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Title: Im amazed.... Post by Matt UK on Jul 8th, 2003, 11:23am Hey, clusterheads. I can't tell you how amazed I was to find this site. Untill recently, when a new doctor diagnosed my CH, I honestly thought that the 'crazy fortnight' that I experienced May-Jul every year was only happening to me. Sounds silly now. Its a feeling almost of relief to find that there are others who understand and support each other thru this. Regards to all. |
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Title: Re: Im amazed.... Post by svelletta on Jul 8th, 2003, 11:41am I to was amazed. Discovered this site about 8-9 months ago. Provides a wealth of information, as well as a place to interact with others who can relate to the "beast". My husband has CH, and I am constantly looking for new info. Welcome and good luck. |
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Title: Re: Im amazed.... Post by stuey on Jul 8th, 2003, 12:02pm Matt welcome. I'm really sorry you gotta be here too but it is incredible that others have the same thing isn't it. I understand the thinking it's only you thing. But we are in the same boat and there is alot to be learned and a wealth of info here. Does the UK mean you are in England? I'm in New York City. Welcome again. Stuey |
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Title: Re: Im amazed.... Post by Matt UK on Jul 8th, 2003, 12:27pm Thanks Stuey. When the doc handed me a sheet of paper describing ch symptoms so acurately - after five years of mis diagnosis - wow. Also, I find that I'm relatively lucky compared to some poor souls ( 1-3 attacks a day for 1-3 weeks a year). My heart goes out to 'chronic' sufferers. Scary stuff. I'm in East London by the way. Matt. |
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Title: Re: Im amazed.... Post by cathy on Jul 8th, 2003, 1:12pm Hi Matt...sorry to have to say Welcome to the board...especially as im from across your side of the pond....im a supporter, my hubby Wes is the sufferer, in more ways than one... ;D Cathy |
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Title: Re: Im amazed.... Post by ShariRae on Jul 8th, 2003, 1:16pm Hi Matt.. sorry you had to find us, but welcome aboard! I know that feeling of relief when you find this site..it's truly a great place with lots of folks willing to help and listen...stick around & read all you can. Huggz Shari |
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Title: Re: Im amazed.... Post by Opus on Jul 8th, 2003, 3:12pm Welcome Matt http://www.imgmag.org/images/sunny22/Gifs/Welcome.gif Opus/Paul Does anyone know why I can't post a picture anymore!!!!! |
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Title: Re: Im amazed.... Post by Wendy the Brit on Jul 8th, 2003, 3:33pm Welcome Matt There are a few of us from over the pond here. The rest talk funny, think they are mainly Americans which explains a lot ;D Wendy the Brit P.S. Have you found OUCH UK yet, there are lots of CH sufferers in London |
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Title: Re: Im amazed.... Post by Charlie on Jul 8th, 2003, 3:45pm Welcome aboard Matt. I was dumbfounded too. For years I thought it was rarer than it is. I knew I wasn't alone but I still had no idea. Wendy is right. The UK site is terrific too. Here is Simon's letter which is the best thing to help explain this horror to others. http://www.ouch-uk.org/ch/note_colleagues.cfm Here is a technique I learned about 30 years ago. It saved what little sanity I had at the time: Dr. Wright's Circulatory Technique This is not transcendental meditation, imagery, relaxation, or anything psychic. It's entirely physical and takes a lot of work and concentration. Give this method a good workout. It’s not a miracle, but it’s been helpful to many. When I was diagnosed, my neurologist said to treat this as a vascular problem. I was told to concentrate on “redirecting” blood circulation in order to retard flow to the head. This is done by trying to “send” blood into the arms and hands or other extremities. When properly done, your hands will become warm and redder with increased circulation. I also found it easier to concentrate on one hand. This relieves just slightly, the pressure on the affected vessel, which indirectly causes our pain. We all have this ability but it can be exhausting. I was often able shorten my attacks from about half an hour to no more than a few minutes. Sometimes, when awake, I could entirely abort the attack IF I KEPT AT IT. Often, I would suffer only minor discomfort instead of excruciating pain. Do not stop just because your hands are warm or redder. Keep this up until you are sure it's subsided. If you let up or lose concentration, it’s very hard to restart this process. It may take some time but when this works, the relief is almost immediate. I learned this from the doctor in a few minutes. He simply told me to try to keep blood away from the head. He thought it easiest to concentrate on the arms and hands but any place that works for you is fine. He said to think of it as "filling your hands" with redirected blood. It’s