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I put the official stamp of Jeebs "Like" on the Clusterheads Poem, but I do think these last two lines from it are worth qualifying: Unless you are a clusterhead You haven't got a clue I've long considered @CHfather to be an official clusterhead whether he wants to or not. This guy has consistently come to the rescue of tremendous numbers of fellow clusterheads on the forum over the decade, and while many may not realize it, all while going through the ultra severe pain/afflictions/hospitalizations wringer and them some himself - he's one individual whose severe health experiences I would actually not wish to trade for my own. Then with his own child a clusterhead, he's "got a clue" and then some. So here's a New Year's toast of infinite gratitude to one Clusterhead with a capital C who has made such a huge difference for so many of us, an individual who I shudder to think what Cluster Busters would have ever been like without, the hyper vigilant, ultra knowledgeable, incredibly empathetic dude who keeps the cluster info real, and who I find myself now building up into some kind of God-like figure, or at least a patron saint of headbangers, Chfather.

You see those nice Medical O2 tanks on my deck? THEY WERE FREE!!!!! Yes. I saw my Neuro last week and requested a script for O2. He gladly obliged and WE filled out a form. Our local O2 carrier is Lincare. The form has a bunch of questions unrelated to Clusters, so we left those blank. There were a lot of blanks! It stated ' minimum of 15LPM with a non-rebreather mask for 15 minutes, as needed for Cluster Headache'. My delivery came in 24 hours!! They will bring however much I require every week. 'How long does one tank last for you? How many next week?' So, should you need it and you are on Medicare, you can now receive it!! I am in heaven. Also in cycle, but this project makes it SOOOO worth the pain. I am delighted to have this cycle and uncover this stupid mystery we have been wondering about. Thanks to all of those who were able to attend 'Headache on the Hill'!!! WE WON!! Ok, time for a massive HAPPY DANCE. Yes, I will Pin this!

Update: This has continued to be effective, but he was still having occasional less severe attacks, especially when the weather changed which has been happening a lot recently where we live. Added Quercetin twice daily to the schedule about 10 days ago, seems to have helped even more. Only one attack since then. He’s even been able to have a couple beers without a headache which has previously been unheard of.

Happy New Year ya'll! Hope everyone enjoyed the celebration......meh, I turned off the tube, put on my jammies, and went to bed at 8:30! So , I ran across this poem by our very own @Fast Eddie ....I'm fairly certain it's posted here but it's been a long time.....I first heard it at either the Portland conference in 2010 or Las Vegas in 2012 when Eddie recited it....great poem by a great guy! ‘We call each other clusterheads" by Eddie Langford There are many types of headaches I'm sure you've had your share From stress and strains and migraines To a sinus one here and there But let me tell you about one friend That puts them all to shame This headache is a demon And a cluster is it's name To see a full blown cluster Is a very scary sight It can happen in a moments time No matter day or night It is the worst pain known to man It will put us on our knees We pray someone will knock us out And give us some relief We call the start a shadow A sensation in the brain That says "the demons coming back" To taunt us once again The brain turns into cornmeal mush The eyeball starts exploding We moan and cry and rock our heads There’s no doubt how bad we're hurting We call each other clusterheads Our tiny little crew Of others who are just like us Who know what we go through So please don't say you understand Just what we're going through Unless you are a clusterhead You haven't got a clue DD

Just want to say a BIG THANK YOU to Bejeeber,Spiny,Freud,CHfather,Jon019,Dallas Denny,Xboss and Fun times I'm pain free got my sanity back feel like I've got my life back, got so many more tool to fight the beast when he decides to reappear. As I said I'd never spoke to any1 who has suffered with this s--t before I found you guys and this forum , THANKS again

This is one of the best, most complete pieces on Cluster that I've seen. No surprise given who the authors are, but I thought everyone should see it if you haven't. Not tons of new information for those of us who are battling daily, but the main intent of the article is to raise awareness and education in the medical community. https://www.bmj.com/content/376/bmj-2020-059577

Hi all. Here is an interview explaining the Vitamin D Anti Inflammatory Regimen for cluster and migraine headache with Pete Batcheller, the cluster sufferer that came up with the regimen. (re-film of previous interview with new slides etc). If you've been thinking about trying Vitamin D3, have heard about it for overall good health or have questions about the regimen, i.e. how it works, what if it doesn't work, safety, testing, general supplementation questions etc. then this video will hopefully be of help to you. https://www.youtube.com/watch?v=SofbDDhmQUs As always, Batch - thank-you for your contributions. The Vitamin D Regimen for me personally has been absolutely amazing.

