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Title: On Kip 10's.......... Post by Donna on Oct 21st, 2002, 1:17pm I've just had my 3rd Cortisone Spinal Epidural.......without any pain medication. I am terrified of being put to sleep. I will do almost anything not to be put to sleep. It is MY phobia. I am a wuss....... I delivered a child without pain medication....due to necessity, not will power. I now need spine surgery, and I will put it off until I can't stand it anymore, because I'm still scared to be put to sleep, and I can't get around it this time. My purpose for these little bits of history is to let you know that I am not trying to convince you that I can tolerate more pain than the next person..........but I have had to endure some tough pain and I am in a position to compare. I cannot tolerate a Kip 10. I cannot talk, drive, type, think rationally or get up off the floor with a Kip 10. I am a pathetic thing. Someone has to take me to the hospital because I can't stand the pain. If I had it for more than an hour..................I'd be history or I would have to be put to sleep for the duration. I see tales of four hour Kip 10's and I say to you......you have never had the misfortune of experiencing a real Kip 10, and I am glad for you. I don't want you to have one. But the fact is, if you had a Kip 10 for 4 hours, you'd be saying "ditto Donna". I don't care how you rate them, a four hour K-10 will put you in the ER. We need to try to keep a focus on the description of our headaches so that we can be helpful and accurate for those in search of help. It is our duty to give good information to the sufferers that we try so hard to attract here. We don't need pain tolerance contests or strut who can bare the most pain. That's immaterial........it doesn't enhance our purpose. Let's just be sure that we post as accurately as possible for the purpose of good information. Please review the Kip Scale.......and use it appropriately. Pain level 0 No pain, life is beautiful Pain level 1 Very minor, shadow's come and go. Life is still beautiful Pain level 2 More persitent shadow's Pain level 3 Shadow's are getting constant but can deal with it Pain level 4 Starting to get bad, want to be left alone Pain level 5 Still not a "pacer" but need space Pain level 6 Wake up grumbling, curse a bit, but can get back to sleep with out "dancing" Pain level 7 Wake up, sleep not an option, take the beast for a walk and finally fall into bed exhausted Pain level 8 Time to scream, yell, curse, head bang, rock, whatever work's Pain level 9 The "Why me?" syndorme starts to set in Pain level 10 Major pain, screaming, head banging, ER trip. Depressed. Suicidal. And by the way, Kip, where the heck are you? We need you here with the Family. |
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Title: Re: On Kip 10's.......... Post by Jenny G on Oct 21st, 2002, 1:37pm Donna, I am writing this on the assumption that you are responding to my post about the four hour kip 10.. I can tell you: 1. I too have had two children without pain meds 2. Suffered gallstones and emergency gall bladder surgery 3. Have been a CH sufferer for more than 10 years. I know what pain is and nothing is as bad as a kip 10. I have nothing to gain by telling people "I had a kip 10 for four hours", nor would I insult the intelligence of the people on this board by exaggerating about it. The purpose of my post, was not to start a pain contest, it was out of concern and a reach for support since it was highly unusual for me and I am pregnant. Perhaps I should say to you - "you have never had the misfortune of experiencing a real Kip 10 for four hours, and I am glad for you. I don't want you to have one." I am sorry if this comes across as mean... just consider yourself one of the lucky ones... |
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Title: Re: On Kip 10's.......... Post by Axis on Oct 21st, 2002, 2:14pm At kip 10 for 30 mins to an hour and a half 2 times a day And at kip 7 to kip 8 another 3 times a day and If I'm lucky thats it, Some times I might get 1 or 2 kip 3 to kip 5's along with the rest. But I've been lucky enough to never get a kip 10 for more then 2 hours and thought of all kinds of ways to kill my self then. Until this year I've never been to the ER with a CH. And I too can take more pain then most, I took a 9mm SIGSW to the chest back around 1985, And I thought that was as bad as pain could get until they got me to the ER and stuck that damn tube into my side and entered my left lung to drain it, And then I thought that tube was by far the worse pain in the world until this year, This is my frist year since my CHs started (at age 21 now 39) That I have had a real kip 10 and I beg, cry, scream,rock,bang my fucking head and try to turn myself into a snowman with the cold water and ice and thank god every day for not makeing me suffer from kip 10s till now, As far as someone saying they can still do what ever with a kip 10, Well who are we to say they cant or that they dont have real CHs ? I have been thur pain that would make some beg for death and yet I've seen friends go thur pain that would make me shoot myself ( one friend has 3rd degre burns over 80% of his body from backing his dump truck into a power line and I took care of him for almost a year after his 5 months in the burn unit which I set with him and saw frist hand a pain I know in my heart would have been way too much for me to deal with. crap starting to ramble here with my little shadow, The point I think I'm tryin to make is that what I may think is the worse pain in the world to me, May only be a kip 4 or 5 to someone else and therefore I could not and would not be willing to sit in judgement of someone else's pain or what they should or should'nt be able to do just because I cant at that same LvL. Rod. |
