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Title: staring ........in the Face of clusters Post by kim on Jan 3rd, 2004, 5:10pm Bandit reads lots of old stories. Those stories faise the hair of familiarity and my soul sings with that connection. A cluster attack is still for me something that is PRIVATE and inexplicable. After 25 years I have not been successful in finding that majic that fix. It just never worked out that way for me. I think i'm in the company of LOTS. I think it's a rare few who can end that pain and then are able to carry on like nuttin. I don't like it when i see pics of imitrex needles spread about like we are junkies.......that to me is a false expression of what is to suffer clusters. It only seeks our curiosity and misunderstanding. It is INCORRECT!!!! I don't like it when folks lend their support in the way of asking if we have 02 or imitrex. Cluster headaches are not in the majority of responding to either and most of us have tried this in varying forms many times over only to experience the total despondent feeling of one more defeat. I ask folks who come here and I ask folks who have been here to understand that this illness is not a common demon that is fought in the common way. Most of us have tried for so long only to fail again and again. It's not cuz we want to. It's cuz that is how this illness affects MOST OF US!!!! There is no magic cure. We must all search for what works individually. cluster headaches are felt by a MINIMAL GLOBAL PERCENTAGE. I am finally starting to understand those old posts...........U know the ones i'm tawkin bowt. I'm happy that attention is being paid,,,,,,,,,,,,but i keep t hinking we are missing home plate......... [smiley=huh.gif] |
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Title: Re: staring ........in the Face of clusters Post by captdshea on Jan 3rd, 2004, 5:20pm Kim- Great post, DITTO. Thats why I do not use meds. David |
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Title: Re: staring ........in the Face of clusters Post by BlueMeanie on Jan 3rd, 2004, 5:44pm on 01/03/04 at 17:20:58, captdshea wrote:
I would like to know how you manage to get through a KIP 10 ??? |
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Title: Re: staring ........in the Face of clusters Post by captdshea on Jan 3rd, 2004, 5:48pm All are not dealing with Kip 10 here. |
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Title: Re: staring ........in the Face of clusters Post by kim on Jan 3rd, 2004, 5:52pm You can ask me that question for the past 30 years......... ya just git through it. Sometimes are betta than others. It ALL sux. I don't know the answers....wish i did............but i'll tell ya this..........there are also no miraculous cures. Clusters feel like yer gonna die, but ...............YA DON'T :) No imitrex or 02 ever took me out a the loop. |
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Title: Re: staring ........in the Face of clusters Post by BlueMeanie on Jan 3rd, 2004, 5:58pm on 01/03/04 at 17:52:49, kim wrote:
I know that everyone is different with CH. Some meds work better for some than others. I was just wondering what you all use instead of meds to get through this Hell. |
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Title: Re: staring ........in the Face of clusters Post by brain_cramps on Jan 3rd, 2004, 6:02pm I've been med-free for years too and... on 01/03/04 at 17:44:48, BlueMeanie wrote:
you manage... what are your options? grant |
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Title: Re: staring ........in the Face of clusters Post by kim on Jan 3rd, 2004, 6:15pm Letting the attack run it's course with NO MEDS, that's how i got through the worst of it. Every time I interrupted cycle with "MEDS" i had the most memorable, intense cycles................Don't mess with mudda nature [smiley=huh.gif] |
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Title: Re: staring ........in the Face of clusters Post by captdshea on Jan 3rd, 2004, 6:21pm BlueMeanie Nice to meet you here at the board and welcome. I've been dealing with CH for most of my life, with a pain free period that lasted six yrs. I'm now suffering again with CH. I'm a perfect Kip 7 sufferer. I perservere is how I get through. Take a walk and deal with it. pf nights to you BlueMeanie, All the best David |
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Title: Re: staring ........in the Face of clusters Post by t_h_b on Jan 3rd, 2004, 6:22pm Wow. |
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Title: Re: staring ........in the Face of clusters Post by captdshea on Jan 3rd, 2004, 6:37pm Kim, Thanks again for your post. I've been feeling the same for a few yrs. When the computers off, I still have to deal with this HA. Robin Trower helps me some 8) David |
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Title: Re: staring ........in the Face of clusters Post by kim on Jan 3rd, 2004, 7:01pm David, I hope the nite brings peace and a sunshiney mawn**** No need to thank me. I'm like you..........and you're like me.........we have each other. The rest is rubble**** Peace :) Plus, Robin Trower has it goin on(GRIN) |
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Title: Re: staring ........in the Face of clusters Post by Mastifflvr28 on Jan 3rd, 2004, 7:05pm Any of you guys ever WITNESS a cluster attack?? Kim, I respect your opinion, and mine is the complete opposite. Mast, who had to rock with Roxy and give her shots at LEAST 4 times a night in NY. |
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Title: Re: staring ........in the Face of clusters Post by kim on Jan 3rd, 2004, 7:24pm glad ya were there for on nudder. I doubt either ofya'd a died without onenudder thou. That's my statement and I'm standin byit. I prefer to be alone. call me weird. You will NEVER see me having a hard time. I am not judging. i am just telling you*** ain't gonna happen. i did it too much alone to simper to anyone at any time for any "ting" Kim who will have clusters forever. They are a part of me that i can't share. Sorry. But I'm not gonna apologize for it **** Some tings just ARE. |
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Title: Re: staring ........in the Face of clusters Post by captdshea on Jan 3rd, 2004, 7:38pm Mast- Thanks for being there for Roxy, I'm sure she needed you there and loves you for it. I don't suffer Kip10 or attacks as you put it. I don't want to surcum to meds, I will feel defeat. I want and need to manage the pain, to keep my head up and deal with this. I do cry for myself and those like roxy But I don't want to. DAVID |
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Title: Re: staring ........in the Face of clusters Post by Mastifflvr28 on Jan 3rd, 2004, 7:43pm Kim, Don't apologize! In the "suffering alone", I totally agree. I, myself would have to be alone too, but I do have trex, and will not just suffer through. Just a new perspective I got when I went to the convention and got to "witness" it. After the 10 to 15 minutes of HELL, things did go back to normal. And the trex needles ARE all over, at my house. In my "drug drawer" anyways, wanna see? :) I know you don't, but they ARE there, and that's how I gotta deal. Never apolgize for your opinion, that's not what I wanted. Mast |
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Title: Re: staring ........in the Face of clusters Post by jonny on Jan 3rd, 2004, 7:59pm on 01/03/04 at 19:05:26, Mastifflvr28 wrote:
4 Times a night? Damn!! ....................jonny |
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Title: Re: staring ........in the Face of clusters Post by kim on Jan 3rd, 2004, 8:07pm don't tink i don't get uppered by the thought of one day seeing a comrade.........i still dunno what or how i'll feel........ what i AM sure of is that we cannot DIE from this..........and we can't very well go around w ailing outloud about it...........(that's how i grew up)..............i am so happy to know i'll (god willing) grow old and laugh my arse off and stare at the meadow..............that is a blessing ...................i'm sorry i just think how i think!!!! I will wear those pants Brian(smile). I'm alive, olives are good and those friggin pants are friggin awsome(grin)*** |
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Title: Re: staring ........in the Face of clusters Post by OneEyeBlind on Jan 3rd, 2004, 8:16pm I personally prefer not to suffer. So I enjoy the indulgence of a shot of trex, or the O2. I am lucky that both work for me. If you haven't found something that works for you, I would suggest you keep looking. Lots of ideas on this board. Different stuff works for different people. Suffering is not why God put us on this planet. At least not in my opinion. I'll take the easy way out every time. And if the trex and the O2 discontinue working ........... I will start my search for the perfect drug combo again. Just my way. For those of you that can get through a cycle with nothing ......... more power to ya ! |
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Title: Re: staring ........in the Face of clusters Post by kim on Jan 3rd, 2004, 8:21pm yep sufferin sure make obvious what most fail to see. Like I said Clusters are a MINISCULE representation of the populus. We do what we gotta do. |
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Title: Re: staring ........in the Face of clusters Post by captdshea on Jan 3rd, 2004, 8:41pm It's not about power, not about crying tough, not about Billy Bad Ass. It is about managing the pain. David |
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Title: Re: staring ........in the Face of clusters Post by kim on Jan 3rd, 2004, 8:48pm Yep. agree with you*** I neve fucking banged my head okay????I never had a "friend" "SHOOT ME WITH IMIT REX" WHAT IS THIS ????I t hink it is a bad signal to people who could act ually be starting a life time of stuff. they see ya stickin the imitrex and taking pictures of it...........i think ya are NOT ASSISTING in any way whatsoever. |
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Title: Re: staring ........in the Face of clusters Post by Mastifflvr28 on Jan 3rd, 2004, 9:14pm Keeping medical information from newbies who just found out they have clusterheadaches is right? Withholding the info that there are trex injections out there, and that they can use less then a full dose and how to do is it right? Roxy never asked me to help her, be near her, inject her or rock with her. The picture I took at the convention had a message behind it, we weren't at the convention just partying the whole time, some of us were suffering. And some of us were ending suffering. Since I can't manage my pain by myself, what's that make me? Mast |
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Title: Re: staring ........in the Face of clusters Post by kim on Jan 3rd, 2004, 9:23pm whatever you are you make yourself, mast. i can't and won't give your name*** I will tell you that you do what youhave to do. I don't know whythis thread offers some kind a rebuttal, where i NEED NONE. Give it if you will. But I am one who was not there. The pics mean to me whatever you mean them to mean........... PFDAN. to you and yours**** |