important to keep at it THROUGH the pain. This will be difficult, but it’s the only way this technique will work. Don’t let up until you are sure the attack has ended. This will not always work, but I think it will always have at least some effect on the severity and duration of the attacks. It can be useful between medications or while waiting for some other drug to take effect. All it takes is a little practice. It was fairly easy to learn and what I'm writing here is more than I got from the doctor, as I've drawn from my own experience. When awakened in horrible pain, it’s very hard to focus, but I think it’s always worth a try. This costs nothing but hard work, is harmless, non-invasive, and it gives us a fighting chance. I wish you the best of luck - Charlie Strand |
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Title: Re: Im amazed.... Post by NotH20 on Jul 8th, 2003, 3:45pm Hey Matt - there are WAY too many of us...but at least we are among nice and giving people! That's what this Board is all about and what these people represent. Wait until you actually meet a fellow ch'er in person - WOW what a feeling! ;D Mia |
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Title: Re: Im amazed.... Post by Wendy the Brit on Jul 8th, 2003, 3:47pm Matt If you're good looking, Cathy and I will meet you! :o PSSSST, Cathy, he's a toy boy, he's only 33! |
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Title: Re: Im amazed.... Post by Danielle on Jul 8th, 2003, 4:02pm Hi Matt, When I found this site almost 3 years ago, I didn't know anything about what was happening to me, what this CH thing was all about or how the hell I was supposed to live with this pain (I was having ALOT of trouble with the medical profession). Anyhow, it was SO good to know I wasn't the only one, that I wasn't exagerating and/or being a wimp. This site and the OUCH site are excellent resources for information. I suggest you learn what you can about your condition because it seems like due to the nature of this condition, we must become the experts. One thing I must say in all honesty though, and I say this not to offend anyone although I am sure it will, but please remember that as a CH sufferer, you have a right to be here. That is how you have paid your membership and so, should someone decide they don't like what you say or that you don't fit into their club, don't worry about it. There are many, many personalities here, most people are very friendly or at least ambivilant but there are some who are pretty opinionated and judgemental. Anyhow, sorry for rambling and the fact that you have to go through hell to get here, but glad you found a way to gather some amunition for the battle... :) |
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Title: Re: Im amazed.... Post by cootie on Jul 8th, 2003, 8:14pm Hi Matt...very nice to meet you.....you are home now here....lots of info and fellow suffer's to talk to and supporters also. Pam that is one of the stranger personality's on here ;) |
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Title: Re: Im amazed.... Post by Live4Fun on Jul 8th, 2003, 8:16pm Welcome aboard Matt! Sorry you had to find us though. Glad to have ya... :D Bryan |
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Title: Re: Im amazed.... Post by catlind on Jul 9th, 2003, 11:38am http://www.imgmag.org/images/sunny22/Gifs/Welcome.gif Image works fine for me Opus. ARe you sure you don't have a space in there somewhere? Welcome aboard Matt. Read read and read some more. Lots of info to be found here :) Cat |
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Title: Re: Im amazed.... Post by echo on Jul 9th, 2003, 11:44am Welcome aboard Matt. Sorry to read of yet another victim that needed to search us out. |
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Title: Re: Im amazed.... Post by Locomotive_Skull on Jul 9th, 2003, 11:49am Hello Matt. Like yourself, I am a long time sufferer, first time caller. My wife found this site awhile back and I thought I would start checking it out. I am totally baffled at how much knowledge about symptoms/treatments that are described on and around this site. Guess I am still in shock after this long having no clue what was wrong with me. Now all of a sudden there is an entire community of "clusterheads", and I have an actual name for my condition. Although I think it should be called something like "severepaininthebraintraumaheadaches", clusterheadaches will do fine for now. |
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Title: Re: Im amazed.... Post by taraann on Jul 9th, 2003, 2:38pm Welcome matt. I too just found this site (little more than 2 weeks ago). I have vented and asked a couple questions and everyone is just so incredibly nice and supportive and as helpful as they can possibly be. Really a great bunch of ppl with an awful illness! Tara Ann |
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Title: Re: Im amazed.... Post by Opus on Jul 9th, 2003, 3:07pm Thanks Cat ;D I found a CR in there, I thought the site just hated my pictures, LOL Opus/Paul |
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