Chronic Cluster Headaches

2005-03-29T01:04:00.000+01:00

I thought it was about time I got round to writing about something that I experience on a daily basis, Chronic Cluster Headaches. It is difficult to explain just what and how bad these are. The word Headache conjours up a theory that you can take a couple of pain killers and make the offending condition go away, unfortunately you cant.

Cluster Headaches manifest themselves in two guises, Episodic or Chronic. Episodic means that the attack can occur at the same time each day and usually at the same time of year. From what I have learned from some american websites, typically episodic attacks occur usually over a 13 week period during the year before the sufferer goes into remission.

Chronic means there is no remission and in my case there is no pattern to the attacks, they occur at will and although some sufferers experience attacks upto 8 times aday, I am fortunate that I only experience upto 3 attacks per day.

The pain is the most intense I have ever experienced. I have had broken bones from sports activities, dislocation of joints, but nothing compares to the pain I experience on a daily basis from my Chronic Cluster Headache attacks.

A usual attack begins with some pain around my left eye and nasal passage, shortly followed by burning sensation in my left ear. This rapidly spreads and I experience pain on the left side of my lower and upper jaw. By this time the pain around my eye has intensified and I am now experiencing pain directly behind the left eye as well as the left upper half of my skull and down the left side of the back of my neck. All of this usually occurs within 5 to 10 minutes and has a rapid onset.

The pain reaches its cresendo between 15 to 30 mintues and it totally unbearable. I loose focus in my left eye which now waters profusely and I cant breath up my left nostril as it is completely blocked. I also loose the abiltity to hold a conversation, I have no real clue what people are saying to me let alone be able to formulate a reply. My co-ordination goes to pieces, I can barely walk in a straight line and I have no real idea what to do with my hands, it is an extreme effort pick anything up or put things down if I am holding something.

By this point I am totally dibilatated, and am usually crying from the pain and occasionally letting out the occational grunt or scream. I start clawing at my head and applying pressure to the top of my left eye cavity with one hand and pressing as hard as I can with the other on the muscle on the left handside of the back of my neck. Although painful to do this, it does offer some minor relief from the pain inside my head.

Attacks can last from about 30 minutes (minor attack) to 3 hours (major attack), although that leaves and inbetween attack, I dont experience these, mine are either minor or major, no inbetween.

Last night I had two really bad attacks, both brought on by one of the known triggers, sleep. Sleep and alchol are key triggers in Cluster Headache attacks, I dont touch alcohol at all and havent drunk for about 12 years, but I have to sleep and this is my major trigger.

During Easter Sunday evening I dozed off on the sofa for about 90 minutes, at the end of the 90 minutes I was awoken by the pain in my eye. I was very hot and in a lot of pain, and my initial thought was to panic, I knew what was coming and I was not prepared for it.

I immediately took off my shirt and ran to the back patio doors to get some fresh air, which is about 15 feet from where I was laid. By the time I had made it to the door and opened it I was in a full on major attack.

The pain has been described by one of the world leading researchers as the most excruitating known to mankind, and a fellow female sufferer has described it as more painful than child birth, I am pretty sure they are right, as last nights first attack although really bad lasted for an hour but was nothing to what was to come later.

I have medication for the condition. Unfortunately there is no miracle cure or instant pain releif, alot of the medication is preventative and in my view experimental. Oxygen Therapy seems to be effective in most people but I have found little relief in this. I also take take Verapamil which I believe is used to treat patients with heart conditions, and is known as a calcium blocker. A side effect of the drug is reduce the frequency and severity of attacks, and I take 160mg three times per day.

Increasing the dosage requires a an ECG, which I have had and failed, although my heart is fine it is not strong enough to take an increase in dosage, which I desperately need.

I also use Imigran Nasal Spray in 10mg doses. I can only have two of these in any one 24 hour period. Initially I was sceptical that these nasal sprays actually worked. Unlike normal painkillers with are ingested and take 1 to 2 hours to work, nasal sprays are absorbed by the mucus membrane in the nasal passage and Imigram Nasal Sprays can take effect in around 20 minutes.

For my first attack last night I used an Imigram Nasal Spray and in around 20 minutes I was almost back to normal although still experiencing some pain in my head. After going to bed, I couldnt really get to sleep at first but eventually dozed off at about 3am.

Our sleep pattern comes in cycles and Cluster Headache Attacks occur during REM sleep which occurs about 60 minutes from when sleep has begun. 4.04 am and I am woken by the pain, it is a major attack and reaches cresendo in about 5 minutes. I have absolutely no idea what I am doing and cant walk properly. I am screaming with the pain and clawing my head and hair, and at one point started head butting the wall until stopped by my partner.

I evenutally make it to the bathroom and put my head under the cold tap. This really has no effect but does give me a few precious seconds of relief. On attempting to return to bed my legs just wont co-operate and I collapse in the hallway outside the bathroom. I am crying and seriously considering killing myself. There is no wonder this condition is also known as suicide headaches.

My partner comforts me but she can do nothing. I am tempted to use my one last Imigram Nasal Spray, but recently we discovered some evidence on the net that suggests that Imigram can stop an attack but also induce another, I am convinced this is what is happening to me as the frequencey and intensity have increased over the last 6 months since I have been using Imigram Nasal Sprays.

At approx 5.40am the pain has subsided enough for me to collapse into bed. I am totally exhausted from my attack and very quickly fall asleep and awoke at approx 1.30pm this afternoon.

