I was going to post this as a response in my intro thread, Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or   but after reading it. I thought  if I post it as a new thread maybe I will get a response to my plea.

Hi ClusterChuck,
You’ve suggested to me “There is no such thing as a pain level beyond a 10 ...”

I have never tried to describe this before as trying to explain to a non-clusterhead is like trying to describe the colour blue to someone born blind.

Right so we hit a Kip 10 stage.
For me it’s:- (Day or night)
Screaming, usually panting Oh God, Oh God, Oh God between screams (no worries about who hears as I am beyond the preservation of dignity); Banging my head. Punching my left temple; Hitting the wall (with my head); Off with my clothes as they are so uncomfortable so I strip to shorts and socks; A sort of running around in circles whilst shaking my head from side to side (I call it the thunderbird jog, cause I look like a disjointed puppet); Clawing at my body, raking my chest and legs with my nails; Kneading my left eye with my fist (sometime I punch my eye to punish it for the pain) which smears my tears, which seem so oily from my left eye, all over my face; Flossing till my gums bleed, then shoving a knife between my teeth twisting and kneading it spitting out mouthfuls of blood; Ramming the old cotton bud in my ear and winding it round and round.
If any of my family are unfortunate enough to be nearby, its drop to my knees rocking back and forth (remembering not to bang my head on the floor and scare them away, salvation is at hand) and plead with them “kill me, kill me, please kill me, oh God I cant stand it any more please kill me, if you love me kill me…” Watch your 4 year old start to cry and shake because he cannot understand what’s happened to his big tough daddy. But the beast doesn’t care who or what he destroys. (He is now 20 and screams if anything hits his head in case he ends up like Dad).

You’ve all been there so you know all the usual stuff when the beast comes calling.
Then it gets really bad. The intro is over and the beast raises his head and says NOW MIKE.

Very hard to describe what happens next but I will try.
Life beyond 10 (Nights only)
If I am not outside I have to get out into the night air, the beast’s message to get out is so intense I have smashed through doors and windows to get out of the house, hard to do on your knees but it gets done, so I crawl (I cannot walk now) outside into the back yard, front yard, or whatever space. The one thing is I cannot be is on a concrete or tarmac surface.
I am ready; The beast picks me up and I stand upright all the pains intensify and keep rising, all I want to do is die, I start to will myself dead, but I no longer have dominion over my body, it belongs to the beast. My wife has observed that at this stage my head starts morphing (like in the Hulk film). It actually changes shape on the left side and ripples and mounds, (my dad saw this once and is still freaked out by it). An icy cold spike hits the top of my head it picks up all the pain in my left head and plunges it down through my body. I stop dead, standing so still the only movement in my body is my heart beating, I cannot remember if I am breathing while this is happening (but I must be cause I am still alive), my senses of smell and hearing (already ultra sensitive due to the cluster attack) are now so heightened I can hear the sound of a moths wing beating through the air  as he flies past me, I smell everything the night has to offer, I hear a fox walking though the grass 20 yards away and I can smell its breath. I have this fleeting moment of extraordinary clarity.
Then I start to shudder, not shake, a tremor starts inside me and my whole body trembles, all that exists now is pain. I feel nothing else, I am aware of nothing else, I am now deaf & blind, I am told my left eye starts pumping out juice like a tap, I cannot feel it. The pain is numbingly cold through my body but my left head feels like it is on fire, a fire that feels hotter than molten steel; I am a snow cone with a lava topping. I grip my testicles and squeeze them as hard as I can, trying to distract myself from the beasts lesson. I know there is nothing I can do but wait this out as it will end eventually. The pain climbs higher sucking me upwards I throw my head back and open my mouth and scream, no words, just (described to me by my neighbours) a long tormented primeval  wailing of pure suffering; and loud, very very loud. The neighbourhood is now wakened; I know what they are doing, hiding, shielding their children from the awful unearthly noise, some pray, some just sit and cry. The Devil is showing them the torment that awaits them in hell.
And still the pain climbs; every nerve in my body registers pain sweat pours off me, my left eyebrow is now covered in salt, a new fire starts about one and a half inches above my left eyebrow, it’s like a pain hole opens in my forehead and the lava is gushing out, and now the real fun starts.

I now know that even death will not release me from this pain. This is my universe now. I am pain personified; I am all the suffering and hurt of the universe contained in this frail body and it can’t take it. I dwell on it; study it; there is no escape my only hope is to meld with it, try and control it, I cannot fight anymore I am one with the beast. He has destroyed me and created a new being and that beings name is pain and it used to be me.

You probably realise that by this stage I have totally flipped, I am now insane; No human mind can bear this level of suffering so madness is my only refuge. There is no way to describe what happens to me; these are my remembered thoughts, whilst I stand there near naked, all my senses overwhelmed, dripping with sweat, gripping my testicles and wailing at the sky.

