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Title: I can not stand it any more!!! Post by Elaine on Jul 28th, 2002, 2:40pm What in the heck is going on??? I see clusters being blames for everything. Bad marriages...getting fired...losing homes....There was one post years back about a lady that hit her kid because of clusters. Come on people clusters are bad I admit and they hurt like hell. But for Gods sake don't blame everything on clusters. Hell I have had clusters for ever it seems like but they did not cause my bad marriage...I contributed to it as well as my ex. I lost a few jobs but it was my own damn fault not clusters. I friggen get depressed but because I let myself. I know what to do to get out of it but I don't sometime I just a waller in it. I ran away from my responisablitys and things got bad and bills did not get paid. Not clusters fault. EVERYTHING IS NOT CLUSTERS FAULT!!!!! To be a cluster head does not mean we lose our lifes it means we hurt like hell. Not one of us will get any better us less you get off your butt and do something about it find the right drug and right doctor. They are not going to knock on your door..you have to work and find the answer. I am so tired of I tried everything and nothing works BS!!!! Its a damn cope out. No wonder everyone is sad and depressed around here ! Every post you open these days is so depressing its pathetic. Just plain pathetic. Sorry but I can't take all this pity me BS! Maybe I am in the wrong place. Can't you people find anything to be happy about? |
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Title: Re: I can not stand it any more!!! Post by jonny on Jul 28th, 2002, 2:51pm Im sorry I come here everyday and whine. Im sorry I have clusters that make every thing in life go against me. Im sorry blue and pink pigs fly out my ass every second tuesday of every month. Im sorry it took me 23 years to find my family. Im sorry that I just might be the queerest of the queer. Odd? Pretty much so! ...................jonny |
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Title: Re: I can not stand it any more!!! Post by Svenn on Jul 28th, 2002, 4:01pm Finalyy somebody took the chanse and tell us what has happend here in the last 6-8 month. I tried to write a message about this some months ago. And guess what.Just 1 had the guts to give me a reply.And that was Sailpappy. Thank you for that pappy. I have noticed for the last year or so that most of you my friends has started to "paint your lives black"Do not say all of you but most of you has done that. Maybe you did not understand me.Hopefully you will understand Elaine way of putting this up on the agenda. Thanx for that Elaine I love you all friends but sit down and try and lissen at Elaine words Svenn |
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Title: Re: I can not stand it any more!!! Post by markdavid on Jul 28th, 2002, 6:54pm Elaine, YOUR LIL FLUTE BLOWING FAIRY MAKES ME HAPPY. |
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Title: Re: I can not stand it any more!!! Post by Ted on Jul 28th, 2002, 6:58pm on 07/28/02 at 18:54:50, markdavid wrote:
Paging Dr. Freud. Paging Dr. Freud... |
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Title: Re: I can not stand it any more!!! Post by jonny on Jul 28th, 2002, 7:32pm Ted, Your fucking killing me.......LMMFAO ...................jonny |
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Title: I AM HAPPY.... Post by Elizabeth on Jul 28th, 2002, 7:56pm I AM HAPPY BECAUSE..... I heard a child's laugh today.... I didn't have to work at either of my jobs today.... My air-conditioning works.... I received a compliment.... The lawn isn't growing so it doesn't need to be mowed.... There's no snow to shovel today..... The kitties dumped over my favorite shampoo.... now the shower smells like violets.... I take responsibility for myself and my actions..... PROZAC WORKS.... Last time someone told me to 'get over it' and 'pull myself up by my bootstraps' I told him to go fuck himself..... The laundry is sorted..... I just read the new jokes in the Funnies section here at ch.com I'm alive.... I can move..... I can breathe.... And there are painfree moments between headaches. JMHO..... Liz |
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Title: Re: I can not stand it any more!!! Post by Drk^Angel on Jul 28th, 2002, 8:41pm Elaine... I'm sorry if you took my post as an attempt for pity. I didn't mean to ask for pity, and I don't want pity, but that's besides the point. The point is... Your post seems a bit insensitive to me. Insensitive to the ppl that are getting hit bad, who are have had a hard time, and who seems to be at the end of their rope. Feeling as though nothing is left, they are grabbing for the last shred of hope they have... The support of this board. You may be able to live a normal life while in cycle, but not everyone can. CH is not only pain for some ppl. For some it is a life crushing, debilitating disease. You're right... We are all responsible for out own lives, but that gets harder and harder as the odds stack up. And when it gets to the boiling point, and they can't take it anymore, they just ask for a little support from the board... From the ppl that is supposed to understand what they are going through. The truth is... None of us can understand exactly what everyone else is going through, but what makes this board great is that it doesn't matter. We still will give our all to support those who need it, and not complain... Not ask for anything in return... Not belittle them. I'm sorry if this ruffles anyone feathers. I don't mean to offend anyone, and I definately don't mean to offend Elaine. But instead of accusing ppl of begging for pity, maybe we should do what we are here for... To support those who needs our support. PFDAN...................... Drk^Angel |
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Title: Re: I can not stand it any more!!! Post by sailpappy on Jul 28th, 2002, 8:53pm ;D ;D Elaine,Elaine.,Elaine= don't you know that there is a quote about this very thing, People living in glass houses shouldn't throw stones. I Love you my Friend and you have had almost as big a plate full of hardships here as I or any other person that posts, My memory isn't the Greatest and I'm not going to pull out the archives to prove a point, but I know you have been as guilty of this very thing too! How many times have you told us good bye saying you would never be back to post again, I can think of at least 3 or 4 in the past year or so. Clusters do cause many deviations from the norm in peoples lives, not only those that suffer from them but their friends and family and employers and fellow employees. So while I agree in that your own personal attitude is germaine to how people feel about you and how they see what you post here, we are all affected a great deal by this malady, life is hard and it can become harder if you let the demon take control of your emotions. I think we all have posted self pity posts at some point and we all are guilty, some times we just need to hear from people we respect that they understand and care! I myself try not to post selfpity posts, as I do not pity myself, I need to find the core of joy and I often do it at the expense of others that seem to set themselves up for it! Life is hard but if you only look around we are surrounded by people that do care about us, we have each other as well as our own personal friends and family, we are the lucky ones and I strive to seek out those less forutnate to make myself constantly aware of this fact, no matter how hard life is for me, there is always that miner that is trapped in a hole in the ground,freezing for 36 hours before anyone can get to him, there is always that bus full of church kids that didn't make it to summer camp because of an accident that devistated the rest of their young lives. There is always that homeless guy you see riding his bike along the side of the road that everyone assumes because he is down on his luck he surely has to be an alcoholic. So I say this to Youa and our whole family, Seek the truth for it is the truth that will set you free! I love everyone here, yes even you Markdavid and that is my slant on this question of posts that portray our lives as blaming everything and everyone else for our problems, actually I don't see it myself but if you say it's here Ms. Holloman Teacher extraordinare it surly must be! Pappy |
