gotword Posted March 21, 2012 Share Posted March 21, 2012 Want to raise awareness by sharing your story with clusters (or as a caregiver) to appear in a book? Not sure? Got Questions? Email me at gotword@yahoo.com. Seeking 5-6 page stories. You can opt to have your real name hidden. Typed, wriiten, or recorded and I will edit and transcribe. Let's do it! Larry (gotword.webs.com) Quote Link to comment Share on other sites More sharing options...
FunGuy Posted March 21, 2012 Share Posted March 21, 2012 Interesting idea, I'm sure Larry will post some more later. FG Quote Link to comment Share on other sites More sharing options...
gotword Posted March 22, 2012 Author Share Posted March 22, 2012 Let me introduce myself. I guess I should have done that first but I got ahead of myself. I have suffered with these on and off since a kid. My longest remission was on Paxil for 5 years. This year was a big cluster fuck slap in the head to say the beast is back. I believe I may experience migraines on top of them because I am terribly sensitive to light. What helps me is Maxalt, Paxil, ferocit, Imatrex, breathing, and the migra stick, vitamin d, and magnesium. I don't have insurance so its hit or miss on getting the meds I need. But this year, I am seeing myself and us as fricken warriors. No matter how hard hit we are we get right back up...year after year we are still here. Keep fighting the good fight. Larry Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted March 22, 2012 Share Posted March 22, 2012 Hi Larry, There's a fresh topic started here just today that I think goes a long way towards encapsulating what a lot of members here have experienced - I bet it would make for some good first reading for you: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1332352280 Quote Link to comment Share on other sites More sharing options...
alleyoop Posted March 22, 2012 Share Posted March 22, 2012 Hi Larry, and welcome to our little board. I'm sorry to hear how rough this year has been for you, but you are definitely not alone. This past year has been rough on many of us, including me. But the good news is that through education and advocating for oneself, many of us have found that we can actually live life again, mostly without fear of CH. Oh, and when CH does rear its ugly head, we have alternatives to turn to that are almost magical in the relief they provide. I think you will find some good stories from this gang, and I look forward to working with you. Bob Bowling Quote Link to comment Share on other sites More sharing options...
blueballs Posted April 2, 2012 Share Posted April 2, 2012 I would be interested in this as well... need more information though. bb Quote Link to comment Share on other sites More sharing options...
spiny Posted April 2, 2012 Share Posted April 2, 2012 I'm with BB. Info needed to make a determination . I don't mind sharing my little story, but I would like to know where it is going, etc. I think it is vital that we get the point across that this is a family issue that has torn apart many families over the years. In addition, it is vital to let others know of the physical damage many have suffered due to the meds prescribed. Larry should supply more information for us to make a decision. spiny Quote Link to comment Share on other sites More sharing options...
gotword Posted April 4, 2012 Author Share Posted April 4, 2012 Thanks for your support and interest. On my website, I have just created a page detailing this book project. http://gotword.webs.com Look for the tab at the top that says "Cluster Book Project". I hope this answers some of your questions. If not, please write me. Quote Link to comment Share on other sites More sharing options...
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