Then so suddenly, I swear one day it will give me a heart attack, it goes and it just stops, at this stage I actually think ‘what’s wrong where is my pain?’ Now I just feel exhausted, my sight and hearing return, my sense of touch comes back, if its winter (yes I do this in the snow) I can feel the cold, the left side of my head feels soft and tender and very bruised. I go back to my normal state (Kip 3-4). And I never fail to feel deeply ashamed.

This is my life beyond Kip 10

Please if anyone else has been here, talk to me. If I know that somewhere someone understands what it is like, that alone will be comfort for me the next time the beast takes me to that place.

You've been rather eloquent here. I don't think I would have used the words you have to describe where I've been, but most of us have been there.

I've been there twice. K10. I hope never to go back there again. It is the absolute antithesis of fun.

I've also noticed that there's not a whole lot of competitive spirit around here when it comes to the "my pain's bigger than your pain" thing. What I have noticed is a great deal of empathy for one another.

We know how you feel and we all sympathise. We can understand, we have felt the pain. 

This isn't a competition and being overly descriptive doesn't really help either.

Just hang in there. Focus on the fact that it will be over eventually

Well, That was pretty deep. I hear ya on alot of things like begging the wife to do me, but i never did the hitting myself thing. I always thought why help it beat me down.


                                 Coach Bill

Hi Clusterbuddies.

I know I am rather long winded but that is who I am, if you think my posts are too long (and this one is) then never ever ask me to explain anything, unless you have a couple of hours to spare:-)

I have spent 47 years as a CH sufferer, in all that time I have never met or spoken to another clusterhead…until now.

After a bout I want to forget it I don’t want to discuss CH, think about it and I certainly don’t want to be around people who remind me of what it does to me.

Please never ever think that I am trying to say that "My pain is more than your pain”
This post is the first time I have ever told anyone what happens to me (inside) during my Kip 10, I must admit I was crying when I wrote it as I found just calling on the memories extremely distressing, I don’t know what you mean by being over descriptive, I was giving an (accurately as I can) account of my 9 then 10 as experienced by me and witnessed by my family. I was trying to describe pain that is indescribable in the hope that my fellow clusterheads would understand it and I would no longer be alone. I could write a book about it and still not do it justice.

As you all know most people cannot even comprehend the distress and pain I described just in the first part of the post, so forgive me if I find it hard to believe that anyone can possibly know where I go when the beast takes me into his domain. I now know that you all are there with me, you have my sympathy but boy am I glad that I no longer fight the beast alone.

ClusterChuck: I do now understand that everyone’s 1-10 is different, Thank you for putting me straight on that. I am doing my own scale for my GPs & consultants, they always ask me on a scale of 1 to 10 where I am, but I didn’t have any reference points, until now.

Brew & Ras: Everyone interprets (and explains) things in a different way, we are individuals, not competitors, so if I have somehow mistakenly  raised those thoughts within you, please put them out with the garbage. We are all fighting the same war, us against the beast.

When I was diagnosed all those years ago by Dr. J. Blau he had 60 other clusterheads in the UK.
I look at the numbers just here and it is terrifying. I have been selfish, I know I have done a lot to help research the condition (See my ‘My Story’ post on this board) but I now realise that turning my back on my fellow clusterheads is wrong.

Thank you all for suggestions and offers; this is my treatment to date.

Fist I am lucky to live in England, all my medical treatment and medication is free.

My medical support:-
Doctors;  I have had the same GP for 35 years, she has built her surgery from the initial 3 partners to a large clinic with 10 GPs, they are all familiar with me so are able to now diagnose CH and offer treatment to other clusterheads. Amongst other things, they sent me to the Royal Free Hospital in Hampstead London, where I undertook a soft tissue check, which meant that they carried out every test they knew on all my bodies systems (glands, organs etc…) to see if there is any malfunction which causes CH. This took nearly a year (I really began to admire the complexity of the human body after that). Sorry everyone the only thing they found was a varicose vein (Varicocele) in my left testicle, and the only thing that seems to cause is infertility in some men. Mind you if all male clusterheads have the same left ball thing we could be getting somewhere!!!!

My consultants, you should all be aware of Professor Peter Goadsby of The National Hospital for Neurology & Neurosurgery Queens Square London. He is the worlds leading authority on CH, before him It was Nail Quinn (moved to another department, something to do with pain & movement I think) & before him Dr. J Blau. So I have been treated by the best there is on the planet for 25 years.
If I have a bout I can call the hospital and am given an appointment within 7 days. I have also had more scans than you can shake a stick at.

Medication; again See my ‘My Story’ post on this board. Nothing has ever worked.
We clusterheads can require up to 1000 times the dosage (for non clusterheads) to have any effect, so some of you who have had no joy with your meds, maybe your dosage is too small.