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Title: Re: I can not stand it any more!!! Post by Elaine on Jul 28th, 2002, 9:21pm You are so right sailpappy but not ever did I try to do away with myself because of a CLUSTER! Yes I have posted my share of post that were a pity me thing. But you know what when people gave me advice I didn't say oh I tried that it didn't work, or keep coming up with reasons not to try. I always got up. Some of these people have painted a black picture and they can't see any color no matter what ya do for them. I am chronic and I have spent all of my adulthood with them. I never found the meds I needed till I came to this site. This is where I found it. What my post is saying is just don't blame everything on cluters. Its not cluters alone that cause all this that has been posted. . If you really read my post you will understand what I am saying. You can beat me up get mad, but if you guys don't find something bright in life clusters are going to win with your help. I just won't let it happen to me. I love my family and friends and I want to be here for them and I can and will be. No demon of any kind is going to make me give up. I am going down fighting if I lose. If you guys are mad and upset I am sorry I am not insentive I would just like to see more people get up and not let cluters win. I will help anyone that will help themselfs , there one lady I care about very much here a copule of them as a matter of fact. They have problems but they don't blme it on clusters, they blame it on what it is Life. Like I said maybe I am in the wrong place. |
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Title: Re: I can not stand it any more!!! Post by sailpappy on Jul 28th, 2002, 9:37pm ;D ;D Ms. Elaine, I didn't intend to sound as if I were beating you up at all, I love you, I was just pointing out that you had done the same thing on occassion, Your the reason that I stayed on the board and one of the reasons I continue to stay here, I have a lot of problems in my life as I know your aware of, I have never blamed anything but Fate for this, and I have tried every medication ever mentioned on this site, with the exception of the mushrooms! Yes there are people here that blame Clusters for everything wrong in there life, but in doing so they are screaming out for help not sinicisym(?) Your a very smart ,caring person, that has gone way out of her way to help those that ask for it ,but personally I find you a little short tempered or short on compassion for certian people depending how they word their post, I am a nut case, I hear and see things others don't even in my reading of posts here, I have preminitions and once in a while I share them when they are about someone from the board, I had one about you back several months ago way before I met you at Engle wood, I felt that if it were to come true it is fate so I have never mentioned it, as it was a bad preminition, if your interested in this type of rambling let me know and I will write to you and tell you about it, unless your hair has been red by mistake within the past 2 months or so I wouldn't torry about it, if that happened and on that day your Step Daughter told you some earthshaking news then write me! I would never insult you on purpose, I just think the ability to deal with not just CH but other problems as well is a learned trait and until you have to do it you may not know that you have the ability to be so flexible. http://www.gifs.net/animate/sungulls.gif http://www.gifs.net/animate/sailboat.gif Pappy |
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Title: Re: I can not stand it any more!!! Post by rick on Jul 28th, 2002, 10:20pm on 07/28/02 at 20:41:06, Drk^Angel wrote:
Something we should all keep in mind. |
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Title: Re: I can not stand it any more!!! Post by rick on Jul 28th, 2002, 10:24pm on 07/28/02 at 21:21:57, Elaine wrote:
Food for thought, brother Dark. |
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Title: Re: I can not stand it any more!!! Post by Ted on Jul 28th, 2002, 10:54pm Most importantly, I knew you'd get a kick out of that one Jonny. LOL OK. Here I sit defending what Elaine said and that she said it. Who cares who brought the subject up? The point is the same. I read everyday about how this is a support group. A place to go to complain about life. NO!!!!! This isn't what this was not so long ago. this was a place to go to find the latest info about CH. This wasn't a place to write "I have clusters so my wife is leaving me because I'm impotent." (the wife thing wasn't about you, Drk) This was NEVER that place. Hell. None of us were impotent till we found the bandwagon to hang on to. Sure Elaine got in the self-pitying point before. Seems to me she's fucking straight up about what needs to be said. And for those of you that say "we've all done it," hit a history. Hit on me. When have you ever s3een me doing it? I'm not saying it's bad when someone hits there point and starts complaining. But DO NOT say "we've all been doing it." I live in my own world and I don't bother you with it. Don't tell me I ever let you into what I go through. I may become an not a very nice person at times and y'all sit there and ridicule me. But name one time I've laid my shit on you. Elaine, you are right. Yeah, you've done it. Who cares? You were straight up with this place. Now let's get to this shit of what this board USED to be. Let's find a cure and stop crying because my CHs causes hangnails! Let's get some balls again! |
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Title: Re: I can not stand it any more!!! Post by kim on Jul 29th, 2002, 12:05am Oh Shit. BALLS! CALLING ALL BALLS!!! :D Wish I had some BALLS! :D :'(KIMMIE got NO BALLS :'( |
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Title: Re: I can not stand it any more!!! Post by Ted on Jul 29th, 2002, 12:20am Well, maybe someday you will, Kimmie |
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Title: Re: I can not stand it any more!!! Post by kim on Jul 29th, 2002, 12:29am Ted! What sort a balls should I ask for? Huh,? Bad balls? Good Balls? happy balls? sad balls? Whuh? :D Elaine, ya can smak me if it feels fun.Betcha it does. ;)NOW SNAP OUT OF IT ;D |