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Title: Re: On Kip 10's.......... Post by pjbgravely on Oct 21st, 2002, 4:27pm I had my first Kip 10 for 1 hour when I became insane from the pain and was found screaming in the night . I had the ch for anouther two hours but I don't really remember anything until the paramedics gave me large amounts of o2. PJB |
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Title: Re: On Kip 10's.......... Post by Jim R on Oct 21st, 2002, 10:49pm Personally I find the KIP scale inadequate - I have CH's that really don't fit into any or fit into many all at once...I have had 4 and 5 and 6 hour KIP 10's if that's what we are going to rely on to describe them, and yes, I was in ER's getting the usual massive shots of demerol or morphine or droperidol with phenergan or compazine. Yes, I've been puking with KIP 10's and yes, I've had up to 13 CH's a day. Yes, sometimes I have these without tearing and sometimes with, sometimes with nostril blocked and sometimes without, sometimes with pupil unreactive to light and sometimes without. And YES, I have CH's that don't always fit the mold.... We are NOT all alike, but we have common ground and, I think, a common nature to the pain, if nething else. At what we call a KIP 10, I don't want to live. I would DO ANYTHING, TAKE ANYTHING, to stop the pain I would also end it all if there was nothing to help and I didn't know the pain would end.... Guess that fits a KIP 10... - Jim R |
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Title: Re: On Kip 10's.......... Post by TerryS on Oct 22nd, 2002, 8:34pm I guess I have been real lucky I haven't had a Kip 10 in two years. I think the longest Kip 10 I had was 2 hours. The pain was so bad I had tears streaming down my face and yes I had the same wish Just do it and end it all. Thank God I didn't. Now I'm Chornic back then my cycle only last for two months. The last lonest brake I have gotten is five days. So far my Neuro hasn't done didly for me. I get 3 through 8 Kips almost every day. Tomorrow I see my family Dr. The best med he has giving me is Stadol ns and he what's me off it because of the side effects. Donna please don't worry about being put to sleep, God Is With You and all your friends are with you too. We love you very much and hate to see you in so much pain. God Bless TerryS |
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Title: Re: On Kip 10's.......... Post by Mark C on Oct 22nd, 2002, 9:26pm Yup, what yall said...............Mark |
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Title: Re: On Kip 10's.......... Post by StanTheMan on Oct 23rd, 2002, 10:47am This is an interesting thread -- I too have found the Kip scale somewhat inadequate at times -- no disrespect intended and I do think it's a good reference point in general. Question: If I have never felt suicidal or banged my head on the wall during a CH, does that mean I've never exeperienced a Kip 10? (I lost a brother to suicide 22 years ago, so I know first-hand what that does to families. Thus, no matter what I go through, suicide will NEVER be an option.) During my worst CH's, I've danced, paced, rolled around on the floor or bed moaning / screaming, cried, wondered "why me?!?!", etc. Can't function at all. But no head banging, no suicidal thoughts, and no ER trips (for me that would be futile - by the time I got to the hospital, checked in, and finally looked at, I'd be back down to a Kip 5 or 6) Not trying to pass judgement or anything like that, but just wondering... :-/ Regards to all and wishing PFDAN. StanTheMan |
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Title: Re: On Kip 10's.......... Post by Bob P on Oct 23rd, 2002, 11:22am Stan, Here's how my scale goes. 0 = no attack 10 = attack No number in between. When an attack starts, it takes maybe 5 to 10 minutes to reach full strength (that's a ten for me). The only variable I get is the length of the attack. With the medication taken in time it may last 15 minutes. If not, it can go as long as 1 1/2 hours. I don't pace or bang. I sit in a chair, leaning forward, with an ice pack on my head or back of my neck. The only movements I make are to move the ice pack or wipe the tears and snot. I do glance at the clock every once in a while to see how long it's been. I've had attacks that last longer than most and wipe me out. I've gotten sick from the pain and too much cafergot. I have begged God to "make it stop" during the long ones. The Kip scale tries to be objective about something that is subjective. I woundn't try to classify myself using it. |
