Leaderboard

Grateful for all of you and all the great advice you give to our community!!

G'mornin all!! I was doing a search for something else yesterday evening....this is from 2010 just a few weeks after I met Hollywood Dan of NatGeo fame....made me lol last nite as much as when his Bride Lee Ann originally posted it... I did Verapimil/Lithium cocktail for years. It caused constipation, the trembles and tears. The doctors and pharmacies, well they can just suck it. No longer will I take their pills by the bucket. They took all my money, they cut on my head. Leaving me wishing they'd killed me instead. My pulse was forty eight bpm at the best. My body shut down, it demanded a rest. With the help of my wife; include that I MUST. And with the help of this board...She learned me to bust! MUSHROOMS, THEY'RE NOT JUST FOR BREAKFAST ANYMORE! Dan

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

Hi @AchyBreakyHead - sorry you have the need to be here, but welcome. You've tried a bunch of stuff I see. Good news is there is more to try, and it's better stuff. One thing to get out of the way first, is whether your attempts with oxygen were optimized or not? High liter flow (like 15 lpm or higher) with a non-rebreather mask is widely considered a minimum requirement by those in the know, so if you were prescribed and tried lower flow (like 8 to 10 lpm) with a rebreather mask it's not surprising it was ineffective. You'll find more about this and plenty of other very pertinent info in the Basic non-busting information linked to below. Meantime busting, which is a much more effective preventive than any prescription, is described at the blue New Users Please Read Here First bar at top of the page here ^^. My suggestion would be to check this info out, then post any further questions you might have! https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/?do=findComment&comment=61401

G'evenin @Sub. I've been huffing weld ox for close to 20 years now. So, weld ox has got to be contam free or the welds won't be good......if an O2 supplier deals in both med and weld ox, both types of cylinders are filled from the same spigot......med tanks are vacuumed prior to filling while weld ox cylinders just get a "sniff" test. Costs are going to vary depending on location......when I began using it in Texas I was able to lease a large (48" tall x 9" dia) cylinder but sorry, I'm old and don't recall pricing.....when I moved to Okla I had to purchase my rig.....$300 for a full cylinder the same size as above, $50 for a weld ox regulator from Harbor Freight (last time I checked they were up to $75), and $25 for the clusterO2mask from ch dot com, and refills/exchanges were $23 ( it's been 4 years since it was refilled so not sure about current pricing. The cons: You can't tell them you're gonna breathe it....you're taking up glass blowing as a hobby or selling minnows....their biz is selling welding stuff so they really don't care....the 2 I've dealt with didn't ask me anything. As I said, no Idea what you'll run up against trying to source it in your part of the country. Hope this helps...any questions just fire away! Dallas Denny

I haven't posted anything about this ongoing project for a few years! For context, these verses came together many years ago (2015 if I remember correctly) in the span of a few hours.....a clusterhead from Cali put up a post in one of the Facebook clusterhead support groups explaining that he'd written the first verse (to the tune of "Sound of Silence" in the style of the group "Disturbed"......he challenged the group to collectively write the remaining verses. I had the privilege of watching as another 7 verses were added to the thread over a few hour time frame! So, I copied it all down and over the past 10+ years I've played with it, taking the liberty of rewriting in some cases to make the words fit the tune better, and reducing it to 4 verses which I actually (attempted) to sing at our 2019 patient conference in Dallas! But try as i may, I never could come up with a 5th verse to match up with the original tune. At this past years patient conference (in Dallas once again) I shared the lyrics with a longtime Facebook friend who lives in Bermuda who loved it and told me he had a good mate who might be able to record it for me when I figured out a last verse! When I got back home from the conference I was feeling inspired and reached out to a few folks for input and finally came up with the last verse.....which wound up being the 3rd verse and the original 3rd became the 4th. So, fast forward to today.....my Bermuda friends mate has had the lyrics and a backing instrumental that I found on YouTube but as yet he's not come thru....now I've begun the process of going to individual small recording studios in my area area, relating the story to them, and hoping they might have worked with a vocalist that could pull off a "Disturbed" version....no luck thus far and I'm thinking I'm gonna have to drive down to big D but fortunately I know a guy with a studio down there where I recorded years ago.... Anyway, that's the backstory, hoping to have a wrap on this project by this year's conference.....I've sent it to the Boss and he sez we can post it on clusterbusters YouTube channel... Hello Clusters my old friend You've come to haunt me once again You rudely wake me while I'm sleeping My nose is running and my eye's weeping And the demon that was planted in my brain Still remains I feel the pound Then shadows From restless dreams I wake alone From the pain I rock and moan Search thru darkness for the table lamp As I whimper with a cranial cramp Then my eye was stabbed In a flash with a red hot knife I cried in fright I felt the pound Then shadows Over many year's I saw One hundred doctors, maybe more Doctors listening without hearing Doctors treating but not healing Doctors writing scripts That seemed like living hell And nothing helped Erase the pain Of Clusters The unafflicted cannot know The shadows like a cancer grows Hear my screams that they might teach you Feel my pain that It might reach you And my tears Just like acid raindrops fell It's bloody hell 'exquisite pain Of Clusters Then I busted, fought and stayed Of the beast I'm not afraid And the Beast lashed out his warning Feel the burning and the pain swarming And the Beast said your head Will be bouncing off the sheetrock walls I KICKED HIS BALLS! He feels the pound Then shadows.......

