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July 2, 2013 / magickittenblogs

Invisible Illnesses – dealing with Cluster Headache

I was wondering whether I should write about this or not, but decided I would as this may be a situation others find themselves in and it’s not an easy one to deal with.

I have something called Cluster Headaches.  OK, a headache – not pleasant but not the end of the world, right?  Cluster headaches are a little bit different.  For a start, they’re the only headache that’s more common in men than women, so already I’m in the minority, plus only around one in 5000 people will experience them.  You’ve heard of migraines, right?  Weird flashing lights and visual distortions, nausea and so on as well as the headache, hangs around for a while?  Cluster headache is a bit like that, except turned up to 11.

Cluster headaches, so called because they tend to occur repeatedly in a short space of time (a ‘cluster’), are excruciatingly painful.  The first time I really had one, I thought I was either having a stroke, or I had a brain tumour. Genuinely.  The pain is incredibly intense, a sort of boring or drilling sensation, on the left side of my brow ridge, and then spreads all along the bones on that side of my skull.  The left side of my face ‘falls’, my left eye starts watering and my left nostril starts running.  Often, the pain is so bad that I can’t stay still, I need to be as cold as I possibly can, and I may vomit.  After an hour or so, the pain recedes, I’m able to go to sleep for a bit and recover. I’m most susceptible to these headaches at around 4am (those ones wake me up – nice), and early evening, but I’ve been known to have them at all times of the day.  Generally, I’ll start a cluster sometime from the end of May to mid-July, and it usually finishes by mid-August.  I sometimes get these in January too, although that’s only happened twice.  The summer ones have been happening for the last eight years, plus the migraines I used to get when I was younger too.

Aside from the huge unpleasantness of the headaches themselves, there are a few things which make this illness hard to deal with.  First of all, unless I’m actually having a headache right then and there, I seem fine.  In fact, I am fine.  For ten months of the year, give or take, I might have the odd migraine, but generally I’m all right.  I’m even all right for a bit in between the headaches attacks.  This is a huge problem for some people – they can’t *see* anything wrong with me.  No plaster cast, no drip, no medical bracelet, no rash…
Secondly, there’s the name – Cluster Headache.  It really doesn’t sound too bad.  We’ve all had a headache, haven’t we?  So what’s the big deal?  Well,

Peter Goadsby, a neurologist and headache specialist at the University of California, San Francisco, has commented:

Cluster headache is probably the worst pain that humans experience. I know that’s quite a strong remark to make, but if you ask a cluster headache patient if they’ve had a worse experience, they’ll universally say they haven’t. … 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 anaesthetic once or twice a day, for six, eight or ten weeks at a time, and then have a break.

And,

The condition was originally named Horton’s Cephalalgia after Dr. B.T Horton, who postulated the first theory as to their pathogenesis. His original paper describes the severity of the headaches as being able to take normal men and force them to attempt or complete suicide. From Horton’s 1939 paper on cluster headache:

“Our patients were disabled by the disorder and suffered from bouts of pain from two to twenty times a week. They had found no relief from the usual methods of treatment. Their pain was so severe that several of them had to be constantly watched for fear of suicide. Most of them were willing to submit to any operation which might bring relief.”

Yeah… Not your average headache.

It took quite a while, first, to work out that Cluster Headache was what I had, then to work out a treatment regime that actually neutralised the headaches effectively.  At the onset of a cluster, I have to take a very high dose of a steroid for a week, then taper that off while gradually increasing the dose of a medication usually used to control high blood pressure.  The steroids make me emotional, spotty, hungry, and stop me sleeping properly, even with Nytol.  I also have to have an ECG before I can start taking the second medication because I can’t take it if I have any irregularity of heart function.  Other options include lugging around an oxygen tank then breathing it as necessary, or having an injection in the base of the skull.  If I get a breakthrough headache, I have an epi-pen-style self-injector to use, as conventional pain killers are effectively pointless.  And, amid all of this, I am expected to carry on as normal.  Because of where I work, I’m supposed to have any medical appointments outside work hours, although they made an exception for the MRI scan I had a couple of years ago.

I’m sure there are other people out there who are in a similar position – it may not be Cluster Headache, but there are certainly people who will have a condition which they go to great lengths to treat and live with, and all those efforts will go unnoticed because it’s not a ‘visible’ illness, it’s not life-threatening, or it’s something which is rare.  Because so few people have what I have, it’s unlikely that enough research will be undertaken to ever discover what causes it.  Therefore it’s extremely unlikely that I’ll ever find a permanent solution.  If I were to be pregnant during the summer, I wouldn’t be able to take what I do now, to prevent the headache attacks.  I’m actually scared to think what that will be like, having to relive the appalling pain and panic I felt.  Who knows, they may just go away one day and not come back.

I’d love to know if anyone else is going through the same kind of things… If you are, I wish you all the best.

Thanks for reading!

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4 Comments

Leave a Comment
  1. David / Jul 4 2013 1:56 pm

    I wish all the healing in the world. I’m a chronic cluster sufferer. I had at least three clusters a day for over 8 months straight: no bueno.

    Thanks for writing this and bringing our shared plight to light.

    • magickittenblogs / Jul 4 2013 6:19 pm

      I’m glad you appreciated it – all the best getting your condition sorted.

  2. clusternaut / Aug 16 2013 1:20 pm

    I’ve had chronic CH for 34 years, 10 months of the year, done 70 drug trials for it. I’m one of the worst of the worst. Addressing D3 deficiencies and adopting this vitamin regimen has helped me more than any specialist has been able to.
    It’s not an ad, a scam, or of any expense, just over the counter vitamins, safe, effective in 81% of people surveyed and has almost no side effect profile.
    Credit to Pete Batcheller for coming up with it, the man has solved more CH cases than any other patient alive. If my link is not permissible, google “123 pain free days and I think I know why” or look for it at clusterheadaches.com. This really is exciting stuff.
    As a sufferer to another sufferer, please check it out, it’s a potential life changer.
    http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1324046404

    • magickittenblogs / Aug 16 2013 1:29 pm

      Thanks for sharing this – I’m always open to any possible new ways to address the condition. All the best to you for the future – I hope your condition improves!

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