Happy New year to every CH sufferer. And every CH supporter We are 1 of a kind and we need to stick together

A week back on the ket and already my CH is much better!!! Decreased frequency and intensity for some hits. Slept through the night last night...

Hey folks sorry for the delay it’s been a bit of a clusterfuck lately w the move/transition But I’ve finally found a doc that is comfortable w ketamine and CH. we started w nasal spray and troches, and they do infusions which I’m going to try and work in per their recommendation . They don’t advertise that they do infusions like all the money hungry places here. They recommended I do infusions to kick back the beast so it responds more to the at home ketamine. ... they are more affordable as well. Found a pharmacy that charges 1/4 the $ as I was paying before... I can breathe again wooo hooo!!!

Hi! Welcome to the forum. You should be excited because life gets better with Cluster Busters.

Hey BoscoPiko, Cluster headaches are very sensitive to serum oxygen concentrations. If the partial pressure of arterial oxygen (PaO2) drops below a given threshold as it will when flying at a cabin pressure equal to 7,000 feet altitude (2100 meters) in most commercial airliners, PaO2 will drop by 30%. This opens the door to the CH beast jumping real ugly. The same thing happens when we sleep as our respiration rate is as low as it can get while we're alive. The low respiration rate also causes an increase in the partial pressure of arterial CO2 (PaCO2). The combination of low arterial oxygen and high arterial CO2 makes for a perfect storm occurring as most of you know, one to two hours after falling asleep. If you're an episodic CHer in cycle or chronic and need to fly, take a couple Imitrex (Sumatriptan Succinate) 50 mg tabs an hour prior to takeoff and carry an Imitrex inhaler or Imitrex SC injection pen during flight. If you're a CHer maintaining a CH pain free status taking a vitamin D3 maintenance dose of 10,000 IU/day and cofactors, take a 100,000 IU loading dose of vitamin D3 24 to 36 hours prior to the flight. The following chart illustrates the changes in vitamin D3 and 25(OH)D3 serum concentrations following a single oral dose of 100,000 IU vitamin D3. Take care and keep your immune system boosted with vitamin D3. V/R, Batch

Happy to see your post Shaun!! As I've said on many occasions here over the years, "One more cluster soul out of the darkness and into the light!" DD

Well got a bit of a shock today . Daughter rang from hospital bed to say,she is moving out of hospital tomorrow and moving in to this new rehab centre that has just opened up . Charity run , it's amazing place like a 4star hotel . Could be there up to 3 months , but she is determined to be out within a month . So just 1 more big step and we get are daughter home .

Oh my god just got back from visiting my daughter in hospital and she is know awake on really heavy pain killers so still groggy plus still on breathing tube at present , but slowly but surely my family and i are getting her back . This is probably 1 of the best days in my life I can't stop smiling. Gonna open a bottle of champagne to celebrate

What other medications are you taking? How else do you manage your clusters? You want to look into getting oxygen now it will change and save your life. You can abort a cluster in as little as 5 minutes with the correct setup

ER CARD, While I was on the Board of Directors at O.U.C.H., we developed a Medical Alert Card for Oxygen Therapy for CHers who had to go to the ER with bad CH. The document is signed by the CHer's neurologist or PCP explaining the bearer suffers from Cluster Headache and needs oxygen therapy as a CH abortive at 15 to 25 liters/minute STAT! The thinking behind this card was that it would help eliminate most of the Stump the Dummy questions frequently asked by ER receptionists and get the CHer oxygen as an abortive as fast as possible. Take care, V/R, Batch The quality of this image is not that good. Unfortunately, this web portal limits attachments fo 23 KB and that's not enough for the original pdf document. Take care, V/R, Batch