@FunTimes Spiny has been locked out for a spell....but I just got an email from her saying she got in this morning and browsing the board so I'm sure we'll see her posting soon!

Thank you to all and lol @Bejeeber!!! Jeebs, in 1972 I went to work twisting wrenches at a little vw repair shop in Shawnee, Oklahoma.....it was there on.my 1st day that I met, and later became biz partners, with John Robert (Jack) Thorpe who just happened to be the youngest son of the great Indian athlete Jim Thorpe!! Jack was several years my senior (me at 25 and him at 37)....within a few hours after meeting Jack we were bs'ing and he said to me, "Chief, I'm gonna tell ya an absolute truth that you can take to the bank.....The older ya get, the faster time flys"! I have found that statement to be 1000% accurate!!! At my age, Jan 1st feels like it was just a few days ago!!! Of course, at my age, my short term memory is in the shit can as well so maybe it was just a few days ago!! Lmao! When Spiny and I spoke on the phone the other evening (she's just a couple years younger than me) we agreed that we both suffer from CRS=can't remember shit....we both.lost our train of thought several time during our marathon hour long plus conversation and the one of us would have to remind the the other what we'd been talking about!! Im tellin ya, old age ain't for the faint of heart!!!

@AchyBreakyHead ironic that you would say "tribe" because that term is often uttered at our conferences!! There's a piece on our sister site ch dot com called "pain vs suffering" that covers your question.....we are survivors!!! It's really funny that achy breaky heart would come up today......as I said, Im 79 and that song came on a YouTube video my Bride was watching and I got up from my ez chair and started doing the "freeze" line dance!! Lol! First time I've done that dance in MANY years but I was nailing it!!! DD

@AchyBreakyHead Guess we were typing at the same time young lady....old fart of 79 here! I would urge you to follow thru and attend our patient conference in Chi Town....you'll leave with a whole bunch of new friends that totally understand your pain!! Our oxygen guru @Racer1_NC will be doing O2 demos, if he can't figure out a way to make it work for you then I'm afraid you are one of the rare folks that it doesn't work for!! DD

So, one thing that is widely accepted as true here is that triptans make cycles worse and longer. Seems like that is surely happening with you. Injections and nasal sprays are the most efficient forms; pills don't do much. But no matter what form the triptans are in -- they are highly likely to be making things worse. What you want -- what you need -- is oxygen!!! That is the game changer (because among other things it reduces your need for triptans). How much verapamil are you taking, and in what form (immediate release or extended release)? Many non-fans of verap here, but there's no doubt it can help some -- in the right form (immediate release) and at the right levels, which are usually considerably higher than doctors prescribe, and which have to be gradually worked up to with testing to be sure there are no bad effects. Verapamil takes time to get into your system and start working. A course of prednisone is often prescribed when verap is first started, because the prednisone can hold off some or all of the pain while the verapamil takes effect. Not a standard prednisone "dose pack" (although that helps some) -- a longer and stronger treatment. For an overview of things you can do, I would very strongly suggest you read this post and the replies: Basic non-busting information - ClusterBuster Files - ClusterBusters In addition to oxygen, which should be the first thing a doctor prescribes, most folks here are primarily committed to two things that your doctor probably won't know about: (1) "busting," which is using psychedelics to stop CH cycles and prevent new ones (you can read busting basics at the very end of that post I just linked to), and (2) the vitamin D3 regimen, which has helped many hundreds, if not thousands, of people with CH to reduce and avoid cycles (there's a link to it within that linked post above). Of course, there are also the newer CGRP medications (Emglaity and others) that help some people. In short, there are lots and lots of things you probably have not done that will make your prevention and treatment of CH much more effective!!!

