Dear Clusterbuddies.
This is a long post, I apologise but I really need to share my story it will help to keep me sane
I suffer with Epsodic Cluster Headaches. I get between 1 and 8 bouts a year lasting between 4 & 6 weeks.
I find it quite difficult to express my experiences. This is due to the difficulty I have in remembering just how devastating and painful the attacks are; I think this is an unconscious defensive mechanism; if I try to remember them fully it might precipitate further attacks, strange I acknowledge, but I think you are well aware of the foibles of the human mind. My permanent state (between bouts) is Kip 3-4, I have very rarely experienced Kip 1 and have never been at Kip 0; I do not know what it is like to be without pain. A full scale attack is way beyond Kip 10. The only reason I don’t end it is because (A) I am such a stubborn bastard, and (B) Too many people love, respect and depend on me, I cannot let them down. So tempting as it may be I will not die by my own hand.
However as I write this I am experiencing a bout. This started on the 6th April 2009 and whilst these attacks are not as severe as in previous bouts, they are painful enough to awaken memories of previous bouts.
History:- As a child aged 5 years (1962) I experienced what is commonly referred to as teenage migraine; severe stomach aches with no known cause, as Migraine occurs on the maternal side of my family, this was to be expected, 2 of my sisters, my Mother and daughter all have classic Migraine. The difference with my ‘teenage Migraine’ was the severe, debilitating headaches that accompanied them.
As a child I had seen adults taking headache tablets [to cure headaches, I believed] so naturally I imitated them.
Firstly Aspirin, no success. In fact all over the counter medications were unsuccessful, at that time Codeine was an over the counter medication I tried that, no success. So I went on to steal my mother’s prescription medication. She was prescribed Distilgesics, with my childish thinking I believed that these as adult medication were the ‘magic cure’. When I took the dosage recommended for my Mother, no effect so I increased the dosage, still no effect, I increased the dosage many times until I was downing about 20 at I time [I cannot remember the strength]. I then realised that they were not going to work, I also realised something else, that amount of medication taken by a young child should have caused me serious harm, I realised that during these bouts I seemed to have developed a very high tolerance to these drugs.
During my early years I only found 1 medication which effectively reduced severity of the pain, Brewers Yeast tablets, I would take 5 on the onset of each attack and on approx 30% of attacks they had the effect of reducing the pain and shortening the duration. However they deteriorated in effectiveness and by about aged 10 ceased to be effective at all.
I Approached my teenage, the last severe stomach ache I remember occurred at about age 12 years old. I was with a friend at the time who became so alarmed at my distress he called an ambulance, as a result I spent the best part of a week ‘under observation’ at the North Middlesex Hospital In North London.
My teenage years were spent as a normal middle class suburban teen apart from the severity of my headaches, which we now categorise as Cluster Headaches.
(If you were to question my friends from this period the one thing they all remember are my headaches, I think this affected several of them more than me! One friend now has an Osteopath & Accupuncture clinic and spent a year giving me therapy, free, in a bid to stop the beast)
The worse part of this was the sensitivity to alcohol and tobacco; during a bout just the smell of alcohol or a whiff of tobacco smoke would trigger an attack, this put a bit of a downer on my teenage exploits. (The smell of leather and oil based solvents will also trigger an attack.)
One benefit was that many recreational drugs had absolutely no effect on me, I tried cocaine, snorted 3 grams one Xmas eve and it had no effect whatsoever, I spent years believing that the effect was placeboic, only getting people high because they believed it would, When MDMA (ecstasy) became popular, again a mouthful of tabs and nothing. I began to realise that it was me reacting differently than my peers. I have posted my cannabis experience as a warning to clusterheads in this thread.
