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Title: Nice to meet all you fellow Ch's Post by Lastdaddy on Oct 31st, 2005, 1:05pm Hi All, I signed on as Lastdaddy, as that is my screen name But most of my friends call me either Nico or Daddy.I've been getting Clusters since I was about 20 , I'm now 53 and just came off an 8 year remission!! How will any one ever figure this thing out?? 8 years no pain then 4 weeks ago I felt that friggin Beast bitting into my right eye, within 2 minutes I was having a full blown attack. I'm beside myself !! I lived in Fla back in the late 70's to mid 80's and had a 6 year remission and thought I was done with them. Now 8 years and they're Back ?? The only diference this cycle is the pain is constant with the Demon taking big heavy bites about two hours after I'm asleep, so I wake to a full blown attack. Another thing is that coffee seems to be helping this time around. it's worked for me in the past but not on a large scale.Any thoughts on that ?? Because of the 8 year remission I'm really not up on the new meds out there. During my last cycle I guess Imatrex had just hit the market, I happened to be in the hospital for a kidney stone and a Back problem so the Dr gave me a shot IV and it did absolutly nothing for me . I mention my back problem cause I have a Failed Back Fusion, and I'm on heavy Narcotics , Oxycontin 80 Mg 6x a day and Percocet 7.5 Mg 8x a day for pain and 10 mg Vallium 3x a day for the spasams I get. It truly amazes me how the beast can sneak through all that and still make me want to take my head off !! Demerol has always been the best Pain reliver for me wether it's the Clusters or the back pain , But try to get a Dr to write a script for Injectible Demerol. My local Hospital's ER has even stopped using it. I'm allergic to Morphine so basicly all that's left according to them is Dilaudid, which doesn't even come close to relieving my pain the way the Demerol did. My younger Brother also is a CH, he is a member of this site and I'm sre he told me about it but that was during my last remission and I guess I didn't really want to hear about it cause ya know how it is, when you're not in a cycle you don't even want to think about it in fear of bringing them on !! I coldn't wait to tell him about this site untill I looked at the members list and saw him loged on in October of 2000 , Right in the middle of my 8 year remission LOL !!! I'm thankful to say right now he's in a 3 year Remission and last month when this 1st started again I called him and he said "Oh no , Please don't tell me that " see, we seem to have always followed each others cycles. If I was in a cycle he knew he would be getting one within the next month and Likewise for me !! OK well, Thanks for letting me introduce myself. I'm sure you'll be hearing more from me over the next several weeks. I live upstate NY in Greene County. I am willing to talk to anyone one on one but I'd like especially like to hear from some one in m area to see what Drs are out there that know about what we go through. I've been to too many Dr's over the years who told me I had a tension headache and to take tylenol. I can be reached at Lastdaddy@AOL.COM Thanks for letting me vent,and GL to you all, Nico |
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Title: Re: Nice to meet all you fellow Ch's Post by Jonny on Oct 31st, 2005, 4:42pm Welcome aboard, Dude....sorry you have to be here. Theres tons of info, so you better start reading to catch up ;;D .............................jonny |
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Title: Re: Nice to meet all you fellow Ch's Post by unsolved1 on Oct 31st, 2005, 6:01pm Welcome to the message board ! Sorry you have clusters too. Here is some good reading for you: http://www.brightok.net/~mnjday/chtherapy.pdf Hope your cycle ends soon! PF Wishes UNsolved |
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Title: Re: Nice to meet all you fellow Ch's Post by Kris_in_SJ on Oct 31st, 2005, 8:16pm Welcome and welcome to the zoo. Unsolved gave you the link of all links regarding the most recent treatments for CHA. Unfortunately, you have a big strike against you considering the amount of narcs you have to take for other things. For almost all of us, narcotics are a major cause of rebound clusters. They do nothing for the pain of the CHA, but frequently cause more of them. I'm so sorry! Have you considered the use of a TENS unit for your other injuries and chronic pain? Just a thought ..... Hugs, Kris |
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Title: Re: Nice to meet all you fellow Ch's Post by mynm156 on Oct 31st, 2005, 9:01pm Hey, Sorry to meet you but glad that you found us! I had to handle this BEAST for too long without ANYONE understanding so GET IN, SIT DOWN, SPEAK UP AND HOLD ON!!! Your Brother in Pain MYNM156 |
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Title: Re: Nice to meet all you fellow Ch's Post by MrMurphy38 on Oct 31st, 2005, 9:54pm Hello everyone. My name is John and Ive been dancing with the beast sense I was 17. Im 38 now and once again am doing the dance. I just found this site and its nice to know that the support is here. people who have never had a ch just dont understand. The first ch I experienced put me on my knees. At first the doc said I had sinus problems. My cycles seemed to start in September and last untill late October. Thats why im here today. sometimes I may go several years without an attack, then sometimes its every year. I have read some of the other posts and I now realize it could be so much worse. Mine seem to be triggered by a change in the weather or the change in the sea level. I sometimes travel. When I was in the Navy I had them do a septoplasty on me and that seemed to help in the severity of the pain, but did not stop them all together. I have had some success with zomig. for me, it does stop the beast in its tracks, but is very expensive. I look forward to exploring the site and learning more about our condition. Thanks...John |
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Title: Re: Nice to meet all you fellow Ch's Post by Jasmyn on Nov 1st, 2005, 10:30am Welcome Nico and John. Best place to be. Read and you'll learn more and that will help you but the best about this site is the support from people and supporters that understand. Good luck and PFNAD's to you both. Jas ;) |
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