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Topic: I can not stand it any more!!! (Read 4228 times) |
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Scotty_Dog
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Say, what is that strange feeling in my ARRRGGG!!!
 
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Re: I can not stand it any more!!!
« Reply #75 on: Aug 3rd, 2002, 12:41am » |
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I am not looking for pitty, and I have had CH for over 20 years. I have gone to Doctor after Doctor and every drug I got from them did nothing for the CH but add rebound headaches to it! the only thing that takes mine away during a cycle is morphine! nothing less does it. Also, I get one every time I try to sleep, so for 6 months or so, I live on less than 2 hours of sleep a day, (all half hour naps between demon hits). I have lost jobs because I could not function at all, I have had bills pile up for months and emergency room visits for relief are not cheep when you are unemployeed and without insurance.
No, I do not want pitty, I have a wonderfull wife and a great son who love me and try to help me through the bad times, but really! No 2 people are the same and none of us knows the pain of another. Please do not generalize people, that is a form of bigitry, and I DO CARE about you and I am glad you can cope all the time.
Sorry if it sounds like a rant, it is that I do not like to be called a quiter, lasy, winer, loser, complainer, and the like, OK?
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| « Last Edit: Aug 3rd, 2002, 12:49am by Scotty_Dog » |
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Doc says,
"the pain is all in your head"
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sailpappy
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Re: I can not stand it any more!!!
« Reply #76 on: Aug 3rd, 2002, 1:19am » |
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;D ;D Scottie, Your story sounds just like mine, Only I was severe chronic for 33 years with a daily average of 7 but when I gave up my 13 years sabatical from the medical community my new neurologist put me on Oxy-contin instead of the morphine I use to get for the same reason you get it, to knowck myself out for a few hours and get some rest then back to the battle,
I'm on a cocktail of 40mg of Oxy contin every 12 hours .50mg of xanax 3 times a day and .50mg of zoloft 1 time a day, I have been totally pain free for 10 months now and it's like a whole new life. Just food for thought! SAILPAPPY;D ;D
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Jim R
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Re: I can not stand it any more!!!
« Reply #77 on: Aug 3rd, 2002, 5:59am » |
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Now, this is interesting. When i ended up in the ER last year, they shot me full of morphine and it made my CH much worse! The only thing that took it away after this shot was a shot of droperidol. Now, Vicodin DOES work for me and so does Percocet DS (if I can keep this down - more times than not, I throw it back), Stadol, an inhalant, which my neurologist prescribed may or may not work - I never could figure out how to get it up the affected side, as instructed, when that nostril is completely blocked!! BUT, the main thing with all the above is that they are very highly addictive, as I'm sure most of you are aware. To be used with extreme caution only...
I am back in cycle, early apparently. I've had at least one CH/day for the last two weeks and it looks like I'll be back on lithium soon. Have a doc appt. coming up... PFDANS to you all
Jim R
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"Hammer of the Gods..." (pounding on my head...) and isn't Bowie great?!
Proud member of OUCH
Episodic Clusterhead since 1978
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sailpappy
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Re: I can not stand it any more!!!
« Reply #78 on: Aug 3rd, 2002, 12:01pm » |
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;D ;D Jim,
Tha active ingrediant in both the products that you mentioned is Oxycodone and hydrocodone, Oxy contin is oxycodone with ou the added buffers, you might try it my friend, first read my old post to see how against using any drug I was, but at 15 attacks a day I couldn't take it any longer, this med does without a doubt help me, I'm an oddball with the meds, it would take you days and days of reading my old post to get to full picture but I don't think you would ever find a person that made the kind of stand against using drugs of any type, I was drug free for 13 years prior to giving in to this and 10 months later I'm still fighting the guilt syndrome, but I'm painfree while I feel guilty! vPappy
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jonny
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Re: I can not stand it any more!!!
« Reply #79 on: Aug 3rd, 2002, 2:41pm » |
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Is this the only thread?
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RichardN
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Re: I can not stand it any more!!!
« Reply #80 on: Aug 3rd, 2002, 3:56pm » |
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Must be............computer ghosts maybe??
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I can live with the beast as long as I don't have to "dance" with the bastard.
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RichardN
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Re: I can not stand it any more!!!
« Reply #81 on: Aug 3rd, 2002, 3:57pm » |
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Must be............computer ghosts maybe??
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I can live with the beast as long as I don't have to "dance" with the bastard.
