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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

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

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

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!!!

...me too

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"

.....wah-hoo...ride 'em cowboy! HBDDD!

....hi Daniel...glad you found us! sorry you have to be here...you communicate just fine... ...i have always had an aversion to sharp sounds, but it is quite transitory and non-CH related. however, during a hit i seek silence. not exactly "misofonia"... i've always considered it an inability to handle any more aural and sometimes visual input when fighting the beast.... ...re chronic. i was ECH for 23 yrs and feared...every day...going chronic. then it happened, turned out to be no better, or worse, than ECH...just a different version of CH that was still responsive to the same tools i had learned. my chronic was not daily HA but a non predictable hit sequence, no predictable cycle, BETTER abort efficacy with O2 (with a well earned breathing technique that saved my soul), D3, energy drink to improve O2 efficacy and sometimes effective on its own, less intensity of hits, different and/or reduced triggers. a whole 'nother version of a f'ckn nightmare, BUT not the horror i had feared. IF it happens, you already know how to treat...don't let the fear rule your life.... best jon

Took the D tanks but the vape pen bailed me out more often than the tanks. It is a pain to lug the tanks around but it was not that big of an issue getting them past the security at the port.

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.

Not from that area but did visit a few times. I have used Ron Andrews Medical.https://www.ronandrewsmedical.com/ they delivered to a hotel and picked up for me with a copy of my script email to them. No issues at all and I think it was something like 25 bucks a tank. I would call your PCP and ask them to write you a script for the oxygen, it does not need to be a neuro. It may be faster and they can send that over to get your tanks faster. Make calls and demand it, don't take no for an answer and you can get it done today if your motivated enough.

The time keeps flinging by in more and more of a jiffy with each passing year dangit! As much stuff as you've seen @Dallas Denny, it's about time to honk out a tell-all memoir is it not? Or maybe a highly edited one, but still a memoir! I'm just glad you have some long livin' genes on your dad's side. Me, I've worn out innumerable pairs of genes and they all have holes in the knees now.

Hey I resemble that remark.

Send me a DM if you need to chat

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.

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.

Not knowing whether it would be a viable option in your case, many CH'ers have opted for welding O2 (no prescription needed, and of course hopefully no wait).

Hi Everybody. Daniel here from Denmark. So one year ago I was also diagnosed with clusterheadeache and I am currently in my second cluster. But I am experienceing some other symptoms that what is normaly described also. So normaly I have really bad misofonia (hate of sound) but right now some sounds hurts in my brain. And it has been like this straight for 9 says. Is anyone also experienceing this? And also AI sais that someone with my profile (3 diagnoses) it is the perfect set for my clusters going chronic? Can anyone give me any info about this? This is absolutely one of my biggest fears right now. Sorry for my bad gramma and thanks a lot for everyone of you.

