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Topic: I can not stand it any more!!! (Read 4230 times) |
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Charlie
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Re: I can not stand it any more!!!
« Reply #100 on: Aug 4th, 2002, 2:16pm » |
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Well Debbie,
All I know is that CH scrambled my brain when it hit. I tried to come up with a reason or a trigger. So far as I know, none exists. After about 11 years, I decided to quit smoking. From my experience, my quitting probably didn't have much to do with CH. It lasted another 11 years before it began to dissipate. For another 11 years (There has to be something to this 11 year thing........) I've been pain free.
The only drug I took, way back in the goofy 70s was Inderal which worked well for me. I'd take this for about 3 or 4 weeks and then stop when the attacks began to disappear. I took too many anti-seizure drugs anyway and Inderal was something I could do without most of the time. I took nothing else for CH but many of these anti-seizure drugs are used for CH and to answer your question: I took Dilantin, Mysoline, and Phenobarbital at the time they began to disappear. Unfortunately, I had been taking those for more than 20 years at the time and CH developed about 6 years into my drug therapy. The newer drugs didn’t begin until the late 90s so the timing is off. Rats.
As for other things: I like exercise...no, I don’t like it but it seemed to help. I think others have had some good results as well. My neurologist's little circulatory technique did wonders from me most of the time. The link for this technique:
http://www.chhelp.org/circ.html
Things I think are nuts are stun guns, tasers, taking weird or dangerous drug cocktails without supervision, and driving railroad spikes in one’s extremities.
Your coming here, no matter how much crap we give you is the best thing you’ve done. We have our fun and take it with a grain of salt. I wish I had something more for you but frankly, CH is something with which we much deal. I’m afraid there isn’t a magic bullet. Believe me if it existed, it would be here and perhaps this board would be even sillier.
Keep in touch. You’ll find that in here, the archives or the guest book, there will be something to mitigate your suffering in one degree or another. I promise.
Charlie
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There is nothing more satisfying than being shot at without result---Winston Churchill
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don
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Re: I can not stand it any more!!!
« Reply #101 on: Aug 4th, 2002, 2:25pm » |
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In and of itself there is absplutely nothing dangerous about CH.
It's what you do with it that can be dangerous.
What is the usual profile??
Does having hazel eyes disqualify some. Wish I would have known! I have hazel eyes.
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Drk^Angel
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Re: I can not stand it any more!!!
« Reply #102 on: Aug 4th, 2002, 5:33pm » |
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I've stuck my finger in a light socket once... Does that count? If ya seriously want to know the effects of a stun gun on CH, mayhaps you should buy a stun gun and give it a try. Never know until you try. Good luck!
PFDAN.................... Drk^Angel
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paul_b
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Re: I can not stand it any more!!!
« Reply #103 on: Aug 4th, 2002, 5:42pm » |
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Stun guns sounds like an Italian thing. What do you think Italy CHers?
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Ree
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Re: I can not stand it any more!!!
« Reply #104 on: Aug 4th, 2002, 7:40pm » |
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Hey Deb if you got questions... please start a new thread... If Jonny picks on you that means you have been initiated into the CH family here...
My hubby hasnt tried acupuncture but there are only a few things he hasnt tried to end a cycle... He starts with Neurontin as a prevent 3 times a day 240 mg I believe then he takes imatrex for an abortive... I have Migraine and to tell you the truth I prefer Zomig. It doesnt kick the crap out of your body like Imatrex does. The muscle problems you are feeling are probably due to that... I never hear the guys complain about that but it kicks my ass... after a few days I feel like I was hit by a bus and usually try to figure out what I did to get muscle pain. Duh??? then I remember the imatrex... what a coincedence... My girl friend says the same thing.
Zomig is great without alot of sides... Dave (hubby) has a little trick he thinks he invented... He takes an imatrex pill before he goes to bed so then by the time his REM sleep starts and an attack arrives he has the IM in his system...hence, shorter less intense attack...Some people drink water until they almost drown themselves.
Some people inhale their car air conditioner at a close range... Not kidding... whatever works for you is golden. But WELCOME we supporters here at CH hate when you get the rough treatment when you first arrive. But you will find jonny (small j by the way) has one of the biggest hearts here... and suffers in a way that only he knows... I am proud to be in his family here.