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Title: Re: staring ........in the Face of clusters Post by Linda_Howell on Jan 3rd, 2004, 9:24pm I don't understand your logic Kim. When someone I loved died...would I have gotten through it alone. Of course! Was it a hell of a lot easier having someone there to hold me and just help me through it. You BET! If you've never seen someone you care about in the throes of a KIP 10, then I don't know what to say to you. LindaH |
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Title: Re: staring ........in the Face of clusters Post by kim on Jan 3rd, 2004, 9:28pm But you had to say somthing, no???? Why?? I said my piece. I feel that way still. I won't ever hold a dying cluster head in my arms. But that could jes be me |
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Title: Re: staring ........in the Face of clusters Post by Jackie on Jan 3rd, 2004, 9:30pm As most of you know I don't have cluster headaches.....but I'm married to a chronic. I've watched him go through literally thousands of attacks.....and it's a pitiful thing to see a human endure. Kim....you are right. Cluster headaches won't kill you...or so they say. However, the fall out from them might.....the depression, the exhaustion, etc. Pain will eventually wear the body and soul out. It will eventually take away ones will to live. I would hate to think where Blake would be without medication.....I'll tell you where he would be...he'd probably be dead. In my opinion....NEEDLESS SUFFERING IS FOOLISH!!!!!!!!! But, it that's one's bag then go for it. Jacks 8) |
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Title: Re: staring ........in the Face of clusters Post by BlueMeanie on Jan 3rd, 2004, 9:37pm I cannot afford to hide for 2 hrs. waiting for the BEAST to leave my head. That's great that you can, but I'm sorry, CH attacks put me incapacitated. (no exaggeration). I would have lost my job years ago. And I sure would have missed out on alot of good times I've enjoyed over the last 25 years thanks to meds. There may not be a cure, but I thank GOD that Imitrex is now available along with the other meds that allow me to enjoy life without fear of being incapacited at any time without notice. |
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Title: Re: staring ........in the Face of clusters Post by kim on Jan 3rd, 2004, 9:37pm Jackie, Needless suffering IS foolish. I've suffered for 30 years. It was outa my hands. Clusters......they do what they do. i'm telling YOU that what comes with this ilness is what comes. Medicine don't work all the time............. Period. It does NOT WORK. IT DOES NOT WORK. Now you all hate kim cuz she said her piece. FUCK IT and Brian i want the pants(smile)*** don't matter. not like i am the white wizard. I only wear freaky pants and tawk my mind> and i don't particuarly care if you care about my words or my pants. In ten years they will look exacly the same**** |
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Title: Re: staring ........in the Face of clusters Post by Opus on Jan 3rd, 2004, 9:42pm Kim, As my cycle gets closer to a year long, I think that maybe my abortive and preventative, though not officially drugs, maybe be causing this cycle to go on far too long. But what of the alternative, if the 29 out of 30 hits that I have aborted were alowed to go the full leanth of 1 to 2 hours what would I have to do to survive? Seperation and fostercare are the only solutions that I see, they are always in the back of my mind when I am hit with an unstopable and someone needs my help. This is my personal choice, but as treatments are diffrent for everyone, so is non treatment. Opus/Paul |
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Title: Re: staring ........in the Face of clusters Post by brain_cramps on Jan 3rd, 2004, 9:49pm on 01/03/04 at 17:10:05, kim wrote:
on 01/03/04 at 21:37:39, kim wrote:
WOW!! That was a quick 5 years LOL ;) |
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Title: Re: staring ........in the Face of clusters Post by OneEyeBlind on Jan 3rd, 2004, 9:59pm Perhaps the first 5 years was spent trying to figure out what was wrong. Lets not start disecting each other's posts. It gets us nowhere. Kimmy's point is that she has found no meds that work for her successfully all the time. And perhaps emotionally she finds it easier to just give up, rather than to keep seeking the ultimate coctail. While I don't agree with this philosophy, I can respect how she feels. Sometimes in life we give up because the pain of failure just hurts worse than the headache. And Kim, please feel free to flame me if I am wrong. |
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Title: Re: staring ........in the Face of clusters Post by brain_cramps on Jan 3rd, 2004, 10:05pm That wasn't meant to disect Kim's post. I just kinda found it funny. ::) guess not... grant :-X |
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Title: Re: staring ........in the Face of clusters Post by kissmyglass on Jan 3rd, 2004, 10:10pm Kim, I think you done lost your mind.... Guess you had to be there to understand the pic..... Kev |
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Title: Re: staring ........in the Face of clusters Post by Linda_Howell on Jan 3rd, 2004, 10:12pm THANK YOU Kev. LindaH |
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Title: Re: staring ........in the Face of clusters Post by Mastifflvr28 on Jan 3rd, 2004, 10:13pm Kim made a few points. If she wants to give up on finding a magic wand for HER that is fine, but to say that we should WITHHOLD meds info and advice for newbies is another thing. Mast |
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Title: Re: staring ........in the Face of clusters Post by ClusterChuck on Jan 3rd, 2004, 10:22pm I seem to think that many of you are missing Kim's point. She is saying that meds do not work FOR HER. In her years of dealing with it, nothing she has tried, works. I don't think she is condemning ANYONE for using what works for them. Many of us go thru too many hits without relief. We deal with them as we have learned to. Kim and those that do not use drugs, are not super people, they are survivors, just like the rest of us. The clusterheadache beast is VERY ingenious! He attacks us each in our own way. Just as we get attacked in our own way, we deal with it in our own way. Kim is no better than the rest of us, nor is she any worse (although she IS kind of wierd! heehee). She and I and others, that have had this for many years, have learned how to deal with the beast. And deal with it we shall! And many of us want to deal with it ALONE. No one near us. No one witnessing us. No one "helping" us. As I say, "Leave me the FUCK ALONE!!!" Cluster headaches are NOT imitrex and oxygen! Cluster headaches are the extreme pain. Cluster headaches are the isolation we feel. Cluster headaches are the ignorance we are forced to deal with. Cluster headaches are how we learn to deal with them and life. The above is the way I understand Kim to feel. If I am wrong, she WILL let me know! HaHa!!! Chuck EDIT: I just read the posts since I started typing this. Some of you have PISSED ME OFF! Kim is NOT nor has she EVER been a quitter! I resent those that accuse her of it! She has NOT quit! She has ACCEPTED her lot in life! She fights just as hard as any of us! |
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Title: Re: staring ........in the Face of clusters Post by Ted on Jan 3rd, 2004, 10:40pm A friend told me about this thread and how it affected her. So I came back here to read it and see what it was all about. Here's what I see. Kim started out saying Imitrex and O2 don't work for her. "there is no magic cure." But then she went on to say that because of her experiences she would sum it all up as that's how it is for most and say it's like that for a majority. And that's the general premise and perspective behind what she said. It doesn't follow the info in medical literature. Agreed. I see no reason not to show Imitrex needles or them being used, if that's what happened that pissed her off. But her perspective is that most people are like her. And when my head is in a bad cycle she's right on for how I am. But then she's asked, pointedly, how does she get through a Kip 10? How did any of us before we found a doctor who found something that would work? Right now we're all spoiled because we found something that helps sometimes or always. But how did you ever survive a 10 before? Because you had to. Because your other option sucked too and knew this, at least, would end. Then in another thread, and the one that seemed to piss people off the most she says she doesn't want anyone else there when she gets hit. Whether offering help or not. This seemed to upset people. Not because Tracey, thankfully, had Cat to help her. But because they deem that as impossible and ridiculous. For different reasons I do not want anyone trying to help me. It's not a matter of being tough, as some of you claim that attitude to be but it's a matter of being weak. No one is in your life for good and if you find someone who not only will, but wants to help you, when they leave you will find it near impossible to deal with a 6, let alone a 10. So, for fear of that weakness I refuse help when it's offered. It's not strength and anyone who is so idiotic to be insecure enough of us who refuse help to percieve it as strength and resent us for demanding to go through it alone, get over it. Most of us are fucking weaker than you and wish so much we can take it but know we'll be too weak to face the next ones alone if ew get spoiled. So Kim saying she wants to take it alone? Fuckeneh! Me too. All the time. So, basically, Kim doesn't like how many deal with their pain and those many don't like how Kim deals with hers. Big fucking deal. Deal with your own pain and don't give a fuck how anyone else deals with theirs if it doesn't hurt you. Don't hold dying clusterheads if it causes you pain and you don't care and don't let them go if you get a feeling of helping and inner love by doing such. Jonny. Four times a night is tit. I thought you were king. |
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Title: Re: staring ........in the Face of clusters Post by OneEyeBlind on Jan 3rd, 2004, 10:51pm OMG ......... I suddenly LOVE this thread. ............... Out of the woodwork ............. never mind. I'm smiling. ......... Omg, I thought you hated her. ......... and the things you see here always surprise me ......... lmao. 2004 is gonna be a good year ! ............... shiiiiiiiiiiiiiiiiiiiiiiiiiiiit |
