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Hey there Jimmy. I would say you sound like you have been doing the reading and I reackon you are onto something with the D3 regimen down year round along with intermittent preventative busts and hopefully it never comes. As for diet, there was that small ketogenic study - I just don't know about caveman diet, by that I presume you mean meat - and meat alone, I am not sure that the microbes in your colon would thank-you for that and I suspect in time we might see that the state and composition of the microbiome influences the disease in ways we currently don't understand. I am one for the D3 regimen year round and 3-4 monthly busting (more so than ever now given a recent 16 day cycle was aborted with the MM - 2nd dose). If only there was a magic prescription of things we could do to guarantee ourselves no cycles would come but thats currently a well-wish, best we can do is - as you say, stock up and implement those things that are tried, tested and true as per the community, be that traditional or alternative treatments. I think you'd be hard pressed to find a more definitive guide that Bob Wolds Pocket Guide as a resource of most all treatments, last time I looked. Worth having a look if you have not done so before! Cheers and all the best. Craigo.

... thank you Jeebs and DD....trying to share what i've learned from fellow clusterheads and the CH giants... many right here! still remembering when i didn't know and how scary it was. so, anyway...

Not sure why you would say this cuz I can assure you that I said no such thing @Jimmy Martinez

Thank you Dallas Denny for your support! I hope you are able to view this communication. I saw a post you did recently where it says you can't "comment" anymore on a thread unless you are a moderator.

Hi Friends, this site and the incredible people on it who share LIFE SAVING information is invaluable. Thank you. I'd like to meet people in person or at least speak with them on the phone. Digital communications are awesome but I feel so much more can be gained by being in an in-person support group. Maybe even a ZOOM group. I'm in Los Angeles. I have questions about busting, DMT, and anything else that I can use against our common enemy. I'm hoping to get better and better at disabling the condition. No matter what happens, for the most part, if I'm not experiencing the agony of a you know what, I'm the happiest, luckiest man alive with ZERO complaints. I will say that if there is a positive to this condition, it's appreciating the time when life is CH free and I can sleep through the night. I'm excited to meet and know people who have found a way to successfully combat the condition and also those who are no longer affected/victims. If anyone is in LA or knows of anyone in LA, please let me know. I just want to learn more and get my arsenal ready for when the battle begins. That's a lot of fancy talk for learning more about every tool available that will weaken or eliminate the CH cycle. Thank you! Jimmy Martinez in the San Fernando Valley section on LA. PS: I'm excited about DMT. I don't know what it really is but if it kills a cycle or weakens it, Im all in.

@jon019 that was a whole raftfull of "on point" responses to a bunch of questions brother!! Salute!!!

Thank you Bejeeber! I hope you are receiving this communication?

I was on Verapamil for about 10 years, got all the way up to 1080 a day and it sucks. Tapering myself down little at a time and I am now off all together. The higher dose did help with the clusters but like CHfather said above the vitamin D3 along with some other things has helped me get to the same place without the side effects. I did it on my own and told the doctor at each visit I went to what I was dong. He was not a fan but as long as I took it slow he said it should be fine. Doctors go to school for years learning things, I have only watched a few hundred hours of MASH, almost the same thing...

Well, I'll tell you something -- the hobby horse is definitely somebody's hobby horse. See this amazing Wikipedia entry and you will fascinate your friends at parties and on fishing boats with hobby horse information for years to come. Hobby horse - Wikipedia Here are just a few of the spellbinding facts you will be able to report. For example, you could say, "Yep, pardner, fishin's quite a hobby, by gum. Hey, that reminds me! Did you know ...." A May-Day procession including a Teaser, a Fool, and a Hobby Horse that tries to capture women under its skirts features in the climactic scenes of the 1973 British cult-horror flick The Wicker Man. From the term "hobby horse" came the expression "to ride one's hobby-horse", meaning "to follow a favourite pastime", and in turn, the modern sense of the term hobby.[63] The term is also connected to the draisine, a forerunner of the bicycle, invented by Baron Karl von Drais. In 1818, a London coach-maker named Denis Johnson began producing an improved version, which was popularly known as the "hobby-horse".[64] The artistic movement, Dada, is possibly named after a French child's word for hobby horse.[65] The term is also nautical. A vessel that is pitching forward and backward into the sea harmonically is said to be hobby horsing.

This was the kind we had during my relatively low rent upbringing. Yeah they kind of sucked and there was no real fun associated with them in my recollection.

Good one jeebs!! Pssttt....what the hell is a hobbyhorse??

"Hobbyhorse"? That's a good one! Nobody should be surprised to see me also start adopting use of it trotting that one out.