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Title: Re: I can not stand it any more!!! Post by rick on Jul 29th, 2002, 12:30am Kim, Yeah, what do they say the ladies have when they are tough and courageous ??? This is a real question, I don't have a smart ass answer for this one. But maybe someone else has one?::) On the serious side, and I'm not being critical of anyone here, what Elaine and Ted are trying to say is that we're not going to get anywhere feeling sorry for ourselves. And they're right. I completely understand that we all get our ass kicked by life from time to time, but the important thing is to get up and keep swinging every time you get knocked down. Pappy, from all the stories I hear about the things you've had to deal with, I think of you as one of the stronger people I've met here. Dark, keep your focus man, dig deep, look the beast in the eye and FLIP HIM THE BIRD!!! You can't give up without having tried everything. Much love to everyone, -Rick |
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Title: Re: I can not stand it any more!!! Post by Ted on Jul 29th, 2002, 12:37am And while we're at it (ooops. I should have probably shut up long ago) what's up with those of you who sit there and bitch that your doctors don't care enough to look into what a Ch is and just treat you like another migraine patient? Whine and bitch about some doctor who has no personal involvement to learn anymore because your personal check pays him just the same, educated or not. But, you who has a personal stake in an understanding of CH sit back and say "Oh. Someone else will do the work on an OUCH committee. I don't need to. I'm too busy complaining about my doctor not understanding to get involved anyway. Plus, it will cut out moments of my chat time. What do you expect of those not affected when not even you can volunteer some time? |
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Title: Re: I can not stand it any more!!! Post by Ted on Jul 29th, 2002, 12:39am Hey Kim. Start out with a set. then come back and ask how to fine tune them. But start out easy and just have a set to begin with. |
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Title: Re: I can not stand it any more!!! Post by kim on Jul 29th, 2002, 12:41am Did not and do not often get to sit down and really talk with the women folk around here. During the day my time is filled up with loving and caring for my family. I jokingly asked for balls b4. that was just me being an idiot. I already admitted to my blatant idiocy in prior posts and a strong desire to dispell pain by continued divertive idiocy. Having watched a grandmother die in my arms. Having to currenlty watch my mother suffer of cancer. Having to raise three young lil girls, well i guess balls is one thing I jokingly call upon both for a laugh and for that weird connection that women can once in a while share. What smart ass are you calling too? Callin all angels. always. Kim |
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Title: Re: I can not stand it any more!!! Post by kim on Jul 29th, 2002, 12:44am Oh, and Ted, my set SERVES WELL. Start to Finish. |
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Title: Re: I can not stand it any more!!! Post by markdavid on Jul 29th, 2002, 12:46am Well said Dark and Sailpappy!! Ted ya have a good point, but we all handle things differently. Oh and your real quick on the uptake... wow 4 min to think about my comment and reply... :P |
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Title: Re: I can not stand it any more!!! Post by Ted on Jul 29th, 2002, 12:49am Then if you have a set, and you're still asking what kind you need, ask for a good set of balls. |
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Title: Re: I can not stand it any more!!! Post by Ted on Jul 29th, 2002, 12:50am Hi Mark. :-) |
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Title: Re: I can not stand it any more!!! Post by rick on Jul 29th, 2002, 12:58am on 07/29/02 at 00:30:46, rick wrote:
Ted- you funny...me don't know how...still laughing about the flute blowing fairy... good night....... :D :D :D :) :) :( :-X |
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Title: Re: I can not stand it any more!!! Post by kim on Jul 29th, 2002, 1:01am So. Elaine. Better yet? ;) Sure hope so :D |
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Title: Re: I can not stand it any more!!! Post by Ted on Jul 29th, 2002, 1:04am And I'm still laughing at you quoting yourself to tell me that. :-) Night. |
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Title: Re: I can not stand it any more!!! Post by Georgia on Jul 29th, 2002, 1:11am Oh boy. Where oh where to begin? How about starting with the very first page of this website? And I quote, "You now have a place to "vent" when you wake up at 3 a.m. with a headache, the oxygen tank is empty, and you're out of Imitrex!... Finally...a place where you can talk to someone about how horrible your headaches are and know that they really do understand your pain." Simply stuff. Need I explain that support and information, venting and seeking pain management need not be, are not, mutually exclusive? I find the irony of this thread excruciating. Elaine, with all due respect, I can honestly think of no one else on this board who has publicly threatened leaving the board, killing themselves, or simply crying about how bad things are as much as you have. And Ted, perchance your memory is not perfect (try august 16th, 2000 for one, if you doubt me). You, along with everyone else here, have had moments of pure pain, of venting, of pity, of needing nothing more than a shoulder to cry on, an ear to vent into. I truly mean no disrespect to either of you. It is blatantly obvious to all here that both of you have done and continue to support, to research, to work towards a cure, to do everything within your power to make this disease more tolerable, despite your moments of personal need. I for one will continue to vent when I need to, to feel fucking horrible when I want to and more importantly...to allow my fellow sufferers the same right, less the hypocritical bullshit, less the judgment on whether or not they are working up to our standards when they are hurting. |
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Title: Re: I can not stand it any more!!! Post by Ted on Jul 29th, 2002, 1:27am Hi Georgia. Just checked the archives for 8-16-00 and saw a post of mine talking about it being my birthday and feeling like shit that I made it to an older age than my brother. I searched long and hard for one that said he's dead, or I have clusters, and so all my failures in life are due for either reason. Can you tell me what you're refering to by bringing that up? Because it makes no sense to me. |
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Title: Re: I can not stand it any more!!! Post by Ted on Jul 29th, 2002, 1:47am Hmmm. Guess not. Without a valid point, leave my brother the fuck out of any conversation. >:( And that said, Georgia, yes. I do still owe you and know it. |