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Title: Re: staring ........in the Face of clusters Post by Tiannia on Jan 3rd, 2004, 10:53pm Edit: Maybe I missed the point but once i started this all came out. Sorry before hand if I seriously piss people off. I have not been dealing with these damnable things for 25 year or even 5 years. I have only had 7 months of torture. I know that the imitrex, that while it does not always help cause all I have is tablets and is not always available as on option to me due to the minimal amount that I can get, does help and has helped me to still be able to attempt to lead a normal life. Continue to work throughout my day so that I can keep my house as I live pay check to pay check, take care of my kids cause the attack does not care if it is time for my sons nebulizer treatment or when I get to get the kids from daycare or dinner time or when my 18 month old wakes up in the middle of the night. It has allowed me to feel like I have a little control back. No, Kim, these HA's will not kill me and I do struggle through them and I do fight and they subside and I get up and move on. But 6 months ago I thought I was going insane. I thought that I was going to die. And there are times even now when they hit hard and fast that I feel that way again. Hell I have even asked for it cause I see the pain in the eyes of my husband and my kids when I am lying on the floor unable to move. And even if CH is not terminal, I do honestly believe that is could easily lead to many deaths. There is a mountain of research to prove that long term uncontrolled pain is a leading cause in deaths. Be it from suicide, malnutrition (people simply starving themselves to death because of the lack of strength and melancholy), and depression, where people simply give up. Everyone has to have a reason to get up everyday, and prolonged pain effects every aspect of your life. I would have lost my job that I started 3 weeks before I first CH hit. I had the “When you are here and focused, you do great. But how can we make sure that you are here?” talk from my office manager. Thankfully the partners appreciate me more and I was able to talk to them and work things out. I have hit depression, there I cant eat and afraid to sleep cause I know that I am going to get hit. Where all I want to do it cry and curl into a little ball. I have been angry, hell I am still angry and want to know why. Why the fuck do I and the rest of us have to deal with this fucking shit where there are so many other people out there who have nothing that they deal with. They seem to have such a simple uncomplicated unPAINful life and why do people who do everything in their power to help everyone else around them get hunted by this god forsaken beast? You are right there is not an answer. There never will be one. Each of us has to get through this the best way that we can. If that is with Imitrex and O2 great, if that is with Shrooms great, if that is without anything and alone head banging more power to you. I personally am not that strong. Even when I have tried my hardest to keep my kids and especially my husband from having to see me and deal with me when I am being hit, I have learned that I cause them more pain by doing that. No I am not one that wants to be alone. I want to see my kids I want to see mt husband, I dont want anyone to touch me in general, but seeing the ones htat i care about the most helps me to get thruogh it better. Cause I know that they are the reason that I am fighting. But that is my choice and what helps me. There is not an all encompassing cure. There is not a "One size Fits all" way to handle these. And from what I have seen each and every person gets hit different. I don’t get K10 every day. But when those days come I am extremely grateful for what meds I do have that allow me to have some semblance of ability to control and abort them. I applaud the strength that so many show here. Not just the sufferers but the supporters as well. I know the stress that I have put on my husband because of these and I feel like I have failed him. That there was something that I have done or did not do that brought these fucking things into my life. So many here have helped me and without their guidance I would not be able to ask the questions and get the treatments that I need to have to ensure that I am getting the best help possible. If they had decided to not give me info or to not share their experiences I would probably still be sucking down antibiotics and antihistamines cause all I was told was well it sure sounds like clusters but your a women so it has to be a sinus infection and sinus headache. And I would have bought it cause so much info says just that. But people here showed me that many women get CH's and where to find the back up to show them that they where wrong. Granted CH is not common (even though I believe that we are a larger group as there are so many misdiagnosed), and we are not a large part of the populous, but that does not mean that we should not raise our voices and be hear. If Wailing in the night gets attention then maybe we should do it more often. **sorry for the typos, typing with a sleeping 18month old on my lap and on an arm. Tiannia |
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Title: Re: staring ........in the Face of clusters Post by Jackie on Jan 3rd, 2004, 10:58pm TED!!!!! Good to see you.... :) And I haven't even read your post yet.... :) What did you say? Something profound I'll bet.... :) Jacks 8) |
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Title: Re: staring ........in the Face of clusters Post by BlueMeanie on Jan 3rd, 2004, 10:59pm My apologies to Kim & the others. Believe me, I know how you got through a KIP 10. I read your post as you didn't want to use meds and just take what's dealt to you. I didn't realize NOTHING works for you and I'm sorry. Without public awarness, it will just take that much longer to develop more meds that will someday work for you. In the meantime, I feel it is important to notify other Clusterheads of something they may not be aware of. It just may work for them and save their dignity and stop their pain. I respect your privacy. I never let anyone see me and/or take pictures of me in that condition. I wasn't there when the picture was taken. That moment was for those who where there. I'm sure it helped in their own way. PFDAN |
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Title: Re: staring ........in the Face of clusters Post by Charlie on Jan 3rd, 2004, 11:14pm Hi Ted. God I miss this stuff. :o I'm needed a fix Ted. All is right with the world. This thing got slowly pretty stupid anyway....... :-/ Charlie Flog me |
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Title: Re: staring ........in the Face of clusters Post by Mastifflvr28 on Jan 3rd, 2004, 11:33pm Blue Meanie, Just to be clear here, there was NO picture taken of a sufferer getting hit, OR injected. When we were at the convention in NY, some of the people that were at home were saying we were having too much fun, and that the OUCH convention was just about partying. Well, I just took a couple of pictures of our endtables in our room...that had needles and imitrex vials strung about the tables. And posted "It ain't all about the partying". Just wanted to clear that up, so that no one thought a sufferer had gotten a picture taken of them in a hit. That would NOT be right!! Not for the fun of it anyways...maybe for educational purposes. Also, I appreciate the perspectives from the newbies posted here...newbies to CH and to this board. Thanks, Mast |
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Title: Re: staring ........in the Face of clusters Post by Roxy on Jan 3rd, 2004, 11:44pm Before I start....nice to see you on the board Teddy.... ;;D OK...now my rant: Should Linda not have posted? Since she is a chronic....I would think she has every right to post to a/this thread, or wherever the hell she chooses. Did you want no other opinions? Or is this just a manifesto that no one is to answer? All I can say after reading this...and, since my name was brought into this fray....I felt like I should throw in my [smiley=twocents.gif] . I am gathering that you are episodic....if so....that's cool. Don't presume to state opinions of what others should do. Even us sorry chronics are able to take a hit.....and keep on rolling, enjoying life to the fullest. We can do that because of those little things called meds. But.....I don't think you quite get that part of it. If you do actually understand the life of a chronic...and still feel the way you do....then all I can say is......Fuck Off!! on 01/03/04 at 21:28:48, kim wrote:
I hope you never have to. I hope you never have to witness someone else in that kind of pain. It's not the cluster that will kill someone....it's the effect on their life. That is something of which the meds will help. I'm sorry you haven't found anything that works for you. Or if you chose to go without......my hat is off to you....you got bigger balls than me. I've done the no meds route, and I've done the meds....guess you could say I go both ways. Besides....if you want to do this "all alone".....why are you on the board? This board is nothing except a "med" of a psychological kind. Tracey (the really grumpy chronic tonight....flame away) |
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Title: Re: staring ........in the Face of clusters Post by Rick_K on Jan 4th, 2004, 12:12am OK shit I can help but jump in on this…. If dealing with the beast without any help is what floats your boat than more power to ya. Been there…done that....aint gonna do it again. I understand having no meds or help. Myself, I have dealt with the beast for 35 years and spent the first 20 dealing with it with shear willpower only because the medical community didn’t know what the fuck was going on and neither did I, there was no choice but to suffer. And yes it can be done that way but why?...................I went through all the bullshit diagnosis of eye strain, sinuses, “your fuckin nuts”, etc. but then I found out what it was and after going through some very strange treatments I found the right doc, but I must ask, why would or should someone suffer ??? I found O2, it is a beautiful thing, also verapamil, caffergot, presodone, imitrex…………… There is a reason these are call “Suicide Headaches” and denying meds or information to people helps no one. Having dealt with this shit for this long and 20 years without any help I leave you with these thoughts……. Do not get in between me and my pharmacists………..I will give up my oxygen tank when they pry it from my cold dead hands Rick |
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Title: Re: staring ........in the Face of clusters Post by BlueMeanie on Jan 4th, 2004, 12:18am Quote:
At least not ALL of it. But Davenport is gonna be fun. LOL That's great Mast. Wasn't thinkin' nuttin' bad about you guys. I'm sure you had a good time. Just like Davenport will be. |
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Title: Re: staring ........in the Face of clusters Post by stevegeebe on Jan 4th, 2004, 7:11am If I want to cross the plate, I figure I'm going to need a bat. And if I want to increase the odds of scoring, I'm going to have to swing. Getting to base on "balls" or by getting beaned by fast balls is something I've tried for many years. But I'm tired now and the bruises are deep and not easily forgotten. Bat boy, bring me the lumber...I'm going try to hit it out of the park...or at the very least, lay down a bunt. Steve G |