I fully concur with CHfather that chances are pretty good that your doc never got you up to a therapeutic dose for clusters anyway and, it kinda sounds like increasing your dosage would be contraindicatedso.....!! And, like him, I'm not a doc, but a quick Google search stressed that it should be titrated down under strict doctor supervision....and then told me what a doc would probably do to titrate down from a 240mg (3 x 80mg) daily dose so.... I'm of the school of thought that Verapamil is another off label pharma med that's thrown at cluster patients often but effective for a relatively small % and many of them deal with unwanted side effects!!! I commiserate with ya though, being a student and trying to learn stuff would be a biotch with the Beast hangin around!! DD

It's very unlikely -- in my view, of course -- that 120mg of verapamil has had any effect at all on your CH. The recommended minimum starting dose is 240mg/day (3 80mg doses), and that is usually just to provide an initial safe test, with dosages going up regularly if it proves safe. At least for CH, regular monitoring by EEG and symptom-watching is considered essential. Drowsiness is one symptom to watch for, and you seem to have that. Weaning is considered important for verap, but how much you have to do with 120/day would not seem a lot (and I think the weaning is mostly for BP patients, because of rises in BP while stopping). Typical weaning, I think is a 30-50% reduction every 5 days or so. I assume you can find this info on your own. There are people here who hate verap and think no one should ever take it, and others who found that at higher doses (sometimes as high as 960/day or more) it helped them (usually with side effects they did not like). You are in a perfect situation to start the full vitamin D3 regimen, a better (and generally safer) preventive. I'd strongly recommend reading this -- Basic non-busting information - ClusterBuster Files - ClusterBusters -- and the replies to it, and following the links, and then getting back to us. (A personal hobbyhorse of mine: A lot of students tend to eat a lot of food with MSG in it, for instance, those instant ramen meals and flavored chips, and for many, MSG is a trigger.)

Hi all! Question about verapamil. For context, I experienced 1 month of cluster headaches spring 2024, none in spring 2025, but this year spring 2026 was much worse. It lasted for a month and a half, but I've been cluster-free for a little over a month now. I've had some shadows and tension headaches here and there since then, and I still experience anxiety wondering when it may strike again. (Possible triggers: stressed student, sleep schedule (I try to be consistent), caffeine (I limit this), allergies (I take Claritin now), Vit D (I take Vit D 5000IU w/ K2 every day), I take Vyvanse (does not affect), sugar (I eat a low-sugar diet now).) My doctor prescribed verapamil 120mg every morning, and I've been on it for 2 months. I'm assuming it helped block the cycle, but I am developing chest pain, dizziness, loss of vision, and extreme fatigue by the end of the day; on top of that, I have POTS and my RHR is 63BPM and blood pressure is 103/71 baseline, so I'm not sure a calcium channel blocker is good for me...LOL. I want to wean off of it, but I cannot see my neurologist until July. What have been your experiences with verapamil, am I safe to come off of it yet, and when/ how should I plan to wean off of it? Is this something I should be on forever? I am terrified it will make the headaches come back. Thank you!

Jimmy, you sure received an exhaustive bunch of replies from a best-possible source in the person of @jon019 - I would say these are worthy of enshrinement, continual referencing, and revisiting-until-ingrained.

Hey @number1buster! I need to make clear for any readers, I DID NOT write these lyrics!! I have taken some rewrite liberties along with arrangement of the verses and have spent a bit of time on this project over the years!! I've wrestled with some of your points and thoughts in my mind for some time now Bob.....as you know, my original goal was to complete the song and maybe use it as a fundraiser or for swag bag stuffing at future conferences. But the fact remains that the concept came to be in the Facebook clusterhead support group "Trigeminal Autonomic Cefalalgia", and although this particular version was created by a member of this forum @xBoss , In my mind, it should belong to/be listened to by the clusterhead community at large, especially in that group where it was conceived and credit given to the individuals who actually penned the original words!! Sammy Bernardini, 1st verse, and Roland Pepin, 2nd and 5th (RIP pain warriors), my memory is not as good on the rest.......I'm fairly sure there was a total of 8 differest verses.........the remaining 2 verses in this completed song are gleaned from the remaining 5 in the Facebook thread.....my memory isn't real clear on the contributors to those but I suppose I could do a search in that group and try to find the original thread. I have shared it in private with a few close friends and everyone loved it!! I am very grateful to @xBoss for his work on this!! I would still love to hear the lyrics to the Sound of Silence tune in Disturbed style...but that was a dream and this is real!! DD

Just a couple off the cuff thoughts (please pardon how they lean towards devil's advocacy): I'm not under the impression yet that AI generated music, convincing as it can be, has exactly been universally embraced by music fans (take me, for instance ). If AI generated music is 'created' and prominently promoted by Clusterbusters, could it become a distraction, with some CH'ers being put off by it, or am I just caught here clinging to the horse and buggy of the music-made-my-actual-humans concept? Certainly music has become tremendously devalued monetarily with the advent of streaming services, where anyone can listen to any music they want on demand, whenever they want it, so a welcome gift or prize of music may not be perceived as particularly valuable (especially since CDs or downloads appear to have become passé)?