Here's some basic oxygen info: You should have oxygen from a tank/cylinder/cannister, not a concentrator that makes O2 from room air. You should have either a non-rebreather mask or the mask that is made for people with CH, the “Cluster O2 Kit,” which you can buy here: http://www.clusterheadaches.com/ccp8/. The flow rate should be sufficient that the reservoir bag on your mask is always full when you are ready to inhale using a forceful breathing strategy. For some people, this is 15 liters per minute (lpm); for others it can be higher. Since medical O2 suppliers generally won’t provide a regulator that goes higher than 15 lpm, you might have to get your own regulator. More about regulators below. You want to have at least two tanks: one large one for home and one smaller one that you can take in the car, to the office, etc. Batch has recommended what he refers to as a “redneck” approach, in which hyperventilating with room air is alternated with using pure O2. Read more about that here: https://clusterbusters.org/forums/topic/4919-batchs-hyperventilation-red-neck-bag/ (There is some research that indicates that O2 is sometimes less effective when first used, and then gets better over time (pretty quickly). That's something to keep in mind, although many people get excellent relief from the beginning.) If you get a standard non-rebreather mask, there will probably be at least one little circle of small holes in it with no gasket behind it. Tape over that circle or cover it with your thumb when you inhale. Be sure you are pressing the mask firmly to your face; don't use the strap to hold it on (cut the strap). Be sure you are getting a good seal, particularly if you have facial hair. You want to be inhaling pure O2 from your mask, with no room air getting in. Cutting the strap will allow the mask to fall off if you fall asleep, so you don’t continue breathing O2. Stay on the O2 for 5-10 minutes after you have aborted the attack. For many people, this holds off future attacks. Many people find that drinking caffeine or some kind of energy beverage as they start on the O2 significantly improves their abort time. More on caffeine/energy beverages below. There is no documentation of people experiencing “rebound attacks” from using oxygen at proper levels. People find different ways of breathing that work best for them. I have mentioned Batch’s suggested hyperventilation strategy as one example. In general, you should be inhaling deeply as you begin, holding the air in your lungs for a second or two, and then deeply exhaling, to the extent of doing or nearly doing a "crunch" to force out as much air from your lungs as possible. Looking down toward your feet as you use the O2 has been shown to help with aborts. Regulators. The oxygen should be flowing into the reservoir bag on your mask at such a rate that you do not have to pause before your next inhale. 15 lpm doesn’t do that for everyone, so they buy different regulators. NOTE that medical O2 tanks take different types of regulators. The smaller tanks use CGA 870 regulators and the larger tanks use CGA 540 regulators (all welding O2 tanks, of any size, take CGA 540 regulators). You can buy higher-flow medical regulators of both types online at amazon, EBay, and elsewhere. Many people use welding regulators (which, as I have said, will only fit on larger medical tanks). These allow very high flows, and can be adjusted for the optimal flow rate for you. You also can find these at many places, including amazon and EBay. You can get them at welding supply stores, too, but they are likely to be much more expensive. You should be able to find a very acceptable one for about $40 or less. If you buy one, try to be sure that it comes with a barbed valve that will hold your mask tubing. You can also buy a very inexpensive barbed adapter at many hardware stores or online. (Some people have gotten mask tubing onto the non-barbed fitting that is standard for the welding reg -- I'm just not very "handy" in that way.) Also, be aware that unlike a medical regulator, a welding regulator has no lpm settings or gauge. So you have to fiddle with it a little to get the flow rate you want. This becomes very easy very quickly. One other thing you'll need if you buy a CGA 540 regulator: a large adjustable wrench to tighten the regulator onto the tank. A demand valve system supplies oxygen only when you inhale (or sometimes when you press a button to release the O2). People who have these swear by them: as much O2 as you need whenever you need it. They can sometimes be found on EBay. There are other sources for them, but I’m not sure what they are. Maybe someone will add that information. Some people have observed that for some reason when the O2 level in their tank is “low,” the O2 doesn’t work as effectively for aborting, or might not work at all. “Low” in some cases can be as much as a third of a tank remaining. Something to be aware of. Some notes about dealing with oxygen suppliers (repeating some of what was said above). 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. Some people have found that the O2 delivery people are quite willing to provide them with extra tanks.

There's this, with Gammacore. The problem has been (and probably still is) that it is very expensive: Hemicrania Continua and Paroxysmal Hemicrania Treatment. I would PM Batch (his handle here is xxx) and ask him whether he has any experience with vitamin D3 and hemicranias. There are other alternatives. I'd google [new treatments for hemicrania] or something like that.

October 8 - October 11 $150.00 We are very excited to celebrate our 21st U.S. Conference with you. Join us for this long weekend of support, education, and community in Rosemont, IL, near Chicago O’Hare Airport. Check out the event page for information about scholarships, tickets, programming, and accommodations at the Embassy Suites by Hilton Chicago O’Hare-Rosemont This is a great opportunity for those living with cluster headache to connect about shared experiences in safe spaces. This conference is also appropriate for Healthcare Professionals who want to learn more about cluster headache and obtain CMEs for their education. We hope to see you there! Here’s what past attendees have shared about their experiences: “You need to attend. To find that you are NOT in this battle alone has such a positive mental impact. Whether you are an 18 year sufferer or a new sufferer, the community is loaded with amazing people. From doctors to care givers, the information and support that is available is the best in the world. The experience will be irreplaceable.” “I was hesitant at first…just another conference. BUT this is different. If you have CH, it is a must go! Meaningful, educational, helpful. Offers hope and support.” “I wish I understood the value and found this years ago. I only thought CB was a bunch of odd people in the forums, I had no idea how organized it was. The forums are helpful and a great resource, but connecting with people in person and realizing how much this group wants to help others changed my perspective.” Agenda and more details coming soon! Check out more information here: https://clusterbusters.org/event/clusterbusters-21st-annual-us-conference/