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Title: Re: staring ........in the Face of clusters Post by Paigelle on Jan 4th, 2004, 9:13am on 01/03/04 at 18:15:36, kim wrote:
I totally agree with this post. If I let the cycle runs its course, I am usually better off. If I take Imitrex, I feel awful plus my heart rate goes off the wall. I will also have another attack within a few hours of the Imitrex and it would be one that Imitrex wouldn't help. I haven't tried O2. With the cycle I just finished, I was given Prozac and Inderal. I quit taking the Prozac because I felt nothing was happening with it. The only thing I wanted out of this cycle was not to be hit in the day, when I was alone with my 3-yr old. Of course, I didn't want hit at all, but I knew it was going to happen. If hit in the night I have the option of being alone and not having to care for someone else. If hit during the day, I still had to care for my son, which is hard when you can't even speak. |
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Title: Re: staring ........in the Face of clusters Post by BobG on Jan 4th, 2004, 10:16am Kim, you're ok by me. Ted, ditto what Charlie said. |
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Title: Re: staring ........in the Face of clusters Post by jadedgazer on Jan 4th, 2004, 10:30am I have been reading this thread, considering what has been said here and I still don't understand the logic. Maybe I am just a little slow. I am certain that my opinion doesn't count for much, but at this point I really don't care who likes it and who doesn't. I am chronic. I have these damn things every single day, 6-10 times a day...it has been this way for over two years now, 836 days without a break from these things. Not very long compared to some. I am tired. At this point a K6 is excrutiating, tormenting and exhausting. I haven't found my 'magical cocktail' yet. Key word being yet. But I will be damned if I am giving up! Imitrex doesn't work for me, and O2 doesn't all the time either. But there is something out there that will, I know that there is. There is a preventative mix that will help me. I have to keep hoping, for myself and others who suffer with me. Yes, there are times when I have to bite the bullet and 'deal' with a K9 or K10 and the O2 just won't help. I have to endure the look of frustration on my husbands face as he holds my hand. But he is the only one who I allow to see me that weak. I don't care to be seen in that state by anyone, but I would not hesitate to hold someone else in the throes of that kind of anguish. For me to turn my back on another sufferer that way would be cold and heartless. No this may not kill us, but it beats us down sometimes to a point where we wonder if living is worth it. And it is those of you here on this board and those supporters around us that are willing to rock us and hold us and give us shots when we aren't able to do so ourselves that remind us that life is worth living and that we will beat this thing. One day I may find a concoction that breaks this endless cycle that I am in, and by sharing that concoction here I may help someone else. This beast is different for everyone, but we can only learn from one another and hold each other up along the journey to a brighter day. Flame me if you choose, my skin is growing thicker by the day. |
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Title: Re: staring ........in the Face of clusters Post by captdshea on Jan 4th, 2004, 11:00am DITTIO -Clusterchuck! I've been on this board for 2yrs. I think this is the best thread I've read in that 2yrs. For me this thread is about living life with CH.... I thinK DJ meant for this board to be just that. The medical advice here is great and gives us tools to deal with the doc"s But in the end are we not getting treated by the Medical Pros. for the most part ??? David |
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Title: Re: staring ........in the Face of clusters Post by Paigelle on Jan 4th, 2004, 12:05pm We all have opinions about what works and doesn't work. We all know that some meds works for one cycle, but won't work for the next. I will try anything, but have found that I have tried some meds that have either increased the length of my cycle or raised the KIP. I understand what Kim is saying about letting Mother Nature run its course. Of course being episodic it is easier to feel that way. There is no way in hell that someone chronic could do that, because nature is never finished with them. |
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Title: Re: staring ........in the Face of clusters Post by cathy on Jan 4th, 2004, 12:27pm Hey Kim you quitter it's for you.... ;;D If People Disapprove of You.... Make being disapproved of your hobby Make being disapproved of your aim Devise new ways of scoring points In the Being Disapproved of Game Let them disapprove in their dozens Let them disapprove in their hordes You'll find that being disapproved of Builds character, brings rewards Just like any form of striving Don't be arrogant, don't coast On your high disapproval rating Try to be disapproved of most At this point if it's useful Draw a pie-chart or a graph Show it to someone who disapproves When they disapprove just laugh Count the emotions you provoke Anger, suspicion, shock One point for each of these and two For every boat you rock Feel yourself warming to your task You do it bloody well At last you've found an area In which you can excel Savour the thrill of risk without The fear of getting caught Whether they sulk or scream or pout Enjoy your new found sport Meanwhile all those who disapprove While you are having fun Won't even know your game exists So tell yourself you've won Sophie Hannah Cathy :) |
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Title: Re: staring ........in the Face of clusters Post by Unsolved on Jan 4th, 2004, 1:49pm Kim ~ You must NOT be suffering from KIP 9's and 10's like some of us. Going through a couple with no meds is one thing, but to go through them ALL with no meds is just plain CRAZY !! ::) ::) (I do agree that some meds can make things worse though) ~ Clusters CAN Kill ~ (indirectly) I've been dealing with this for 15 years, the last 3 years chronically...and without meds...i'd be dead for sure !! A person can only take so much physical torture before they crack !! Unsolved (http://cluster.home.insightbb.com) |
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Title: Re: staring ........in the Face of clusters Post by OneEyeBlind on Jan 4th, 2004, 2:27pm Personally, I think Kim might like playing the "disaproved of game" because like most on this board ...... she has an opinion. Great one Cathy ........ but Kim ......... remember ....... giving up is not an option, only a conclusion. Love ya ! |
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Title: Re: staring ........in the Face of clusters Post by jonny on Jan 4th, 2004, 2:57pm on 01/04/04 at 13:49:58, Unsolved wrote:
I guess the decade or better I went with no meds while chronic was just in my imagination, I would rather be chronic than episodic anyday....I never live in fear of that time of the year when the beast is going to rip me a new one.....I know what it is, where it is and when it will strike (For the most part) and I plan for it. Chronic with no meds can be done and done for years....Ive done it....was not fun but it was done. PFDAN ............................jonny |
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Title: Re: staring ........in the Face of clusters Post by ClusterChuck on Jan 4th, 2004, 3:10pm on 01/04/04 at 14:57:28, jonny wrote:
Right on, Jonny! I have said this many times, and most eposodics think I am crazy! We chronics have learned to deal with this, just as Kim has learned to deal with no meds. But still most of you are missing what Kim has said! Meds DON'T FUCKING WORK for her! NO ONE is saying drugs and techneques should not be shared, and especially with the newbies. Kim is doing the same thing. MEDS DON"T WORK FOR HER, and she is proof that you can survive without meds. Why are so many bad mouthing her for doing the same thing most of us do? She is telling how she copes with it. Sheesh!!! Chuck |
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Title: Re: staring ........in the Face of clusters Post by BlueMeanie on Jan 4th, 2004, 3:34pm What I like about this board so much: A chance to SHARE in conversations about CH's with other sufferers and supporters (people who know what this condition is all about). I couple of months ago I thought I knew most everything about Clusters. After all, over thirty 10 week cycles and every med in the book. How could I NOT know everthing. To me, this post is about LEARNING. The unknown seems to make us a little defensive. Thanks for the post Kim. I've learned just a little more about Clusters and how they effect us all differently. |
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Title: Re: staring ........in the Face of clusters Post by Unsolved on Jan 4th, 2004, 3:35pm Well....I agree w/ a couple of things you guys have said...being chronic myself...knowing when an attack will most likely come is an advantage...but I still miss the PF times that epesodics enjoy. And when meds don't work...I agree, Don't take em'. But, damn...I think I'd be on the hunt for something else that does work. (Hence...where I'm at now). Thank god the Imitrex works for me ! Unsolved |
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Title: Re: staring ........in the Face of clusters Post by brain_cramps on Jan 4th, 2004, 3:35pm on 01/04/04 at 13:49:58, Unsolved wrote:
WTF? |
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Title: Re: staring ........in the Face of clusters Post by jonny on Jan 4th, 2004, 4:12pm on 01/03/04 at 22:40:57, Ted wrote:
Just saw this. Seeing that I found a prevenitive cocktail to work for me its been well over a decade since I had to deal with four a night, Do I forget just what four a night means?....probably some what because its been so long, but I dont forget doing it with only ice....like someone said in this thread "Dont get between me and my meds!!!!" Lith and Verap still working, Ted....hope so dude!! ..............................jonny |
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Title: Re: staring ........in the Face of clusters Post by Mastifflvr28 on Jan 4th, 2004, 4:54pm Chuck, yes she IS saying drug info should not be shared: kim said: Quote:
Kim's way of dealing with clusters is not my problem, the above quote is. But it doesn't matter anyways, because ch.com will still be ch.com where we share info, techniques and even pictures :) Mast |
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Title: Re: staring ........in the Face of clusters Post by Linda_Howell on Jan 4th, 2004, 6:47pm and the above quote Mastiff just used, plus Kim said she doesn't like it when we give newbies info on using 02 and Imitrex is why so many of us are up in arms. Nothing else. Kim has every right to not use meds and to say they don't work FOR HER and to post it. No one said otherwise. 02 works for the majority of us. Ch.com was meant for support and INFO and I'll be damned if I stop trying to help newbies by telling them to try 02, and I'll also support to the death Mastiff posting of that picture that had a concise message that some may not have understood. After all, I was there. I am so OUT of this thread. As Charlie says...... BLEAGH!!!!!!!! |