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Title: Re: I can not stand it any more!!! Post by paul_b on Jul 29th, 2002, 1:51am As a new kid on the block, it is interesting reading reguarding the history of this site. What I have learned is that the posts first centered on attacking the Beast and finding ways to cope when it arrived. It was also okay to vent and release your pain. To you, the posts are changing and not focused on seeking redress from our pain. I want you to know that the opportunity to be a part of this family has helped me immensly----the emotional side is stronger and thus coping with the pain is more tolerable. It would be hard and disappointing to me if I did not believe that all of us are not, in our own way seeking a remedy for CH and can't wait to share it with others on this site. Also, pay heed to the number of new members, as the family expands adjustments take time. I see this dialogue as a healthy process and am glad to be a part of it. I am looking forward to the moment when I can say "I found it" and we will all be cured. Until then, I am quite willing to accept each of us for where we are at at this moment in time and I will give what I can to support my brothers and sisters. Love you all and PFDAN :-* ;D and hugs. |
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Title: Re: I can not stand it any more!!! Post by Georgia on Jul 29th, 2002, 1:51am Quote:
Quote:
Pretty self explanatory, if you ask me. I consider August 2000 "not so long ago". As Pappy said...people who live in glass houses.... I am not trying to turn this into a personal attack of who did what and I apologize if my post read that way. (And as for that post in particular... just used to make a point, nothing to do with your brother). I am simply fuming over this thread, and I am not known for my tact when I am angered...ok, I am not known for my tact in general. I can appreciate that we need to focus on what we can do to stop ch, to manage the pain, etc...but I do not appreciate people being told that this is NOT a place for support but rather pure information. That is, as I said before, hypocritical bullshit....bullshit that reeks with some self same sickly desire to control the posts on this board. |
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Title: Re: I can not stand it any more!!! Post by kim on Jul 29th, 2002, 1:54am Elaine, I must referr now to the first line of you post...........which states "What the heck is going on?" .................Got any suggestions? :D.......................? |
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Title: Re: I can not stand it any more!!! Post by kim on Jul 29th, 2002, 1:58am Georgia! (oops posted twice ::)) Please - don't get mad. You can call me and get mad at me. ;D COLLECT ;D Who threw the penny in the pond first? Who cares. Call me Georgia. |
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Title: Re: I can not stand it any more!!! Post by Ted on Jul 29th, 2002, 2:00am I see. So you think maybe one day. two days? Even three days of talking is basically the same as coming here EVERYDAY and making up excuses for your life? I still am waiting to see how people claiming their lives are ruined everyday is the same as you hunting back two years to find me actually talking about it one day is the same. I still am waiting to see how you can synthesize the point of complaining one day and making up excuses for their lives. |
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Title: Re: I can not stand it any more!!! Post by Ted on Jul 29th, 2002, 2:03am And while you're quoting (out of context) you might want to include this one, unless your point is to seem right and not be right: "I'm not saying it's bad when someone hits there point and starts complaining." |
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Title: Re: I can not stand it any more!!! Post by kim on Jul 29th, 2002, 2:05am ELAINE!........................ :o :o :o Fix yur hair and help me OUT HERE! :o You started it. ;D |
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Title: Re: I can not stand it any more!!! Post by BobG on Jul 29th, 2002, 2:12am Wow! This string was one long lump of shit. Elaine was only saying don't blame every little thing that happens in life on headaches. Your dog didn't shit on the porch because you have clusters. Your two-bit daughter isn't hooked on drugs because you have clusters. And the stock market didn't crash just because you have clusters. There was advice given during the early years of this board that is still good today. "Get over yourself" The only intelligent post here (except Elaine's) was from Elizabeth. Hey Liz, I'm having a good time too. Yesterday I got all my saw blades sharpened and bought a Roto Zip. First thing in the morning Zackery and I are going to cut a hole in something. Cool huh? And I have 2 new rolls of duct tape. Life is good |
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Title: Re: I can not stand it any more!!! Post by Ted on Jul 29th, 2002, 2:21am And um... I was going to make something of myself. And um... I don't know what. Just something. And um... So this guy Bob, like he said this thread was a lump of shit, right? So, um... I... I... I... I stopped looking, right? So, I think it's my head pain that makes me give up on life. It's, um... you know. So responsible to do that. And I shouldn't. |
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Title: Re: I can not stand it any more!!! Post by kim on Jul 29th, 2002, 2:42am Guess Bob Skipped Vegas this time......... :o ya want my sawsol? |
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Title: Re: I can not stand it any more!!! Post by BobG on Jul 29th, 2002, 3:11am Ted.............don't give up on life. There's so much fun to be had Get a roll of duct tape, then get a kitten, go up on the roof, then........oops, never mind. Get a Roto Zip, then get your mother-in-law's car.........no, better not. kim...............I have a Sawsall, but thanks for the offer. I'm going to Vegas in about 7 hours. |
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Title: Re: I can not stand it any more!!! Post by markdavid on Jul 29th, 2002, 3:39am Hi Ted, ;D Elaine what a great can of worms you have opened! I don't want to sound like a trouble maker , but it's been a blast. PFDAN TO ALL :) |
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Title: "Re: I can not stand it any more!!! Post by Svenn on Jul 29th, 2002, 5:09am I will not try and defend Elaine here,because she is old enough to do that herself. But i will try and explain my answer to this. Our life is not black or white.Life is in different shades,perhaps some of us has som spots of colour there to.At least i think i have that.1 of those spots is my family,and another 1 is all my friends here in Clusterville. Of course you have the right to whine when it hurts.I`ll read that as a "cry out" for help.No more and no less then that. And its a great opportunity to do that here when you having friends here that do understand and are willing to help in any way they can.We have all been in the hellhole with "General Cluster"Perhaps some of us can deal with that in better way then another clusterhead can.That i don`t know. As a friend to all here i`ll have to be true to you. Over the last almost a year i have noticed that some of you only "paint" your life black.I really do not think thats right to do to yourself.I think thats a devestating way of ruining your life I`m sure that i have done my share of whining to,and i have had a lot of help and support from my beautiful friends here.Just love all of you for that. :-* :-*.Just try and read between the line of what Elaine is try and tell us Finaly but least a question for you. Do you really blame every bad thing that happens to you on Cluster.I don`t think thats right.But as a clusterhead i know that we can or better are one of the most unreasonable people in the world.True or not? Has to say that one positive thing about clusterheadache.If i did not had that diagnose i`ll never had the chanse to get so many GOOD friends as all of you Take care friends and pfdan to you all Svenn |
