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.
Down down, smoking is down
Excellent. Smoking rates are continuing to drop, from 21.2% in 1998 down to 15.3% now.
So, how about the next step, government? Now that smoking is almost entirely banned indoors, what about extending smoking bans to include all undercover areas — I’m thinking particularly of under shop awnings.
(If I ran the world, I’d be looking at smoking bans in highly trafficked outdoor areas, such as CBD and suburban shopping centre footpaths. And the following step might be banning it everywhere except in private homes and designated smoking rooms/areas. It’s one thing to have a bad habit; it’s another to have a bad habit that blows poisonous fumes into others’ faces.)
My red, swollen eye
I’m sure (more than usual) people were staring at me on the train today.
And you should see the amount of gunk that was in it this morning.
The doctor’s given me some eyedrops for it.
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.
The health check
Apparently there have been some alarming results from the workplace health checks underway at the moment.
Victorian workers have been given a scare by a State Government-run health program which has found a high percentage don’t exercise enough with a number of people asked to see a doctor within 24 hours.
We’ve had ours on Friday (everybody opted-in, I think), and we seem to be a pretty healthy workplace.
At least, nobody’s been carted off in an ambulance.
My own results were all okay, with one exception.
Some of the points are self-assessment; others like cholesterol were checked by the nurse on the spot. I’ve summarised the take-home brochure, and my results below.
Diet
2 serves of fruit and 5 serves of vegetables (per day) should be your target
I’m on 3 serves of fruit, and 2 of vegetables, so need to increase my vegetable intake. It was noted that a variety is good. I probably eat more spinach leaves than most, as I know the kids will chow them down.
In all honesty, I’m not sure how achievable 5 serves of vegies per day is for me, but I can try.
Drinking
I barely drink (perhaps a one standard drink per month if I’m lucky), and the nurse decided this was closer to no alcohol of the three options on the questionnaire.
I’ve never drunk a lot; it’s reduced even more since the cluster headaches arrived on the scene, as alcohol can help induce them (though just at the moment they’re not around).
Phsyical activity
Aim for at least 30 minutes of physical activity on most, preferably all days
I might not play sport, but I do a fair bit of walking. It’s generally three 30 minute walks a week with the kids, and one or two 60+ minute walks with Marita and her dog on the weekends. Add to that the shorter walks to/from the train each weekday (12 minutes x 2 x 5, though no doubt that doesn’t have the same benefits of the longer walks), that’s 270-330 minutes of walking per week, or at least 38 minutes a day.
So I think that’s fine.
Smoking
There is no safe level of smoking
No problemo. Never smoked, sure as hell not about to start.
Body shape
Normal — Men: 94 cm or less. Women: 80 cm or less
I’m 86 cm, have been since I was a skinny yoof. Do have a little bit of a pot belly, but nothing major.
Blood pressure
Normal — Less than 120/80
The brochure explains that the first value is systolic — the pressure in the arteries as your heart squeezes blood out during each beat. The other is diastolic — the pressure as your heart relaxes before the next beat.
Mine’s a little high: 113/83. On this basis there’s a recommendation to review it when I next see my doctor, but the nurse emphasised that there’s no real problem.
This seems higher than usual for me. Normally when I give blood it’s lower — it was 117/76 the last time I noted it in my blog. In fact this time round the nurse thought it might be unusual and did an average out of four readings.
Cholesterol
Normal — Total cholesterol 5.5 or less, HDL cholesterol 1.0 or more
Mine is 4.8 total, and 1.8 HDL, so that’s good.
Diabetes risk
Diabetes risk score — low risk: 5 or less. Medium risk 6-14. High risk 15 or more
Random blood glucose levels — normal: less than 6.5. High 6.5 or more
My diabetes risk score is 2 points for my age, 3 points for my sex (that would be male), and 3 points because someone in my family has it — my Dad has type 2. So 8 points makes me a medium risk for diabetes, and worth reviewing with my doctor at some stage.
My blood glucose level was 5.4, in the normal range.
