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Title: Hmm : On a scale of 1 to 10: how is the pain! Post by IronHorse on Jul 31st, 2004, 10:56pm That was the question and I thought to myself 1-10, relative to what? A CH was a 10 relative to a 5 being burned with a cigaratte lighter. I never got a warm fuzzy feeling that the Drs knew the degree of pain we go through. In the beginning, I will tell you- nothing worked including oxygen and Hi- powered narcotics,(which was the first prescription) then I found a little relief from Sansert and Migranal, but still had the headaches. Then I actually got the name of Imitrex from this web-site and the Dr. prescribed it to me and it was a godsend. When I start a headache, as you know it only takes a couple of minutes to become excruciating. A shot of Imitrex and within 3 minutes- it is gone!!!!!!!! I was so happy with the Imitrex, I actually cussed the "Beast". With confidence I took the shot and said outloud, "Hey beast, your sorry ass is mine now!" "I am fixing to stomp your ass and there is not a damn thing you can do about it!"....My wife warned me and I really hate to be cocky, especially with the CH's, but damn, it felt good and like I was in control. Nevtherless, I have had a little problems with rebound headaches, but for the most part it works very well (Unless I get more than one daily). My cycle typically last 6-8 weeks, every year and a half. I haave been getting them for 20-25 years and hope to God I outgrow them. I am thankful that I have an understanding wife, who suffers with me and frankly, I don't know how I ocld have made it without her. That is why I think group support is a good idea. |
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Title: Re: First timer- Post by ex_pat_asia on Jul 31st, 2004, 11:41pm IronHorse, I am too much a newbie to offer a certified welcome but I'm sure you are and I can vouch that you will find lots of "group support" here with much info to delve through. Congrats on discovering the "trex" chain buster. It is a godsend, but restrictions on the amount used, the expense, and a tendency for my attacks to "breach" attempts at aborting them suggest that it alone is not a silver bullet. I would urge you to consult your Dr. and read the threads here about prophylactic (preventative) strategies as well. Hope you have many pfdan - |
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Title: Re: First timer- Post by IronHorse on Aug 1st, 2004, 6:08am Ex Pat Asia: Thanks and I would like to off that I am taking Verapamil (240 mg ER), nevertheless, it is the first time in 25 years a have found any type of substantial relief, and I am relieved. Good luck |
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Title: Re: First timer- Post by IndianaJohn on Aug 1st, 2004, 9:28am Welcome Ironhorse, Imitrex is what works for me too. I have to fight like hell with my insurance company to get the amounts I needs, but with a good doctor it can be done. Also I take 240mg Verap 2X daily. you can also get $coupons from Imitrex.com. I ahve been in my cycle since May so I'm working on try to end the cycle. Good luck to you and welcome. |
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Title: Re: First timer- Post by IronHorse on Aug 1st, 2004, 7:28pm Indiana- I am not a doctor but I used this tip form this website and have been splitting the dose- 3mg per CH and it seems to work well. "Extending your Imitrex Posted by DJ on June 11, 1999 at 11:22:04: Those of us that depend on Imitrex to get through our headaches know: 1) how expensive it is 2) how hard it is to get in the quantities we need 3) that we are only SUPPOSED to take 2 shots in a 24 hour period (2 shots = 12 mg of solution) 4) that using it on a regular basis MAY cause some rebound headaches I'd like to share a trick I use to "get around" some of the above listed points and extend the use of my precious Imitrex. Please understand that I am NOT a physician so I have no authority to tell you to do this for yourself. I am simply giving you something to think about. Take the information for what it's worth. I just got so tired of fighting with my Doc about the number of kits he would prescribe to me. Ok, to sort of "set the stage". I take the limit of two auto-injectors of Imitrex in a 24 hour period like this. Each syringe of Imitrex that I'm supposed to auto-inject myself with contains 6mg of solution. That means that the most solution that I'm "allowed" to inject into my system in a 24 hour period is 12mg. Follow me? Here's what I do... 1) I load the bottom part of the injector pin (the part that has the syringe in it) just like I'm going auto-inject myself as normal. 