If ya need a REAL CH supporter you can email me... I dont have CH but Im married to a dope that does... and I know what you are feeling... Hope this cycle is short and treatable... comeback often I will be looking for you... take care and good luck REE (all caps LOL)
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Little Deb
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Re: I can not stand it any more!!!
« Reply #105 on: Aug 4th, 2002, 11:03pm » |
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Thanks Ree, and Dark Angel for the responses. Thanks to everyone for everything. No, I am not mental. I don't think. Hmmm.
What does the heart have to do with clusters? Well, the heart supplies blood to the brain, head, and by the way other parts of the body, at a preset rate. It plays a major part in oxygenating the blood. It plays a part in supporting all the other organs that clean the blood, move the blood, use the blood. And all of it runs on electrical impulses. There are positives and negatives in our bodies.
So, since no one has come up with an answer to what causes CH's, I thought maybe I would suggest a little shock, that may somehow play a part in the whole process. Are you an expert by the way on CH's and anatomy and physiology?????
I can hardly wait for your response. 
While I'm sleeping, I'll think of another possibility for causes of CH's that you can pick apart.
OK??? BYE BYE.
Love you too. 
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Charlie
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Re: I can not stand it any more!!!
« Reply #106 on: Aug 4th, 2002, 11:51pm » |
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So far as I know, clusters are idiopathic. For now, I'll have to be content that CH is the result of faulty wiring. It's not fun but so far, not much else makes sense. 
Keep posting Debbie. It won't be long before you're one of us. I hope you stay and keep us on our toes. Do not pay too much attention to our silliness. I bet you'll like some of it eventually. Let us have it. 
Take care and stick around
Mean old Charlie
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Little Deb
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Re: I can not stand it any more!!!
« Reply #107 on: Aug 5th, 2002, 12:01am » |
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Thanks Charlie. I'll be around. Me and my crazy ideas.
Going to bed. Pleasant dreams to all.
Deb 
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Ted
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Re: I can not stand it any more!!!
« Reply #108 on: Aug 5th, 2002, 12:10am » |
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Increasing oxygen intake is used to abort individual attacks and not used as a preventative so I'm not sure what benefit there would be by shocking the heart to get higher levels of it (assuming that would raise oxygen levels) over sucking it out of a tank. Seems like a more drastic approach.
But, again, you very well may have been onto something with sending electrical impulses to an organ. You just have the wrong one. We don't know what causes CHs but we do know its originating point is the brain and that's where there's been some success with sending impulses too.
I hope you were serious about thinking of more things and do know it will be picked apart. That's what some of us do here. Pick apart treatments presented here that haven't been endorsed by the medical community. Many suggestions have been made. Only a couple have had any merit. One is the mushroom therapy brought to us by Flash. And that went under a LOT of picking apart and ridicule before it finally was accepted as a legitimate form of treatment. And because there was credible information on why it should work, followed by more and more empirical evidence of its successes, it has been generally accepted as a legit treatment. So, I really do hope you'll work on thinking up causes, treatments, etc. But don't feel bad if it does get picked apart.
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Lorsman
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Re: I can not stand it any more!!!
« Reply #109 on: Aug 5th, 2002, 9:58am » |
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Well Elaine, obviously your one of those "perfect people" who have their act down to such a "T", that life simply doesnt hinder you in such a way, that it may interfere or effect your day to day living. You are to be congradulated for your strength, endurance,, and your outlook on life. Unfortunately woman, not everyone has the discipline nor the endurance that you have and it is quite obvious that have no sympathy for those who may be "weak". Dont you wish everyone was like you?
Sincerely,
One of the weak ones....
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Lorsman
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Re: I can not stand it any more!!!
« Reply #110 on: Aug 5th, 2002, 9:59am » |
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Well Elaine, obviously your one of those "perfect people" who have their act down to such a "T", that life simply doesnt hinder you in such a way, that it may interfere or effect your day to day living. You are to be congradulated for your strength, endurance,, and your outlook on life. Unfortunately woman, not everyone has the discipline nor the endurance that you have and it is quite obvious that have no sympathy for those who may be "weak". Dont you wish everyone was like you?
Sincerely,
One of the weak ones....