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Title: Re: On Kip 10's.......... Post by Jim R on Oct 23rd, 2002, 11:54am Bob, I agree - mine usually go from 0-10 (or whatever pain level I'm going to hit in that CH) in 5 min. or less and end the same way - it's the in-between that's very variable and as I've said, have had occasional 5-6 hr ones (or cascading ones that act as one long one) that have sent me to the ER. Also, occasionally I'll have one that goes to say a "7", stay there for an hour, and then decide to go to a 9-10 and stay there for a few more hours - these are the times I lose it and end up in the ER... I think the KIP scale is just as you said - trying to make objective (for it to be any use at all) what is inherently subjective - pain. Jim R |
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Title: Re: On Kip 10's.......... Post by Slammy on Oct 23rd, 2002, 12:20pm I agree with Bob. There is no in-between with my clusters... Maybe I am fortunate that they rarely exceed an hour in duration, and those are the ones that wake me up in the middle of the night. I have never banged my head against the wall, or journeyed to the ER, knowing that they will end before I could receive any help from the ER staff. Like Bob, I will sit in a chair, bent over, squeezing or pressuring different areas of my neck and head. However, and especially the middle of the night chs, I will pace through out, even on the floor, on my knees, cradling my head on a pillow, pressuring different points of my head. I will even bite down on various teeth, trying to shift the pain. If I am lucky, I am awake during the aura, and I can abort them prior to them becoming full bore clusters. That's it in a nutshell, always the same, for 28 years! :-/ Slammy 8) |
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Title: Re: On Kip 10's.......... Post by Charlie on Oct 23rd, 2002, 4:29pm I think you have it about right. Mine got to what must have beee a ten in less than a minute. As it built up, I headed for my cool, dark, quiet and filthy kitchen to sit and bob up and down, twist my head in a dozen ways, and moan. I wish I cold convey that about 75 to 80 percent of the time, the circulatory technique would, after five or ten minutes, grab hold of the pain and "drain" it just like it did when I let it run its usual 20 minute course. The damn thing works. Now and then it would work in a few seconds. I kid you not. I know I got off topic but it gets to me that others here haven't had this kind of success. Someone like Ueli would be all it would take. Charlie |
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Title: Re: On Kip 10's.......... Post by suzy617 on Oct 23rd, 2002, 7:45pm Charlie, I tried your technique the other night but after a few minutes I gave up, I found it really hard to concentrate but I'm going to try again. Havent had a HA the past 2 nights so I'm hoping my cycle is ending now. This was a tough cycle too, damn... |
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Title: Re: On Kip 10's.......... Post by kim on Oct 23rd, 2002, 9:20pm I believe that the dilemna lies not in tolerating the "KIP 10". I believe the dilemna lies in taking the godamned time to know each individual and their interpretation and/or ignorance of what exactly that is. It only takes time. Time seems to be FUCKING AROUND, ehh? Or perhaps its only the people who are. |
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Title: Re: On Kip 10's.......... Post by Jarvis on Oct 27th, 2002, 3:03pm Donna, I dont think anyone can really tolerate a kip-10 but we deal with it. I would like to propose a new level for kip10 plus. seems some here have been close. K10 pain level major, no er cause you know it wont work, suicide not an option cause its gonna be over however it really doesnt matter if you live or die, possible writhing on the floor or slamming your head with whatever, Extended duration of time. life is beyond beautifull after they are gone. everyone get the hell out of the way and have no pity cause it wont help, above all dont talk to me or touch me. maybe later wecan talk. whats the time now. dont change the light or vary the sound. dancin with the devil is an understatement. I personally would consider that makin love. tolerance not an option just get me through it lord. Damn that hurts moan or holler hurts too much, deep deep concentration, become one with your pain, 2 hrs deep sigh......phew maybe its going down to k7 Oh damn here we go again.......repeat...repeat..etc... 18 to 20 hours later exhaustion beyond compare sets in as you admire how absolutely beautifull life really is without any pain and I say devil is that the best you got. I tell you what let me rest maybe an hour and I will fight you again. The he cheats and gives only a half hour and days weeks sometimes months and years roll by. Then you rest for the next battle to come. and come it will. In the meantime life is incredibly wonderfull, the sky is a deeper shade of blue and everyone sure looks good today. So phooey on the time limit to these pains that many share. Aint nothin to it after cause my mind says it never happens. Been in the battle only 25 years now. watchedthis site a long time only just decided I would put in my 2 cents. Haviing a current cycle now k8-10 but only having 5 or 6 a day seldom lasting more than an hour. maybe I am normal now. Life is good peace. PS; just tryin to counter the time issue on clusters, I know I soundpretty bad but I feel good now. |
