Psiloscribe Posted February 13, 2011 Share Posted February 13, 2011 There are a LOT of people that aren't comfortable posting on message boards at all and come here and to other sites in a desperate search for answers. Using it more like a tip to the library. Seeing a message board as a source of information. Other's like many here, see a good message board as a living, breathing, caring life form. People that have been using message boards for a long time know there are many types and each forms it's own character and personality. If people just stop in for information and don't stay a long enough time to understand what makes the site tick, don't feel it's heartbeat, they move on with their lives. Some people are wronged in life and decide to become lawyers to fight for justice. Others are wronged and decide to spend their lives getting revenge. Everyone finds their own way to deal with life changing events. Most of the time it doesn't bother me when people come and get help and leave, never to be heard from again. I'm happy to know that we were able to help someone go back to their lives a little bit better off than they were before they stopped here. That's the goal really. To help people get back to their lives without as much pain or suffering as they had before finding us. People don't come here initially looking for a community to join or to become an active member of a new "family." They come looking for information and for help. Some stay for an extended period. Others get help and go back to being the good spouses or parents, or kids, they want to be. If people come looking for "data" they can find it. If people come looking for someone, anyone, to listen, understand and actually care about them, they can find it. That's good enough for me. Bob Quote Link to comment Share on other sites More sharing options...
dereksgirl Posted February 13, 2011 Share Posted February 13, 2011 well said. Quote Link to comment Share on other sites More sharing options...
Jeffrey Posted February 13, 2011 Share Posted February 13, 2011 Lots of wise insight here........... I feel truly blessed to have found ANOTHER point of specific identification with a group of real human beings. As I have learned in AA........ "The common bond of sharing in the same problem/peril , while powerful, is not enof to hold us together indefinetely. The sharing in a common SOLUTION, a new way of living holds us together more powerfully as well as indefinetely. " We learn that we can only continue to be blessed with this freedom/solution as long as we continue to "give it to others". With the disease of addiction its a lifelong adventure. However, I dont continue to work with addicts/alcoholics for my own benefit, I do it because Ive found it true that"to give is better than to receive"..... I have become the richest man I know because the depth of true riches (PEOPLE) continues to grow in my life. I would like to continue to be here and to offer support even after becoming CH free......... BUT my primary world of giving will remain working with the addicted. Bottom line is that selfless living paradoxically provides the ultimate payoff!!! Those who come to receive and choose not to stay are cheating no one but themselves..... And unless they have another outlet of selfless service I feel sorry for them. Sorry for philosophical rambling, but I am now 48 hours post RC dose #1 AND best of all 27 hours COMPLETELY PF!!!!! Im feeling alittle bit buzzed!! High on life and stuff.. Groovy :D Quote Link to comment Share on other sites More sharing options...
Bonkers Posted February 13, 2011 Share Posted February 13, 2011 Wise words, Jeff. Your post isn't too bad either, Bob. Quote Link to comment Share on other sites More sharing options...
Guest Posted February 14, 2011 Share Posted February 14, 2011 I just hang out to work on my post count. That and catch crap for being on the computer too long. ;D No wonder I bang my head [smiley=bath.gif] [smiley=bath.gif] the bb Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted February 14, 2011 Share Posted February 14, 2011 ....I am now 48 hours post RC dose #1 AND best of all 27 hours COMPLETELY PF!!!!! Im feeling alittle bit buzzed!! High on life and stuff.. Groovy :D You go Jeffrey!! ;D [smiley=2vrolijk_08.gif] Quote Link to comment Share on other sites More sharing options...
TakinitEZ Posted February 14, 2011 Share Posted February 14, 2011 I think you really captured the spirit of it, Bob. Nice post. -T Quote Link to comment Share on other sites More sharing options...
Perediablo Posted February 15, 2011 Share Posted February 15, 2011 I too tend to take a step back every now and then. It is good for me. I do not want to appear to be a thankless choad. I appreciate all of the help I've gotten, and continue to receive. I try to help others any way I can. I'm so busy with school, work, and the kiddos that sometimes I forget to do the things I really need to do! Thanks for everything to everyone! Love y'all and could not think of getting on without ya. Keep up the awesome work! Stay strange -Eric Quote Link to comment Share on other sites More sharing options...