Dr Young down at Jefferson has been good for me. He is also a supporter of this site and attends the conferences. Him and his team will work with you well if you tell them your a member here. https://www.jeffersonhealth.org/find-a-doctor/y/young-william-b

Life gets the best of me and I forget to reply back to you wonderful folks! : ) @Clairmon - what @CHfather said, my prescription said, “Home Oxygen - 15L/min - non-rebreather, as needed for CH” Take that to your local home medical supply store and see what they say. Let them know you will pay out of pocket without insurance. Once they had my card on file it was done - local manager didn’t care why corporate was saying. As long as they knew they were getting paid. I even perform the drop offs and pick ups. Now, I just walk in, with the tank/s, I have two E size tanks, and let them know I need new ones and they bring them out and I sign a paper and im off. @FunTimes and @CHfather thanks again! Also, thanks for the tips on cutting the strap off and closing the air vents on the mask!

The regulator will depend on your tanks Tank Compatibility: E-tanks generally use a CGA-870 yoke connection, allowing for easy, tool-free connection. M-size tanks often use a CGA-540 threaded connection, although smaller "M" series (like M6, M9) may use CGA-870 You can find them online at sites like Amazon or ebay. You will want a flow rate that runs up to 25LPM

Mordecai, I am in the same boat as you and the same area. Live near Purcellville in Western Loudon, first time getting a proper diagnosis but third time going through an episode of what are usually monthlong clusters. Maybe we can talk, seems like you would have good specific advice for me? My doctor is willing to prescribe Oxygen but not experienced, I'm his first CH patient, and he doesn't know how to work with an oxygen supplier. Any advice? I am also more than happy to just buy welding or pilot oxygen if someone can give me the link to the right regulator to put on it and reassure me it's fine. Adding insurance paperwork and hoopjumps to something you are highly motivated to get done quickly never seems smart. Appreciate everyone here, this group seems like an amazing resource. I am really going through it right now, and it sucks to know you all are too but is good to share stories and info.

...yup, nothing is a given in this CH battle....energy drinks work for many but no guarantee...at least you tried! one note on sugar free versions....many contain aspartame as sweetener...its an amino acid like msg, which are vasoactive and if causing dilation exactly the opposite of what we need. trial and error got me to sucralose as the artificial sweetener which caused me no problems...

....one bit to consider, if even logistically possible for you, is to p/u and return tanks yourself. the O2 shop i used thought it amusing but appreciated. one phone call and i would have all my tanks in a rack waiting for me on arrival...quick switch out and on my way. this would also allow me to pop my head in the back room and chat/thank the techs. they usually don't see their clients, and i have always believed a face to the name is a game changer...once was handed an m60 regulator, no charge, with "use as long as you need" ...i still have it........

good for you!!!!!!!!!!! but to the extent you can, keep pushing for a big tank -- an M tank, or an H tank. they ought to have them, and it'll save them a lot of trouble if you have one. aside from e tanks being small, it is not unusual for the effectiveness of O2 to go down when the amount of O2 in the tank reaches some level -- half full; one-third full -- so you can be getting less useful O2 than the tank holds. You're going to be calling them a lot (as i think others have mentioned, the O2 delivery person should be your new best friend, and you might get some extra or bigger tanks from them). i'm not sure what a "travel tank" would be, but anything smaller than an e is hardly worth it. e is plenty portable. with your current mask, block the open holes on the front of the mask with tape, or with your thumb as you inhale, so you're keeping room air out. cut the strap -- you don't want to fall asleep with the mask on your face. press firmly to your face so there are no leaks. normally, the recommendation is to stay on the O2 for some time after the attack has been stopped, so that you might prevent subsequent attacks. five minutes, some say; others say for roughly as long as it took you to stop the attack. many people turn down the regulator as they do this. you should do this, but with an e tank you hate seeing the tank contents go down.

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