PLEASE DO NOT UNDER ANY CIRCUMSTANCES INCREASE YOUR DOSAGE WITHOUT MEDICAL SUPERVISION. Ask your GP to contact Prof Gaodsby or his team for advice.

Here are a few examples of the side effects I have had;-

Verapamil: turned the world red and I collapsed on the street, twice.
Methysergide : had me passing lumps of flesh in my urine; Horrible, like peeing out glass.
Ergot: nearly lost my fingers
Lithium:  turned me into a chalk filled zombie.
Amitriptyline: Crossed with something else (really cant remember, gave me a Heart attack)
Temazepam: Spent 4 hours trying to walk my dead body through a brick wall.

I admit I have not tried everything yet, hence, me trailing  Neurontin (Gabapentin capsules) during this bout.

The only thing that works for me is 02, my method of usage I have already described (See my ‘My Story’ post on this board).
I am now  a self medicator, I do my own research and find new drugs, I then order them through my GP, trail them  and  report my findings back to my GP who report to the hospital. So any suggestions are welcome, if it’s not on my ‘tried that’ list I will give it a go.



But I do need your  help because I am getting older, less able to deal with the beast and increasingly suicidal, and I am very afraid. I will leave this for another post as I can see I’ve reached the piss everyone off length of post again.
Mike

Dr.mike wrote on May 1^st, 2009 at 1:35pm:


I am here to tell you that there is a level beyond the 10 that you describe and that is the point where you leave your body and watch it writhe in pain, the point where you can truly see and watch the beast working his evil magic but you have risen above him. Where the darkness of its being is visible and the light is blocked around it. the point where your body has collapsed upon the floor in a crumpled mass of flesh and bone because it can no longer stand on its own. at that level there are no longer any levels because you cannot feel the pain.

Hi I pop in now and again and saw this thread. Nice description of a hit.

Mike there are few in the world that reach these levels of pain you describe.
That said there are many here who do.
Some of us go there 1 or 2 times a day and some of us as many as 8-10 times a day and some like chuck who see even more.
Few can describe the pain.

I am one who gets hit hard and often in cycles but I have only had these for 34 or 5 years. I can be hit up to 10 times per day and each hit can last to 2 hours sometimes more. I've been fortunate to get an hour or 2 break every day and I thank the gods for that. I have lost much of my life to CH.
I too had never found an abort or medication to control my CH until recent years.
For 20 years I went from doctor to doctor, Climbed the highest mountains and searched the world for someone or something to cure me. I have been prodded and probed as have you. I have seen the signals in my brain over and over again and learned how to affect the readings. I went from universities to hospitals and back again and never found my cure. Ive sat with the shamans and medicine men still no relief.

I stopped believing in doctors and modern science and persued my own ways. for the next 10 years I never took another medication and found some peace in dealing with the battles with a clear mind. I fought well but the beast allways demanded a rematch.

It is here on this site that I finally found some help as will you.
Untill that time I had never experienced a cluster hit below my 9 in 30 odd years nor had I known a deep cycle to last less than four months, the longer cycles were only 3 years. Though I allways had silent attacks between full hard cycles.
Today and for several weeks now I know I am deep in a cycle and have been waiting for the hands of god to slap me upside the head but his hands never come only the burning breeze as it is the devil he smacks instead. He gave me the seeds to battle the demon bastard. And they have been planted well.

Welcome home.

I know I terrified all the students in the common room with a 7 
Made a few of them question if they could work with people in pain.

For me 10 is listed on my hospital notes as 'if I am not dead- please kill me'

I still have scars around my one eye from an in-advaisable use of a corner of a plank I think that was one of those days I hit the point of thinking digging out my eyeball to get at the gremlin that was inflicting the pain was a good idea. Being in that level of pain and needing stitches whilst bleeding was not funny.

Did a similar stunt again later missed and split my lip open.

After months of seeing me howling and hitting my head on walls because I could not escape from the pain and the infamous running into the door stunt my oldest friend talked me into getting a referral to a neurologist.

Knowing it is what it is, that I do have the back up and can self refer at any time to the headache clinic I am under does help. Knowing that whilst I have not meet anyone IRL face to face who lives with a happy mix of CH and chronic migraine I can chat with folk who have a good idea of what I mean also helps.
I spend 2/3rd of my life in awful pain [darn headache diary!] but I aim to live in that 1/3rd thats just achy because I can choose to let the bugger grind me down and get bitter or get angry and kick it back. I choose the latter as the views looked b.a in the former.

I think for all of us a 10 is the innermost circle of unspeakable agony of our own private little inferno.  A temporary form of insanity is the only option left open because no one sane could keep going long enough to reach the other side.

If you have not done so already give OUCH UK a call.