Juss, you are referring to a FB Group that is well known by many here. They are not 'us' and push/prefer Pharma for money reasons. You click, they make money. That group, is not any part of our group here and we were around for about a decade before they formed. And they will throw you out for mentioning MM. Please, take a step back, reread some of our responses to your posts and think about it. We, as a group, have tried to understand you, help you, and support you. For BPD, Dialectical Behavior Therapy has proven highly effective. It was developed for BPD. My child, with this disorder, has had only one meltdown in 8 months since she finished BPD Therapy. Normally, she would have had at minimum 10-12 meltdowns. Her IQ, is above 150. As I suspect yours is. Which makes the disorder even more difficult. I have seen it for decades now. It is horrid. My heart hurts for you. I wish you health and happiness. I wish you peace. I know that peace might be the most difficult thing to attain. For your posts on the board, please be kind and positive, or just scroll on by the post. spiny

Everyone has covered it pretty darn well Shaun. I find utter delight in helping one person become pain free. Each of them are special. And I consider them all friends. Stay safe, happy, and loving. Life will be great!

Yo CE...so glad you found us... talking, sharing, or just plain ranting with folks who understand and care can be incredible "medicine" all on its own......and then ya got spiny! kept reading that truly wonderful post to throw in something...but there weren't no room. Golden!! ...all i can say is that it makes me sad and frustrated that somewhere along the way there was no OXYGEN given. guess it goes along with the clueless misdiagnosis, but every medical reference i've ever seen (from the 80's on) acknowledged that O2 was THE recognized abort. safe, fast, easy once dialed in, ways of making it inexpensive, and none of the nasty side effects we all know so well with the migraine drugs thrown at us. may not work for all, but does for more of us than anything else...save maybe triptans. you've never been given, Imitrex (sumatriptan), Zomig...or any other triptan..or they didn't work? i'm shocked. OXYGEN can be a game changer...saved my sanity, perhaps my life. That should be your first step.... best jonathan

Yes, the usual amazing post from spiny. Like her, I have to ask -- Only Emgality? That would be very unsatisfactory. The Emgality might work, but there are strategies to get you out of pain now. And regarding that Emgality prescription, it is for 300mg? That's what is needed for CH. Even with a migraine diagnosis, you should have been prescribed Verapamil and some kind of triptan (perhaps the injectable form, Imitrex, but maybe tablets or a nasal spray). Did none of that help you? spiny has covered it all so well that there's not a lot to add, but this post might have something useful for you to know: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

So sorry to hear you are struggling. Sounds like you are going to need a fusion which are highly successful procedures in most cases. Will likely lose some range of motion but the pain will be gone so it seems like a far trade. Spinal surgery is not for sissies and since you are anything but a sissy you will do well. Make sure you have someone who has been at it a long time, has a good volume of experience with the procedure and is nice to your wife. Stay strong.

First of all, the "pain in my head constantly" may be what we refer to as a "shadow." Clusters are referred to as the Beast. Makes sense, huh? As to your other point, I have to remind myself at bedtime that if I wake up and wonder am I having a cluster attack, I am, and I should get right on the oxygen. The abort is easier. There are some documents on this website under patient resources about how to make the most of your oxygen experience (doesn't that sound romantic!). Also, Four cycles in nine years is, as you point out, lucky. I used to be episodic, one episode a year for 6-12 weeks with headaches only every other night (sleep and alcohol are my triggers). Slowly over 41 years my cluster disease has progressed, and now I'm chronic with 3+ attacks every night year round. Lots of resources here, glad you found us. We are, I think for the most part, people for whom the medical world has not really made a place (although thanks to Clusterbusters and others that's getting better), and we are each our own guinea pig, experimenting to find remedies and prevention that work. All the best!