2) Once it's out of the case, I unscrew the syringe part of the pin so that it is again in two pieces. This exposes the top rim of the syringe (barely sticking out of the bottom half). 3) I use my fingernail to pull the syringe out of it's holder. I now have the syringe all by itself in my hand. 4) I remove the label from the syringe (or peel it back) so I can see the amount of solution is in the syringe. 5) I manually put the needle in my arm and use a Q-tip to manually push approx. one-third (2mg) of solution into my system (2mg - 3mg depending on the severity of the CH) 6) For those of you who don't like needles much, this may sound like torture, but it's not that bad. Really. It's a helluva lot easier than suffering from the attack! I've experimented with the amount of solution to give myself but have found that one third of the syringe at a time will get rid of my headache in approximately the same amount of time that the full 6mg at once (maybe just a few minutes longer). The important part of doing it this way is... now my Imitrex kit that is supposed to last for only TWO headaches can get me through SIX headaches and I still don't go over the 12mg limit in a 24 hour period!! Cutting down on the amount I use for each headache also seems to cut down on some of the rebound headaches that I noticed when I injected the entire 6mg at once. What do you think the chances of us getting Glaxo Wellcome to manufacture some 2mg and 3mg auto-injectors for us cluster sufferers is? LOL, yeah, right. If you have any questions about this, don't hesitate to email me." |
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Title: Re: Hmm : On a scale of 1 to 10: how is the pain! Post by BobG on Aug 2nd, 2004, 3:59am on 07/31/04 at 22:56:17, IronHorse wrote:
The kip scale is for cluster pain only. It is not comparing cluster pain with burns, cuts, childbirth, broken hearts or death in the family. A kip-10 for you is the worst cluster pain you have ever felt. All other levels of cluster pain is compared to that kip-10. If tomorrow you have a new, higher level of cluster pain then that is your new kip-10 and moves the old kip-10 down in ranking. Note: nobody has ever felt a kip-10+ and lived to tell about it. |
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Title: Re: Hmm : On a scale of 1 to 10: how is the pain! Post by ExPat_jac on Aug 2nd, 2004, 4:34am >> Note: nobody has ever felt a kip-10+ and lived to tell about it. wanna bet? :'( |
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Title: Re: Hmm : On a scale of 1 to 10: how is the pain! Post by BobG on Aug 2nd, 2004, 4:51am on 08/02/04 at 04:34:47, ExPat_jac wrote:
Yes. On the kip scale: Pain level 10 Major pain, screaming, head banging, ER trip. Depressed. Suicidal. See the last word? That is a 10+. |
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Title: Re: Hmm : On a scale of 1 to 10: how is the pain! Post by IronHorse on Aug 2nd, 2004, 6:17am That is my confusion- I have not noticed a variety in the level of the CH pain over the last 25 years. Its all head banging, screaming, overdosing on narcotics level, which I guess is 10. I get depressed and really have to ask, what difference does it make? I have never had a bearable CH. |
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Title: Re: Hmm : On a scale of 1 to 10: how is the pain! Post by Superpain on Aug 2nd, 2004, 3:52pm But since I won't go to the ER or kill myself, does that mean I'm incapable of a K10? |
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Title: Re: Hmm : On a scale of 1 to 10: how is the pain! Post by Kris_in_SJ on Aug 2nd, 2004, 8:33pm No, my dear Chris. It simply means that you are smarter and stronger than THE BEAST. He sends you a 10, but you outsmart him with a 2 (O2, that is). *smile* Kris |
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Title: Re: Hmm : On a scale of 1 to 10: how is the pain! Post by IndianaJohn on Aug 2nd, 2004, 8:34pm I won't go to the ER or kill myself either. I just figured that I was too damned stubborn. But I will say that the thoughts are there. I just refuse to act on them. Maybe it's my own way of taking some form of control over something that is trying to control me...... As for the pain scale..hmmm...I once broke my arm bike riding when my kids were little. I picked the bike up with both arms, slung it over my sholder and carried it a half a mile home. That was about a Kip5 P.S. thanks Ironhorse, again I'm being stubborn and haven't "graduated" to the shots yet. Another control issue I suspect. I have been sticking to the nasal sprays, though I am contemplating trying to find a method to extend them as well. I must admit that waiting for the Trex to work this way can be agonizing. It takes about 5 to 10 minutes to work with a whole lot of dancing. Best wishes to all, John |
