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Topic: Dealing with Clusterpain (Read 321 times) |
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The mad viking
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Dealing with Clusterpain
« on: Apr 27th, 2003, 5:24am » |
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There has been a lot of questions here about what we do to deal with the pain here over the last months.I dont think about the meds but how we react and what we do until the meds start working.
Perhaps some of the newcommers can learn from us there or we seniors can get new ideas.Think this is worth a try,or?
Svenn 
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| « Last Edit: Apr 28th, 2003, 6:10pm by The mad viking » |
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Mikey
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Re: Dealing with Clusterpain
« Reply #1 on: Apr 27th, 2003, 5:43am » |
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Svenn,
I always go get my bag of frozen peas first thing, then i hold it tight over my eye and temple area and lower forehead. Then i get in position either one of two ways depending on the KIP scale of pain i'm in, i'll either stand and do the dance of shifting back and forth on my legs, pacing and or walking. Then i sometimes sit in a ball and rock back and forth like crazy and just moan and grunt. These seem to be the best coping thing for me untill the meds kick in. Just lots of moving around and grunting with my frozen peas!
Mikey, 
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The mad viking
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Re: Dealing with Clusterpain
« Reply #2 on: Apr 27th, 2003, 6:18am » |
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I`ll put on a CD with my favorite song and try as hard as possible to lissen and focus away from the pain while waiting for the meds to start working.Sometimes it works and sometimes not.
Its not easy but managable
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achinghead
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Re: Dealing with Clusterpain
« Reply #3 on: Apr 27th, 2003, 8:15am » |
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since the imitrex works for me.. I inject and start the countdown and never take my eyes off the clock.. for those of you that it doesnt work for.. I feel for ya... I really do. Incidently.. its been 6 days now(PF)..shhhhhhhh... I dont want the beast to hear that!!
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jimmers
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Re: Dealing with Clusterpain
« Reply #4 on: Apr 27th, 2003, 8:57am » |
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I usually go into my "I gotta get up and run from the pain mode". My wife says I usually say "Oh shit" and immediately get up and start moving. I do anything to keep moving: running, pacing, mow the lawn, anything!(2am. lawn mowings tend to piss off the neighbors)
90% of my HA's are 10's and I do not usually get any forewarning or ramping up. I go from 0-10 in approx. 30 seconds  WTF? Trex seems to work for me but unfortunately it does not work for everyone 
Hopefully sometime in the near future someone will find a cure that works for everyone 100% of the time because no one should have to go through this! Not even once!
Seeya,
Jimbo
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cbolony
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Re: Dealing with Clusterpain
« Reply #5 on: Apr 27th, 2003, 10:05am » |
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before i had imitrex injections i would pace the floors and hold my left side of my face and curse like a mother fucker for about 1 1/2 -2 hours.Now i run for the imitrex
and pace the floors for about 10 mins till the trex kicks in.Thank god for the trex.
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DaveHar
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Re: Dealing with Clusterpain
« Reply #6 on: Apr 27th, 2003, 10:11am » |
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I think I kinda said it in my post but here is a little more discriptive line about it.
Pain hits at about a kip 4 or 5 that a migraine brought on. I crindge into a ball and start rocking and try to fight it off by myself. The ice pack is given to me as I bang my head against anything hard that I can pound the beast out with. The tears start to roll and I beg for it to end, all of it, I just want it to end. The injection comes and within a few minutes I am out cold. I wake up and still feal him dancing in my head but it is only a kip 2 or 3 and I know I have survived another round. Now it is just time to deal with the bruses or cuts from banging my head and punching myself.
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Sean_C
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Re: Dealing with Clusterpain
« Reply #7 on: Apr 27th, 2003, 10:30am » |
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I dont think about the meds but how we react and what we do until the meds start working.
-I go to a dark place
-I pace with my 02
-I talk to myself
-I rub the ice pack from my right side temple to the right side base of my skull continuously until frost bite sets in
-I'm a Mnot a very nice person, so if its winter and late at night I'll stand on the porch in my underwear with the ice pack and 02 (has to be no moonlight, gets to bright and fucks me up) 
-If that doesn't work I'll lay in the snow in my underwear with the right side of my head in the snow.
-If winter and in I'm my truck I will crankthe A.C.
-I have to have complete silence or I freak so I run and hide in a dark place (closet or something)
-If its a kip 50 and the meds arn't working I chant while I pace, usually "please God take me now" over and over usually works
-Came close to taking a fork and ripping my eye out during a kip 50 a couple of times before I was diagnosed correctly
-Been to the dentist begging him, actually demanding him LOL to pull all my teeth on the right upper side because that was the problem I thought prior to getting diagnosed correctly
-If I wake up and the kids are sleeping my wife will pace wth me and rub the back of my neck while I pace with the 02 and rub the ice pack on my head in the dark
-If I have no meds and no 02 and I get hit, its a total different story ;D ;D ;D ;D ;D ;D
Interesting thread Sven.
