Afflicted

This blog was originally to be about graphic design and marketing for small businesses, but from the off its been about that and just about anything else that enters my head. One day I will set up another blog for the other stuff and this can return to its original purpose. Perhaps...

Today, I want to write about something that has for the past 12 - 13 years been a part of my life. An unwelcome part, but a component that nevertheless interlocks with all the others that make me who I am: Cluster Headaches. We call them "The Beast".

As I write today, I am drained of almost all of my energy. My right eye is half shut - indeed, the right side of my face is drooping a little. I am short of breath, exhausted. My back aches and may arms feel far too heavy to be mine. They are someone else's, surely. I have to concentrate just to pick up a glass of water. Its heavy. I am utterly, totally and completely drained. I have the shakes and am mistyping every second word. Essentially, I have been beaten up again and again since yesterday afternoon. I am badly hurt and in shock.

Every few weeks (sometimes its several months) I get a visit from the Beast. Sometimes the attacks never amount to much as I catch them early and can prevent them going out of control - either that or the Beast chooses not to torment me this time, saving its vicious bile for another day.

When the headaches strike, its as though a thick, oozing, red-black poison is slowly flowing through my brain, invading and infecting its billions of vessels, cracks and crevices. I can almost taste it - coppery, acid, yet thick and cloying. My right eye aches horribly and sharp bolts of pain start arcing and flickering through my brain, increasing in intensity and frequency until they join together in a tangled knot of deep, black, Satanic agony that totally overwhelms me.

The pain is beyond breathtaking. Its like a whole bunch of those sharp, short "ice cream" headaches at once, yet with more depth, as though you've been hit on the head with a hammer. I pant. I try to walk away from it, I try to transfer it by pinching myself, by punching things. I have deliberately smashed my head hard against the wall before (Head 0, Wall 1). I try to hold my head, but that can be difficult too - I feel as though my hands could flay the skin from my skull. And then it gets worse. You never remember the pain until you get it again. "Stay calm!" I try, but my rational thoughts are attacked and overrun by the poison and I thrash about and gasp, and moan, a 100Kg, forty seven year old man reduced to a sobbing, gasping, helpless wreck calling for my mum.

They say that Cluster Headaches are supposed to be the most painful medical condition known; that a cluster headache is more painful than childbirth. Well, I don't know about that but if that is true, last night between the hours of 5pm and 11pm I had sextuplets. Fortunately, I had the Lovely Anna who knows how to help me calm down and regain control. Control is everything when dealing with pain. The few times I have properly lost control were not pretty - and to be frank, are dangerous to me as rationale goes out the window and madness creeps in. The pain is so vicious, so emotionally destabilising that self harm and indeed suicide seem perfectly acceptable options. That's the other name for Cluster headaches: "Suicide Head".

Little is known about Cluster headaches. Many doctors never come across a sufferer and so misdiagnosis is common (I self diagnosed after scouring the internet). They are not migraines. Migraine sufferers have different symptoms and exhibit different behaviour when suffering. Clusters are thought to be precipitated by something misfiring in the brain's hypothalamus, triggering a severe reaction in the trigeminal nerve - that's the huge nerve that controls our faces. I won't go into details because there are so many theories surrounding the condition, but if you want to know more, have a look here.

So, there I am twisting and writhing as the Beast invades me. What do I do? Well, to start, if I can get in quick enough, a can of Red Bull (a taste which I truly detest!) can abort an attack, but seeing as my headaches can go from nothing to full strength in less than a minute, this doesn't often work. I also have oxygen tanks that dispense O2 at 15 litres a minute and I breathe that. Not sure if it works, but having run out last night without a resupply until tomorrow, I am feeling quite vulnerable. I also take a "beta blocker", Verapamil in, according the pharmacist, dangerous quantities. This time they appear not to be working. And, I religeously take Nurofen "Migraine Strength" every four hours. I have several times managed to terminate a bout by just sticking to the Veraps and the Nurofens for a couple of days. Not so this time. If that's not enough medication, I have Imigran injections on standby too, but I hate them and they seem to have little to no effect.

(At this point I stopped writing as another attack with peaks and troughs between strength 5 and strength 9-10 commenced, lasting from 10.30am till about midnight.)

So here I am again. Another morning feeling exhausted. I actually managed to sleep a little last night, but woke up at 4. 30 without a headache but hungry. Ate a tiny bit of chicken pie and two new potatoes. Couldn't stomach more. Had a fruit salad instead. I am addicted. The sharp, sweet-sourness seems cleansing to me. Is it a craving similar to those experienced by pregnant women? (Well, it seems only fair that as a man, if I'm allowed to experience the pain of childbirth, surely I can have cravings too? Where will it end? ) Is my body demanding something that is in fruit salad?

I'm hoping that today I will not be subjected to another bout like yesterday which was particularly nasty but already the signs are not that hopeful - I have shadows - low-grade headaches that twitch and swirl through my brain - they are more a sensation than pain, but they can be the overture to the main event. They can (and lets all hold thumbs at this point) be the worst that can happen as the Verapamil gains the upper hand and the Beast is wrestled to the ground, rendered pretty much ineffective.

The other bit of good news is that at some point today I get replacement oxygen tanks and this neatly brings me to the most important part of this blog post: The pure, shining, glowing beauty of the NHS.

Right now, there are many, many people in the United States who also suffer from Cluster headaches. And they simply cannot afford to have them treated. I on the other hand, here in Britain have access to all the treatment I need. I don't pay for doctor's appointments. I don't pay for prescription renewals. Out of O2? I simply call the oxygen people and they deliver. For FREE! I pay just £7.60 for a month's supply of Verapamil. And I pay the same amount for Imigran Injections. Peanuts! If I had to pay for the Imigran, well, I wouldn't be able to - or I'd be too scared to use it in case I 'wasted' it when a greater need was lurking round the corner.

I do accept that in the States its not going to be simple to introduce a system similar to the NHS, and that there are many large and powerful organisations that make a killing (literally?) from selling health insurance, but come on America, you are not the Third World. Provide healthcare to your many, many people who have not benefited from your capitalist land of dreams. Use your imaginations. Your people have to use theirs - there are some sufferers who buy welding oxygen to help themselves. Sort it!

I count myself fortunate - beyond fortunate that I live in the UK. Back home in my beloved Zimbabwe I'd have to grin and bear it. In the States, I'd have to hand over all my earnings for relief. Most of all though, I am extremely lucky that my headaches are episodic. There are people who live day-in and day-out without a break for years with this awful condition. Even worse, there are a few children who have this mainly adult disease. How on earth does a child cope with these vicious, evil attacks? God protect them!

If you've read this far, well done. I'm unsure of whether I'm seeking pity or whether I'm just wanting to spread awareness of this disease. Lets go for spreading awareness. Its more gallant. Sure, I could always use a little sympathy, but then so could just about anybody - and if you have any, save it for the children and the chronic sufferers.

Have a look at this.


Copyright © 2009 Paul R Davey. All photographs, text and artworks in this portfolio are copyrighted and owned by the artist, Paul R Davey unless otherwise stated. Any reproduction, modification, publication, transmission, transfer, or exploitation of any of the content, for personal or commercial use, whether in whole or in part, without written permission from the artist is strictly prohibited. All rights reserved.