Hey guys, First off, many thinks to Denny for all of his great work on this. I love the lyrics (I've been a "lyrics guy" all of my long life). I especially how the lyrics take that well written turn at the end. xBoss thank you for your work on this. Fantastic. As to an album, this may be something that we could build on over time. I've tried putting a Clusterbusters Band together for years. It's been a dream project of mine for,,,,,25 years? It's just always been a difficult thing to do, getting people together. I've tried getting a group together at our conferences. We also did have one very good musician put together an album (wrote all the lyrics and music) and recorded it and we shared it about. This was many years ago. Unfortunately, as happens in our community, he ended up taking his own life shortly after making the recordings. The whole story was devastating to me as we had become very close working with him and his caregiver for several years prior to all of this. Our healthcare system let him down. He also had French citizenship and had to fly back and forth to France to get "free" healthcare. Traveling 5000 miles to see your doctor is not free healthcare but cheaper than our system. Anyway, the recordings were difficult for me to even listen to. None of the songs were as personal as this version you've pulled together. It was more of a version to play while busting to help everyone "feel good" for set and setting. I had also put together a 6 disc set of songs to use during a busting session. Nothing original, just songs I thought would work well during the stages of a 4-5 hour busting session. I just put them on CDs and passed out sets to a lot of friends. So, you can see that music is my safe place. I've noted in my will that my grandson gets my vinyl collection. I've been collecting since 1966-67. Maybe we eventually have a Lyrics contest? Maybe Denny can write an album of lyrics, LOL. So, can we please move forward with this? I don't write lyrics or music and I'm not up on how to use AI for something like this. Here are some of my thoughts. 1. We would need to make sure that we follow copyright laws. 2. I do have some contacts in the music industry. 3. I've played and done some work on CHATgpt. I had one of the paid levels for a time but cancelled the subscription (more of a time issue than a $ issue.) 4. I believe that there may be a better service for this than CHATgpt. Maybe Claude? 5. I am willing to pay for a level of service that would be best to use for this project with whichever program you guys decide is the best. 6. Also, whatever other expenses end up being needed. 7. We have some events coming up that I'd love to introduce this work to our community. 8. If we (you) end up wanting to distribute this, in some way, to the community and our supporters and even "the world" it may end up being quite time consuming for someone. That would be fantastic but we'd possibly need to compensate someone for their time and effort. We have been working on opening up a Clusterbusters store for a long time but it's a lot of work for a non-profit and requires a lot of additional accounting costs. It's possible to add this to a package that we may want to either give away as a special welcome gift to new members, or give away as a prize for our fundraising efforts. I would love to feature this and promote it as much as possible. There are a lot of possibilities and I'd love to hear your ideas and would not want to do anything that would be disrespectful to you guys or the community or a bad look for Clusterbusters. So, I'd take all of your thoughts on moving forward and respect your desires, start to finish. 9. So, if any of you say, "I don't like that idea" then we don't do that. 10. Let me know how I can help. Expenses? I've got it. Contacts, I'm on it. Promotion, CB's got it. Bob Wold

dhuddly I have never been tested for anything like this that I know of. Might be something to look into

@FunTimes Do you by chance happen to be ADHD or diagnosed with ADD? I am finding out more as I read and research that a ton of the researches we like to use in CH space don't account for the differences in the chemical makeup of our brains for ADHD or ADD so busting might not work for you like it does others because the receptors are different than in neuro-typical folks. I also think that we see mixed results on treatments due to these types of differences along with other health conditions we have that throw our chemistry off.

Nice work guys.

Awesome to see ya back spiny. hope all is well with you and your wisdom is always needed around here.

Jimmy, I look at it as better me that anyone else in my family so I am kind of use to things they way they are now. I can not say that I have tried everything but I do stay up to date as best I can on this site and am not afraid to try anything. I have done several clinical trials to help the people that are much smarter that I am to figure out what may or may not work for future generations. I also try a lot of things that are more like myself on this site and have real life experience with what works for them. Things are much better now that I have a room full of tools to fight this and knowing that what works today may not work tomorrow I keep a little bit of everything on hand. I am glad your cycle has come to the end and hope that it stays away for a long time. Go enjoy the pain free time and hope you never need to visit this site again!

...a few thoughts.... best, jon