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Title: Re: staring ........in the Face of clusters Post by ClusterChuck on Jan 4th, 2004, 7:42pm Mast and Linda, now I see why you are up in arms. Looking at it that way, I agree with you. BUT, I did not read it that way. The way I read it is that she is upset that it sometimes seems that some are saying you MUST take drugs. I felt she was saying that if they don't work for you, there are other ways of coping. Cluster headaches are NOT imitrex and oxygen (or any other medication). Cluster headaches are extreme pain and suffering and how you learn to deal with it. Whether is is medication, diet, lifestyle, Charlie's redirection technique, yoga, meditation, prayer, bananas on your forehead, cutting your hair (as my mother suggested) or anything else or combination of them. In other words, there are MANY ways of dealing with this curse. Let all the newbies here hear ALL the ways of dealing, not just the drug approach. Which we do most of the methods, but rarely do we comment on the drug free methods. My present "cycle" (even though I am chronic) is very resistant to any meds, except O2, which is only about 70% effective. I am still looking for the right combination. But in talking with people on this site, I have learned to deal with the hits that O2 did not help. If I never find the right drugs, I now know that I can continue to live, even if I have to be drug free. That was the way I interpreted what Kim has said. I am sorry I did not see your reading of Kim's comments. Chuck |
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Title: Re: staring ........in the Face of clusters Post by jonny on Jan 4th, 2004, 8:08pm on 01/04/04 at 19:42:01, ClusterChuck wrote:
Ditto Chuck......14 years chronic before meds and no one to help.....I did it and I did it alone!!!!! ...............................jonny |
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Title: Re: staring ........in the Face of clusters Post by cootie on Jan 4th, 2004, 8:23pm I think a GOOD supporter supports everyones opinion..."I know I do". So......your all RIGHT in my book. Not sure Brad could of gotten thru much more of this tho after his first year of chronic ch without sum sort of relief.....it was wearin him down mentally and physically and effect'n his work and realtionships drastically....it was gettin bad....not sure where it would of ended....or how without help. Deal with your own hell in your own way...I say that's the RIGHT way. No matter how ya look at it were all in this boat tagether with no cure.......lets row people. Supporter Pam that thinks ya all ROCK and me loves Kimmie-speak And Robin Trower RULES.....he's my FAVORITE !! Hey Ted...how YOUH fuckin doin !!!!!! (smiles) |
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Title: Re: staring ........in the Face of clusters Post by Ree on Jan 4th, 2004, 8:27pm aren't you proud of me for not getting into this one... til now............... To each HIS/HER own that's all I have to say... Young women today think it strange that WE had natural childbirth... I do too for that matter now after the fact... Why would anyone chose pain when there is an alternative to that intense pain...Today they have epidurals and paint their nails while in labor... My opinion... I know I don't have CH but I have a Sufferer in my house that I have seen in all predicaments1) before we had meds........... suicidal pain... 2)With meds ... suffering with some relief and 3) Peek time during intense 10's when the meds don't work at all... To each his own and not for anyone to judge... Our choice is to use the abortives and relief... with MY Support also which some people might frown on because they like to go it alone... I also saw alot of sufferers at the convention thank God for the support of others during that magic weekend............. again To each sufferer his own technique to get through the most horrendous pain imaginable to MAN/WOMAN... REE |
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Title: Re: staring ........in the Face of clusters Post by cootie on Jan 4th, 2004, 8:36pm In human nature we learn from our expireinces includeing PAIN......it's fucked up havein pain for no reason and too often.....I don't think we have natural instincts to know how to deal with it in us nor do animals......it's jus plain WRONG ! Animals in pain go off by themselves or become distant . So......who knows what's really rite or wrong........hang in there and PF wishes to you all Pam Why'd all this stuff get stirr'd up about the pics in NY and what went on...did I miss sumthin ? NO it wasn't jus a big party either......was 'mostly' people makein new freinds in a nice realxeing setting with sumthin in common.......instant bonding sum may of never expirienced till then. It was kick ass cool ! |
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Title: Re: staring ........in the Face of clusters Post by jonny on Jan 4th, 2004, 8:41pm It was kick ass cool meeting you Coots....thats why your on my website!!!! ..................................jonny |
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Title: Re: staring ........in the Face of clusters Post by 12gagueblast on Jan 4th, 2004, 11:02pm i took it the same way mastif did. not putting info out. truely sorry you have found nothing that works kim and if you are cool with that that is fine too. i hope they (CH) just goes away for all of us. But..... If someone tells me they are cold i will certainly tell them about fire, even if some people do not like fire. i think it is only right. |
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Title: Re: staring ........in the Face of clusters Post by Paigelle on Jan 5th, 2004, 8:12am I think we should definitely let sufferers know about any and all help there is out there. I wouldn't know what to do if people here didn't offer some advice. It is great to know what is working for some and not working for others. When I go to the Dr about CH and they give me a new med, I don't get excited because I know the chances of it not working. If it works for a few hits, I still don't get excited, because I know it might not work for the others. But I would never withhold anything that might be of use for someone else. I think we should let people know about Imitrex and how it works for some. I tell people about it, but I also let them know that I can't use it. It is a matter a giving people options. Lord knows, I spent 20 years devoted to an ice pack and nothing else. I have found off and on meds that did work and then ones that screwed up the cycle worse than ever. But I always try, mainly for my son, so he can have a mother who is functioning. |
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Title: Re: staring ........in the Face of clusters Post by AlienSpaceBabe on Jan 5th, 2004, 10:41am When I reach that point where my hands are shaking so hard that I can't stick myself, I'll take another CHer sticking me over taking nothing. Sorry you haven't found meds that work for you, Kim. Guess I'm lucky I have.... like most chronics, there are breakthroughs - sometimes 4 to 6 a day for a period of time.... but I wouldn't give up the verapamil! Without preventative and abortive meds: Couldn't have continued working in my current/past position... leading to loss of income... leading to loss of dwelling.... Couldn't have found the painfree time to spend with my kids and be the best mother I can be.... Couldn't have finished higher education.... Wouldn't be able to read books (those swimmy eyes make it hard to read)..... Wouldn't be able to drive (was too damn tired!) AND..... Without the medical info on this site: I would not have oxygen (which works about 60% of the time, and fully aborts about 30% of the time) I would not have imitrex injections (which work almost every time, and fully abort about 70% of the time) I would not have tried prednisone (which gave me the pain holiday I needed 2 years ago in order to want to keep living) Never would have tried verapamil (which works for me, keeping the high points down to breakthroughs and the low points to shadows or nothing) THANK GOD for this site! This site gives us the information we all need in order to live with cluster headaches, whether we're chronic or episodic. It's OUR job to go through the information, discuss it with our doctor, and make the right decision for ourselves. As for that infamous picture Michelle took: it made me cry.... guess you had to be there in order to really GET it. people getting hit, left and right.... That picture shows that it's not all fun-and-games at conventions... that people really DO get hit in public, in private, with friends, repeatedly..... Just my 2 cents.... Lizzie |
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Title: Re: staring ........in the Face of clusters Post by Tiannia on Jan 5th, 2004, 10:57am on 01/04/04 at 23:02:38, 12gagueblast wrote:
This is where my thoughts came from as well. What I got from Kim's posts was that because Imitrex and O2 dont work for everyone that we shuold not tell people about them when they log on. I understand that a CH is not the meds we take or dont take, but the pain and the struggle that we live with daily. My log arse post just came from the the idea that without the advise, without the support, wothout thee comments that everyone has given me over the past 7 months, I think I would be in a very bad place now. As it is I have met some wonderful people that when it gets really hard I can send a pm and get the virtual hug that I need to get through. I can ask advise from dealing with doctors cause I am only starting out this long journey while many of you have been traveling for years. You stories, your comments, your successes and failures allow me to prepare myself for what I deal with and make me stronger. I know that there are more meds out there that wont work then there are ones that will. Without this site, I would hate to have been living in a prepetual nightmare of hoping that everything will stop these and not having a place to come when I needed to vent when they dont. Tiannia |
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Title: Re: staring ........in the Face of clusters Post by Paigelle on Jan 5th, 2004, 11:02am on 01/05/04 at 10:57:46, Tiannia wrote:
Without this site, I would have went completely insane with my cycle. I needed the support from people who have been and are going through the same thing. The people who know exactly what it feels like and won't say take an aspirin. The people who you can depend on and who are willing to share advice and be there when you need them. I found that to be one of the most important things about this website. Yes, we get advice on medicine, but we get a helluva lot more than that. |