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Title: Re: I can not stand it any more!!! Post by oringkid on Jul 29th, 2002, 9:46am I don't know if any of your post was directed towards my post Elaine, but just to clear things up, I don't blame CH for my finances or my depression or anything. In fact I am of the belief that you can decide how you will handle your pain. My post to Drk was saying that and there have been some who have given me crap for being able to function with this pain. My "worthless" post was about my inability (and subsequent self pity (yes I know it was)) to feel like I was contributing to this site and OUCH. But, this is a SUPPORT group isn't it? Not a research site. I may think that others need to get a handle on their lives, wrest control of their lives away from the beast, but I don't think that anyone should be told they shouldn't vent or should keep their feelings to themselves BECAUSE it IS supposed to be a support site. As usual I can see both sides of this (which can be a real bitch sometimes) and agree with both on certain points. Part of support is to try to help others who can only see black, to at least see a little gray. To try to point them in a new direction. If we want to help with the pain, part of that is letting people let the pain out, helping them to see that the pain is not the only thing. It is very easy to blame bad things on the most prominent thing in your life, much easier than blaming it on yourself or your possible failings. But that is human nature! I KNOW that you Elaine are one of the most caring and compassionate supporters on this site. And yes this site can get very depressing and full of self pity, but isn't that also the nature of the beast? And don't almost all of us, through the caring and support we receive here, turn that around? I think we do! I can't think of anyone right off hand who has been consistently down and did not turn themselves around to at least try to give a little hope to another. I love all you guys and have never met a one of you. Well thats all, I will shut up now Sherry |
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Title: Re: I can not stand it any more!!! Post by don on Jul 29th, 2002, 10:38am Well Kim,seeing how this is basically a CH site I would suggest........... MEDICINE BALLS |
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Title: Re: I can not stand it any more!!! Post by Jackie on Jul 29th, 2002, 10:43am Lets see......where do I start? ??? First I'll say that I think I know Elaine pretty well. She would never make a post or say anything that would intentionally hurt anyone. I also don't think that her post was directed at anyone. She has stated her opinion about the way some of our posts make her feel and she is right. I read some of it and see nothing but gloom and doom. This is a "support" board....it is a place to vent, rant and rave if we need to. It is not a "wah" board. Elaine is telling us to hang in there...fight...do something...stop blaming CH for everything that is wrong with our lives. I have always believed that we can't control what happens to us in our lives but we sure as hell can control what we do about it....how we handle it....how we cope. She's telling us to get off the pity pot and get in the ring. Fight like hell!!! Her post made me think of something that my Dad used to say..."I cried because I had no shoes until I saw the man that had no feet". Now, you all may think I'm full of shit because I'm not a CH sufferer.......just a supporter. But I am married to a chronic....a bad chronic!!! He refuses to quit fighting or give in. We WILL NOT let the beast rule!!!! That is the only way we know how to cope. Yes it sucks but there are good days and happy times. There are things to be glad about. There are good days and even a pain free one sometimes. Sometimes we even get to sleep all night. No I don't feel the physical pain. CH does give me heart pain....big time!! I've prayed many times that the beast would get on me and leave my wonderful husband alone. There is safety in numbers......hang together.......help when you can. OK...I'm gonna STFU (shut the fuck up).... :-X I tend to ramble and get off the subject anyway. Jacks 8) PS......Pappy, just so you'll know..Elaines children are not step children. They are 100% hers...as much as if she had carried them for nine months and given birth the old fashion way....naturally... ;D |
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Title: Re: I can not stand it any more!!! Post by Elaine on Jul 29th, 2002, 11:00am To The people who read my post and understood it, Thanks. For the people who did not read and understand it I am sorry. This place is for us to interact with each other, no matter what is bugging us. We have become friends and we share a lot of stuff with each other. What I was saying was if you have something wrong in your life and want to talk. We will be glade to talk to you. But you have not got to blame it on clusters for us to do that. Dons Dog needed a operation we all cheeped in and helped but he did not post his dog got sick cause he had clusters. We are all praying for Barbara G but her problems are not ch related right now. Vent all you want but please only blame clusters for what they cause. My daughter she lost two jobs in a month, not because of any health problem, the fact she has a problem at getting to work on time. (she is not a morning person) that was the cause. Put the blame where it should be. This board is not just to vent on we would like to hear about your good days also. I have posted some bad things that have happen in my life but I have also posted some wonderful things that happen in my life and I blamed the bad things on what caused them, not clusters. I don’t want new people to feel they can not ask for help for cluster sure they can and there is not one here that wouldn’t help. We would all help if we can. But if everything they read is blamed on clusters and they see no sunshine ahead, maybe its our fault because we paint such a black picture. If everything you see is black then its hard to see anything. Could it be we are feeding them the wrong message. That there is no sunshine ahead, no good days, no hope. Sherry for one her post are great she shows sunshine along with the rain. If no one has anything to smile about they are not going to. Smile life is not all clusters and there is sunshine ahead. Blake is a blessed man Jackie to have a wife like you ! You are so right my children are a 100% mine. Even their birth records say so. :-) |
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Title: Re: I can not stand it any more!!! Post by sailpappy on Jul 29th, 2002, 11:46am E. As I explained in my e-mail to you, I thought you had posted that you had adopted one of the girls, in fact I didn't even know about the other 2 and all their problems, a little birdie told me, also the reason I posted that Congratulations or I'm sorry which ever applied is I remember the stories of the abuse you took at the hands of this person that now you will remarry,People don't change,they get old! I don't try to intentionally whine here, I use the load I carry as an example to others that no matter how hard life is for them all you have to do is walk out your front door and open your eyes to find 1000 with lives which are as equally difficult. this is not OUCH it's Clusterheadache.com and the mission statement DJ put up is quite clear! Pappy |
