Brad

At this point, I couldn't agree more

You are awesome! I will be ok. While I never take it lightly, I get in these modes of depression, and this is the best place for me to vent and decompress. It's also comforting to discover the the ever growing plethora of remedies, advice and other people's relatable stories. Thank you for soooo much for caring enough to respond! It truly means so much to me<3

Well, I was going to respond yesterday morning, but had become busy and had to put it off, but I'm glad I did because after about 5 days of being mostly pain and shadow free, I was smacked with a kip 8 for about 2 hours with a terrible 2 to 3 level linger till I fell asleep. However, I want to mostly attribute that to a possible slapback after a wonderful bust the previous night....and I bumped the B1 back up to 750mg, just in case. Now, after thinking back, I would have to say that yes CHFather, because right after that big post on the 22nd, they came back at about one attack each evening. I think it was slow-going because I cautiously increased the B1 dosage, and was mostly getting hit every evening still with kip5's to 7's, and one at work which really sucked. Trying to enter patient's data while quietly fighting off a kip4 for about 3 hours with no shots or and relief, was an awful challenge. But, once I reached 750mgs (which I think was on 6/25) I still got them every evening, BUT, they decreased very slightly in intensity and duration each night until the last mild kip 4 on 7/4. But my head had been noticeably clear and even shadow free (aside from hotdog experiment) until last night. I feel the B1 and mm are working hand in hand, and once I get my D3 serum to optimal levels, I think I will have finally reach busting nirvana. lol Now, I kinda feel like a jerk, because I am going to have to call the O2 service people to go ahead and deliver the tank, because I got to cocky and told them to hold off last week. I have great benefits through the hospital now, but still cant seem to get a smaller travel tank. So, I will prolly have to go the welders tank route for that one. I hope this all helps and fills in any blanks. PF wishes!

Hehehe.....I've been meaning to respond, but....you know.....ADHD Ok, SOOOOOOOO I'm feeling great! Since the last post, I had nightly nasty kip 6 to 8 attacks, even up until independence day. Then from Monday till today, I only had a kip 1, which I suspect was my fault because I ran a test and had a hot dog for dinner last night, and was later greeted by the mini-malice. But, also took a risk by only taking 400mg B1 that day(Im back to 500mg now). However, I slammed a redbull, melatonin, and some ginger capsules and went to sleep. Now, I really feel the B1, and mm busting (4 times now), are truly working and not just falling out of cycle (due to hotdog experiment); because for the first time ever, I have been super diligent in only consuming foods with no added or naturally occurring nitrates or nitrites, or mononitrates. Takes forever to grocery shop now, that's for sure.. And I just started up the D3 regimen again. Even with the stress of learning a new job of drawing blood all day as a lab phlebotomist, it has not awaken the beast. Although, I still tread lightly and remain hyperaware of keeping it tamed for as long as possible. WHEW.........That felt good to get out! How'z yall doing?

I think thats' a great idea on the welders tanks. I think will just look into those as a regular option. Yeah, I did prefer having o2 to help knock it down enough to guarantee the trex shot would be effective, but rarely ever fully aborted it alone, I had to have a shot or redbull ready; and had a nasty rebounds, too. Although, I did not have the rebreather mask back then, either. Gotta tell ya tho, its not easy trying to afford all of these treatments and remedies with a disease that makes it difficult to hold down a job. We must keep swimming, tho, just keep on swimmin.

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!!!

You are all so incredible. Thank you. I am out with my kids, rn, but will give a much lengthier response and touch base a little later. I can usually keep these thoughts and feelings held together, but I have finally been getting therapy for my previously stated PTSD. And while it's been absolutely necessary and positive for me, the beast just seemed to have caught in a week moment. I appreciate all of you and will answer your questions here very soon.

I just left a message with Cluster Head support group. I am hopefull I'll get a call back tomorrow. I've attempted to bust in 3 different cycles over years and none of them worked. I feel so defeated to seeing others get relief, and the beast just continues to crush my skull, no matter what I throw at it. It's just not fair us to have to experience this level of pain and frequency. It's. Just. Not. Fair.