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The only effective medication during these years was a home made inhalant I was given my Mr. Addleson (my dentist, surgery at Bounds Green Road London N11). After describing my symptoms to him he believed I was suffering from sinusitis and gave me a small label less bottle of some concoction he had made, (I never found out what it was). I put a few drops in boiling water, a towel over my head and breathed in the fumes. The results were remarkable, my blocked nose and excessive nasal discharge [rhinorrhea] immediately ceased and I was able to take deep breaths via my nostrils, the ability to breathe deeply this way seemed to decrease the length of each attack. I now realize this was due to greater air flow = more 02
{Note: Why does clear breathing via the nostrils have this effect, but not via the mouth…during oxygen therapy what differences are there in response between mouth breathing and inserting the tube into a nostril}
Adult:-
When I started attending my GP they knew nothing of cluster headaches and started treating me for classic Migraine, all treatments were ineffective. I was then referred to the National Hospital, Queens Square (1984?) where I met Dr. J. Blau and was admitted into the hospital. He informed me that I had episodic cluster headaches and there were others like me. I spent many a torturous hour whilst he triggered the beast, took observations, readings and conducted a host of weird experiments. Those were the days of hell on Earth for me, but I believed that what I was doing might help other clusterheads, his article in The Lancet Vol 342 September 18, 1993 included me as part of his study group and much of what he has written describes my responses and symptomology.
He tried everything he had including:- Ergot, methysergide, , lithium, abortive therapy, calcium channel blockers, and Sumatriptan injection. As well as some experimental medications, some highly illegal substances and methods which if known would have resulted in him being struck off. (He has unfortunately died now, so I can reveal these things safely). Nothing worked; I was having scans daily to monitor the effects of various drugs on my brain. I remember being in the lecture theatre surrounded by doctors from all over Europe, an attack was triggered and I had to stand there and talk them through what I was experiencing.
Imagine forcing yourself to stand still, fists clenched and the beast is coming, yet you have to calmly describe how your head is being set on fire, skull crushed with a thousands clamps whilst a red hot poker is thrust in and out of your eye socket, your teeth are being mashed together whilst every nerve on the left side of your mouth is being tortured with electric wires, oh and the earache, the neck ache the cramps in your cheeks, the baseball bat being smashed against your temple and this is just the beasts intro {think this is bad boy you wait I am coming , go on piss yourself, rip your balls off, gouge your eye out, no sacrifice will stop me from coming for you I’m gonna show you what pain really is then I’m gonna multiply it indefinitely and start it again and again and again, scream like a bitch, smash your head on the wall, nothing can stop me I am the beast and my name is pain} , so I stand there shaking and sweaty, salt crystals appearing like mini diamonds laced in my left eyebrow and because the real hit is on it’s way I am crying with fear, then Blau pulls out one of those beefed up optic torches and shines it straight into my left eye I think that was the loudest longest scream any of those doctors would have experienced in their entire professional life.
We decided to trail Hortons O2 theory; This was kitchen sink science, 1 high flow regulator atop a large cylinder and a tube shoved down my throat (Masks are usless), crank up the volume and remember to breathe out through my nose before my lungs popped. After 25 years I am still using this foolhardy and dangerous method. AND I DO NOT RECOMMEND IT, THERE ARE SAFER WAYS PLEASE USE THEM.
I have to fill my lungs to bursting, hold it as long as I can, exhale and do it again. Do this for more than 10 minutes and it becomes toxic and brain damage will result. This shortens the attacks to about an hour, which is great cause I can see the end and it keeps me going.
This is the only relief I have, nothing else works. I am trailing Neurontin during this bout and see if it helps.
2 things I have noticed. During a bout I lose all sense of hunger, I have to remember to eat or I will probably starve to death.
Noise therapy; very loud low frequency sound (bass), I have a massive amp in my car and I find a that playing a LF rhythm similar to my heartbeat does sooth me, it doesn’t kill the pain but in some weird way it helps me to bear it.
There is a lot more, how it affects my wife, kids, got me sacked but I've bored you all enough. I think I will end here, sorry about the length of this post, but I have found it extremely therapeutic, I can finally share this with those who understand.
Thank you all. I am not alone,
Mike
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