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don
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Re: I can not stand it any more!!!
« Reply #111 on: Aug 5th, 2002, 2:11pm » |
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Quote:| is quite obvious that have no sympathy for those who may be "weak". |
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Lorsman,
You have no idea of how big of an anus you just turned yourself into.
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jonny
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Re: I can not stand it any more!!!
« Reply #112 on: Aug 5th, 2002, 4:39pm » |
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You were way to nice, Don.
I wont even waste the typing to say what I think.
.........................jonny
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Charlie
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Re: I can not stand it any more!!!
« Reply #113 on: Aug 5th, 2002, 5:48pm » |
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Holy Cowplop! 
Lorsman:
If your gonna write crap like that, it would behoove you to find out somerthing about whom you are talking. Why would you waste your time writing what you did anyway? Yer a yutz
Only we can make fun of Elaine.....  ;D 
Really displeased old Charlie
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There is nothing more satisfying than being shot at without result---Winston Churchill
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Candy
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Re: I can not stand it any more!!!
« Reply #114 on: Aug 6th, 2002, 10:17am » |
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Not cool...in disguise because I'm afraid to be seen on this thread! You've all made for an interesting morning, I have to say.
Lorsman, since you're a newbie like me I'm going to cut you some slack, and maybe save your ass from being torn a new one by some of the old-timers...I hope.
I have an amazing bit of writing posted on my fridge called Some Things You Keep. I wish the old posts were still here so I could send you to it, because Elaine was the author. I haven't been around long, so it's my best example of what a wonderful woman she is - even if it seems she's not behaving like one right now. (No personal opinion here, Elaine, just a comment on others' observations and comments)
I won't pretend to have a clue about what is causing the aggressive tone of her posts here...except I know it's definitely not CH . I'm learning, but I don't know anyone around here well enough for that. And my friend, neither do you. All I can say is that from what I've seen, no one here has a holier-than-thou attitude 24/7. We all have problems and moods, but some of those moods are positive, helpful and amazingly great to share in.
My best advice to you, take it or leave it, is to read a lot more, pay attention to the author, and get a broader picture of what that individual is all about. If you do come across someone you truly don't like, why not just steer clear of them, just as you would in the real world?
And guys, do me a favor and go easy on him. You've definitely made your point and he should have a pretty good idea of just how big a faux pas that was by now. There's been so much scrapping on this thread, I'm getting splattered by s**t just sitting on the sidelines.
As a last note...Elaine and Pappy, none of my business, but I love reading you guys, and I really hope you patch this up..you both contribute so much.
Best wishes to everyone!!!
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sailpappy
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Re: I can not stand it any more!!!
« Reply #115 on: Aug 6th, 2002, 10:38am » |
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;D ;D Everyone,
I regret taking the post off the board that would have put some more clearity on this whole issue, I don't know why Ms. Elaine took such offence at what I said to her, I said nothing to prevoke the type of response I got from her, I know a lot of the older board members read the thread before I took most of my post down, It went way beyond what was said on the board, the e-mail Elaine sent to me was totally uncalled for, I have cherished her, for her strength and tenacity, but I have seen this same situation unfold with several other people on the board and Elaine, She and I share a common bond unlike most in so much as we both also have terminal conditions that are advancing. I never meant any harm to Elaine and I had an issue to discuss with her off the board, she doesn't believe in the possibility that someone might have preminitions or ESP.
That is her choice and I never said anything negitive to her about that choice, I was trying to warn her about something I saw and she chose to blow up and belittle me infront of the entire board, I felt this was very odd since at the bottom of her personal screen she quotes, "To belittle is to Be Little"
We have dropped it, I am a person of my word, I would never say something to anyone,especially someone I really cared for as I have Elaine to ostrosize myself from my friend, but I'm afraid after what she said to me in the e-mail, I have no desire to continue to respect and care for someone with such a devious side,
The best thing for the board is to DROP this Thread and leave it between Elaine and I, I have spoken my peice and said my good byes, I pray that the demons leave Elaine in peace for we are both facing the end of our time and I hope she can leave this plane with a smile on her face, I know I will! Love Ya All! Pappy 
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| « Last Edit: Aug 6th, 2002, 11:42am by sailpappy » |
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