...so glad Spiny is back peeking in....Hotel CB:" you can check out... but you can never leave"

Yep. HC is a "lookalike" condition to CH, even more significantly underdiagnosed than CH. It is not responsive to oxygen or triptans. Sometimes mildly responsive, but not as a reliable treatment. Hemicrania Continua: Causes, Symptoms & Treatment As Denny said, Indomethacin treats HC very well. A lot of times it has been tried, but not at high enough levels, or for long enough. One source says "In an adult, oral indomethacin should be used initially in a dose of at least 150 mg daily and increased if necessary up to 225 mg daily. The dose by injection is 100-200 mg. Smaller maintenance doses are often employed." I don't know how regular HC peak attacks are. Your high regularity of course does suggest CH, which is why I'm saying some things about CH here, too. CH is usually not responsive to triptans in pill form, although some people with predictable attacks like yours find that if they take the pills before the attack (a half-hour or so, I think), it seems to help. Injectable triptans ain't great for you, and overuse can make things worse, but all this pain with no relief isn't great for you either. Busting is somewhat effective against HC, but the effects usually last just a day or two, unless you are busting very regularly. As always, I think there might be exceptions to this. The vitamin D3 regimen hasn't been mentioned, I don't think. It's very effective against CH and migraines, but I don't know about hemicranias. Might not hurt you to give it a try!! I'm attaching the Quick Start Guide. Quick Start Guide - Sept 2023.pdf

@AchyBreakyHead I'm gonna jump in and ask @CHfathers next question for him based on your response to his comments...lol....has any of your docs ever prescribed a trial of Indomethacine? It definitely sounds like you have multiple headache disorders and some of what you're describing sounds like Hemicrania Continua could possibly be one type (and it's also under the TAC umbrella with clusters), and folks with HC respond well to that pharma med! DD

@Dallas Denny @Racer1_NC @Bejeeber I would be so estatic and eternally grateful if oxygen worked for me! Maybe I just need a little help. Fingers crossed I can make it to the conference. Thank you for your time and efforts on this site (including patience with the newbies) and the conferences. Hope each one of you has a great day.

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.

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 mornin at 2:16 I completed my 79th trip around the sun and began my 80th.....I done seen some shit ya'll!

Hey all! The stabbie critter is perfect Jon! For what it's worth guys, I am happy to be among friends! I moved south about two years ago. Yes, I've been told I did that wrong too! I want no more snow. So, Anatoly and I are living it up! It is great to see familiar faces!

Jimmy, I get my oxygen by paying out of pocket, it is actually cheaper for me this way. I am chronic so I have tanks delivered all year round. Busting has not cured me in any way but does infact cut my attacks down in frequency and the pain is much less that pre busting. I am also one who will down a 5hr energy drink to help the oxygen kick in faster. It does not seem to keep me up at night. This can be different for everyone, the only way to know is to give it a try. Melatonin and Benadryl have helped me get a full night sleep also. All of the things I hade done over the years have faded in effectiveness or stopped all together. I have switched it up on busting substances, tweaked what and how I take things and kind of go with the flow. It is understandable that people tend to stop visiting the site when in remission and only pop in when in cycle, I wish I could be pain free and never visit this place again ( No offence) . As you know we are all here to help each other.. Welcome back

