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Title: I can't believe there are more Post by Uziel on May 12th, 2004, 9:03pm I was diagnosed with CH during my last year in the military. I hadn't heard of it before, and knew only that - that first season - it was beating me to death. That was 1994. It's 10 years later, and I have only met one person to date who claimed to have this disorder... but his relation of the pain seemed so casual... like everybody else who says "so you have migraines. My mother has those." Doctors have looked at me cross-eyed when I explain my symptoms! Even my mother - bless her heart - doesn't really get it. I'm currently three weeks into my season, after a blessed two year remission. And the old feelings are remarkably fresh: isolation, fear, lonliness. And the pain... there's not a phrase in any language I know that can describe it. Nothing else makes you feel as frail and wholly mortal. And alone. Singled out by the wrath of God. Then my girlfriend found this site, the morning after my first ER visit this season. I could not believe it. I read things that were so intimate to my experience that I wanted to cry. There are more than just me...! So this missive is a THANK YOU. The fact that this site exists means more to me than anyone can know. I'm sitting here, smack dab in the middle of one of the longest phantoms (shadows) I can remember, knowing that when it decides to hit, it's gonna be massive, and no meds are gonna stop it from f***ing me up. I am so scared... I have been for the past four hours. But today I can tell somebody about it. And they'll know EXACTLY what I mean. |
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Title: Re: I can't believe there are more Post by UN_SOLVED on May 12th, 2004, 9:25pm Welcome to the board. Glad you found your new 'home'. Unsolved |
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Title: Re: I can't believe there are more Post by miapet on May 12th, 2004, 11:01pm I cried when I came to this site .. and read what everyone had posted . . .and then knew all the things that D never said . . .it gave name to all the things we live with . . .. and it made me a much more tenacious fighter dealing with the beast .. and the medical profession. I hope your cycle is short .. .and that you have an eternity of p/f days and nights. *positive light and energy* miapet |
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Title: Re: I can't believe there are more Post by JDH on May 12th, 2004, 11:13pm Uziel, Welcome to the world of hurt where we do know EXACTLY what you mean ;) I think most of us felt the same way when we first found this place. If you think this is cool then you should try and make it to the convention in Nashville http://www.clusterheadaches.org/conventions/2004/index.htm Jim |
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Title: Re: I can't believe there are more Post by Racer1_NC on May 13th, 2004, 1:14am Your feelings about finding this place are the same feelings that most of us had when we found this web site. It's certainly how I felt. If you aren't seeing a GOOD neuro for treatment, I urge you to seek out one. There are treatments that can help you. This site has a wealth of information on that subject. I'll echo JDH's statement about the convention. Although I have not attended a convention yet, I am going to Nashville. After attending a "meet and greet" in January, I knew I had to go to Nashville. The feelings you get here on the website and nothing like meeting fellow clusterheads. I literally felt like i was looking in a mirror. I hate to use the "touchy - feely" term of instant bonding.....but it happens. Your fellow clusterheads are the best resource in helping you deal with what we all face. Just this week, I was taking bad hits. A couple of friends I made at the meet and greet called and we talked. If nothing else, it help my attitude greatly knowing I wasn't alone. In closing....WELCOME! I hate you are suffering from this special kind of hell, but you've found the best place in the world to help you deal with it. Bill |
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Title: Re: I can't believe there are more Post by sandie99 on May 13th, 2004, 5:01am Hi, I know exactly what you mean! When I first came here, I felt utter relief! And by the way, welcome! :) Best wishes & PFdays, sandie99 |
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Title: Re: I can't believe there are more Post by Mac_Muz on May 13th, 2004, 2:47pm Uziel, May I say un-welcome? Don't take it wrong.. I am 3 days old here... Everyone said welcome!!! As you are well aware there is one reason we are here. I am totaly new to this and have 4 weeks or so with the problem, and so I am a real newbie... So new what I think doesn't even matter... And I don't know what I don't even know yet... Since finding here I found I am not alone, and the learning curve these folks set me on is amazing. A few wanna drown me... I think I might even have grown gills in the last 3 days. If there is one thing these folks have it is courage to go on some for years as it seems you have. I am going to have a tough time dealing with this for years, but if all these folks can, I guess I have too. I don't know yet if this will be chronic with me yet. So un-welcome, and getting in on some of my new found terms I wish you P/F days ahead... I figured that out yesterday.... P/F pain free.. D= doctor (I think) Mac... thats me... or it was a month ago |
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Title: Re: I can't believe there are more Post by mynm156 on May 13th, 2004, 3:26pm I am sorry that you are one of us but I am glad that you were able to find us. I relate to everything that you say. Nobody knows the pain, everyone thinks your wants drugs or that you are some sort of puss for whinning about a HEADACHE everyone gets headaches right!? Yeah well we know better these are no headaches they are pure pain straight out of hellraiser !!!! Welcome aboard !!!! MYNM156 |
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Title: Re: I can't believe there are more Post by BlueMeanie on May 14th, 2004, 6:08pm Welcome Uziel. Yep, it's a great feeling knowing you're not alone anymore. This is such a terrible battle, but together, we can all get through it one day at a time. Hope you have a very short cycle this time around. PF days & night to you. |
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