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Title: Re: Hmm : On a scale of 1 to 10: how is the pain! Post by ExPat_jac on Aug 2nd, 2004, 10:06pm >> See the last word? That is a 10+. Suicidal ? Shit....all the time... Will it ever happen? No. Thats why I said....."wanna bet" ? Major pain, screaming, head banging, ER trip.... been there...done that.... Last night, by far the worst yet.... (and I can't *tell* you how many times I've said those very words....) Just when I think I know what a "10" is....I learn a whole new meaning for the word "pain". So...while I was joking in my reply....there are 10+'s and I've been there....it's just amazing what the body will take if you're bound and determined not to fold..... and I'll be G&* D%^Med if I'm going to fold..... right now, it's 9:00am, and already the beast is a banging at the door....it's going to be a VERY hot day today, and he sure does love the heat...... Suicidal ? You bet! Will I ever pull it off? Humm....not in this life time...after 30 odd years living with the beast, I think I'll hang around some more and see just how bad he can be.... (just don't tell my srink I wrote this :) ) ExPat_Jac |
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Title: Re: Hmm : On a scale of 1 to 10: how is the pain! Post by UN_SOLVED on Aug 3rd, 2004, 2:13am Well, I can't speak for the rest of you ... but i've stomped my way into the ER and demanded that I be hospitalized for DHE or steriods a few times. I'd say those were KIP 10's !! If I were to be turned away and not helped out .... I wouldn't be here today !! Unsolved *'Suicidal' doesn't mean 'commited suicide' * |
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Title: Re: Hmm : On a scale of 1 to 10: how is the pain! Post by ExPat_jac on Aug 3rd, 2004, 3:47am >> As for the pain scale..hmmm...I once broke my arm bike riding when my kids were little Broken arm?? hahah childs play! Hell, I've had spicy food that's made me feel worse than a broken arm :) I think where the hang up is is the part where BobG made the comment... >> >> Note: nobody has ever felt a kip-10+ and lived to tell about it. Where upon I replied "Wanna bet?" See..thats the REALLY bastardly thing about CH (at least for me..... Jut when I think I've gone through the worst that I ever have or ever could or ever will.... Along comes one for the record books.... Hell, I've sceamed, beat my head aginst walls (shit...THROUGH walls at times if they were wimpy things like plaster board...) hospital trips...'Suicidal' the whole she-bang.... And figured after a few hours when it was over "Wow...now *that* was bad" only to later have one that made that one feel like childs play.... No my friend BobG.....you CAN have and live through a Kip10+ See....the problem is, the scale keeps sliding..... It really is amazing what the body will put up with if you let it..... Thats why some take the swan dive route..... So far, it's not come to that...but if the freekin office boy here doesn't get some more coffee in this place soon....I may use him to see how effectily high this building is should I need to go that route one day!!!!!! :) |
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Title: Re: Hmm : On a scale of 1 to 10: how is the pain! Post by thomas on Aug 3rd, 2004, 11:26am As far as the suicide aspect goes, sometimes it isn't just the kip 10's that make me feel that way, it's the constant battle, that seems to never end and there is no hope in sight. The daily struggles take their toll on your body and your mind. I find myself asking the question "God is it really worth it?" Of course it is, so you're all still stuck with me. ;;D |
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Title: Re: Hmm : On a scale of 1 to 10: how is the pain! Post by don on Aug 3rd, 2004, 12:04pm If a 4 was; One limb being cut with a rusty chain saw while another limb was being gnawed off by a rat and another limb was twisted like taffy and the last limb was covered in fire ants I would put a CH at a 9. If a 4 was: Continuous playing of Wayne Newton ballads I'd put a CH at a 5 |
