All Activity

@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

Dude I tried to do this some time ago to this very song!!! Good choice of song for it man. You'd be able to achieve this with AI somehow if you were open to using it for this - there are some amazing open source generators floating around on Github that I had bookmarked to circle back and look at this again. If you want me to jump on and add this to list of projects I'd be more than happy to investigate for you. Let me know bro!

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.

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

Not that I'm aware of - especially since busting doesn't require constant dosing or particularly high dosing, and there is apparently evidence that psychedelics can actually be mind expanding. People with a genetic predisposition to schizophrenia are warned to stay away from busting though, since there is said to be a real risk of triggering such a latent condition. I think the people who are closest to having mastered it know it can be a fool's game to assume the CH monster can never get 'em again. I'm now in a several years long remission, successfully busting when the shadows start intensifying in a way that signals an an episode wanting to rear up, but also probably benefitting from the not uncommon phenomenon of aging out of it at least somewhat - where the remissions can become longer and longer, whether busting or not. One dirty little secret there though that I hate to mention is that along with extended remissions, extended bouts/episodes can be concurrent, and the frequency, intensity and length of the attacks can increase. I REALLY hate to mention that part, and should add that this increased severity when in cycle should not be expected to automatically accompany extended remissions. I don't know about 100 years ago, but 1,000 years ago some indigenous peoples used psilocybin, rivea corymbosa seeds, etc. for severe head pain. The O2 aborted attack reappearing an hour after falling back asleep is also unfortunately pretty common. Hang in there man, you'll get through this one and will be positioned to potentially prevent the next cycle completely.

Thank you Bejeeber. Chat GPT said Melatonin might help reduce or prevent my midnight CH attacks. I'd love to meet with you guys or have a phone conference because the typing and emails are nice but seeing and hearing is much more powerful. I'm sure everyone wants their privacy but I'd love to one day talk to someone in the CB community so I can get more clarity on things. It sounds like the busting is a miracle for many in the CB community. I assume some have perfected it to the point where they barely even get an attack and they have the beast fully contained so to speak. I wonder if there is any long term mental damage that can occur from busting. How are you Beejeber? are you pain free right now and have you mastered the CH monster? I can only imagine what people did back a hundred years ago when they were getting attacks, they must have just jumped off a cliff. The levels of pain are various for me. But even the weakest level is enough to keep me awake and uncomfortable. The highest level makes me wish I were in heaven. The oxygen works but only temporarily. it will quickly kill the pain but once I go back to bed, within an hour the pain comes back. The good news is that in this current cycle, I have been able to fully kill the pain a few times without the Maxalt. I hear people chug a 5 hour energy drink to abort an attack but if the attacks happens at 1am, I guess I'd be up all night wide awake and then suffer from sleep deprivation. are you on any other CH forum or website and have those sites helped you in any way? Thank you, Jimmy

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!!!

I have suffered from headache clusters for years, but this year 2026 they started in January and are still on going, I am having up to 3 a day, I am at GP every week for new scripts of sumatriptin, I have just managed to see a neurologist this week who prescribed me verapamil but so far I have had no changes. Can any one please recommend anything,I am in New Zealand and going in to my fifth month of this, it's affecting my whole life at this point Help

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.

Hi CH Father, Denny, BJeeber and Bosco, I hope this message reaches all of you. Thank you all so much for your care and concern. I've been meaning to see how you were all doing during my recent pain free period which lasted over a year! I'm going to do the FULL Vitamin D regimen, the blood draw thing isn't easy because seeing a doctor here in LA takes months with the insurance I have. I'll ask my doctor about the Naratriptan. He gave it to me and told me to take it an hour before bedtime so that my super punctual Midnight attacks would be prevented or lessened. I guess Naratriptan is not effective and no longer used. It's funny because this doctor is supposed to be THE headache guy in LA. I have the non-breather mask and I usually get the proper oxygen tanks. I'm awaiting on the oxygen, it usually takes some pulling teeth to get it all because of the insurance company. I'm tempted to go back on the verapamil (I stopped it about a week ago because it just makes me feel lousy and I thought I was coming to the end of my cycle). It sounds like FULL Vitamin D regimen, oxygen, and verapamil are the way to go for now. I'll bust (tried it once about 2 years ago and I couldn't tell if it ended my cycle or helped my cycle) if I continue to get these midnight attacks. Getting help like this is so incredible. Thank you. I wish there was a way to do all of this by phone or with a CH specialist here in LA who knows all of the things you guys are talking about. I'm guessing none of you are 100% pain free at this time or that your attacks have permanently ended. If this is the case, I will put you all in my my sincere and strongest prayers so that the switch turns OFF forever and the only reason why you would ever visit this site is to help people in pain and to encourage and guide them. When this affliction ends for me permanently, I will always be a part of CH community so I can help people and hopefully deliver them from pain permanently. Thank you!!!!

Now that's funny @jon019!! @FunTimes you must be near Carlisle PA? Seems like thats where Jack told me he was buried....Jack was sac n fox and later in life became tribal chief before he passed....small world indeed my friend!!

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

@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!

Jim Thorpe.. His grave site/memorial is not to far from me. been to it a few times. Small world! It is awesome that you keep in touch with several members on this and other cluster support sites, you have and continue to help so many people in so may facets of this game we all play. Keep up the great work you do and know that you are appreciated by many! Have not seen Spiny on here in a bit.. Hope all is well with her

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!!!

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

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.

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!

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

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

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.......

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

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