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Title: brand spanking new to the site Post by seasoned_vet. on Jun 22nd, 2006, 8:30pm wow! I had no idea this site exsisted. I am a 39 year old male that has been in the clutches of the beast since i was 18.(i actually thought i invented that phrase "the beast", about fifteen years ago). It saddens me to know there are so many others who suffer as I ,but on the other hand , its kind of nice to know that I am not alone. I am really looking forward to sharing info with all. Oh, I am in the middle of a cycle now, but I believe I will kick his _ _ _ and will be pain free soon. |
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Title: Re: brand spanking new to the site Post by Kris_in_SJ on Jun 22nd, 2006, 8:40pm Hi, and welcome to the family, Sounds like you have the right attitude! Just grab a paddle and help us row. Meantime, perhaps you could tell us a bit about yourself? How often you cycle, what meds are successful and not, what else works for you, etc.? Curious minds want to know .... Hugs, Kris |
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Title: Re: brand spanking new to the site Post by E-Double on Jun 22nd, 2006, 8:42pm Welcome to the asylum we call a family. It is a wonderful place to be and serves as a place of solace and support for thousands who once thought they were alone. Share the knowledge and support those who need it. Glad your here new brother and may your nights and days be pain free. Kick ass attitude!!! Gonna like this dude ;) |
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Title: Re: brand spanking new to the site Post by Redd715 on Jun 22nd, 2006, 9:30pm Welcome , welcome and yes please do tell us more about yourself. From the sound of it you are episodic? Many of have went years and years before we knew what we had...please tell us your history as this is both educational and sometimes humorus (morbid but true when you figure the plethora of mis-diagnosis many of us have endured). Welcome home and don't be a stranger.... |
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Title: Re: brand spanking new to the site Post by seasoned_vet. on Jun 22nd, 2006, 10:49pm hi, its nice to see some are so interested in me. makes a guy feel real welcome! well , a little history, like most, i was told at the age of 17 that i had sinus infections, then , after no relief , a neurologist at wash. U. in st.louis diagnosed me with clusters. I could literally write volumes on the meds i have tryed, but i am sure you have heard it all before. I will give a brief description of how the beast affects me. He visits usually once a year, same time, early summer, (rarely in early winter), he knocks anywhere from once to three times aday, for usually two months, then dissappears till the following summer. he visits anywhere from ten minutes to three hours. I currently take verapamil every day forever, and when the beast visits I get on prednisone as soon as possible. And YES oxygen too.my tank is in the bedroom. Luckily , I have been blessed with a good job and good insurance over the years and truley blessed with the best and most suppotive family a man could ask for. as a young man my parents nursed me as best they could. Now I have been married to the worlds greastest woman for 17 years, we have two boys 10 and 12. Without this angel i call my wife I would have blown my brains out years ago!!!!! no question about it. she is the best , how she puts up with me (and the beast) i will never know. I actually went 2 full years without a visit, I was hoping he was gone forever, but the meathead showed up about a week and a half ago. I believe i got his ass right on time, started driking lots of water, upped the verapamil by 120 mg and started a cycle of prednisone. and dont forget the o2. I am confident he wont wake me up tonight. please write and ask or talk to me all you want and ask all you want , I am very excited to have found this new family. and I really, really look forward to talking and becoming friends with many!!!!! Bob |
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Title: Re: brand spanking new to the site Post by alchemy on Jun 22nd, 2006, 11:08pm Hey Bob welcome aboard! you've have indeed found a great place. I love your attitude. I look forward to getting to know you jim |
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Title: Re: brand spanking new to the site Post by seasoned_vet. on Jun 22nd, 2006, 11:34pm thanks for the welcome jim. are you on the site now? I am new and kind of computer stupid, I can allways use help.lol |
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Title: Re: brand spanking new to the site Post by Charlie on Jun 23rd, 2006, 3:32pm Glad you found us. You'll learn more about this horror here than your doctor wants to know. It's frustrating to them and mine admits it. He asked me once what's new. I find that encouraging. In case you haven't seen this, here is the technique that I learned that helped me: Dr. Wright’s Circulatory Technique: I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice. I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain. Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working. This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance. Charlie |
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Title: Re: brand spanking new to the site Post by Charlotte on Jun 23rd, 2006, 3:57pm Hey, Bob. Welcome aboard. I'm sure someone has mentioned that we have a lot of Bobs here. We're a bob magnet. Charlotte |
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Title: Re: brand spanking new to the site Post by ShaneM on Jun 23rd, 2006, 5:19pm Wrote a paper about "the Beast" for a Phyc class in college 10 years ago. Way before terminology 101 |
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Title: Re: brand spanking new to the site Post by spidey426 on Jun 23rd, 2006, 9:16pm Hey Bob, welcome home! Sounds like you've tried just about everything, but I hope you still find some helpful hints here, and at the very least, some great support from alot of great folks: ) pain free wishes from ny spidey |
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