Overall then
I’ll enquire about blood pressure and diabetes risk, the former isn’t a big problem at present, and the latter I can’t really do much about other than keep up the exercise and improve the diet.
I suppose there’s no big surprises for me in all this, but in terms of preventative health measures, I can see how this kind of far-reaching basic health check might help others to think about their lifestyle choices and modify them if possible.
And of course it’s only a fairly superficial check. I’ve still got headaches, Bowen Belly (much less so recently) and other minor ailments which hit me from time to time.
Anybody else do the check? Any surprises?
Bowen Belly
I haven’t been well for the last couple of days.
It kicked-off on Monday night, when a slight stomach pain, which I tried to quell with my usual remedy, a glass of lemonade. Because burping helps. Really.
It didn’t help — instead it set off a flurry of up-chucking, joined later in the night from the other end. This kept going in regular instalments until about 3am, by which point I felt like I’d purged 20% of my own body weight. Not nice. I tossed and turned for the rest of the night.
Given I’d donated blood earlier on Monday, I rang up their hotline to alert them that all was not well. The night duty bloke, also called Daniel, sympathised and made a note on my file. I think he said they could still use the haemoglobin, but not the plasma. Or maybe it was the other way round.
Cup Day, which in the past few years has been spent away on holiday (not this year; it wasn’t a “pupil-free” day this year) was pretty miserable. The kids kept themselves busy, as I tried to catch-up on sleep and fluids, though my stomach was indicating that food might not be a sensible option just yet. By Wednesday morning everything seemed okay except the headache.
At least, as far as I could tell. It’d be nice if you got some definite feedback on this type of thing, but I suppose we’re not digital, so it just ain’t gonna happen. So we’ll have to put up with a headache and a pain in the belly, rather than “Error 407.5 — dodgy curry.”
Not that I know what caused it. We joke about this type of thing in my family as “Bowen Belly”, but its depressing regularity makes me wonder if there’s some undiagnosed intolerance that’s lurking there, rather than it being a bug of some kind.
Years ago I was tested for lactose intolerance. I honestly don’t recall what the result was, and I didn’t blog about it (it may have been pre-blog; shock horror). But I do recall trialling going off most dairy food for a while. I stopped when I realised I’m really not that keen on soy milk. Lactose intolerance is actually pretty common amongst those of Chinese origin (of which I am half).
Whether it’s that or something else, worth talking to the doctor about, I think.
(I just tried a cup of tea with soy milk. If this is what I have to do, it’ll take some getting used to.)
No more boiled lamb’s brain for me
I recently had a bunch of blood tests done, a kind of overall health check thingy.
It was quite funny actually. M coincidentally went in as well for something, and while waiting in the Pathology place we observed what looked at first glance to be the most unhelpful receptionist ever known to mankind. A lady sitting in the chair, ignoring absolutely everybody, reading a magazine for the entire hour we were waiting.
It was towards the end of the wait that I twigged. She wasn’t a receptionist. She was another customer, having to wait a while between tests, and she had grabbed that chair because it was the only one left free at the time and/or she wanted the most comfortable chair due to being heavily pregnant.
Anyway, I got the results back. Everything checked out fine.
Except for cholesterol, which is at 5.9, certainly on the high side, though not high risk. (Over 6.2 is high risk. Under 5.0 is desirable level for men.)
The doctor asked if I eat a lot of cheese. What’s a lot? I’m not sure. I eat my share; I commonly put it on sandwiches and pasta.
Evidently other high cholesterol foods include eggs and butter. Switching from butter to some kind of canola oil spread might be the go there, if I can find something that tastes half-decent.
The top one on that chart, with 1900 milligrams of cholesterol per 100 grams, is boiled lamb’s brain. I don’t think I’ll have any trouble avoiding that.
What about foods that can lower cholesterol? This page lists some which I could get more of into my diet pretty easily: Oat bran/oatmeal (but not the instant kind), walnuts/almonds, fish with plenty of Omega-3 (baked or grilled), olive oil.
And of course exercise helps. I don’t do terribly or brilliantly at that, but the kids and I have started taking regular evening walks around the place, which will help.