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Title: Re: staring ........in the Face of clusters Post by Margi on Jan 5th, 2004, 12:43pm I, too, have witnessed thousands of cluster attacks. Mike clustered for years unmedicated. It is hideous pain to get through, but he does it. Clusterheads are the toughest people on the face of this planet. You have to be. Fortunately, Mike is one of the ones that O2, imitrex and verapamil helps. He is clustering now, but thanks to the preventative and abortives, he's managing his cycle very well. However, there have been a myriad of meds that have NOT helped him and some that have, indeed, prolonged his cycle. I completely understand Kim's attitude about meds in that regard. However, my personal opinion is that we should ALWAYS educate people as to the weapons in our arsenal. Nothing is universal, but some things do help some people. Why not take a chance at helping? Kim, I'm sorry that meds and O2 don't work for you. I pray that someday our research will find a new pain control method that will. And I hope that you won't give up on trying new things as they are developed. You have the right to pain freedom and I hope you won't let that right pass you by, if something new is developed. As to the being alone thing....I think that's one of the most common traits of a clusterhead and that's one of the most difficult things for a supporter to respect. Ted, nice to see your words here. Sorry to see that you've become a guest again, though. |
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Title: stare at this Post by rumplestiltskin on Jan 5th, 2004, 2:16pm So I sat here...pondering just what Kim was sayin...I got out my Jar Jar Binks translator...and still I was left shakin my head...or..."shakey me not knower****like smarty was lookin" Then Georgia asks "Are you tryin to figure out what motivates KIM ? "...outta the mouth of babes comes wisdom. Never have I seen more to leave...and less to take....hell...even the vinegar and blue cheese was better advice. http://photoshop.superdownloads.net/uploads/o2face2.jpg |
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Title: Re: staring ........in the Face of clusters Post by BlueMeanie on Jan 5th, 2004, 2:20pm OMG. LMAO. What a smartass. |
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Title: Re: staring ........in the Face of clusters Post by Edna on Jan 5th, 2004, 4:28pm Kim, first of all, I hope that you know you do have the right to your opinion. And, that I think all of us here would agree or what would be the point in sticking around. I, myself, applaud ANYONE who CAN go med free. But when you say "Don't mess with mudda nature".....I wonder what exactly you mean by that? I mean really, mudda nature didn't exactly provide us with electricity, but I'm sure glad somebody fucked up and found it since I surely enjoy using it every day! Furthermore, it's not mudda nature that provided us with hope in treatments for cancer. Would you still choose to go med free then? I'm just trying to understand, is it about med free for EVERYTHING?? or with your ch?? What concerns me is that if you're no longer looking or trying for something that "would" work, what if you miss the treatment that WOULD work for you. "Since I can't manage my pain by myself, what's that make me?" Mast......I think that makes you loved by lots of us here. I myself, as I've admitted to many, AM A WEENY!! I'm thankful for my trex. I CANNOT handle my pain by myself!!!!!!! And, yes, I did live through the years of NO MEDS, but when I think back and remeber the quality of life during my episodic ch attacks......I cringe and cry!!!!!!!! You know why?? There was NONE, NO quality of life, I was just in existance, floating by and waiting to resume life when it would end. I was lucky enough to have supporters.........3 of them being my children at ages so young it keeps me crying right now to think of the years I endured and the torture and strain it put on our lives. GOD.......I don't know how I made it through. Having my "babies" sit there, do GOD knows what while I was incapacitated for about 2 or 3 hours at a time. (They sure heard cussing at young ages that's for sure) To the point that all I could do was lock the dead bolts and hope for the best. Have a 2 or 5 year old come up to you and just rub your head for you. It hurted like hell, and I wanted to knock the hell out of them, BUT I COULDN'T.........they were only babes and were only trying to help. Guess that's why today I can have someone there with me. And, yes, even sometimes I WANT that. AND NOW, having this place and ppl here that offer something only chers and their supporters can understand...........well, it fills a void in me that I didn't even know existed. Therefore, when you say "I won't ever hold a dying cluster head in my arms.".........I truly am perplexed. It is my UTMOST hope that you're meaning you believe clusters can't kill?? certainly NOT that you would choose "NOT" to hold them, because if that's what you DO mean......well, you don't want to know MY OPINION of that one. "It's not the cluster that will kill someone....it's the effect on their life".......as Tracey said here, it is the different effects that can. As for the pics of New York.........it was my perception when I viewed it that we all needed a reminder of what we endure..........and the genuine compassion shared by those there at that convention. Both educational, and emotional for many, that picture brought me back to sincere reality in a split second, and gave a big tug to my heart!!!!!!!! "Even us sorry chronics are able to take a hit."......yep you right Tracey........you BRAVE chronics DO have to TAKE hits.......I mean really, it's not like you could shoot up with your trex at EVERY given attack is it? Maybe some just don't understand that. NOW though, I draw the line with you girl when you say..."....guess you could say I go both ways".......LMAO......I'm not that kinda gal.......LMAO...hehehehehehe ;) BTW.... Tiannia, great post!! I'm glad you're here! STEVE?? LOL….did Diane read this one, and if so, what was her response? "Yes, we get advice on medicine, but we get a helluva lot more than that." Paigelle………you REALLY hit the nail on the head on this one!!!!! But, for those of us that missed the boat, I hope you catch it really soon!!! genuine pf wishes to all, EDNA |
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Title: Re: staring ........in the Face of clusters Post by Tiannia on Jan 5th, 2004, 4:51pm on 01/05/04 at 16:28:31, Edna wrote:
Edna, I hate the pain that I put my kids through. My son at 16 months will walk up and plop n my lap or up against me if I'm not sitting up. and just rock with me and my 6 year old just comes over with an ice cold washclothe and tries to keep the sweat out of my eyes. It kills me to think what this is doing to them. All I hope is that they dont think it is them that causes these. I already had to have THAT talk with my daughter. She told me after one REALLY REALLY bad night. "Sorry I made your head hurt, Mommy." OMFG that just tore out my heart. :'( Those are the things that would kill because of a cluster. Wanting to stop the pain that I really have no control over. I can deal with thepain that I feel, but what it does to everyone around me that really drives me crazy. Tiannia |
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Title: Re: staring ........in the Face of clusters Post by Paigelle on Jan 5th, 2004, 5:40pm I know the pain from the children. My 3 year old would get up in the middle of the night because he could hear me in the living room. He would want to help Mommy. Then he would cry and ask me if I wanted him to take me to the doctor. He also thought he caused me to have headaches. It is heartbreaking! |
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Title: Re: staring ........in the Face of clusters Post by Prense on Jan 5th, 2004, 6:28pm on 01/05/04 at 16:28:31, Edna wrote:
Perfectly stated... (where's the "hit the nail on the head smiley?") I have not missed a single day of work since using trex, nor have I had an ER visit. While I may be able to cope with a full blown attack, I am incapacitated to a certain degree. Anyone with CH who claims otherwise is full of shit. Even if I would want to do my job while being hit, I wouldn't be allowed to...numerous safety issues. I will never stop offering assistance to clusterheads (new and not so new to this site). I will never attempt to push my opinion on anyone else either...I don't need to. Chris |
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Title: Re: staring ........in the Face of clusters Post by AlienSpaceBabe on Jan 5th, 2004, 9:59pm Can't believe I missed this line before: on 01/03/04 at 21:14:31, Mastifflvr28 wrote:
It makes you human, Michelle! Just like the rest of us.... I remember my first supporter experience, in Vancouver... it made me realize that MY clusters are, compared to the one I saw, on the lower end of the scale... made it easier to deal with the pain when I didn't have meds around.... But would I go without meds by choice? HELL NO! It's like the pregnant woman who hears that women have given birth for centuries without medication so she should too.... ya think if you asked all those women if they WANTED something (assuming it was available) that they would have said "no thank you. i prefer to.... AAAAAAAAAAAAARRRRRRRGGGGGGGHHHHHHHHHH... what the fuck is that? Am I giving birth to a full grown elephant?.....feel this pain" ??? People pretend to manage their pain... all they do is hurt themselves and others by lashing out. Why? Why would someone CHOOSE to be in pain? I seriously don't get it!! I keep hearing the phrase "take it like a man"... well, men hurt too.... men use imitrex to abort and use verapamil (or other meds) to prevent them.... so I propose the following phrase in its place: "you are making me exceedingly uncomfortable because of the high level of pain you are in. my perceived discomfort is more important than any pain you feel, so please try to act like a normal human being and hide your pain in order to once again make me comfortable." jmho, Lizzie |