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Title: Re: I can not stand it any more!!! Post by BobG on Jul 29th, 2002, 12:06pm Hey Jackie.........there is no such thing as "just a supporter" Please don't use that phrase again or I'll come back here and tell you shut up ;) And your father is a smart man! |
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Title: Re: I can not stand it any more!!! Post by Jackie on Jul 29th, 2002, 12:36pm Hey Bob Your point is well taken :) There is no such thing as "just a supporter" unless one might be making reference to the athletic kind :D Blake continually reminds me of that...especially after the kind of night we just had....bless his heart :'( You are also right about my Dad being a smart man. I will miss him until the day I die and then some..... We might all do well to take heed to some other things he said...like "it's better to be seen and not heard sometimes". And, "don't be so damned bent on being right that you make an not a very nice person out of yourself".... ;D Thanks for the reply, Bob....and if you tell me to shut up I will consider it an honor :-* Jacks 8) |
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Title: Re: I can not stand it any more!!! Post by Jackie on Jul 29th, 2002, 12:40pm hmmmmm..... Apparently a**hole converts to "not a very nice person" on this board ::) ;D Jacks 8) |
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Title: Re: I can not stand it any more!!! Post by Elaine on Jul 29th, 2002, 12:43pm That is another problem around here to many birds and a lot of bird shit to clean up. I am not asking you to marry him, yep we abused each other, in the heat of anger, but we have both come to grips with the fact our love never died. That tomorrow is no good without the other. I never forgot the GOOD in our relationship and neither did he. We never stopped being friends. Guess what the clusters did not cause any of it :-)! Pappy lay off my family, your starting to show your true colors. My children do have problems whoes don't? I am here for them and I will be here as long as I can and I will provide for them if I am not. Enough said about my family here you are talking about somthing I will fucking fight for in damn heart beat! So lay the fuck off and keep to the thread!!! |
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Title: Re: I can not stand it any more!!! Post by sailpappy on Jul 29th, 2002, 12:53pm This is what I mean Elaine, I have not said anything derogitory about your family at all, I have expressed concern for you and your lovely daughter, the information about the abuse you posted, I am just recalling the accuracy of my memory, I don't know what has your dander up so much but your really doing the the Dr. Jeckel and mr. Hyde thing with your post to me, one moment your a friend the next I'm an Axxhole for recalling information you posted about your life here, Don't worry Miss Holloman, I'll not respond to anymore of your post since your so attament about having to be right about everything! I'll pray for you still as I always have, I'll just have to alter the prayer to include your judgement, I thought I had always been a good friend to you and now because I don't agree with one post your throwing obsenities at me, Good bye, your the weakest link in this thread! Pappy |
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Title: Re: I can not stand it any more!!! Post by sailpappy on Jul 29th, 2002, 1:00pm :( I forgot one thing, it amazes me that you can be such a religous person and be praying to God and quoting the bible one minute and then being so obscene the next. Sorry your in such an ill mood, maybe you might rethink some of the things you have said! Goodbye My Long term Friend! ???John Joseph Hallahan III ??? |
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Title: Re: I can not stand it any more!!! Post by Elaine on Jul 29th, 2002, 1:05pm hmmm thats called being pissed off and human, I don't know but one saint and he died for me he died for us all. I never say Good bye to anyone ! I am sure you and I will cross paths again, no dought in my mind. Have a great day I plan to ;) |
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Title: Re: I can not stand it any more!!! Post by Drk^Angel on Jul 29th, 2002, 1:10pm Will everyone please stop! Just step back... Cool off... Calm down. There is much too much fighting on the board lately. As has been said on other threads... Let's agree to disagree. I love this board, and everyone on it, but I hate the way we are fighting, picking, attacking each other. Let's just let this thread drop, and get back to supporting the ppl that needs our support. Please! Everyone just STFU! PFDAN........................... Drk^Angel |
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Title: Re: I can not stand it any more!!! Post by rick on Jul 29th, 2002, 1:41pm How about this? Before anyone posts again on this thread, head to this link and read something. I believe it would be more productive than everyone sitting here and arguing. Maybe everyone could debate a topic from here?: http://www.clusterheadaches.org/library/index.htm |
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Title: Re: I can not stand it any more!!! Post by hub on Jul 29th, 2002, 1:59pm Okay any bets on the sailpappy/elaine duke out? ;D The ol fellow is probably pretty crafty but he's a bit of a softy. :D and ol' girl, now she is pretty fiesty but I don't know how much wind she's got... ;D I figure both of them will bite, it depends on whose poligrip holds the best... Sorry Paps I think I'll have to bet on ol girl because I think she might blindside ya... ;D |
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Title: Re: I can not stand it any more!!! Post by jonny on Jul 29th, 2002, 2:18pm Jack, Can you believe the length of this thread and not one mention of the pigs flying out of my ass every other Tuesday? All I got to say is WAH!!!!....STFU!!!!!! .............jonny |
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Title: Re: I can not stand it any more!!! Post by sailpappy on Jul 29th, 2002, 2:24pm Aarrrggggggg! Why Hub, is this what it takes to get you out from under that rock with Patrick and spongebobhttp://uglypeople.com/uglymen/section.images/up-men-00289.jpg |
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Title: Re: I can not stand it any more!!! Post by hub on Jul 29th, 2002, 2:25pm I saw the pig thing and it was tempting however the part about you being a queer really caused me to pause...you butcha...I mean betcha... ;D |
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Title: Re: I can not stand it any more!!! Post by Ree on Jul 29th, 2002, 3:23pm I truly know when to stay out of a thread... couldnt resist ending this one... enough already!!!! ... I love you all... little ole ree |
