Sunday, 22 February 2009

Attack of the Shadows - a Cluster Headache experience.

Storm Clouds Rising

Thank God I do not own a gun. Thank God I do not live in a high rise apartment. Thank God my oven is electric and not gas. Thank God I do not have any rope or razor blades in the house.

I hate God.

I am laying on the kitchen floor in a quivering heap staring at the dirt. I had no idea how dirty the floor is. It is amazing what you can see when you are down on your knees. My fingers have been clawing at whatever is in reach and must be covered in germs. Fingers that I have had inside my mouth trying to pull my back teeth out. Germs have been the last thing on my mind. I had also been pulling at the hair on the back and side of my head trying to lift the skin from my scalp. Tears stream from my right eye, a tissue covered in mucus is clutched in my fist, a tissue I had moments before tried blowing my brains into.

My nose begins to clear, my breathing is returning to normal, my teeth stop screaming and my right eye is no longer under attack from an invisible ice-pick that was trying to dislodge it from it's socket. The storm is passing, the shadows have evaporated, all is quiet, all is calm.

For now.

Lifting myself from the kitchen floor I pull myself a glass of water and drink with an almost insatiable thirst. I am always left so thirsty after an attack. I look around the room and assess the damage; drawers are open, their contents strewn everywhere. My medicine cupboard is also open and half empty packets of pills are all over the kitchen work-top. I had been feverishly searching for something to relieve the pain. There is even a bowl of steaming hot water that I poured lavender oil into, hoping that by breathing in the vapour, it might enter deep inside my skull and ease the pain. Nothing relieves the pain. Yes, it is funny the things we do when desperate.

I have just suffered from a Cluster Headache attack. The pain is something that is not easy to describe. All I can say is that the pain drags me through hell and into insanity. It is a pain that has me begging out loud for mercy to God one moment then has me making deals with the Devil the next. If the cure to relieve the pain was to hack one of my fingers off with a blunt knife, I would do it. If the cure was to give up every possession, to trade a decade of my life, to drink the devil's piss, I would do it. It is no coincidence that Cluster Headaches carry the nickname of Suicide Headaches. People often get them confused with migraines. When you tell people you suffer from Cluster Headaches, they sometimes say, "Oh, I know, I get migraines too, they're awful". Or worse, "Yeah, I get nasty headaches too mate".

To quote from Wikipedia, Dr. Peter Goadsby, Professor of Clinical Neurology at University College, London, a leading researcher on the condition 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. It’s just awful.”

The thoughts that flash through your mind during an attack are interesting to look back on. It is funny what thoughts come into your mind when you can think of nothing but the pain. I remember thinking about the attack on the World Trade Centre. All the trapped office workers at the window begging for a rescue that would never come. Choking on fumes and consumed by intolerable heat, they leapt. I remember feeling envious of them during their moments of dissent. Although an unimaginable fear must have consumed them, my envy was for their momentary relief from physical pain as the cool fresh wind blew through them all the way down. Such thoughts can leave a person feeling ashamed once the Cluster attack has gone. At least I am still alive. The pain has gone as quickly as it came. The Beast has left no mark. If a person were to walk in the room and see me now they would just see a man in a messy apartment. A man a little dishevelled clutching a snotty tissue with a look of defeat on his face.

I have become an expert at noticing when the attacks are about to hit. It is as though my perception has developed 'sentinels' to keep watch on the periphery of my senses. They alert me immediately the moment they notice the 'Shadows'. They sound the alarm and I begin to prepare myself for the attack, although there is little that can be done in way of preparation except to psyche myself up. I turn off the phones, draw the curtains, take a deep breath, throw a penny in the well and make a mother fuckin wish.

