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GuaymasJim

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  1. GuaymasJim

    Chronic Cluster a Year OR Longer?

    I really hate to be the bearer of bad news, but my first CCH struck on Jan. 11, 1970. My last one was at 4am this morning. I experience as few as 1 per day and as many as 8 (aka daisy chain or bone crusher) with 2 being about average. I have never experienced a remission for more than three weeks-and very seldom that long. Some are much worse than others (there is never a good one), but they have been with me for just short of 50 years (I'm 72 yo). I have used most of the tricks memorialized here with various degrees of success as well as endured all of the misdiagnosis, misconceptions, inappropriate medications, horrible side effects, suspicions of malingering/exaggeration, procedures, experiments, studies, heartbreaks, and disappointments which unfortunately are also memorialized on these pages. I have been on the receiving end of unbelievable help and compassion from Drs. Kudrow, Diamond (RIP), Goadsby, Green, Cohen, Butler, and a host of others. I have also been subjected to the most egregious and reprehensible mistreatment imaginable at the hands of the most morally challenged as*holes masquerading as pseudo "medical professionals" that the VHA has to offer. Most importantly though, I am still alive and have had a satisfying life-quite different from what I was planning on Jan. 10, 1970 1LT USMC-but satisfying none the less. Since all of my medical care has been provided by military/VA, I actually have all of those years documented. Imitrex twice daily (approximately $500,000+) since it was approved saved my life, but ultimately caused two MIs on consecutive days. Silver lining: discovered asymptomatic CAD and got stents in time. Now its oxygen at 16 mL and opioids (Don't let anyone tell you that opioids don't have a legitimate place in the treatment CH-used properly they most certainly do!!! Moral of the story: We clusterheads are all different while at the same time we are are the same-special. We have a wealth of knowledge and experience which we are obviously quite willing to share, discuss, and even argue about. Wish you great success.
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