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Title: raphatRe: I can not stand it any more!!! Post by Blake on Jul 29th, 2002, 5:22pm What a bunch of crap!!!! I came to this site over two years ago for help & information.I cannot believe what Jackie is reading to me.I am sitting here from work with two Zomig in my system & the worst part of my day is what I am hearing on this board.If I came to this board today I sure don't see any help here & you all should be ashamed.If you don't have anything better to do,go mow the yard or do some dishes!! If I want to whine or cry thats fine because someone has always told me something I needed to hear to fight.The bickering needs to stop!!!!Someone out there might need help & it might be me. The bad part is I can't see any help here right now! BLAKE :( jonny, I'm sorry about the pigs. At least they are on the way out! Elaine, I love you and this is the way I feel |
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Title: Re: I can not stand it any more!!! Post by sailpappy on Jul 29th, 2002, 5:52pm ;D ;D Hub, The post you refer to was what Jonny posted about himself, I had nothing to d with that! I think some proof reading might be in order when the eyes of anger calm down! Pappy Blake , It's all in the perspective Dude, I said nothing to prevoke the response that Elaine dropped on the plate, only the truth,only the truth |
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Title: Re: I can not stand it any more!!! Post by jonny on Jul 29th, 2002, 6:28pm Leave me and my pigs out of this. Hmmmm, bacon for breakfest?.....Yup! .............jonny |
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Title: Re: I can not stand it any more!!! Post by pjbgravely on Jul 29th, 2002, 7:08pm Thank you Elaine, I was going to post about how ch's were the final straw that may break me but I think I should keep it to myself. I know that ch's can distroy our lives no matter how hard we fight. Most peaples lives are hard with or without pain. I realized I might be in trouble when DRK wanted to give up and I couldn't write to help him becouse I agreed with him. I will try to give myself help by helping others. I just hope the help I need doesn't come too late. I for got to mention that the only things we can blame on the problems in our lives is ourselves and satan. Paul B. |
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Title: Re: I can not stand it any more!!! Post by don on Jul 29th, 2002, 10:10pm Pigs out of your ass? Bacon for breakfast? Who makes a better pork sausage than your ole buddy Millpie. |
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Title: Re: I can not stand it any more!!! Post by BobG on Jul 30th, 2002, 2:31am SHUT UP Jackie! |
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Title: Re: I can not stand it any more!!! Post by Svenn on Jul 30th, 2002, 4:10am The conclution on this thread has to be like this: We clusterheads are the most stubborn unreasonable people in the world,but still manage to be friends no matter what? Take care friends. Love you all ps/a little provocation make us feel good Svenn |
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Title: Re: I can not stand it any more!!! Post by catlind on Jul 30th, 2002, 6:57am We have to be stubborn ;D Just think of all the doctors that mess up and the pain we deal with. If we weren't stubborn, and I actually had a doctor tell, "you're too damn stubborn to die" then none of us would be here :) everyone here is a great person, (in my best forest gump voice) and thats all I have to say about that Cat |
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Title: Re: I can not stand it any more!!! Post by kim on Jul 30th, 2002, 5:12pm Don? Medicine Balls. that made me laugh my arse off. I will not drop a dinle gear (oops - single tear) for any of the other stuff my system has sucked up from this dangerous environment. And that sailor with the pipe? It IS uncle Gordon. :D I just know it. For GAWD SAKE. We ain't dead YET! STFU. ;D Can't help but observe how sunny i am without ch. ::) |
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Title: Re: I can not stand it any more!!! Post by sailpappy on Aug 2nd, 2002, 1:00pm ;D ;D how close is this to the record for the longest post? Did we come close? Me thinkest that me has been a bad boy, Nah! Just joking, Stand yer Ground yer scruvy crew, blast all them mushymouth self piters and go down with the ship ifn it need be! Cappy http://www.gifs.net/animate/sungulls.gif http://www.gifs.net/animate/sailboat.gif |
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Title: Re: I can not stand it any more!!! Post by ECV_XPBC on Aug 2nd, 2002, 1:56pm Yes I am new, but been lurking. I don't have all the historcal baggage that many of the old timers do, but this thread shows how myopic such a relatively small group of people within a similar condition can get. I felt Elaine's original post dealt with personal responsibility (something sorely lacking in this day). Frustration must sometimes be vented, but humor and flippancy also have their place. I'm really quite pleased to see a place where people who have experienced the same pain and anguish can speak with the same jargon and understand each other. You folks recently tried to talk with the outside world about anything CH related and get even a glimmer of true understanding from them? Shit, I don't who/what to attach responsibility to for this condition, and if I did, I would hunt it down and kill it It just IS! I live with it; more to the point - my wife and kids live with it; and screw everybody else because they aren't even remotely as important We've all been at the end of the rope, and if we feel we've heard it from others too many times - just wait - its only around the corner for us to personally experience again. Thanks, Rich |
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Title: Re: I can not stand it any more!!! Post by Charlie on Aug 2nd, 2002, 9:39pm The sentiments of just about the whole bored board. Had this horror for 22 years. Been free of them for 11 but there is no way to convey the level of pain. Keep looking and reading. You will find some help here. All of us do. They really do. By the way, glad we're doing or part in keeping this thread going. Really, really old Charlie |
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Title: Re: I can not stand it any more!!! Post by Scotty_Dog on Aug 3rd, 2002, 12:41am 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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Title: Re: I can not stand it any more!!! Post by sailpappy on Aug 3rd, 2002, 1:19am ;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 http://www.gifs.net/animate/sungulls.gif http://www.gifs.net/animate/sailboat.gif |
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Title: Re: I can not stand it any more!!! Post by Jim R on Aug 3rd, 2002, 5:59am 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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Title: Re: I can not stand it any more!!! Post by sailpappy on Aug 3rd, 2002, 12:01pm ;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 http://www.gifs.net/animate/sungulls.gif http://www.gifs.net/animate/sailboat.gif |
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Title: Re: I can not stand it any more!!! Post by jonny on Aug 3rd, 2002, 2:41pm Is this the only thread? |
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Title: Re: I can not stand it any more!!! Post by RichardN on Aug 3rd, 2002, 3:56pm Must be............computer ghosts maybe?? |