So, I've busted two times with proper detox protocol and dosage, to a "T" and was still hit with the worst in my life the next night (last night) day. After 2 months of this I am truly struggling to go on. 35 years of this has ruined relationships and left me in financial ruin. Gotta tell if it weren't for my kids, I probably wouldn't be here typing this to you. I'm struggling hard to go on. I can't stand the anxiety anymore. I need help in so many ways. Such a horrible quality of life. My patience is just thin and feeling at the end of my rope.

Hello everybody! Well, it's been a few years since I've been in here, but there is one guaranteed thing in my life: The BEAST! 37-plus years of this torturous dance and counting. Been learning more about my past and have a theory. I was severely and repeatedly abused and traumatized when I was very young, and highly suspect that the raised cortisol levels had either shrunk or deformed my hypothalamus. The silver lining is that I have a hunger for knowledge to finally join the fight in better figuring out the beast, so all other cluster headaches sufferers (survivors) live a 100% pain-free life. Joining this group 10 years ago was absolutely life changing for me, and I will always value that highly.

HAAAPPY BIRTHDAY, CHFATHER! WOOWEEEEEEEE!!!!

I do already know to detox from sumatriptan shots for at least 5 days before first bust. How long should a wait for the second and final dose?

I did try the Vit D3 back in 2012 with not much luck, but I am willing to give it another shot. I also spent a lot of money on o2 that only knocked a headache down but not fully aborted. I am however, very impressed with how much this site has improved and now we even have an app. We are no longer going to be the "overlooked condition" of sufferers! Viva la PROGRESS;-)

Hello there, yes its me. I was in school for personal training and now work for LA Fitness with my new career. I have suffered for 31 years with these awfull things . This round had been mild at first, but frequency has increased rapidly in the last 2 weeks, with more intense attacks. I have contacted Diamond headache clinic in Chicago to sign up for a study for episodics like me. Could be an implant but not fully sure until March.

Hello all! I haven't been on this forum since about 2013. I certainly see some familiar, and some not so familiar clusterheads. Miss you all! I was PF for a about 2 years until about 2 months ago the sleeping beast has reared his ugly head AGAIN! No amount of positive thoughts can seem to keep him away. Gonna bust soon because I'm frustrated and want some relief. Took my last sumatriptan shot 2 days ago. Wish me luck!

Is it just me or does anyone else get hit if they drink an energy drink during a cycle while PF? It's weird how I will get hit HARD shortly after leisurely drinking a can yet, slam it to get rid of one. But only separately.

Welllll, it didnt work on that round so I am back on the shots, for now. I busted for 5 weeks and am still getting them, yet I found them to be a good abortive some times. I plan to go around again with some better planning and discipline. 4 days apart didn't agree with the beast, too well. Thanks for all the help and advice and I feel the next time will work for me!!!

So bummed! I will not be able to attend this event after all. We are having my oldest daughter's Sweet 16 party at that time. I will be DJing (WOOHOO!!!). Definitely bittersweet. When and where will the next one be?

I cant seem to get it to play! :-? >

Just registered, see Y'all there!!!

ummm..I dont wanna speak too soon again but, I think it worked. No CH so far for 3 days after my third bust. Its amazing!! Just a few shadows that redbulls got rid of quickly! Soooooo, how much longer for BOL!?

So sad to hear of the loss of someone so young and so dedicated to helping people with our condition. My heart goes out his his loved ones! My 15 year old daughter said to me once "What if that bright light at the end of the tunnel is just you being born into your new life?" Hmm...food for thought, anyone?

Thank you spiny. Yeah, I first noticed it about 7 years ago, yet it doesn't happen on every cycle. Which always confused the crap outta me!!! ;D Its almost like the beast is messing with the wiring in there. Lol

Aaaaaand...... it came back. Only about a kip4, but would NOT abort with anything for about 4 hours. Ive had worse but was still annoying. Oh well. I've still got a few more weeks to go with busting so patience will hopefully be a virtue with this son of a beast!