I have to chime in and agree with @CHfatherwith regard to naratriptan @Jimmy Martinez!!! Early on in.my cluster journey I was misdiagnosed with atypical migraine and was first prescibed naratriptan followed by amytriptaline. As he stated, both are in pill form and both are migraine drugs! Back then ( over 40 years ago) I think it was quite common for docs to prescribe both drugs for off lable treatment of clusters! However, I rarely see someone post that it was prescribed to them in the last 20 years!! And, my personal experience is that neither did a fecking thing for my clusters....AND... the amytriptaline produced some of the absolute most horrendous side effects of any pharmaceutical I've ever ingested!!! DD

There have been reports of CHers staying on medium-ish level dosages of verapamil and still successfully busting. [EDIT]: I just saw this pertinent bit about verapamil from my exceptionally trusted source, @CHfather, in another thread:

O2 can really be a game changer! Do yourself a favor and check out the high flow oxygen therapy portion of this site which includes great info on the dynamics of usage, set up and techniques. Not sure if it's the same for you with using Maxalt, but for me it literally only gave me a 10 to 15 minute break before the cluster bunny was back coupled with making me feel sick and extending the duration of my attacks, same with any triptans I've ever used so just be mindful of that. I totally get the need to use them though especially when your brain seems to be attempting to off you in the most painful way imaginable...As for wins/prevents there are lots so thats the good news! You are already aware of the D3 reg but you do indeed need to take ALL the vitamines and it would be great if you did a loading dose after doing a bit of blood work to see what your baseline is. Other methods can be read about and responded to on here by posting in one of the other more private threads like theory and implementation or share your busting.. please excuse any typos as im limited to responding on my phone with very fat thumbs

Hi Jimmy, Sorry your in the thick of a banger session.. As for stopping the verap prior to attempting a bust depends on the dosage but i dont think it's 2 late to try. As for the D3 reg attempt with the D and fish oil only, I dont think thats gonna cut it. You really need to be on the full reg (all co factors). Is there a reason you can't take all the suggested vitamins? O2 is super important so I'm glad your getting that squared away!

Wishing you the best on your next trip. Its a real accomplishment when you weigh the CH burden while you make our world more tolerable

This place has saved a whole bunch of life! We are all in it together.

Hi, I’m new to the group/website…Seeking any and all advice on pain relief, and hoping to connect with others who have both chronic CH and chronic migraine. Recently diagnosed with chronic CH but, at age 62, I have 50 years of chronic migraine and occipital neuralgia experience following a TBI and fractured neck. CH, of course, is my worst head pain. I’m now on SSDI (permanently disabled) after “soldiering through” decades of trying to hide my pain from employers. Even without the extra stress of a career, the DAILY CH is still so debilitating and discouraging. I find strength and hope, though, in the hours in between my worst pain attacks. : ) Helps some: Triptans, Emgality, lidocaine nasal spray, Qulipta, Neuro Energy & Focus caffeine gum, neck pillow, Penetrex muscle rub, ice packs. Doesn’t help: Oxygen therapy (bummer!), nerve blocks (have had for migraine, not specifically for CH yet), ketamine hospitalization (x2), many other RXs, PT, various neurostimulator devices, etc. Any suggestions? Thank you, and hoping to meet some of you at the October conference.

Thank you for the kind words and welcome, Dallas Denny. I may have found my tribe...my close friends and family try to sympathize but they simply can't emphathize like fellow sufferers. Btw, do we call ourselves sufferers here, or survivors, etc.? I'm not sure I've danced to the song but, when trying to think of an appropriate and cute screenname, the song title just came to me. : )

@AchyBreakyHead Bejeeber asked the question I would have and provided some reading material for ya so I'll just say welcome to the community and sorry ya had the need to join us! Love your choice of screen names!! I spent a bit of time doing line dances to achy breaky heart...lol