Sean
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| « Last Edit: Apr 27th, 2003, 10:31am by Sean_C » |
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Roxy
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Re: Dealing with Clusterpain
« Reply #8 on: Apr 27th, 2003, 11:13am » |
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Very good question Svenn.
I spent a year with no meds, no 02, and not knowing about this site. Wish I had been able to read all the natural ways that people here can abort and deal with the pain; it would have been a tremendous help.
Exercising was my method of choice, or the idea of 'redirecting blood suppy', if it was a hit that came during the day. That, and sticking my head in the ice machine while the music was cranked up full blast.
If it was a hit that came at night, it became a totally different story. Like most of the people here, by the time the hit would wake me up, I would be coming up out of bed screaming. Then it was straight to the pacing, cursing, running outside while stripping my clothes off, banging the head ordeal. I never found a way to cope at night.
Now that I have found 02 and trex, life is good again. I use the 02 during the day, and it works most of the time. I keep 7 syringes loaded on my bedside table at night. Now I just pace and curse for the minutes it takes the trex to kick in.
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AlfieAtkins
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Re: Dealing with Clusterpain
« Reply #9 on: Apr 28th, 2003, 11:32am » |
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I use Imagran injections,,,there amazing, jab and wait,-----------GONE, but im allowed only to use the jabs twice a day. The other 4 attacks i pace up and down, moaning like a small helpless child, rubbing my right temple rapidly with my right lower hand, and the same to the back of my head, but the devil sences this after a few minutes and attacks me deeper, Shaking my head from side to side violently while rubbing both my hands in the oppisite direction, i keep swapping but still, nothing can take away this total madness of excrutiating pain.
Good luck to us all. alfieatkins1@ntlworld.com for any advice would be appreciated!!!(8 years sufferer and still going strong)
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Linda T
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Re: Dealing with Clusterpain
« Reply #10 on: Apr 28th, 2003, 11:39am » |
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Run, and I do mean, run for a hot shower. The hotter the better. Aborts most of them but not always. I, like, Jimbo, go from 0-10 in about 30 seconds - so the faster you can get to the shower the better.
Good luck and wishing you all PFDAN always, Linda T
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nancyann
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Re: Dealing with Clusterpain
« Reply #11 on: Apr 28th, 2003, 11:40am » |
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When It first started and they hadn't diagnosed me yet, I ate Ice cream really fast for the cold headache which kind of felt good (numbed it a little) I figured the cold was good so I stuck my whole head in the snow.
When I told the Dr. about this he just looked at me like I had three heads.
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jeffa
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Re: Dealing with Clusterpain
« Reply #12 on: Apr 28th, 2003, 12:54pm » |
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As soon as I feel the onset of one I turn the AC down to 68, go to the back of the couch and point my head towards the vent. Try to figure out how bad it is going to be before I INJECT THE TREX. Then it is 10 to 15 minutes of the dance. If I'am at work, lights off,fan on and then I see if I need to inject. This all depends on how many shots I have taken that day or night.
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aprilbee
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Re: Dealing with Clusterpain
« Reply #13 on: Apr 28th, 2003, 12:57pm » |
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I also run for a very hot shower. I take what ever medication I have and teeter totter to the shower and sit down and curl up in a ball and rock back and forth and tap my feet and sometimes hit my head against the wall, as I sit there I make the water hotter and hotter, to me it feels like the humidity and steam help, but might just be totally in my mind. whatever works right? Of course, if you run out of hot water, it's a totally different story. I've become so dependent on the shower that if I'm at someone elses house and start to have an attack I have to use their shower, kind of embarrassing huh?
My prayers go out to everyone who has to deal with this.
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Charlie
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Re: Dealing with Clusterpain
« Reply #14 on: Apr 28th, 2003, 11:20pm » |
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Catching up here Svenn. 
When this horror hit, especially at night, I went to the kitchen with a wet washcloth, and sat pretty much in the dark. The most important thing was quiet, dead quiet. I'd sit and rock in the chair trying to get the circulatory technique to work. It's harder when getting hit while sleeping but it helped about half the time.
Charlie
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cootie
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Re: Dealing with Clusterpain
« Reply #15 on: Apr 28th, 2003, 11:33pm » |
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AlfieAtkins...hi to you..not sure I've said hi to you yet. Hey have you tried readin up on that imitrex injection tip offer'd on here...I'm a supporter but have read alot of posts sayin it works and stretches out the supply since you only use a portion of eqach injection for each time hit......check up on it or somone here can help you tay ? Tipster Pam
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