Guest Posted February 15, 2011 Share Posted February 15, 2011 You Rock Eric . Strange as ever the bb Quote Link to comment Share on other sites More sharing options...
weatherman Posted February 16, 2011 Share Posted February 16, 2011 To all the CH Buster Veterans... I Thank You all, the entire CH Group, for the advice and encouragement I've gotten in the short time I've been here (since Nov 2010).I read every day the ongoing stories on this site. That passion for caring is surely behind CH Fathers reason for writing. Just the idea that people don't care and have taken advantage of your big hearts, is tough for anyone to swallow. After several years of insane suffering, I was CH diagnosed and started oxygen therapy. My doctor readily agreed after I suggested it. I got that IDEA HERE !!! I worked beautifully. I bought an Optimask and my own regulator that puts out 15Lpm. I get all the O2 I can use from my Medical provider. I seem to use about two "E" tanks a week ....... I have been in the "record keeping" phase for several months and am trying to figure out my patterns of occurance, cycles and possible trigger mechanisms. It make take a year to get enough data for reasonable conclusions, but I'm sticking with it. Until then, almost daily K8-9's have gone to K4-6's only a couple times a week. I "Lurk on the List" almost every day and I'm informed, enlightened and sometimes touched by the outpouring of true nuturing occurring on these pages. I just don't feel I have anything to contribute and certainly don't have the experience from many that respond to us "noobs" when we join. I may be lazy, but I'm not un-appreciative. THANK YOU Weatherman Quote Link to comment Share on other sites More sharing options...
Jammin Posted February 16, 2011 Share Posted February 16, 2011 I have to add that although I have not been active on the board, I have spread the gospel on the down low since day one. Amazing how amazing the people who suffer our affliction are...vocal or not it takes a special breed to live through this level of trauma. <Thumbs Up> 8-) Quote Link to comment Share on other sites More sharing options...
tingeling Posted February 16, 2011 Share Posted February 16, 2011 When people break cycle and get PF, i really understand they go back and continue life. For me as an chronic there`s a difference. If i wait for CH to take a long break or disappear, life will pass. That is what i did for the first 6 years. I waited for tomorrow, next week, next month then maybe next year. Then you get a slap in your face everyday ;D So for me it is important to be active in here, it`s one of the things that make my day, some days the only thing. Since i can`t get out and forget about it for weeks or months, i have to see that other can, with help from this board Quote Link to comment Share on other sites More sharing options...
Jeffrey Posted February 16, 2011 Share Posted February 16, 2011 LOVE these posts! And you who post them!!! ;D Quote Link to comment Share on other sites More sharing options...
Poli Posted February 17, 2011 Share Posted February 17, 2011 Hola, may be I don't post much here, but I'm a buster since 2005. The thing is that I learn in this forum and try to traslate to Spanish all the information, what is not easy http://www.cefaleaenracimos.com/foro/viewtopic.php?t=21 and I know of some other busters doing the same in diferent countries/languages. So, we've not gone, just spreading the word all over the world (feel like a profet or something) . Saludos Poli Quote Link to comment Share on other sites More sharing options...
Hipshot Posted February 17, 2011 Share Posted February 17, 2011 Good on you Poli. Your English is better than my Spanish. Thank you for your post amigo. Dan Quote Link to comment Share on other sites More sharing options...
TakinitEZ Posted February 18, 2011 Share Posted February 18, 2011 Poli, That's a great discussion board. I hit "translate" to English and it actually did a pretty good job so I was able to read up. It's amazing that so much is being relayed regionally in local language. Fantastic! -T Quote Link to comment Share on other sites More sharing options...
raquelinkansas Posted March 2, 2011 Share Posted March 2, 2011 Guilty. The thing is, when two months of your life are literally destroyed you have to make up for lost time. You have to work harder to show you're boss you are worth keeping, you have to make up for your kid being neglected, social life goes into overdrive with family and friends cuz they missed you. This may sound selfish but yeah, I wanna break from the obsession of it, i don't want it to consume my entire life. Please forgive me for this answer, and I have nothing but love and respect to my CH brothers & sisters, you are truly the only ones who really understand. I hope that people keep the revolving door going regardless. -Raquel Quote Link to comment Share on other sites More sharing options...
tingeling Posted March 2, 2011 Share Posted March 2, 2011 Hey Raquel!!! Quote Link to comment Share on other sites More sharing options...
raquelinkansas Posted March 2, 2011 Share Posted March 2, 2011 Hey Ting! Muah!!! Quote Link to comment Share on other sites More sharing options...
tingeling Posted March 2, 2011 Share Posted March 2, 2011 New shoes lately? ;D Quote Link to comment Share on other sites More sharing options...