@Bejeeber Bejeeber, thank you very much for your quick and thorough response. I’m rare (maybe not always a bad thing but, in this case, it may be!) - For what it’s worth, I have learned that I’m often an unusual patient. For a recent example, just a couple of months ago, I found out while hospitalized for ketamine treatment that I was setting off alarms because my heart rate was dropping into the low 30s during my morning CH attacks. Not even my neurologist had heard of it, but I found in my own online research that a drop in heart rate can be a rare side effect of CH. I’ve since had testing for my heart and it’s fine, which likely proves my suspicion of a rare CH side-effect as accurate. I should mention I’m also female, which is somewhat rare in itself, compared to the percentage of CH sufferers who are male. Oxygen therapy - I’m thankful to have found this site and I did a lot of reading before I tried home oxygen…so I learned about the importance of a non-rebreather mask and other details. In fact, I found myself educating the oxygen distributor about oxygen for CH but, I’m sure that unfortunately may not come as a surprise to you. I also had tried oxygen when hospitalized for ketamine treatment..while it wasn’t a miracle, I thought it maybe helped a little then. Possibly just a placebo effect because I wanted it to work so badly. (It was during a hospital stay for ketamine that CH was finally diagnosed. I believe I’ve had it for years, and simply thought CL was my “worst migraines.” The diagnoses alone is worth so much. When I read online that CH is considered the worst human pain -- even worse than gunshot wounds, amputations and childbirth -- I felt sad, yet also validated.) When I tried oxygen at home, level 15 with the special mask, it sadly did not help. I breathed deeply, etc., trying to follow the tips found on this site. Rare again? - I suspect I may be in the 15-20 percent of CH sufferers who do not benefit from oxygen therapy. That said, I’m certainly open to trying again. I hope to attend the upcoming conference. Maybe someone there could help me try again (my clusters are daily). The tanks, even smaller ones, are heavy and cumbersome to get to my second-story bedroom. Maybe not at all an issue for a lot of people but, as a 60+ female, it’s unfortunately an issue for me. I’m mentioning this in hopes that you/others may have suggestions. Busting - I admit I didn’t realize what “busting” was until reading more on the site yesterday. As much as I’ll try nearly anything, I’m a bit apprehensive to try it. The reasons are (1) because I don’t know how to get what’s needed and safely and legally try it (maybe you or someone else could educate me on that?), (2) I have drug allergies, which understandably causes me to be reluctant to try anything new. That said, I need relief/improvement and am certainly open to at least learning more about this potential option. Travel/Driving - On a slightly different topic, are there strategies for traveling with chronic CH? Seems most of what I’ve found so far is more for episodic CH. I’m especially interested in learning of anything to help in the case of driving. I have read that a lot of people keep oxygen in their car but, if oxygen doesn’t help me, is there anything else I may try (that I’m not already doing) to quickly minimize the pain/effects? I see no option other than nearly immediately pulling off the road (at a safe and ideally populated public location...that I can quickly find) because I reach maximum pain level within about 5 minutes. Any suggestions to speed recovery time? Thank you so much for your time, concern, and valuable input! : )

Hi Friends, I'm 53, my CH began at 37. I get them about every 12-18 months for about 4-8 weeks. Maxalt, Verapamil, and Oxygen are my top 3 "helpers". I will though explore busting and anything else that can help prevent, reduce, or extinguish the pain. I'm thinking about the stretch of time between the attack. I'm basically healthy. No smoking, drinking, fairly decent diet. I'm thinking about what I can do to gear my body (and mind) up so that if a cycle comes, I'm ready for it and maybe I'm so "fit" that the severity and length of the cycle gets reduced. Should I take vitamin D regimen throughout the year? Bust every 6 months just to keep the brain peaceful? Lift weight like a madman? Breathe from an oxygen tank or get into deep breathing exercises? what can I do to prevent the cycle or if I I can't prevent it, what can I do to stockpile and prepare when the battle comes? Is sounds like people who bust do it every few months as a lifestyle thing that also either prevents the CH cycle or it makes it so that when the cycle comes, it's weakened dramatically? My primary doctor (not headache doctor) told me that the faster you get to the oxygen when a cycle starts, the better chance you have of destroying the cycle. Maybe just pound oxygen for a few days straight and perhaps that can kill the cycle before it can "take off"? we are all different but I'd love to hear more from the people who have either found a way to cure themselves or make it 1000% easier and better to deal with. is anyone in LA and would anyone be open to phone call about all of this? my thinking is that if I throw enough things at CH and try as many combinations or remedies as possible, someone will break loose and big time progress can be made. has anyone put together an entire list of EVERY SINGLE remedy or option we have to throw at this condition? I'd love to see that list and hear what other people think about it. also, if we use drugs like lexapro or Vyvanse or any type of drug for ADHD, depression, etc, could that help with the CH? how about cold plunge therapy. it seems cold helps with CH. or the caveman diet? there has to be a combination of things that can make a big difference. who is the most successful person to ever combat CH? I'd like to read their book. thank you all and I truly believe by sharing information and persevering, we can help each other end this ailment FOREVER.

