Author |
Topic: most important info I have learned here (Read 430 times) |
|
renny
New Board Junior
  
Gender: 
Posts: 91
|
 |
most important info I have learned here
« on: Mar 30th, 2004, 7:36am » |
 Quote  Modify
|
Hi all. And just a thought.....
Of all I have absorbed from reading, far and away what I have come away with is this, the kip scale. Prior to finding you guys, I thought EVERY HA was gonna go kip10, as soon as they started, I took meds (imitrex) and had no idea they might just level off at 3 or 4, and could therefore be manageable, if you know what I mean. Now I wonder if I didn't cause rebound HA because of taking meds at first sign.....what did I know, anyway. Thank you, bobkip, for defining levels...still sux, but I now know that every shadow/flicker ain't necessarily gonna go suicide level. This has been the best info I have learned from this board. Thank you all, especially, Mr Kip. karen 
|
| « Last Edit: Mar 30th, 2004, 12:42pm by renny » |
 IP Logged |
tell me...did the wind sweep you off a' your feet...
|
|
|
Superpain
New Board Hall of Famer
GOT O2!?
Gender: 
Posts: 1351
|
|
Re: most important info I have learned here
« Reply #1 on: Mar 30th, 2004, 12:16pm » |
Quote Modify
|
I posted a while back about my outlook on the kip scale and ch's in general. While I don't fundamentally disagree with the kip scale, I believe k9 & k10 are a choice. The pain is the same as 8, but at 9 you have a breakdown and feel sorry for yourself, and at 10 you surpass that even and just give up. As far as I'm concerned those stages are a choice. Maybe not for everyone, particularly someone that is new to clusters; I think we all have to go through it and reach those levels at least a few times, or it's not a cluster...
But for the seasoned ch sufferer there eventually comes an acceptance and a certain degree of conditioning, and for me, the realization that letting myself go there makes it 10x worse. You don't have to feel sorry for yourself. You do not have to give up. It's a choice made in a moment of weakness that produces horrible results, the least of which is a mini nervous breakdown onto a very expensive, normally useless visit to the ER, all the way to taking your own life. If you hit 9 or 10 the beast wins, and it's simple as that.
I personally have my own scale, because I don't really "dance" or bang my head, or stuff like that. Granted, I can't lay down, but my reaction to 4-7 are about the same, so describing actions doesn't adequately portray anything for me. And since I refuse to hit 9-10 anymore, well...
My scale would be more like 1-4
1. shadows in general. Annoying, but mild or strong they are able to be dealt with. Bad one's deserve a lttle O2. Probably gonna wake up, could get me out of bed.
2. Sensations of burning kick in, the "cramping" feeling, maybe some stabbing. Starting to hurt pretty bad, but as long as it doesn't last too long I'll be OK. Definitely hit the O2!
3. Oh mutherfucker, make it stop! Full on ch pain. Muscles flexing, jerking, pounding fists now. Gasping, moaning, groaning. Eye is tearing. Good luck with the O2. Suck it hard and fast! Shouldn't last more than 1hr.
4. Full on ass kicking. Total loss of control of body. Flopping around like a fish on hot pavement. Every breath escapes in a gasp or a scream. Can't administer the O2. It's too late. Can't see, can't talk, except to God... At this point, although you know there is nothing he can do for you, might as well ask again, got nothing to lose. Sweating... Hair on your head hurts. Your soul is immersed in deep, thick, pure pain. There is nothing you can do but suffer and ride it out. It will last hours. You know you are fucked. You're left a sweaty, quivering mess afterwords. But the rush of not having pain after it ends is almost a buzz.
That's just my take on it...
|
|
IP Logged |
Chris
|
|
|
renny
New Board Junior
Gender:
Posts: 91
|
|
Re: most important info I have learned here
« Reply #2 on: Mar 30th, 2004, 12:30pm » |
Quote Modify
|
 WOW well that's putting it right out there, SP. Am still absorbing most of this, I fOR SURE agree with the last part, incredibly accurate description, and especially the 'buzz' when it is over. For me, it's almost euphoric, and I hadn't heard/read this reaction from too many others.