Night time is the worst. I find myself scared to go to sleep, proper Freddy Krueger style. It is during sleep that most of the attacks come. They wake me like a perverted alarm clock. There is little warning, for when I sleep, the 'sentinels' sleep. Although they are getting better and are learning to wake me up as the 'Shadows' come in through my bedroom window, out from beneath my bed, down through the ceiling and I have at least a moment to gasp before the 'Shadows' enter me and begin their cruel torture. I say enter me, but the worst of it is that I know they are always within me. They lay dormant for much of the time, like a creature in the earth until something triggers their awake. They sleep for typically eighteen months at a time. Then something brings them out of hibernation and they begin the incessant attack for about a month. The attacks range from between fifteen minutes to two hours, although I have had one last three hours. They come almost everyday during an episode and attack one to five times in a twenty-four hour period. I take Verapamil daily during a cycle and I have Sumatriptan nasal sprays although it is questionable whether these drugs alleviate any of the pain. Perhaps it reduces the pain marginally. Mind you, any relief is welcome with the sweetest humility. I have tried the wackiest things to abort an attack. I have heard that very strong coffee can help, so when the 'sentinels' sound the alarm, I rush to the coffee machine and make a cup of coffee so strong it could raise the dead. I have heard that doing press-ups can help, as it releases endorphins. I should look like Hercules by now. Chocolate and alcohol are known triggers during a cycle so I avoid both like the plague. It has even been suggested that masturbation can help abort an impending attack by relieving built up tension. I think this has been suggested by someone who has no idea what the fuck they are talking about. You try knocking one off when you know you are about to get raped in the head.


  1. Hi Sean - not going to even pretend to understand that level of awfulness - but thanks for raising my awareness of a condition i was not familiar with. I have put a thumbnail link on my local Devon blog-roll for your site. If you want to reciprocate that would be cool.

    ps you may remember me when I was plain Steve Large (goatee beard / member of Muscat team and Pound Auth ).



  2. Incredible piece of writing, I'm sorry about your headaches, gave me one just reading it. I've never heard of them. Wishes for wellness.)

  3. For ten years I fought back against cluster headaches with painkillers, oxygen, lithium, anger, etc. Then I gave them all up and instead of fighting I learnt to bend with the wind. This has made the headaches much more manageable and I no longer think of suicide during a headache. It is hard to explain but I try to get into a mindset where I am thinking or picturing pleasant, zen things, and this can push the pain to the background rather than it being all-dominant. When I hit on the right thing, sound, phrase, memory, person or image, I can feel it right away, the pain ebbs a little. Sometimes this can even kill a headache like blowing out a candle.

    When I took strong painkillers I could put off an attack sometimes, but the feeling I had was that this was only putting off the inevitable and when the headache did come, it was worse.

    I think what also makes the headaches worse is anger and fear. Fear is a reaction to the unknown and after a few years you get to know your headaches very well, and that passes. The anger is the harder one to overcome. I recognise what you describe, making a mess of the room, crawling on the floor, trying to pull your head apart. I did all these things when I was fighting it. Now I sit in a dark room and try to let it pass over. I rationalise an attack as my body having its say.

    It is counterintuitive to not take any treatment for the pain, but it certainly changed my life for the better, I hope you can give it a try. It really can't make things any worse.

  4. What a fantastic bit of writing.
    I myself am a chronic sufferer, the beast is within me all the time, I live with the shadow and just wait for the torment to begin. I often think the waiting is almost as bad, but then he reminds me that nothing, not even the psychological torment can come anywhere close to what he has to offer.
    I have to use your almost poetic description, it is the best description I have come across yet, and maybe, just maybe someone else will understand when they read this.
    Thanks, and I hope you have many pain free days ahead of you.

  5. One possible solution for such a headache would be visiting the website to check the treatments they offer for your needs.

  6. Sean, I am episodic CH sufferer and can feel your pain. Recently i've started taking high strength fish oil to get about 1200 mg of omega 3s and 5,000 IU of Vitamin D3 daily. This seems to be helping. Would recommend giving it a shot. All the best

    1. 18+ yr sufferer here. I've been doing the d3/fishoil/magnesium regime for the past 4 weeks as well and it hasn't done squat for me. Melatonin had my PF for a couple years but it no longer works for me now.
      PS: Sean, this is Trevor. I sent you an email the other day but haven't heard back; are you still alive?

  7. Been episodic for 4 years now. Mine occur almost in par every 12 weeks. Last for 8 weeks with multiple attacks a day. My 8 year old son hears me come 11 pm and wake up and tries to help. Nothing is worse than knowing my attacks scare him and wake him up nightly. I am so scared he will end up suffering these attacks too. I was a childhood migraine sufferer, spending at least 2 weeks a month in bed with an attack, and my son has had migraine about 3 to 5 times a month since he was 4. Our neurologist links adolescent migraines with cluster later in life, although I can't find definitive conclusions anywhere. I thank you all for sharing your experiences and journey and honour your strength.


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