John Posted March 2, 2011 Share Posted March 2, 2011 I've been away because once my cycle ends, I really don't want to think about it at all...but, as I sit here working through the end(I hope!)of a K9 that came on around 4:15 so suddenly that my head spun, I got my reminder why I came here in the first place. I have yet to get my hands on anything to try, but am planning to do so in the VERY near future. All I wanted to do today is come home from work and die. It is now 6:27, and I can finally function for the most part. I will start my own post asking for advice again, and to log my progress, and hopefully success. Thanks for still being here! Quote Link to comment Share on other sites More sharing options...
shaggyparasol Posted March 3, 2011 Share Posted March 3, 2011 Hola! When I check in there is still a ton of good cluster advice going out to those in need. Makes me feel good that many of us have or soon will turn the corner on our intense pain. And it also makes me feel good to see so many sticking around to lend a hand. There were definitely leaner times, so it looks like the ClusterBusters are living large! Nice work everyone! 8-) The Shaggy > Quote Link to comment Share on other sites More sharing options...
Cassidy Posted March 4, 2011 Share Posted March 4, 2011 Stay strange -Eric "Only the Strange Remain"   (Mickey Hart/Grateful Dead)  Sorry, couldn't help myself. Song just kept playing in my head. 8-)           strange         Leslie Quote Link to comment Share on other sites More sharing options...
Ricardo Posted March 25, 2011 Share Posted March 25, 2011 Thank you everyone! I appreciate the wisdom and support that I've gotten on this and CH.com so much....I wonder though if other people have "disappeared" because of some of the reasons I left years ago and was hesitant to join again. There is so much support and wisdom, but unfortunately there is a good bit of people who seem to want to bust people down if they don't agree with their treatment or ideas. I remember years ago getting attacked because I said cannabis helped me sometimes. I had people calling me names, telling me I don't have clusters, etc...I remember one time when I was dealing with epilepsy... a member who somehow is still around on CH.com intentionally tried to me give me a seizure by posting a flashing graphic that said "You deserve to have a seizure for that lame ass post". I've had people tell me I'm an A-hole, tell me I'm nuts, tell me that because my symptoms don't match their narrow definition of cluster headache I'm not a cluster head and I should get off the board. I've found that over the years it seems like things have gotten better...and I admit I have NEVER had any sort of issue with folks on THIS site, I think the mushy's probably help a bit more than just the head pain....but even now on CH.com, I've had people giving me enough flak with posts (check out Your brain on Oxygen for an example) that I've had people PM me saying they feel bad how people are treating me, but they're too scared that they're going to be attacked too to post something....All in all I am extremely grateful for all of you, I've found a lot of support, not to mention info I wouldn't of found anywhere else. And I always try to remind myself...Even an A-hole might just have something to teach you. In just the short time I've been back to the board I've already gotten a heck of a lot of helpful info, and I promise if I leave again, I'm gonna explain why, and thank you all. Quote Link to comment Share on other sites More sharing options...
CHfather Posted March 25, 2011 Author Share Posted March 25, 2011 Ricardo, thank you for this perspective. With only the tiniest of exceptions, I have noticed none of the rancor here that you describe. Sure would be hard for me to stay if it were like that. Regarding your ch.com thread. I admit that I didn't read the whole thing (I have to admit that as much as I admire Batch, his gigantic font and lengthy-though-often-amazing posts kind of wear me out), but I wonder whether you've seen these commentaries by Dr. Sewell about some animal studies investigating the mechanisms of O2. There are two of them; part 1 is here: http://www.clusterattack.com/blog/oxygen-inhibits-neuronal-activation-in-the-trigeminocervical-complex-after-stimulation-of-trigeminal-autonomic-reflex-but-not-during-direct-dural-activation-of-trigeminal-afferents/ Quote Link to comment Share on other sites More sharing options...
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