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Title: this site has given me new hope Post by Rebel_Python on Nov 9th, 2005, 7:18am WOW!!!!!!! I couldn't believe it when I came across this site. I'm in remission after a 4 week fight with the "Beast". I obviosly won cause I'm still alive to talk about it and as you all know is a major accomplishment. One question though, Have any of you been turned out by incompetent E.R. staff who believe you are only there to score drugs? This has happened to me several times and the last time I came home and put a .38 to my head. If those people only knew half the torment inflicted by CHS. |
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Title: Re: this site has given me new hope Post by Kate in Oz on Nov 9th, 2005, 7:30am Shit yeah! Last time I was in ER which was the final bang of my last cycle the nurse thought I was just trying to get off on the 02!!! "I think you've had enough of that." Urrrr. Thankfully the doctor eventually showed, did some research and put me back on. Welcome aboard - you got CH - you're in the best place!! Kate P.S. congratulations on the win! |
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Title: Re: this site has given me new hope Post by AussieBrian on Nov 9th, 2005, 7:37am G'day, Rebel, and welcome aboard. Don't worry that ER treated you as a druggie, and don't think for a moment it happens only in your town or in your country. We know all about it. Be different if blood was gushing from our gullet, or an amputated limb being conveniently brought in by a friend, but what do we have to show for it? "Look, doctor. Can't you see my eye is red?" Put the .38 away, mate. You're among friends now and between us we've almost too much info to pass on to you. Sit down, big breaths to relax, and start reading. Welcome home, Brian. |
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Title: Re: this site has given me new hope Post by Jasmyn on Nov 9th, 2005, 9:50am Rebel like Brian said: "Welcome home" This is the place where we do not give up, on ourselves or each other. Jas ;) |
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Title: Re: this site has given me new hope Post by Rebel_Python on Nov 9th, 2005, 6:16pm Thanks for the encouragement. There is so much I would love to learn from all of you. Untill I came across this site,I thought nobody on this world could understand the absolute Hell I live in when the beast attacks. There was an article in this month's readers digest about migrains and they mentioned Cluster almost as an afterthought,I guess becouse not enough of us have come forward. After being checked out by doctors,having cat scans,and trying meds left and right and nothing seems to work,one tends to yeild to the fact that you're screwed and end up in a room you call a suffering room in the dark and in hell. |
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Title: Re: this site has given me new hope Post by Rebel_Python on Nov 9th, 2005, 6:29pm I have gone through every phase of what everyone here calls the "Dance". Though I'm glad to have found you,and you seem to come from all over the world and every walk of life,I'm deeply saddened that anyone else would have to know what I'm talking about. BTW I'm 34 and kicked by the demon since I was 15. The really strange thing is,I was calling it a demon years ago,even as a 15yo. Untill today,I've never heard it from anyone else. |
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Title: Re: this site has given me new hope Post by rextangle on Nov 9th, 2005, 8:19pm Welcome to the club man! What makes this place the best place to be is that none of us really want to be here, if you catch my drift. What are you using for relief? I hope you have an 02 tank like all good clusterhead should. Here's a good site that has info on meds and other therapies available put together by Floridian, another member here. http://www.med-owl.com/clusterheadaches/tiki-index.php Ask questions, vent, laugh. That's what we're here for. Be well, Rex |
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Title: Re: this site has given me new hope Post by Barry_T_Coles on Nov 9th, 2005, 8:48pm Welcome Jason. You'r in good company here, read, ask questions whatever there is always someone awake around the world to talk to. Kind Regards Barry |
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Title: Re: this site has given me new hope Post by Rebel_Python on Nov 10th, 2005, 9:21am I have lithium and I've used it for about a year,but for whatever reason, It played out about a month ago and I went into the worst episodes in a year. Tired of explaining myself to doctors and ER staff,I have begun using the caffiene cure. Believe it or not, BC headache powders will sometimes calm things down,but thats hit and miss. Is there really a GOOD non narcotic that will work? Growing up in the good 'ol USA,one tends to buy into the myth that it wont work unless it's narcotic. Doctors wouldnt be so hard assed about prescribing non narcotic medicines. Like I explained to an ER doctor a couple of years ago, If I need some kind of good mind altering substance, I would get it in the street right now instead of waiting in this god forsaken place you call a waiting room for 3 or more hours. |
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Title: Re: this site has given me new hope Post by Rebel_Python on Nov 10th, 2005, 9:31am Thanks for the advice on the 02 rextangle. I'm ready to try it . It gets really embarrising when you have to keep going to the local drug store counter with an arm full of otc stuff that may or may not work. People look at you like you just stepped off a ship from mars. |
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Title: Re: this site has given me new hope Post by Rebel_Python on Nov 10th, 2005, 11:29am After reading alot of history on this site, I've noticed alot of variations of the same hell.For instance,not only do I lapse into the insanity of the dance,but I also have to puke at the same time. My attack will start with what I call a "Pinging" just behind the right eye. I will get this "Ping" once every minute or so for about 5 minutes, giving me a warning we're about to dance. All of the sudden it hits me like a hammer and I'm completely praying,cursing,beating myself in the head,and while I have tried with every ounce of my strength,I can never keep myself from doing these things. Only two people have ever seen me act this way and niether one of them come around anymore. That is why I live alone. I have designed a room I call my "Suffering room".Pitch black during the day and sound proofed by heavy quilts lining the walls. When I'm in remission,I'll look at this room and think to myself I'm actually losing my grip on sanity. |
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Title: Re: this site has given me new hope Post by Rebel_Python on Nov 10th, 2005, 11:42am Every one will probably get tired of my posts, but please bear with me as this site has opened a whole new world for me. In my last post,I mentioned some of the things I do during an attack. The idea hit me that maybe beating yourself in the head,praying,cursing,rolling on the floor,maybe all of that is not only the RESULT of the attack,but actually part of it. Wonder what a psycholigist would think of that? |
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Title: Re: this site has given me new hope Post by Jeepgun on Nov 10th, 2005, 1:41pm Welcome, Jason. I've put a .357 in my mouth before, from being so fed up... What stopped me from doing it, I still don't quite know. I certainly wasn't afraid to do it. Anyway... Enough of that shit. Welcome to CH.com. I'm sorry you've been dealing with this hellish condition. Glad you've found us, though. -Frank |
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Title: Re: this site has given me new hope Post by biker_babe on Nov 11th, 2005, 4:17pm WELCOME!!! Welcome to (as far as i'm concerned) the only place you need to be, HOME!!! This place has saved my life, and my sanity! We've all been there mate, and all made it through the other end, it aint worth it, stick with these guys, as someone said, somwhere in the world theres someone there! Keep Well ;) |
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Title: Re: this site has given me new hope Post by Jasmyn on Nov 12th, 2005, 12:25pm The light is always on here, someone is always home, so you just stick with us. |
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Title: Re: this site has given me new hope Post by Rebel_Python on Nov 13th, 2005, 12:10pm You'll definately hear from me after my next dance becouse it leaves me feeling so empty and I'll need to talk to somebody. |
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