Dallas Denny

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

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

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

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

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

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

@spiny It was 92°at 12:15 in the shade on the John Deere thermometer on my porch!!! Just looked and it's now 95!!! Got a bad feeling this Okie summer is gonna be all about setting new record high temps!! You know you can always help out here with your wise words my friend !!

Welcome Mike and congrats on ending your cycle and getting O2 to make the cycle easier!!! I must tell you though that you're carrying your oxygen safety concerns to the extreme an totally unnecessary! O2 is NOT flammable!! It's an oxidizer, and will enhance an existing fire, making it burn hotter and longer....if it's in your bedroom away from a fire source you'll be good...and if you're a smoker, wait a few after aborting before lighting up!! Or, just keep doing what you are if it makes ya comfortable! DD

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

@xBoss....Rip on brother!! I sent the link to our fearless leader BobW yesterday evening! His response was "Holy crap, we need to talk about this!!" Lol! Ima relinquish the completion of this project to you brother...."this mission, if you choose to take it....".....lmao!! I was working on the most advanced airborne computer system the Marine Corp had at the time in 66.....had a final top secret security clearance and cudn't talk about it for 10 years after I was discharged!! But this stuff in today's world boggles my feeble old mind!! DD

@xBoss well dude, as far as I'm concerned, you nailed it!!! I'm not a "metal" kinda guy in my old age but I think it's "out fecking standing" as my DI would say in bootcamp!!!! I would still love to hear it done to a disturbed version of Sound of Silence....the live late night TV show recording, not the studio version.....but this is really good imo!!

@xBoss.....I just listened to the 1st verse and I freaking love it so far dude!!! Right on!!!

@xBoss hmmmmm....are you able to upload them here?

Hey @xBoss!! Thanks for the input bud! Unfortunately, ive explored that avenue of thought unsuccessfully! Downloaded ChatGPT and played with it for awhile but "no joy"! The problem is copyright and artist protection prevents the bot from creating a song using original lyrics against a copyrighted tune so it was a deadend!! I'd sure love being able to get that front guy from disturbed to do me a solid and sing it and the group play it but that ain't gonna happen so I'm back to the drawing board for now!!

@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

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!!

@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!!!

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

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

@standardized17493 I'm not positive about the hemicranias but with clusters the autonomic symptoms can vary from patient to patient....some folks get a stuffy nose while others have a runny nose....some experience a weepy eye while others don't!! FWIW, I do personally know a young lady with hemicrania continua who has had great success utilizing the "clusterbusters protocol" with Vitamin M as her busting substance!

Oh shit @standardized17493, my bad bud!! I definitely meant indomethacin and not gabapenten!!

So, it's great news that you've seen and been diagnosed by a neurologist and good that you've had an MRI to rule out other nastiness!! But to be honest, this does not sound anything like clusters!!! However, it does sound more like one of the hemicranias.....the good news is that gabapenten is an effective pharma solution in most cases!! It also sounds somewhat indicative of Trigeminal Neuralgia but I'm unsure about treatment options for that disorder. I would most definitely try to get a 2nd opinion, preferably from a certified Headache Specialist Neurologist!! Another long time member here, @CHfather, is a supporter of his clusterhead daughter who lives near DC so he might be able to chime in when he sees this thread and give you some direction on finding another neuro in your area. DD