor since the symptoms were reduced when you were on holiday in Adelaide.
What’s the link with grapefruit? Why not other citrus?
Hope the drugs work (and you can go off them soon).

Cluster headaches are the pits. I spend some time on the migraines newsgroup and some of my friends there have cluster headaches. The odd person has migraines as well and they reckon clusters are worse.

Hey Daniel

Welcome to the world of CH. I have had them for about 20 years – cyclical, every 3-4 years, 6 to 8 headaches per day for about 6 months. Mine don’t seem to be seasonal. Try oxygen if you can get it (you will need assistance from your GP for medical stuff) – cheaper than drugs. I have not found a drug that works yet to alleviate the pain – although melatonin (described in detail on the CH website) seemed to work and was least invasive. I hope you really are a mild sufferer.

I have suffered from migraine and tension headaches pretty much all my life. As Suzie says, clusters are worse. I have been close to suicide. You can’t lie down with them. My wife struggles because she sees me go through the agony. I get mine generally during the night so I don’t sleep so I am exhausted – which helps them to take hold…. I find I sleep for about 2 hours (just as REM is coming in) and then they hit and wake me up. I wander around the house trying not to scream – mine are right sided and blind me in my right eye.

Best thing you can do – get support from the CH website in your article, talk to and email people who also suffer. No one else will understand.

Here for you if you need to talk – send me an email.

Best wishes!

Thankfully, I’ve not got this. I get some tremendously bad headaches from time to time where it’s all sights and sounds are just overwhelming. The only cure is to take a couple of Tylenol and an ibuprofen (okayed by my doctor) and lie down in a dark room, and sleep/rest it off. But those cluster ones just sound awful. My deepest sympathies, and I hope the medicine keeps on working its magic.

My grandmother had these headaches on and off for many years. The strongest painkillers in the hospital did not help. She said that asprin was the only thing that would help somewhat. Every CAT scan and MRI she had showed nothing abnormal that would cause the pain. I read that lifelong heavy smokers are prone to these headaches. There is a headache clinic in New York City. It might be the Montifiore clinic if I remember correctly. Hope its not too severe.

I used to get those for a while when I was in primary school – they’d start at the same time every morning, and the pain’d be on one side of my head and specially around my eye. In the end I started taking paracetamol in the morning before the onset, which seemed to prevent them coming on; as you say once the headache’s started regular painkillers don’t really work. Not really a solution if the headaches start at different times, though.

(And grapefruit? What the hell?)

I’d forgotten about the oxygen. I’ve heard good things about it. I’ve also heard some stories of a particular mushroom which has been under trial for a while.

grapefruit has a particular enzyme in it that blocks a certain metabolic pathway in the digestive tract and the liver. it elevates blood levels of quite a few different drugs

I have nothing but sympathy for any headache sufferers, be it migraine, tension or cluster. I have suffered with migraines and now tension headaches since I was 15 (now in my 53rd year). At its worst, I would not even be able to have a conversation with anybody and sometimes ended up in emergency for pain treatment. I am on medication but it’s not foolproof and I sometimes just have to grin and bear it. I can remember times, just holding my head whilst crying and groaning but trying to stay perfectly still to stop the throbbing from getting any worse. I’ve tried dozens of things over the years – naturopathy, massage, accupuncture, etc. but am resigned to the fact that I will probably always have headaches in one form or another.

I get them too, and have had a bad session this week from Sunday to Sunday. They usually hit me for three or four days at a time. Moving agrivates them something shocking. Mersyndol is about the only thing that really helps, though I’m loving the new Nurofen Migraine. Beautiful pills.

I truly feel your pain on this one, Daniel.
I’ve suffered for years, as long back as I can remember, with what I called “spike headaches”. It feels like a railroad spike going down into the right side of my brain. They always occur during the day, come on without warning, but rarely last longer than 20 minutes (after which it’s just a nasty ache in the spike spot for a few hours). Of course, during those 15-20 minutes, I’m all but blind in my right eye and nearly incapacitated. My doctor tried the usual migrain meds with no effect, and finally decided the cycles weren’t close enough together to try preventative meds. So I suffer through it, year after year. I’ll be spending some time on the CH website, an excellent link, thank you

Take centre and face up again Daniel – good luck with it.
I’m not afflicted for that sort of period – at least not for the duration you are, I’d hate to have to put up with it for more than about the 30secs I get that sort of pain for.

I’m lucky, it’s prolly only a brain tumour :-)

Daniel, I know your pain – although mine is migraine.

I want to point out that what Daniel suffers and what I suffer cannot be helped with paracetamol, ibuprofen or the like.

Traditional pain killers work by dilating the blood cells, as a traditional headache is caused by vasoconstriction (constriction of the blood cells). So the goal is to dilate the blood cells easing the pain.

Cluster Headaches and Migraine are caused by massive vasodilation (dilation of the blood cells) – the direct opposite of a headache.

So, if you take a traditional pain killer like Tylenol, paracetamol or ibuprofen and your pain goes away – it isn’t migraine or cluster headaches – it’s just a really, really bad headache.

Daniel, your DR might also have advised you to avoid foods container vasodilators? Capsicum, chilli, avocado, spinach and yes – grapefruit. It’s a good idea to try and avoid them while you are having this cycle of CHs.

All good points Natalie; thanks. Apart from grapefruit, I haven’t been warned off other stuff. I’m certainly a regular consumer of spinach (it’s one of the only greens the kids will willingly eat). I’ll look into it.

this is such a hard thing to deal with i have headache and migraine since i was 15 and am now 33…have been to expensive neurologists and to no avail…my patterns change all the time…soooo gutting….your whole life is a mess with headaches

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