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Title: Re: On Kip 10's.......... Post by captdshea on Oct 27th, 2002, 6:56pm Charlie, were can I read more about your tech. I'll try anything once.. Thanks in advance for the tip. David |
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Title: Re: On Kip 10's.......... Post by Charlie on Oct 28th, 2002, 12:24am Sorry I didn't look sooner. Here is the technique. This is the whole thing: Dr. Wright's Circulatory Technique This is not transcendental meditation, imagery, relaxation, or anything psychic. It's entirely physical and takes a lot of work and concentration. Give this method a good workout. It’s not a miracle, but it’s been very helpful to many. When I was diagnosed, my neurologist said to treat this as a vascular problem. I was told to concentrate on “redirecting” blood circulation in order to retard flow to the head. This is done by trying to “send” blood into the arms and hands or other extremities. When properly done, your hands will become warm and redder with increased circulation. I also found it easier to concentrate on one hand. This relieves just slightly, the pressure on the affected vessel, which indirectly causes our pain. We all have this ability but it can be exhausting. I was often able shorten my attacks from about half an hour to no more than a few minutes. Sometimes, when awake, I could entirely abort the attack IF I KEPT AT IT. I would suffer only minor discomfort instead of excruciating pain. Do not stop just because your hands are warm or redder. Keep this up until you are sure it's subsided. If you let up or lose concentration, it’s very hard to restart this process. It may take some time for this to take hold but when this works, the relief is almost immediate. I learned this from the doctor in a few minutes. He simply told me to concentrate on keeping blood away from the head. He thought the easiest is the arms and hands but any place that works for you is fine. He said to think of it as "filling your hands" with redirected blood. It’s important to keep at it THROUGH the pain. This will be difficult, but it’s the only way this technique will work. I like to keep at it a few minutes longer than seems necessary to insure success. This will not always work, but I think it will always have at least some effect on the severity and duration of the attacks. It can be useful between medications or while waiting for some other drug to take effect. All it takes is a little practice. It was fairly easy to learn and what I'm writing here is more than I got from the doctor, as I've drawn from my own experience. When awakened in horrible pain, it’s very hard to focus, but I think it’s always worth a try. This costs nothing but hard work, is harmless, non-invasive, and it gives us a fighting chance. I wish you the best of luck - Charlie Strand |
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Title: Re: On Kip 10's.......... Post by Donna on Oct 28th, 2002, 11:47am When I had a Kip 10, there was no choice BUT to go to the ER. There was no thinking about whether or not they could see me on time ( or anything else-just no thinking possible), or that they wouldn't be able to help me. It was do or die. A whimpering, mindless human being. Beyond rocking or pacing. And it usually did subside while in the examing room, waiting to be seen. My headaches also went from 0 to whatever (usually 8 or 9) within a few minutes. Never had shadows. And being an oldtimer without meds, there was no hope for anything else that would help. To me, a Kip 10 means the ultimate pain that leaves you mindless to anything else but the agony, and you would do just about anything in the name of relief. |
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Title: Re: On Kip 10's.......... Post by Jarvis on Oct 30th, 2002, 9:58pm Due to necessity I once delivered a child without pain meds too..................not sure if she had any though |
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Title: Re: On Kip 10's.......... Post by David Shea on Oct 30th, 2002, 10:30pm well, What may be a kip10 to you, maybe a kip 7 to me. Viseversa. When my KIP 10 is over and I fall to the floor after paceing aimlessly for the last 45mins. I think I could not take that again, if the pain was a little worst surely I will do something drastic.. But we take it again and again and we do nothing drastic. You cannot measure pain. I'm so sorry for those of you who suffer 4hrs. with this curse. I just got hit pretty good with A 45min HA , I can dry off stop shakeing and start breahing again and come here and write it down here. This is what is so great about this site. Thanks for letting me write it to you. Dave |
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Title: Re: On Kip 10's.......... Post by LittleMmonkey on Oct 31st, 2002, 12:58am So I guess I would be at kip one.....shadows here and there, but I almost dont know they are there if I get up and do something...life is as beautiful as every other normal day...and I am happy to only be feeling the tickle of a shadow, and I do hope everyone else is pf soon dawn |
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Title: Re: On Kip 10's.......... Post by David Shea on Oct 31st, 2002, 2:06am I'M HAPPY FOR YOU dAWN ( caps sorry ) David |
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