... 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...

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

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.)

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

Hi friends, I hope everyone is well and not in a cycle. If you are in a cycle, my prayers are with you for a quick (and permanent end) to the the cycle. I'm in a cycle right now and hopefully at the end of it. I've been taking verapamil (3 times a day) and maxalt (to abort an attack when all else fails). I'm getting a prescription for Oxygen and Naratripan today. My attacks occur 95% of the time about 1 hour after I fall asleep. I have had some light success taking 3 Advils, applying an ice pack to my head/temple, and deep breathing to abort the attack. But lately I've had to take the Maxalt in order the fully abort the attack and end the pain. The pain has had me literally in tears. My question is this: is it too late to "bust"? If I do bust, do I abstain from the verapamil during the bust? Looking back I think I should have done an "emgality" dose at the beginning of the cycle which began over a month ago. Is anyone have success with or "wins" they can share? I'm also doing a version of the Vitamin D regimen but it is an abbreviated regimen with vitamin D and Fish Oil only. Hopefully there are some things that are working very well for you all. My doctor who is a headache specialist told me he has had several patients who stopped having cycle altogether for several years. They just stopped one day and never came back. My cycles have happened at different times of the year but typically happen every 12-18 months. It would be great to find out why they are happening but also how to prevent them and better extinguish them. Thank you! Jimmy Martinez

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!

Well there she is @spiny!!! Nice to see ya girl!!

Ahhhh, the return of Spiny!

@Craigo Hey bud, answered your Facebook message regarding this thread but going to go ahead and provide an update here! So, this past Sunday around 9:30 i was googleing.....music stores, recording studios ect, and came across a number for an audio/video producer based in Sherman, Texas which is about 25 miles south of me. Called the number expecting to get a machine and leave a message and instead the dude answered and I was so surprised I couldn't get any words out for a few seconds!! Lmao! Long story short version, we really hit it off, enjoyed a long chat, and we're gonna get together and talk about this project next week over coffee!! He's been a audio/video producer for 40 years but got into it because he's a singer/songwriter!! He shared a cut of his that actually charted and he has got the vocal chops to do the song justice.....I'll find out next week if I can afford him but as I said we really hits it off, he knows I'm an old fart, I shared a song I recorded 35 years ago, told him about clusters and how the lyrics came to be and got the vibe that he'll be reasonable so I'm keeping my fingers crossed!! Well, that wasn't very feckin short! But wait, there's more.... When I apprised Bob about this development he told me a rapper from the UK had emailed him about a song he'd written about clusters and psychedelics.....Bob the said "maybe we can make an album"....told him we could name it "The Busting Fusterclucks"!! And...that's a wrap folks!! DD