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Title: Re: I can not stand it any more!!! Post by RichardN on Aug 3rd, 2002, 3:57pm Must be............computer ghosts maybe?? |
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Title: Re: I can not stand it any more!!! Post by RichardN on Aug 3rd, 2002, 3:58pm Must be............computer ghosts maybe?? |
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Title: Re: I can not stand it any more!!! Post by sailpappy on Aug 3rd, 2002, 4:56pm ;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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Title: Re: I can not stand it any more!!! Post by Charlie on Aug 3rd, 2002, 5:02pm It's the famous Kluster Virus. Sorry guys.... :P All seriousness aside, the infection here is dead. I never felt so clean, so fresh before...... ::) Recovering old Charlie :P |
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Title: Re: I can not stand it any more!!! Post by oringkid on Aug 3rd, 2002, 5:23pm Am I the only one seeing only this post left? |
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Title: Re: I can not stand it any more!!! Post by MOB on Aug 3rd, 2002, 5:25pm I know you guys need to get focused but don't ya think this is taking it a little toooo far ;D And I'm really supposed to believe the bit about 'Clean Old Charlie' - yeah right !! ;) Best Wishes, Michael (MOB) |
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Title: Re: I can not stand it any more!!! Post by Kezz on Aug 3rd, 2002, 7:56pm 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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Title: Re: I can not stand it any more!!! Post by jonny on Aug 3rd, 2002, 10:06pm Shut up, Kezz!!! ............jonny |
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Title: Re: I can not stand it any more!!! Post by paul_b on Aug 3rd, 2002, 11:50pm This thread has turned into the Great Clusterhead "Yarn" ;D ;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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Title: Re: I can not stand it any more!!! Post by Scotty_Dog on Aug 4th, 2002, 12:57am 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. http://mediaservice.photoisland.com/auction/Aug/2002838584723674550340.jpg |
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Title: Re: I can not stand it any more!!! Post by debbie4278 on Aug 4th, 2002, 9:30am 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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Title: Re: I can not stand it any more!!! Post by debbie4278 on Aug 4th, 2002, 9:31am Bottom line, thanks to all of you for being here ;D :D |
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Title: Re: I can not stand it any more!!! Post by jonny on Aug 4th, 2002, 10:10am 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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Title: Re: I can not stand it any more!!! Post by debbie4278 on Aug 4th, 2002, 10:49am 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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Title: Re: I can not stand it any more!!! Post by don on Aug 4th, 2002, 11:40am 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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Title: Re: I can not stand it any more!!! Post by debbie4278 on Aug 4th, 2002, 11:43am 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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Title: Re: I can not stand it any more!!! Post by debbie4278 on Aug 4th, 2002, 11:43am 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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Title: Re: I can not stand it any more!!! Post by jonny on Aug 4th, 2002, 12:42pm 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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Title: Re: I can not stand it any more!!! Post by Ted on Aug 4th, 2002, 1:49pm 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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Title: Re: I can not stand it any more!!! Post by Charlie on Aug 4th, 2002, 2:16pm 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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Title: Re: I can not stand it any more!!! Post by don on Aug 4th, 2002, 2:25pm 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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Title: Re: I can not stand it any more!!! Post by Drk^Angel on Aug 4th, 2002, 5:33pm 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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Title: Re: I can not stand it any more!!! Post by paul_b on Aug 4th, 2002, 5:42pm Stun guns sounds like an Italian thing. What do you think Italy CHers? |
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Title: Re: I can not stand it any more!!! Post by Ree on Aug 4th, 2002, 7:40pm 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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Title: Re: I can not stand it any more!!! Post by debbie4278 on Aug 4th, 2002, 11:03pm 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. :P 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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Title: Re: I can not stand it any more!!! Post by Charlie on Aug 4th, 2002, 11:51pm 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. :D Take care and stick around Mean old Charlie |
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Title: Re: I can not stand it any more!!! Post by debbie4278 on Aug 5th, 2002, 12:01am Thanks Charlie. I'll be around. Me and my crazy ideas. Going to bed. Pleasant dreams to all. Deb ;) :-* |
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Title: Re: I can not stand it any more!!! Post by Ted on Aug 5th, 2002, 12:10am 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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Title: Re: I can not stand it any more!!! Post by Lorsman on Aug 5th, 2002, 9:58am 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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Title: Re: I can not stand it any more!!! Post by Lorsman on Aug 5th, 2002, 9:59am 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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Title: Re: I can not stand it any more!!! Post by don on Aug 5th, 2002, 2:11pm Quote:
Lorsman, You have no idea of how big of an anus you just turned yourself into. |
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Title: Re: I can not stand it any more!!! Post by jonny on Aug 5th, 2002, 4:39pm You were way to nice, Don. I wont even waste the typing to say what I think. .........................jonny |
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Title: Re: I can not stand it any more!!! Post by Charlie on Aug 5th, 2002, 5:48pm Holy Cowplop! :o 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 ;D 8) Really displeased old Charlie |
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Title: Re: I can not stand it any more!!! Post by Candy on Aug 6th, 2002, 10:17am 8) 8) 8) 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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Title: Re: I can not stand it any more!!! Post by sailpappy on Aug 6th, 2002, 10:38am ;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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