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Title: Re: Hmm : On a scale of 1 to 10: how is the pain! Post by ExPat_jac on Aug 3rd, 2004, 10:22pm Thomas.... I agree 100%...it's not the pain...hell, in a way I've almost come to expect it...it's the day in day out knowing that it's never going to change...knowing that no matter how "normal" you try and rearange things that your life is never going to be "normal". But you know....I keep doing it.....I figured by this time me and god have this understanding...I get to curse him every once in awhile when he hits me with a really bad one....he gets to play with my head.... (I really think he's coming out ahead on the deal...but what the heck...he gives me kitty cats to play with when it gets too bad...how can I talk bad of someone that would do that?) Don.... hahahahaha compaired to continuous playing of Wayne Newton ballads I'd put a CH at a 3 myself :) Here in Indonesia they have a style of music that the locals call "dang dut" (the sound of the words "dang duk" is sort of the sound of the beat of the music) when they told me about it, they made it kinda of sound like our version of country music.... Yesterday we were walking to lunch, and someone was playing an english music station that was playing...country music...one guy in the group calls "see...*thats* dang duk!" :) So...I guess songs about your best friend running off with your wife, shooting your dog and wrecking your truck...are universal! What a world we live in huh? peace buddies.... jac |
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Title: Re: Hmm : On a scale of 1 to 10: how is the pain! Post by IronHorse on Aug 7th, 2004, 10:01am Lord, Just when I thought the Imitrex injetions were the "fix". Oh, no, I usually get 1 a day in my cycle, and it has been the same for 25 years. I had 4 back to back and I used the strategy of "extending the Imitrix", but I am rethinking that strategy. You guys may think I am crazy, but I think the CH's are similar to a sneeze, in the sense that you always can't suppress them-- it has to happen. In other words, have you been around a bunch or people and it is very quiet, and you have to sneeze...so you hold it with a little snort....you know what I mean...any eventually you have to go ahead and just SNEEZE---- Well, I have this opinion (which may be deemed warped by others) that a CH is the same. I abort the CH time after time with Imitrex, but afer about a week, its GONNA happen come hell or high water. Thats what is happening to me. I finally went to the ER at 0945 and at 1030 got a shot of Reglan (Metoclopramide) which is used to help stomach retention (gastroparesis) associated with diabetes; acid reflux; nausea and vomiting associated with migraine headaches; nausea and vomiting induced by anticancer drugs (chemotherapy). That didn't work so they tried combining oxygen (which didn't work). The at 1045 they tried DHE, intreveneously, and after 30" that wasn't working. Because the hospital wasnt a trauma ward (I assume) they took forever to go to the pharmacy to get medicines each time. The doctor finally walked in and asked how long I had the headache. I snapped two hours and looked at him through bloodshot, watering eyes and asked him if he was familiar with cluster headaches. He said yes and then I told him nothing was working and I wanted narcotics. ( I hadn't had to use them for a couple of years, but didn't care). The nurse then fed me a little of the morphine at a time, (I should have complained about the pain more, but I was being a stupid macho male and said the pain was subsiding, while actually was still in terrible pain), unitil finally it went away, after about 3 hours, (more than likley on its own). Funny thing is that I didn't have another CH for about two days, then they started building up again. Same thing happened last week. So that is my reasoning for making the statement that I think every so often you, are going to have an unrelievable CH in the 10+ scale, no matter what. I am not sadist, but I have resigned myself to "gut up" when this happens and just get it over with---its going to happen..... O well- I am in my 8th week and hope to be winding down. I am going to a motorcycle rally in Colorasdo in two weeks and pray they are over. PS. Don't try and ride a bike with a CH- I tried last week and nearly lost it- but I was out in the boonies and had no medicine...... I am learning a lot from the postings and thank each of you for the feedback. I sympathize with each of you, when you have a CH. I don't think the average bloke knows the terrible pain we suffer. I remember laying on the ER floor, with my head cradled in my hands and thinking 'This ain't right". (I can bench 330 lbs and a black belt in Taekwando and not scared of anything), but is doesn't matter, I was sobbing like a little baby. There has to be some good out of this, doesn't there? Builidng character, I guess?....meeting new people, I keep hoping, but WILL NEVER GIVE UP THE FIGHT. |
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Title: Re: Hmm : On a scale of 1 to 10: how is the pain! Post by thebbz on Aug 8th, 2004, 12:19am I call it about an 8 when I've been hoppin around about an hour and pass out..come to and the wife and neighbors are stuffin me in the truckfor the ER ride..Its a 9 when I beg them to do it.LOL |
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