Fellow Kiwi here. Sorry is the first thing I would say, and dang that it has extended this long, I get you'd be feeling a bit down and like when the heck is this going to come to an end. CHFather is right, oxygen - it's key. Were you able to get the GP to write a letter and refer you to your DHB respiratory team for funded supply? If not - push back on the GP hard. They probably don't know the protocol. If respiratory team denied cover, push back again - ask for a reason in writing from your GP and to see the correspondence (and send it to me so I have it on record along with my own tribulations - I am not going to let this rest, we need change in NZ re access to o2 as it is inconsistent and I believe comes down to lack of education). If you can't get it funded and can afford to pay for it, then it would be worth it - all you need is a letter from your GP (if they won't write it up, tell them to get on the phone to the on-call neurologist and seek their advice, that's what they are supposed to do). Send letter to BOC's medical team and they will setup an account and you can go get oxygen or have delivered. You need the Cluster o2 kit for breathing apparatus. Vitamin D3 regimen. Your doctor can prescribe D3 capsules without testing and they are subsidised, ask for 12x 50,000iu - most GP's will just write it up. You can get the lab test you need by going to lab tests and paying for it. You can get most of the other supplies at at pharmacy less the D3 and K2 (order from iHerb - 7 days its here). It's worth asking your doctor to write up the lab for calcium and PTH and most won't know how to interpret the test so just tell them to make sure it's uploaded to your portal - the D3 regimen quick start guide explains how to navigate this. I can't offer medical advice clearly but you can ask me for my opinion by sending me a message with the lab values and any other questions. Starship gives kids the same amount 5-18yrs 600,000iu as a one time dose, no testing (Stoss protocol) so make what you will of that - I suggest be practical and sensible with supplementing D3 but it's nowhere near as dangerous as some would suggest. Busting - do you have supplies and is it an option for you. I needed to do this during my recent cycle, if you need to discuss, DM me. Verapamil, what dose did they start you on and what formulation, extended or immediate release? How many times a day are you taking it? Did you consider a pred taper to see if that would, cross fingers, disrupt the cycle enough to abort it? Try dropping carbs - I am not saying go carnivore, just as the D3 regimen guide calls for anytime you fall from remission or the D3 base regimen doesn't get you pain free, go keto but include whole foods. Consider adding some of the full monty supplements on top of the standard D3 stack being curcumin, resveratrol, melatonin, quercetin. I realize I have thrown shit at you hoping something might stick, please forgive if you have tried any of these and/or any of what I said has been taken the wrong way. If you just want support - message me. I am sorry again, hopefully you are able to find the tools and support to get out of this cycle. Hang in there.

Well your doctor wasn’t necessarily completely off with the advice to take a triptan pill an hour before a pretty much otherwise guaranteed sleep-induced attack. It seems it’s the TYPE of triptan pill that is at issue there. Some CHers have reported success preventing attacks with this approach, but with sumatriptan pills. Not surprised that the especially slow acting naratriptan didn’t work. Of course any triptan is not typically recommend by us busting folk around here though. for those with the buck$, there are independent labs now proliferating that do whatever bloodwork you want without need for a doctor’s order, cutting out the middle man. I would imagine there are some of those pretty close to you in LA for the initial blood draw, and that they could be searchable and findable online.

Jimmy, Jimmy, Jimmy ..... So sorry to see you back. Why naratriptan? It's a migraine medicine, and I think it's a pill (not an injection or a nasal spray). It is unlikely to help you. But as it's a triptan, you can't expect to bust successfully while taking it. (I'm a little confused about what you're saying. Maxalt is not naratriptan; it's rizatriptan. It also blocks busting.) Please read about O2 here: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ And note this: To avoid frustration, it might be wise for you to contact your O2 supplier before their first delivery to make sure you are getting the right equipment. Many of them are not used to providing for people with CH. You want cylinders (tanks), not a concentrator. At the least, you want one large tank (an M tank or H tank) and one smaller tank for portability (an E tank). Multiple versions of each tank are better. You need some kind of stand, at least for your larger tank(s). You want regulators that go up to at least 15 liters per minute (lpm), and preferably up to 25 lpm. (I say "regulators," plural, because the large tanks and the smaller tanks take different types of regulators.) And you want a NON-REBREATHER mask. These are all things they should know to give you to treat CH, but often don’t. When the stuff is delivered, have the delivery person set it up for you and be sure it's working.

...me too

Hey I resemble that remark.

A new clinical trial in Australia has funding approved to test psilocybin as a preventive treatment for cluster headache. The PEACE Trial (Psilocybin Efficacy and Acceptability on Cluster headache Episodes), led by Faraidoon Haghdoost and supported by the The George Institute for Global Health and the University of New South Wales under the Medical Research Future Fund (MRFF), aims to evaluate whether weekly low-dose psilocybin can safely reduce the frequency or severity of cluster attacks. There is also a survey on Faraidoon's page assessing the cluster headache research gaps based on the patients perspectives. https://www.faraidoonhaghdoost.com/post/cluster-headache-trial-got-funded-in-australia https://www.georgeinstitute.org/news-and-media/news/hope-for-cluster-headache-community-as-psilocybin-trial-funded