My point was, until discovering other human beings with this same wonderful affliction, that I did not recognize that NOT EVERY HIT would result in the extreme extraordinary level of pain that a full blown ch brings. When the shadows started, I just assumed the worst...and therefore wonder how much unnecessary imitrex I wasted. Have yet to get O2, would probably solve a lot of problems AND save a lot of $$. 
|
|
IP Logged |
tell me...did the wind sweep you off a' your feet...
|
|
|
JDH
CH.com Alumnus
New Board Hall of Famer
We will get by, We will survive!
Gender:
Posts: 2453
|
|
Re: most important info I have learned here
« Reply #3 on: Mar 30th, 2004, 12:32pm » |
Quote Modify
|
on Mar 30th, 2004, 12:16pm, Superpain wrote:But the rush of not having pain after it ends is almost a buzz.
That's just my take on it... |
|
Yep, when it stops hurting is one of THE 2 or 3 best feelings there is 
I usually feel so drained after just having had my ass kicked but I get almost a euphoric feeling after it's over....there's nothing else like it.
Jim
|
|
IP Logged |
9-11-01, to remember is to honor.
It's not what you know, it's what you can prove.
ECH established 1985
|
|
|
Luke63
New Board Hall of Famer
For sale: 1 BIG BARKING HEAD Price: Free
Gender:
Posts: 1182
|
|
Re: most important info I have learned here
« Reply #4 on: Mar 30th, 2004, 12:52pm » |
Quote Modify
|
Bravo Super!!!! Bravo!! Thats about my scale too...and you taught me alot about the levels on Kip...its what you want to make it. And boy oh boy when that pain drains back out of you...kinda like watching a wave go back into the ocean...it is pure euphoria for me as well...kinda like a really good orgasm...you wanna go to sleep..but unfortunately in my case...the alarm is going off!!! Luke
|
|
IP Logged |
I think we should all get together and do a movie..."Night of The Clusterheads". George Romero would have nothing on us!!!
|
|
|
Lobster
CH.com Alumnus
New Board Hall of Famer
Gender:
Posts: 2016
|
|
Re: most important info I have learned here
« Reply #5 on: Mar 30th, 2004, 2:21pm » |
Quote Modify
|
I tend to find that there are many sub-levels between KIP7 and KIP8. ie 7.1, 7.2.... 7.8, 7.9
In between 'cannot sleep' and 'screaming' there are a great many levels of pain.
The 'crawlers', where I sense the 'worms of anguish' burrowing into my temple. Digging those out with sharp objects is highly effective.
The 'burner', where we can melt TV remotes with the flames shooting out of our CH-side eye sockets.
The 'magma snot', with colorful 2500 degree mucous pouring from our tender CH-side nostrils.
The 'werewolf in london' fangs, where one can feel the back teeth on the CH side undergo the excrutiating transformation into great canine-like mandibles of death. Owwww... that hurts like a mutha. Sucks that they always change back before we make it to a mirror.
Yes... a great many superpowers we CH sufferers have.
Wrokk
|
|
IP Logged |
Rock beats Scissors.
|
|
|
Thorns
New Board Junior
"Ahhhh....that feels good!"
Gender:
Posts: 70
|
|
Re: most important info I have learned here
« Reply #6 on: Mar 30th, 2004, 9:11pm » |
Quote Modify
|
on Mar 30th, 2004, 12:16pm, Superpain wrote:| As far as I'm concerned those stages are a choice....You don't have to feel sorry for yourself. You do not have to give up. It's a choice made in a moment of weakness that produces horrible results, the least of which is a mini nervous breakdown onto a very expensive, normally useless visit to the ER, all the way to taking your own life. If you hit 9 or 10 the beast wins, and it's simple as that. |
|
Very well said. I have never let the beast take to me the ER. I refuse to let it 'win'. For me a KP7-10 is the same. Once I reach a 7, what comes next doesn't matter it's all the same horrendous torture. Worrying about numbers/levels at this point only weakens what little mental strength I have to fight the beast. So I just stick with calling it a 7 and turn to face the bastard.
However, when describing the pain to a Dr. or a non CH I generally stick to the KP1-10 scale just to keep it understandable for them.
I'm not sure I'm ready to call it a 4 yet. I must learn the jedi mind trick before then. Hey that would be cool--I am not having a cluster--wave of hand--I will never have them again--wave of hand. 
Must go find some Medichlorions now to fight the beast!
