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Ok, sorry for the time gap, but as we all know, that when we have any PF time we take advantage of it. Yes I am a hot mess atm, but that's the life of a cluster head. lol So, before I get to what I've been up to, I will start by saying again, THANK YOU!.. Most of the time, it feels like no one can hear me (us) without misguided judgment. We are all fam here, even if we disappear for a spell or two. And CHFather, you are a guiding light of hope for so many here, I cant even imagine the amount of desperate souls you have given hope to. Kudos, my man. Ok, let's get down to brass tacks. Xboss, I feel for you brother, 100 days is a rough stretch. My first introduction to trex shots turned me into a chronic going from a lifetime of about a two month cycle to two years. Then I forced myself to back off of using them every time, tapered down to nothing and the cycle broke a week later. Now I use them sparingly, especially to avoid rebounds. Now, I had requested and old script of 02 with my new doctor, only to be told that he couldnt do it (stricter rules these days, I guess) and referred me to a neuro, who I was kinda rude to back in 2014 because I refused her suggestions of carbamazapine and some anti seizure meds, I guess I was expecting a better answer than the one I got. However, I will discuss nerve blocks, emgality, 02, and botox with her when i see her next week; aaaand possibly an apology I guess. Although, Im sure shes used to cranky CH patients, by now. lol. Ok, all of this is going on right as I am finally starting the career that I have been working towards for almost a decade, and I LITERALLY started my first day today, as a medical lab assistant here at our local hospital. Its my foot in the door, while I finish my radiography and imaging degree within the next year and a half. THIS lifelong torture demon we live with is my driving force to get into healthcare in the first place....and I finally made it! NOW, I DONT WANT TO RUIN IT BECAUSE OF MY DISEASE! Like many other jobs in the past. My manager really likes me and has the low-down on my condition, and I promised to manage it the best I can until the cycle is gone. I had restarted the D3 regimen minus a few ingredients, and It seems to raise my BP (Oh yeah, Ive become hypertensive in the last year) which then triggers one every time. So I backed off. I detoxed 5 and 5 for mm, and will again in a few days, BUT, I think I may have found something of interest. I stumbled upon some studies conducted on B1 (thiamin) deficiency and CHs, and head tremendous pain relieving results, with high doses tapered up to 750mg a day to break the cycle, and back it down to 600mg a day for maintenance. (with NO DETOX! I took 100 mg last night and 200 this morning (with food). Going for 300mg tomorrow, and have only had one little shadow. I will keep you all posted on my results. Thank you Vajenna, you are right, D3 really does work under the right conditions, because it has always done wonders for me in the past, until recently. But I plan to get back on a lighter regimen when this cycle is gone, along with properly spaced dosing of mm. Jon, I appreciate you! That, was a comforting response, and I thank you. And je3wook, OMG I felt this!!! Hang in there. I have weak points quite often in every cycle actually, but something else has always seemed to keep me going, even before I had kids. I wish you a painfree break soon no worries, we have some incredible and compassionate minds on the case. We will find a cure soon!! Love you ALL!!!

Cast Iron - he had already used 4 Imgality shots which was the max he can take in a week....and 3 Emgality Shots plus we always have O2 at home ...25 lpm regulater, rebreather mask and M tank. As I said. Both he and my daughter have had clusters for years. We are unfortunately "Pro's" in this area...not that we want to be. They also do the Vitamin D regimen. We went to the ER because nothing was working this cycle. He hadn't slept in a week..the pain wouldn't let him . Sleeping pills wasnt working. He was having suicidal thoughts. He wanted to be knocked out at the hospital with IV Benadryl. OTC Benadryl..even at high doses wasn't working. They gave him 3 iv bags of benadryl with Toradol and Steroids..didn't touch it. They gave him Propofel..and that worked. We have never in all the years he has had this needed to go to the ER because we can manage it at home. My issue is with the lack of compassion and ignorance the lower level medical staff have about Clusters. When your in a crisis situation and go to the place that is supposed to help you and they kick you when your already down is pathetic!

I'm in the same boat Brad. I think I need some help/guidance too. I'm also going on 2 months of this after only a month of remission. I fear I'm becoming chronic and getting to a dark place as well. I try to talk it out with others but I don't think they understand the severity of this. My only hope for now is waiting to dose on MM but I'm losing hope. I started the D3 regimen on May 22 and added benadryl, and am on the 2nd dose of busting with RC seeds but the attacks are still there and don't seem to be improving. I'm only 25 and it feels like my life is over before it even got started.