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RichardN
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Re: I can not stand it any more!!!
« Reply #82 on: Aug 3rd, 2002, 3:58pm » |
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Must be............computer ghosts maybe??
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I can live with the beast as long as I don't have to "dance" with the bastard.
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sailpappy
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Re: I can not stand it any more!!!
« Reply #83 on: Aug 3rd, 2002, 4:56pm » |
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;D ;D Pretty spooky stuff, extremely errie that the auto archive ahould pick this moment in timed to go Haywire, or maybe this is the auto archive time?
Pappy
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Charlie
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Re: I can not stand it any more!!!
« Reply #84 on: Aug 3rd, 2002, 5:02pm » |
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It's the famous Kluster Virus.
Sorry guys.... 
All seriousness aside, the infection here is dead.
I never felt so clean, so fresh before...... 
Recovering old Charlie
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There is nothing more satisfying than being shot at without result---Winston Churchill
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oringkid
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Re: I can not stand it any more!!!
« Reply #85 on: Aug 3rd, 2002, 5:23pm » |
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Am I the only one seeing only this post left?
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MOB
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Re: I can not stand it any more!!!
« Reply #86 on: Aug 3rd, 2002, 5:25pm » |
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I know you guys need to get focused but don't ya think this is taking it a little toooo far 
And I'm really supposed to believe the bit about 'Clean Old Charlie' - yeah right !! 
Best Wishes,
Michael (MOB)
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Kezz
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Re: I can not stand it any more!!!
« Reply #87 on: Aug 3rd, 2002, 7:56pm » |
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Elaine,
Although I do agree that some people blame EVERYTHING on CH I do believe that you are being a bit insensitive as others have mentioned. You would already know this but CH can lead to suicide so when people blame Clusters for everything it usually means that they are at the end of their rope and don't know what else to do. When you feel pain THAT bad for months and years on end I dont' believe that you know that there is anything else there to blame. You don't see anything else. All you can think of is the pain. Well that's all I have to say. Have a nice day. Cya.
Kezz
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jonny
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Re: I can not stand it any more!!!
« Reply #88 on: Aug 3rd, 2002, 10:06pm » |
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Shut up, Kezz!!!
............jonny
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paul_b
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Re: I can not stand it any more!!!
« Reply #89 on: Aug 3rd, 2002, 11:50pm » |
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This thread has turned into the Great Clusterhead "Yarn" ;D ;D Will someone tell me why I am in such a great mood? NO there is no hidden drug in my system, only IM. As the epic continues.........(next)
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Scotty_Dog
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Say, what is that strange feeling in my ARRRGGG!!!
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Re: I can not stand it any more!!!
« Reply #90 on: Aug 4th, 2002, 12:57am » |
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Thank's for the info sailpappy.
I just got back from the ER this morning because I could take it no more. Got my shot and had some relief for about 3 hours, (blessed rest) in the ER. The thing that bugs me most about this aprouch is that they do not let you go home till the effects of the shot end. (the system, ugh!). Anywho, they gave me 20 tylox to hold me over till I find a doctor here in the area to treat me.
My biggest problem is that I develupted high blood presure last year and I got a stint put into a major artery last month because of an 80% blockage there. They put me on Nitro for the presure in my chest and that is what trigered the beast out of it's hibernation.
My blood presure this morning was 178 over 117 with a heart rate of 123bpm. That was taken when I first woke up! If you are not aware of how high that is, it is dagerously high. I know that having blood presure that high prevents me from trying Imetrex because that drug raises your blood presure dramaticly within minutes.
On the bright side, I am working on a sispence noval, (thank God for spell check) and one of my main caractors has CH. The book will be called "The Satanic Squad" and it is based on things that happened in my life back in the 80's. I hope it sells well and brings awareness to the world about the Beast that we all face.
I thank God for this site, this great group of people that I can comunicate with who know what I am going through, and I even apreciate people that dare to start threds that piss me off enough to post.
Love you all and God bless.
PS: Does anyone think my picture looks like the beast and me, i did it in photo shop.
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| « Last Edit: Aug 4th, 2002, 1:04am by Scotty_Dog » |
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Doc says,
"the pain is all in your head"
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Little Deb
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Re: I can not stand it any more!!!
