Odin

Thanks everyone for the responses. I really have tried everything med-wise. I'm not taking anything now. I still go to the Neurologist every few months. He actually has really pressured me to do this. As far as the other member, he was a super nice guy. He really just didn't have much access and I think shared with me. I definitely have no complaints with him. I tried HBWR years ago but it didn't seem to work. The very limited experience I had with Psilocybin seemed to make a real difference. From reading on here I understand it seems dose dependent and involves the indole ring. I had very limited success with melatonin, meaning I slept a little more. I apologize now, I am very paranoid and leery of forums. My MD assured me not to be. I'm usually not like this, but the deeper I get into a cycle the weirder I get. Living in Georgia makes my situation frustrating. As far as the O2 I really have tried every way possible. Being an EMS Captain allows me access to O2 and all the attachments. I prayed this would not come back, but it did, after a pretty long remission. I have dropped from 212 lb.'s to 165 lb.'s in a few months (6'3"). Obviously, I don't sleep much, no appetite and pretty deep depression. Sorry for the whining, I generally keep to myself. It's almost funny my family will not even say Cluster if I'm not having them and I'm real superstitious about saying CH if I'm not having them. It really is amazing the affect they have on the psyche. I can't relate to anyone at this point. It really alienates you. For example I can't talk about it at all with my best friend of 37 years. If I try to, he attempts to explain to me that it must be psychological and compares it to his "psych" issues. Also that it's just a headache. I have a hard time controlling my temper anymore. I'm just no longer the same. I do think it was a serious mistake, on the medical communities part, to ever even call these headaches. I understand the reasoning but it gives people the wrong idea about what people are dealing with. Anyway, after that rant. How are y'all?

Sorry I am 40 years old so they started in my early to mid 20's.

Hello All, I have resisted joining for a long time. I live in Georgia, I have had CH's since 1997. I am at my wits end. My CH cycles last a few years with several off in between. I have a good Neurologist and have tried everything. A member helped me in the fall with an "alternative TX". I had good results. I think I somehow upset him. When I am in a cycle, knowing I have several years to look forward to, I do undergo some personality changes. I probably come across as rude sometimes, but that is definitely not my intention. I am a Captain in Public Safety. I have not been to work in 4 weeks. I am married with many children. The CH have ruined my life. I told the Neurologist many years ago that the only way I could describe CH's was that they have stolen my soul. I don't know any other way to describe it. I have really tried everything. O2 doesn't work for some reason. My CH's typically last 45 minutes with 4-12 attacks a day. Sorry if I ramble. I don't know what my point is. I am open to anything and wish you all well. I would like to thank everyone for their research and risk. I was glad to see the special on Nat Geo. This has become a difficult burden to carry. I have to be honest I feel pretty hopeless at this point. On top of my CH's in the past 10 years my daughter has had kidney surgery and massive open heart surgery, my son was in a near fatal car wreck and was on a vent for a month with massive facial reconstruction. Thankfully both are doing well now.