Thorns
|
|
IP Logged |
|
|
|
Superpain
New Board Hall of Famer
GOT O2!?
Gender:
Posts: 1351
|
|
Re: most important info I have learned here
« Reply #7 on: Mar 31st, 2004, 12:40am » |
Quote Modify
|
Yeah, I've tried the jedi mind trick... So far I'm only able to reduce the scream to a loud moan. But I'm still perfecting it too.
|
|
IP Logged |
Chris
|
|
|
sandie99
New Board Hall of Famer
Wish it, dream it, do it - inspite the pain!
Gender:
Posts: 10429
|
|
Re: most important info I have learned here
« Reply #8 on: Mar 31st, 2004, 3:26am » |
Quote Modify
|
I have noticed that sometimes the CHs which are low on kips scale make me feel more aggressive and restless than those witch are high - they make me just depressed and tired.
Best wishes & PFdays,
sandie99
|
|
IP Logged |
CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
|
|
|
Tiannia
New Board Hall of Famer
Life does not apologies......
Gender:
Posts: 3241
|
|
Re: most important info I have learned here
« Reply #9 on: Mar 31st, 2004, 1:32pm » |
Quote Modify
|
on Mar 30th, 2004, 2:21pm, Rock_Lobster wrote:
The 'crawlers', where I sense the 'worms of anguish' burrowing into my temple. Digging those out with sharp objects is highly effective.
|
|
You know this made me remember something. Granted I was only 12 when my grandmother died. She did not speak English well, but looking back now, I remember that there where times when she ouwld get HA all of the time and then they would stop for a while and come back. Now to a 12 year old this did not seem unusual because my mom always had migraines. But Grandma used to describe them as hot worm in her head. I wonder now if she had clusters.
|
|
IP Logged |
The curious paradox is that when I accept myself just as I am, then I can change. - Carl Rogers
|
|
|
renny
New Board Junior
Gender:
Posts: 91
|
|
Re: most important info I have learned here
« Reply #10 on: Mar 31st, 2004, 2:14pm » |
Quote Modify
|
Hey Wrrokk....pretty damn accurate descriptions there...you been living in my head or WHAT??? lol
karen
|
|
IP Logged |
tell me...did the wind sweep you off a' your feet...
|
|
|
Jeepgun
Guest
|
|
Re: most important info I have learned here
« Reply #11 on: Apr 8th, 2004, 10:21am » |
Quote Modify
 Remove
|
Ditto, Supa' Pain. I never let ANYTHING make me feel sorry for myself. Shit, as bad as these things are, I still get up every morning, am able to work, use all of my limbs, speak and interact with others, and with the exception of these clusters, I have enjoyed magnificent health for my entire life.
I've been in situations where I have considered suicide, but compared to that, these clusters are a walk in the park.
My own scale:
1-3: The Shadows: Varying intensity, lasting as long as 90 minutes. I'm miserable, but functional.
4-7: The Ratcheters: "Ow... damn, that hurts!" But I can breathe my way through them, or if I'm driving or in the middle of a meeting, I can sort of play it off and tough it out. I can feel the pain ratcheting up, becoming more localized to my right eye, and becoming more piercing.
7-10: The Screamers: Mostly they hit at night, and when they do, I sound like I've got Tourette's, feel like someone's jamming a screwdriver into my eye, and although I don't do much of the head-banging, I still end up writhing around on the bed, pressing my hand into my eye, pacing, sobbing with pain, and gritting my teeth. These are the ones that may manifest conjunctival injection (bloodshot eye), and my eyelid hanging at half-mast. When the pain begins to radiate down my jaw, that's when I know it's a 10. If worse comes to worse, I can ride it out, although I've been known to pray for death, swear at God, and turn into "Big Bad Bear," growling at anything that has the misfortune of getting in my way.
I've never had one that has sent me to the ER, and never had one that has made me consider suicide. I have had clusters that make me fully appreciate why the people of old used to drill holes in their heads to relieve headaches! 
So, that's the Frankosaurus Scale.
|
| « Last Edit: Apr 8th, 2004, 10:22am by Jeepgun » |
IP Logged |
|
|
|
|
|
|
Home
Help
Search
Members
Member Map
Login
Register
Reply
Notify of replies
Send Topic
Print
test rss