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Title: Re: staring ........in the Face of clusters Post by Georgia on Jan 6th, 2004, 3:40am There was a time in my life where hope was all I had. I tried over forty medications and treatments, and combinations thereof...I tried different doctors....I tried everything I read about on this message board....I tried almost all of them twice...I was dedicated to finding what would work for me....I was steadfast in my belief that there was something...that there had to be something that could stop this constant pain, that could give me my life back...and yet, nothing worked. The latest in a string of neuro's at the time convinced me that a 5 day stay in the hospital with IV DHE would stop them, not lessen them...stop them. He promised me. And I being the desperate chronic that I was...believed him. I pinned all of my hopes on that doctor, on that drug...I anxiously awaited actually feeling what a day without my head hurting would be like...I imagined myself not being damaged goods anymore...I could almost taste normalcy again. I went into the hospital. I got 5 days of relief. And then...then I plummeted into the darkest days I have ever seen. The clusters came back...with a vengeance...stopping only long enough for me to crawl to another spot before switching sides and starting again. After weeks of near constant 10's...I sat in my bathtub, whispering my goodbyes, my apologies for not being stronger, barely able to see the straight razor aimed at my wrists through all the tears. I never wanted to feel that burning claw in my eye again...I never wanted to have all of my hopes thrown to the floor and shit on again. I never wanted to live another day of this horror, of this freakish horror. I remember hearing the words written on this board echoing through my head, "clusters don't kill you, they only hurt a lot" and thinking how fucked that was....how wrong that was...how everytime I tried a new med, everytime I believed something would help me, everytime I went to a new doctor...only to find myself bald with clusters or with kidney failure and clusters or with my clusters worse, a little piece of my died. I walked out of my bathroom that night...hating myself for being too weak to even end this once and for all. There was a time in my life where hope was the most dangerous thing of all. I would not allow myself to take any more medications, or see anymore doctors, or try any treatments...doing those things requires hope...and having hope entails the risk of having such hope dashed to the floor again....and dashed hopes came too fucking close to taking my life. And so I suffered...alone...and unmedicated...but alive. There were those who thought me insane, who accused me of enjoying the pain, of being a martyr. Their thinking was...if this med might help you, why the hell would you not even try it, why would you choose to suffer more? For some of us, the physical pain of clusters is nothing compared to the mental and emotional pain they can cause...saying the pain of a cluster is nothing should give you a general idea of the magnitude of the inner toil of which I speak. For me...not taking medications at that time in my life, as fucked as it sounds, helped me to suffer less. As a chronic, you know that your head is going to explode with pain every fucking day, more than likely for the rest of your fucking life....and for some of us...we need to accept that in order to live with it. We need to stop trying to fight and search and hope and dream and want and try...just to get by. There are those of us who would rather be chronic than episodic...if only to not have to remember what "pain free" feels like, so that we don't miss it quite so much. There was a time in my life where my own suffering started to not seem so all consuming. I moved in with Dennis...and after a while, I let him see me in a cluster...I let him try to help me. No, I begged him with tears streaming down my face and pain eating through every cell in my body to "make it stop". And the look in his eyes when he saw me like that...the helplessness...the fear...the anguish it caused him, not just that one time, but everytime I hurt...and I would tell him how sorry I was for causing him pain and he would tell me to shut the fuck up, that I never had to apologize, that it wasn't my fault. And it slowly dawned on me that no, having clusters was not my fault, but refusing treatment for them, was. I tried a medication again, with his help, that had failed me before. I am now pain free and have been for months. I have now become, hope. The moment is structured that way....I did what I needed to do at that time in my life, to survive. We all do. And we all expect others to feel the same things that we feel, to be at the same place that we are at, to deal with the pain in the same way as we do, and to understand why we do what we do when we do it. There was a time in my life where expectations were the most dangerous thing of all.... Peace and love, Georgia |
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Title: Re: staring ........in the Face of clusters Post by FrankW on Jan 6th, 2004, 8:18am Think I'll get into bother for this one - but what the f..k - I have had this CH thing for long enough to qualify to comment. I have also suffered quietly and privately and not shared "my pain" - for at least as many years as anyone else here. First time I get "proper meds" and I don't really know if they work because the cycle ended about the same time. (I was almost disappointed not finding out - and that's a worry!) Hell - I was conditioned as a kid not to allow a "simple headache" to interfere with my life or anyone elses. I have also been divorced and seperated many times and more than once screwed careers because intense private suffering can make you into a self contained private person with a nasty streak that partners and others rarely understand. But I guess too much attention, pity and care could make one a bit self absorbed - and that ain't good either, unless you happen to like self perpetuating depression. Hey - I'm just periodic and remember only a few chronic periods - 'bout the same number of partners and careers I've had now I think about it... I don't know or care now what my life would have been like if I'd known what meds had been around and they'd worked for me, but if it works for me now and others here then all power to it and those that try and help. No reason to fuck up your own life - and your partners life - if meds are available to help prevent it - and certainly no reason not to tell if you know and someone suffering doesn't. I like the life I have now and the help I have had from this board is great - and almost totally from the psychological boost of sharing the experience of misunderstood pain with others who do know how it feels - but it is also great to see the threads that help stop it becoming just a mutual misery society. I also won't be holding a dying clusterhead - but then I've also probably made sure no-one will hold me when I die. Some here feel bad about "pain in others eyes"? Why? I would think carefully before using that for sympathy or to prove a point! A concerned expression is the least you can expect from those who care, be grateful for it - they need to feel and show that. Think how much worse it would be if no-one was there to show concern - or if your partners or children watched without showing concern. Respect the fact they do that - don't diminish them or yourself by always apologising for causing their concern - or they sooner or later will stop showing it because nobody likes self pity. "Shut the fuck up - don't apologise - it isn't your fault" is really good advice - but please remember children don't know how to say that. Before you flame me on that one - I have had five children, two are a lot more "distant" than they needed to be, one is dead and two were allowed to show their concern without any apologies from me and allowed to help in their own way - and they grew from it. Maybe one of them will hold me when I die. Whats my point in this rambling?? - there maybe isn't one. Except perhaps to say that in spite of the severity of this pain - it seems there ain't got no choice but to live with it - if you find medications that work - then great. If you don't - then just join the bloody club - but never ever ever give up and never drop into a state where your whole life revolves around medications and misery. Life is far to precious for that - even "staring in the face of clusters". Frank |
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Title: Re: staring ........in the Face of clusters Post by Margi on Jan 6th, 2004, 10:16am damnit, Georgia, you made me cry with that one. And I just did my makeup too. Sheesh. Rockin' post, girl. You too, FrankW. Thank you both for explaining that it's ok to show supporters your pain. You do NOT have to feel guilty or sorry that you're putting us "through" this. We're a pretty tough lot, too, ya know. and....Georgia....when I read about your pain freedom, I smiled big. It's about freakin time, lady!! (( (_!_) )) I continue to dance for you, my girl. |
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Title: Re: staring ........in the Face of clusters Post by hunterdon04 on Jan 6th, 2004, 11:01am wow..i just read this entire string and let me tell ya...it was really intense....i just cant get over how we all have such simular tales to tell...for the first 20 years i tried to keep my pain to myself..i remember the "pain" i used to put my family thru when i was younger, before the meds, the pacing, the crying, the yellin "just leave me alone!!" ice and tylenol..i really dont know how i survived...i remember being in the clinical trails for imitrex (i hate needles, but i did it anyway and it worked my god it worked!!!) i'd tell people its a god-send, but who was i telling? i was tellin people that never knew the pain i suffered...in a way we are all truley alone in this test...but thank god i have a circle of friends and family that would do ANYTHING to help me, which i am so greatful for...i sometimes feel like such a coward when i try to explain to "strangers" what im goin thru..thank god my boss has "witnessed" me going thru a CH, so i dont have to feel tooo quilty about missing 2 days a work...man i hate these headaches...it never ends this feeling of failure that creeps up along with the beast, tearing at my self-worth...it HATE it...i just hate it...i HATE it..and im gonna kill it put it out of its misery one day |
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Title: Re: staring ........in the Face of clusters Post by AlienSpaceBabe on Jan 6th, 2004, 11:01am WOW, Georgia.... you made me cry too! |
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Title: Re: staring ........in the Face of clusters Post by hunterdon04 on Jan 6th, 2004, 4:28pm lord i have learned so much from you all in the last 5 days...i could not be more greatful...i am getting my very own o2 tank in my home on thursday...and im thinkin of trying meletonine and i thank youz for the advice on my new regimine of nasel and inj...i was alone in this struggle and im not any more...so all i can say, being a 20 year suffering newbie, is bring the info on...!!!!!!!!..gary in hunterdon.. |
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Title: Re: staring ........in the Face of clusters Post by Tiannia on Jan 6th, 2004, 4:47pm Thank you Georgia and Frank. Those where amazing posts. Frank, I just want you to know that what you said really hit hard. And I think it will greatly help me with my husband. I have not failed him in some way and I am not having these on purpose to hurt him. Buddy told me this as well and I think that maybe I need to be hit over the head a few times. Tiannia |
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Title: Re: staring ........in the Face of clusters Post by cootie on Jan 6th, 2004, 5:04pm In nature showing pain is a sign of weakness so I think we relate to that unconciously.......when showing pain you open yourself up to be picked off by preditors thus puttin the group in harm's way. I think sumtimes it mite be a base to some of our deepest feelings about it......we still have instincts wether we know it or not and wether we need them or not.......were jus not in tune with them anymore. To each his own Pam Panic attacks are fight or flight instincts gone crazy......we have too much to worry about...too much goin on...and too much to do.....we don't know who our true freinds are or who our real ememy's are......... |