« Reply #91 on: Aug 4th, 2002, 9:30am » |
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Hhmmmm... I am a newbie to this site. 24 year sufferer. I come here for support. And to find out about treatments you all have tried and to help find a cure all. But I would also tell you this thing has major affected my life, my job, my ability to be a good mom, wife and housekeeper, my ability to be a good nurse, etc. When I am not in cycle, I can not blame CH. But when I am, CH are certainly to blame because they rule every minute of my day and night. I certainly am not ready to give up life, but I certainly feel like stabbing myself with a butcher knife when nothing else works.
So I ask for replies from all you old timers.
Has anyone tried to get hit with a stun gun during an attack?
Has anyone gotten a shot in the base of their skull to block the pain? My new doc says he can try that!
Has accupunture worked for anyone?
I take 60 mg of Procardia a day. Nifedipine. It helps prevent, but I still have breakthroughs. Then I take Zomig, and I have Imitrex inj., but haven't tried them yet.
How about an exercism?????
Witchcraft???
I would like some support here. I was chronic early in life. 7yr. remission, then every 2 yrs for 3-4 months. Don't smoke, but feel smoke is my trigger. White, female, 38 yrs old, hazel eyes. I don't fit the usual profile.
I have a great deal of muscle tightening this time, won't go away. I can't tell if it is a side effect to meds, or CH related. I just started Wellbutrin, and also take Paxil. Feels like I have lockjaw through my whole body. And when I use a muscle, I get cramps. Help??? My new doc wants to do labs, then try Neurontin.Well, that's it in a nutshell.
Elaine, Ted, Pappy, and all. I understand what you are all saying. Bottom line,
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Little Deb
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Re: I can not stand it any more!!!
« Reply #92 on: Aug 4th, 2002, 9:31am » |
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Bottom line, thanks to all of you for being here ;D 
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jonny
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Re: I can not stand it any more!!!
« Reply #93 on: Aug 4th, 2002, 10:10am » |
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Chronic at 14yrs old, will be 40 next month.
Dude hit me in the ass with a stun gun one time, he really regreted that move.
What this has to do with CH?.....I dunno and I dont give a shit.
.....................jonny
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Little Deb
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Re: I can not stand it any more!!!
« Reply #94 on: Aug 4th, 2002, 10:49am » |
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Don't give a shit????????
How nice is that??
Maybe, just maybe, a stun gun could knock a CH in the ass. Maybe a little surge to the heart would fix the problem
If we are searching for answers, should we not be able to brainstorm without you not giving a shit??? 
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don
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Re: I can not stand it any more!!!
« Reply #95 on: Aug 4th, 2002, 11:40am » |
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Chill Deb,
Some things are just not worth getting twisted about.
If we are searching for answers then lets be reasonable.
Stun gun is just plain stupid and dangerous.
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Little Deb
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Re: I can not stand it any more!!!
« Reply #96 on: Aug 4th, 2002, 11:43am » |
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I'm afraid I would have to disagree, Don. The only thing stupid and dangerous is a CH. Oh, and all the wonderful medications we take for them.
Now be a good supporter, and answer some of my other questions.
Many thanks in advance.
Deb
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Little Deb
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Re: I can not stand it any more!!!
« Reply #97 on: Aug 4th, 2002, 11:43am » |
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I'm afraid I would have to disagree, Don. The only thing stupid and dangerous is a CH. Oh, and all the wonderful medications we take for them.
Now be a good supporter, and answer some of my other questions.
Many thanks in advance.
Deb
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jonny
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Re: I can not stand it any more!!!
« Reply #98 on: Aug 4th, 2002, 12:42pm » |
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When you can tell me what the "Heart" has to do with CH we can talk.
Do you have mental issues?
....................jonny
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Ted
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Re: I can not stand it any more!!!
« Reply #99 on: Aug 4th, 2002, 1:49pm » |
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Never tried a stun gun. Don't plan to either. However, there's a doctor in Italy that's had great results with several intractable chronic clusterheads (I think they were all intractable, but at least one was) that sends minor jolts of electricity into a certain part of the brain and as long as the device is used they've all been in remission. the article on that is probably in the OUCH library but is somewhere in the archives of the old board.
Some people here have had some success with the nerve block with the shot in the back of the skull. Don't remember how many had it help though.
Accupuncture has worked for almost no one with clusters.
Exorcism? I don't think anyone should be excercising while having a circumcision. Seems pretty dangerous.
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| « Last Edit: Aug 4th, 2002, 1:56pm by Ted » |
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