Its now 12 hours later and I am alone in my bedroom, tired and in need of sleep. I dont want to risk it, I feel quite sure I will have another attack, it is rare that I get through the night without an attack, and I am not mentally tough enough tonight to take another attack like last night.

I have considered suicide on more than one occasion and once came very close to taking an overdose of Verapamil, only for the pain to subside before I could get to the tablets. I am not sure how much more I can take of this. They say I am likely to suffer this condition for between 15 to 25 years and I have had it for 3 years now. I dont think I am going to make it.

My condition has cost me my job recently and I am now unemployed. Having been to the job centre to register for unemployment benefit they have told me that in there opinion, my condition makes me unemployable and I should claim Incapacity Benefit. I find the whole subject of benefits makes my skin crawl, but I am going to have to bite the bullet and see what I am entitled to.

Over the last two years, apart from suffering this condition, I have wife has left me and our two children, so I am a single parent, my business collapsed, my mum passed away and I have had to sell our house and we now rent privately which I cant afford.

I have managed to go from the top 1% to the bottom 1% in a very short space of time and it is difficult to come terms with. I am pretty sure that if I hadnt met my partner in May last year when I did, then I probably wouldnt be here to write this log. I can take most things, the loss of my marriage really is no loss at all, the house can be replaced at some point, my mum on the other hand is a different story and my health is a different story, but I will write about mum another time. Its one year ago today that she passed away and I dont feel like writing about it at the moment.

The pain from my attacks and the next attack pre-occupy me at the moment, and as each day passes I am more untrusting of myself and I what I might do in desperation. The pain is that bad all common sense leaves you and you will do anything to relieve the pain. I have spoken to my local GP recently and asked for councilling and I am seeing someone at the end of April. But I dont know if I can wait that long. Some days the depression is as bad as the pain, I am depressed so even when I am not in pain I am suffering.

I now have fear of the pain which is when all rational thought goes out of the window. If one reads this entire log and identifies with what I am writing about I may have accomplished something, it has certainly helped me to write about it.

If you want to know more about Cluster Headaches follow this link.

www.ouchuk.org

Poo Pooetry Again - Birth

2005-03-26T05:05:00.000Z

Birth

From time to time is has to be said, we all give birth to a poo,
Its nothing to be ashamed of, its the same for me and you

But as parents we are guilty our poo we do neglect, as when a poo is born we show it no respect

As it feels the contractions around its bod it knows its time has come, and as we squeeze it moves on down and shoots out of our bum

Free of odious gases, muscus and the rest, the poo is relieved to get outside and leave behind that mess

Nudging out of its warm moist home, it gleefully greets the world, blissfully unaware of the end to which its hurled

With the wind rushing past its head as it descends into the gloom, it suddenly becomes aware of its fate a dark and watery doom

That’s not fair Ive just arrived it thinks unto itself, as you reach up for the bleach that sits upon the shelf

Arriving at its watery grave, it sinks unto its fate, it considers going around the bend before it is to late

But as you clean and discard your paper down on to its head, little poo quakes with fear as he knows he’ll soon be dead

He pokes his head up through the waters and gives a loving a wink, please don’t flush me down the loo I promise I wont stink

But its to late as you push down and give him one big flush and all around little poo cold water starts to rush

The vortex sucks and drags poo down, he really is in strife, but as he falls he thinks again that he’s led a fruitful life

His splash helped clean the exit hole, that really was quite helpful, and in gestation he produced some smells that where quite awful

What else can a little poo do, apart from stink then swim, with nothing else going for him he really couldn’t win

So little poo accepts his fate as he shoots on down the drain, toward the sewerage works to get ready to start again.

Copyright Siberian Hamster 2005
This article is not to be reproduced with the consent of the author

Pooetry - Thats a poem about Poo !

2005-03-26T04:33:00.000Z

Walking Down The High Street

Walking down the high street, window shopping in the mall,
when I have that funny feeling, and my skin begins to crawl.

As my buttocks start to tighten, and I look around for help,
And as the pressure starts to build, I let out a little yelp.

Squeezing ever tighter, I waddle through the queue,
Up toward MacDonalds where I know they have a loo.

And as I struggle through the crowd My penguin waddle brings a knowing glance, is that man unwell or is this some new dance

Beads of sweat upon my brow, and an ever tighter clench
I know my time is running short and soon we’ll have a stench

At last I reach my destination, and waddle through the door
I hope and pray I find that loo as I can’t take any more

The turtles head has emerged, and he doesn’t want to stop
And as I mount the first step, my waddle becomes a hop

From side to side I briskly climb, careful not to dislodge my load
My impatient friend has seen the light, and knows which way to go

Arriving at my destination my heart is filled with glee, enter into the gents and find not one toilet, but three

But my joy is short lived and my fears are realised, one is out of order and two are occupied

The turtles head is unabated and he cares not for my worrys, and now I remember there is a loo outside arournd the corner near Currys

But I know it is to far and my time is drawing near, I cant hold on much longer and my heart is gripped with fear.

And as luck would have it, a cubicle is vacated, I hop and waddle through the door, to find things complicated

Although I’ve found a toilet, and will have to wait no later, as I sit and hear the plop, there is no toilet paper.

Copyright Siberian Hamster 2005

This article is not to be reproduced with the consent of the author

Stop The World I Want To Get Off

Chronic Cluster Headaches

Poo Pooetry Again - Birth

Pooetry - Thats a poem about Poo !