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Title: Re: staring ........in the Face of clusters Post by Linda T on Jan 6th, 2004, 8:26pm Hey Den................you look just like I pictured ya! All kidding aside - Kim - don't know if you're still watching: I'm sorry that you haven't found the magic fix. I never did either. Not yet. I know I'll keep looking. I'm too much of wimp not too. I think the bottom line is this: whatever works. If you don't want the meds - your choice. Period. Good luck. If you want meds - your choice. Period. Good luck. Having a forum where you can post, cry, vent, share is important for our mental well-being. And that's one of the reasons this sight is great. That said, I think of equal importance, is the fact that this board posts possible remedies, treatments, etc. How many of us printed out all possible treatments and brought them with us to our doctors with the hope that something that we found would work? If that wasn't here for the taking what would your first doc's appt been like? What would have you left there with? Anything? Another headache maybe? Hasn't all of this information being available to us made us all a little more aggressive when seeking possible treatments. If not, it should have. At the very least we've all become more educated, have we not? If not, we should be. A little knowledge is a dangerous thing. In this case, dangerous to the doctors, pharmecueticals (SP) etc. It's only through education that we can get the word out and work towards a cure. It's really all about choices. As Den says, take what you need, leave the rest. It's all here if you want (as it should be). Wishing you all a Happy and PF New Year! Linda T |
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Title: Re: staring ........in the Face of clusters Post by t_h_b on Jan 6th, 2004, 9:09pm I've been reading this since thread since the first day. I have to admit that I admire Kim's resolve and inner strength. But everyone doesn't have those attributes to the same degree. My CH elevated in frequency over a couple of years. I took sometimes-effective abortives/pain meds but no preventatives. (I don't like taking pills every day. No one does.) When I reached 3 or so really bad CH a day, every day, I started thinking about what would happen when I reached 5 a day. I finally decided that when I started having more than 5 a day that it would be impossible to handle it and that I would have to kill myself to put myself out of my misery. (What was I thinking? They shoot horses, don't they...) My MD and Bennie Sue who has CHHelp.org convinced me to start Verapamil which helped some by reducing the frequency and intensity. (Thank you to them again. ) I educated myself using this site as a starting place. A year and a half later I started with melatonin, which almost eliminated the CH. Doubling my Verapamil got rid of almost all of the occasional shadows and very occasional CH I was still having. Now I have O2 for backup and have Imitrex for when I screw something up (forget my melatonin or Verapamil or drink too much.) Bottom line: you don't know how bad off you were until you are better. I suffered and suffered for no reason except stupidity and stubborness. I was miserable and lived from headache to headache and that was about the sum of my existence. If someone chooses to suffer by taking no meds, that's their (in my opinion unfortunate) choice. If meds don't work or make things worse, it would be smart to avoid taking anything. I feel sorry for someone in that position and hope that they have tried absolutely everything before giving up. But these freaking CH are not normal or natural and it would be immoral and unethical not to educate everyone who has CH or who could possibly diagnose or treat CH about all possible treatments. Clusterheads should have the freedom to choose their treatment or to choose none at all and to have their choices respected, especially by other Clusterheads. But they have to have the choices to choose from in the first place. And those used Imitrex needles and big O2 tank in the corner are just part of my reality now. They are nothing to be proud or ashamed of. I'm just glad I have them instead of the CH. And if the meds I have now stop working, I've already decided on the fungal treatment even if I have to spend a week in Amsterdam. Then the fungal farm will be part of my reality and if you don't like it then stay out of my apartment! Sorry this is such a long post but when I get going it's hard to stop. |
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Title: Re: staring ........in the Face of clusters Post by kim on Jan 7th, 2004, 8:24am Good morning. Thanks everyone for your input. As always, I appreciate the miracle of having been able to tawk with comrades in arms .... I would like to clarify one issue, however. This post was a reflection of my PERSONAL experience with cluster headaches and not intended in any way to medically advise ANYONE. I applaud all who have found a means of effectively battling clusters. That's what we are all here for. That said, I shall continue to share in my own special way*** Besides, it is FANTASTIC to see ole Tedsky get on the bus - Hi Ted :D Now everbuddy SHUT UP!!!!!!!!!!!!!!! ;;D |
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Title: Re: staring ........in the Face of clusters Post by hunterdon04 on Jan 7th, 2004, 8:51am thanx kim for creating an important thread, next topic please... ;) |
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Title: Re: staring ........in the Face of clusters Post by ClusterChuck on Jan 7th, 2004, 2:52pm on 01/07/04 at 08:24:25, kim wrote:
And if I don't?? Ya gonna come kick my ass? WhoooHooo!!! NOW I am excited!!! Chuck |
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Title: Re: staring ........in the Face of clusters Post by Lissa on Jan 7th, 2004, 4:56pm I'll kick your ass! :P |
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Title: Re: staring ........in the Face of clusters Post by Brian_Y on Jan 7th, 2004, 5:22pm One time, when I was in college, there was this HOT girl who wanted the York Man. Man, o man, was I in like frickin' Flynn!!! Anyhoo, we went back to her dorm room and we had been drinking Bacardi 151 all night long. It was choice. I was mixing it with coke. I think. It may have been something else. So I am not feeling so good after a while. She is watching some football game on the tube wearing something O so nice. Something definitely not G Rated. I am feeling powerful and good. The world is my oyster, as they say. I go the bathroom. It was one of those bathrooms where she shared it with another room. The tiles were so cool. So nice. I have never slept so well. Her suite-mate woke me up the next morning bellowing "What the fuck are you doing in there, moron?" A personal story I wanted to share with y'all!! Good times, good times!!! O gosh, this may be the wrong thread. Sorry!!!!! |
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Title: Re: staring ........in the Face of clusters Post by pubgirl on Jan 7th, 2004, 5:25pm [smiley=laugh.gif] [smiley=laugh.gif] [smiley=laugh.gif] [smiley=laugh.gif] [smiley=laugh.gif] |
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Title: Re: staring ........in the Face of clusters Post by Charlie on Jan 7th, 2004, 5:45pm http://www.netsync.net/users/charlies/gifs/pillsbanner.gif Charlie 8) |
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Title: Re: staring ........in the Face of clusters Post by kim on Jan 7th, 2004, 8:28pm Brian, straighten out yer tie, pullup ya pants and go buy some tile of yer own. The future looks brite. |
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Title: Re: staring ........in the Face of clusters Post by Brian_Y on Jan 7th, 2004, 8:45pm Indeed it does. And is the tile NOT so cool? Not so inviting? Hold out baits to the enemy, feign disorder--then crush him. |
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Title: Re: staring ........in the Face of clusters Post by kim on Jan 7th, 2004, 8:48pm Lest he crush himself |
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Title: Re: staring ........in the Face of clusters Post by Brian_Y on Jan 7th, 2004, 8:53pm But of COURSE!!! The object is to win. There would not be a winning and a losing side IF the object were to lose. It is to win. And I always win. Unless I lose and then I exact revenge. It all works out quite nicely!!! Yin/Yang and all that rubbish... |
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Title: Re: staring ........in the Face of clusters Post by kim on Jan 7th, 2004, 8:57pm Kay. You win. I'm goin to bed. After all, tomorrow's anudda day ;;D |
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Title: Re: staring ........in the Face of clusters Post by justasound on Jan 7th, 2004, 9:36pm Wow....That was a long string. It's good to know [although I am sorry] that other people have experienced this insane pain. I've been awake for a while now, and lastnight I came across this website while I was looking for painkilling methods for headaches. I don't feel as stupid for having to go to the ER for my last REALLY bad one. To the subject of being alone and dealing with it or having someone there.... I really wanted to be alone, but if my wife had not been there, i might have smashed my head to goo on the floor/windows/sink/etc. and not gone to the hospital. I don't know if what they gave me helped or if it was just over, but they gave me alot of medicine. I haven't had one that bad since, but I am wondering what the effect on my liver will be from always popping excedrin migraine, or whatever else I have around, everytime I feel the beginnings of that hell. I never want to ever have that again and I will do just about anything to avoid it...... But from the looks of this site I just may have to feel it again...... Sorry this was so long..... First post. Anyway it sure is good to meet you all. Thanks for giving my head something to do for the last 12 hours. |
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Title: Re: staring ........in the Face of clusters Post by ClusterChuck on Jan 7th, 2004, 9:46pm Welcome aboard, Justasound, sorry you have to be here. Please, save your money and your liver and dump the over the counter meds! They don't do squat for most of us. Go to your doctor and get a script for oxygen. Hopefully it will work for you, and you will have that to kill the beast for you. See the button on the left of your screen for the correct way to take it. Why don't you start a new thread, and tell us about yourself. How long you have had it, what tests have you had done, what doctors you have seen, what meds have you tried, what meds work for you (if any), what meds don't work for you, We are a concerned and nosey group here. The more we know about you, the better we can give some suggestions. Most people here are nucking futs, except me. I am the normal one here. Chuck |
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