egr2058 Posted November 18, 2010 Share Posted November 18, 2010 Hi. I'm Elizabeth and my husband has recently been officially dx with chronic cluster headache + daily tension-type headache. It's taken us 6 long years with trips to every specialist in the book to get here. Too many symptoms all over the place, had to fix every other little thing that was wrong before anyone would take on the headaches as anything other than psycho. All his GP's ever wanted to talk about was cholesterol. He's now being treated by a wonderful neurologist who got him on oxygen, gave him IV steroids and solumedrol to break a pain cycle he's been in for a very, very long time. Also switching from Indocin to amlodopine. I don't know which is worse, not having the doctors believe the pain is real for so long, or, even now, having family not believe it's all real. He hasn't been able to work for the last year because reading complex docs was triggering spikes. Dealling with SSDI and denied LTD, but that's a whole nother subject. Quote Link to comment Share on other sites More sharing options...
clustermom13 Posted November 18, 2010 Share Posted November 18, 2010 Welcome to your new home and family. Your husband's story is basically the same as everyone else's here. Sorry you have to be here, but now you will receive all the understanding, advice and support that you have been seeking. My 19 year old son has had CCH since first diagnosed at the age of 13. He is still chronic, but significantly improved thanks to this treatment. He is getting his life back. One day he will be PF! He was recently approved for SSI, so it CAN be done! Beware the steroids, they are the devil in disguise (in my opinion). Quote Link to comment Share on other sites More sharing options...
Hipshot Posted November 18, 2010 Share Posted November 18, 2010 Hi egr2058. Your story is not unlike most of ours. Most of us have medical issues other than clusters. I had to fight SS for years but did it without an attorney (avoided being raped) and finally prevailed after 4 years or so. I got back pay which I wasn't expecting at the beginning> What I was after was medicare...like most on this board, getting insurance with pre-existing anything is impossible. Medicare is MY money that "They" have been collecting from my paychecks for 35 years. It is my money. "They" are entrusted with it, but it is my money. Same for you and everyone else who has paid in to the system. It is worth the battle and the roadblocks which are there to weed out the weak and in hopes of the applicant dying in the process. You will find lots of support here. Have you tried mushrooms? They have saved my life...literally. Dan PS Family doesn't get it unless and until they see an attack. They...doctors and family...understand much more after witnessing a 10! Quote Link to comment Share on other sites More sharing options...
This isnt fair Posted November 20, 2010 Share Posted November 20, 2010 http://www.ouch-us.org/downloads/ch_syndrome.pdf Quote Link to comment Share on other sites More sharing options...
Guest Posted November 20, 2010 Share Posted November 20, 2010 welcome . . . Beware the steroids, they are the devil in disguise (in my opinion). not just your opinion mine as well, the steroids are just as evil as the doctor that keeps prescribing them steroids . . . they do good in the beginning, but will destroy you in the end, and u will still have CH, with some new medical problems as well AO Quote Link to comment Share on other sites More sharing options...
Hipshot Posted November 20, 2010 Share Posted November 20, 2010 What AO said. Hence my screen name. Dan Quote Link to comment Share on other sites More sharing options...
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