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This was my first conference and first for many things I didn't know of with this beast. I'm glad I didn't explore more of the videos available online before going because I probably wouldn't have held it together as well as I did. I cried most of the drive home and cried a whole hell of a lot more since. Truly life changing and I'm greatful to have had the opportunity to meet the community of people who have saved my life. There is so much to process it hasn't all really set in yet. I've got tools in the box now i never knew of and I know now everything is going to be ok. It was a video of Mr. Wold from 2013 that started my journey to Clusterbusters in 2018 and it just happened to be Mr. Wold who would be the first clusterhead I would look eyes and shake hands with, call it fate, I call it an honor! I love you all!

OXYGEN!!!??

Prednisone didn't work, so I've only been using oral sumatriptan (we are going to try Verapamil for next cycle) and some Advil and Tylenol. ...unusual for pred to not at least interrupt cycle while a prevent kicks in. note that verapamil is very dose dependent, and the lower levels have less chance of success. 480 mg/dy in divided doses seems to be the sweet spot...some go much higher. hopefully your doc willing to up the doses, if needed, to find what works for you. many inexperienced with CH are reluctant to use the dosage we need. immediate release (IR) better results than extended (ER). LOTS of water and fiber to keep GI moving along... ....advil and tylenol basically worthless for CH and care must be taken not to use too much. some folks find they help with shadows (naproxen sorta helped me there on occasion) This current cycle has been different. We are now in week 5. The attacks stopuped at the end of week 3 (like past cycles), but now I am hstill getting 1 to 2 dull headaches a day that seem to linger much longer than a true 10/10 hit. I'd imagine these are what many of you refer to as "shadows." They are also like clockwork, 12 hours in between. ....that sounds more like "subtle" hits than shadows...which most find less predictable than the dang predictable timing hits My doctors insist the cycle is ramping down, but it just seems to be morphing and not ending. Again the pain is 2/10 vs a 10/10 for proper attack, but it's still happening. If I take half of a sumatriptan (50mg) it knocks it out, but I am so over taking meds. Has anyone experienced a pattern like this and if so do you think it's better to just take the pain or is it better to knock them out with the .5 sumatriptan? Could the suma be prolonging this cycle? ...YUP.... it can cause rebounds and extend cycles....your gut feel on meds is correct. OXYGEN has none of these negatives ...fast, easy, and relatively cheaper compared to sumatriptan ...combining (or even alone) an energy drink (minimum 100 mg caffeine/1000 mg taurine) or other high caffeine drink AT FIRST SIGN OF A HIT with the oxygen was my go to....sometimes all by itself was sufficient. ....have you considered or tried the D3 regimen and or busting.... Thank you in advance for your insight and much love to all of you enduring these horrid headaches.

I came away with many possibilities. First on my list is the D3 regimen. Batch gave a nice presentation on its effectiveness. I already contacted my GP to schedule baseline tests. Easy, cheap and it certainly can't hurt.....

Thank you, I think you're right about the headaches being "subtle hits" and earlier today I just let one rock instead of taking a .5 suma and I'm glad I did. Furthermore, that is the difference from this cycle vs past, I took an exorbitant amount of sumatriptan this cycle. So much that several times the pharmacist objected to my scripts and the doctor had to have a conversation with him to approve. My doctor thought it was going to be like the last, but it was much more persistent causing me to need a lot more suma. I will def be using oxygen for next cycle and thank you for the info about Verapamil and I will def consider the D3 regiment too! Taking caffeine for a hit didn't work, I tried it with a monster and it gave me one of my worst hits. Caffeine afterwards though def made my head feel better. Thank you again for all of the info!

Pictures don't convey the experience adequately. I'm sure there are more photos on Facebook. I encourage everyone to make the trip next year.....Orlando, FL I believe is the location.

I posted on this two nights ago but either I goofed it up or it was yanked for reasons I don't understand. I suspicion the former. I found the conference to be extremely informative. it was my first conference and coming off the most brutal cycle for me to date it was surprisingly helpful to be among individuals will actually understand. It also made me strangely grateful that I am able to deal with this beast most of the time and able to work. Many are not quite as lucky and my support and heart goes out to them. Other than the spirit of family and support that permeated the conference I am most impressed by the willingness to share valuable information and experiences in a self-help sort of way directed at finding a way to managing the beast. The presence of health care providers who have a true interested in treating this condition really warmed my heart. The physicians provided tangible evidence that folks are actively looking at ways of managing this condition. The advice on how to interact with your physician was invaluable. The research comparing psylocibin to placebo in an IRB approved study will prove to be invaluable and hopefully validate the experience of all the citizen scientists who paved the way for alternative treatments.I hope the work being done proves to be landmark research in traditional medicine. For a highly credentialed academic to engage in such a study is nothing short of courageous. The work with electrical stimulation was also exciting and I will anxiously await the updates. Unfortunately I suspect the price point for such a device is given a be fairly formidable and there will be a lot of push back from third party reimbursement. nevertheless it's exciting technology and if it works should also help understand what causing these problems.

zGreek, IMHO, I'd start with the RC seeds. They're legal, cheap, easy to dose and little to no psychedelic experience. J

Thanks for the feedback. I would really like to attend these conferences but travel is not possible right now. It's good to hear the responses from those who attended.

This was my first conference, it will not be my last. The fact that the established medical community (docs & pharma) were in attendance just reinforces the validity of these alternative therapies. There many options put on the table, it's hard to know where to begin.

CHF, TONS were discussed, but the only take away that I got that seemed to work was "Up the dose". It sounds like more of us that are on MM long term are running into it slowly stopping it's magic. The good news is continuing to change substances seems to help. While psychedelics are cross tolerant for recreational use, they don't seem cross tolerant for our CH. Of course me personally am on my third substance after the first two stopped keeping my CH away. (but I got most of 6 years pain free from the first two!!! Wahoooo). J