Hi to everyone on here I just wanted to express my thanks to everyone that kept me afloat for my last 3 month cycle. It was a hard one and longer then I've ever had to endure . I really don't quite know how to properly thank everyone. I haven't had spikes or the devil visit me in 2 and a half weeks so I dont want to jinks myself but I think and pray I will be in the clear for a bit. I believe it was @spinythat said to me life happend between the clusters and I have had a few days of life. Road my horse.. and am now at my retirement home that I haven't been able to visit in months.. a little life is worth living for!!! I want to send picks but the site keeps telling a different size so maybe later. Thank you all.

Suffering from Clusters gives us a first hand understanding of what the term practicing medicine means. Most of us on here have been wrongly diagnosed for years and have been through a hand full of doctors. Best advise I can give is keep pushing on, if your doc does is not willing to work with you find another doc. The fact that you found this site is a huge plus as there are so many great people here that can help you in many ways. As for O2 you can go the way I did and rent an O2 welding tank purchase a regulator from Amazon or Ebay and purchase a mask through Clusterbusters.

.....

Ginger!! Tea, candy, chews, etc. Ginger is great for shadows.

...it's a long, windy road.....but there's sun at the end Shaun.....

...your other family is pulling for you and yours Shaun!

....need.new.doc... ...preferably a HA specialist, at worst a open minded pcp who will respond positively to your needs (knowledge of which you may have to supply). nearly every clusterhead knows far more re CH than most docs, including neuros, will ever know. most doctors now have neither the time nor desire to become a student of CH for you, its a rare condition. you are the advocate....

Hi Moona. Ouch. It hurts to read this. I was on Verap too and my dentist talked me out of taking it one summer. It never worked again at the levels my body could handle, so I feel your misery to some degree. It is also how I arrived at this site some years ago. Not doing a taper of the Pred was irresponsible, I think. Backing up and starting over due to his/her mistake is baffling to me. Insurance messing with you on refill dates is way too common these days too!! Not like it was Oxy, right? The Pred will normally stop the pain until it is tapered down to your personal cutoff point. Meaning that we are all different. For me, below 20mg/day and they return. Others have different amounts that allow the CH to blast back in. The Pred is supposed to be used as a 'bridge' to get you out of pain while the Verap builds up in your system. It sounds like it was prescribed correctly the second go around, but it may be that the damage was done in the relief department. Most take over 320/day for relief, with some going up to over 900mg/day. Verap is not great for your body and many doc's won't give the higher dose that many require. And at 240 or 320/day is not high enough to work for some. It lowers your blood pressure and that needs to be monitored. So, that is a limiting factor on how much you can take too. You have O2 and abort with that now, right? It is still your best friend. Add in some caffeine and you can abort almost all of your hits. Of course that is not the final result any of us want, we want to be pain free. Next up in the ease of application is the D3 Regimen. I will attach the one that I take. It was the first iteration of the protocol. Here is the link: https://vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 These vitamins have an amazing track record for many of us. It will slow the ramp up of pain and lower the max pain level reached too. That alone is worth swallowing a few pills a day. Ok, more than a few, but they are vitamins and good for you. Many Chers have low D3 levels. It should be 80 - 100mg/ml when you get blood work. It is suggested to get your D levels checked before or soon after starting the D3 Regimen. I see that CHF has attached the later version of the Regimen. It has more stuff in it and many do go that route. I think that you will feel better and more optimistic if you taper off the meds - Pred and Verap - and run with the D3, O2, some caffeine, and perhaps toss in some ginger for shadows if needed. It really works for many. If it does not put you in a pain free position, there are other things to add that won't mess with your body like what you are currently taking. You can start it right away too. No doctor needed. You can even order the D3 test yourself in the states. All the best and hang in there. You are among friends here and we have been in your shoes too. Kinda nice for a Clusterhead.

It's been years since I've posted in the forum but something made me look today and I saw this old thread. I and my wife for the shot way back in August of 2017. This was just a couple months after the good doctor passed away. We got the shot from his friend and fellow doctor, (can't remember his name to save my life) and that was weird. This doctor is primarily a pediatric doctor. Picture to adults in their late 50s sitting in a pediatrics's waiting room!!! Anyway, I got the shot for my CCH and my wife got it for her fibro and arthritis. We both felt immediate relief and that relief went on for about four months for both of us. We were told that the shot wouldn't do much for the wife's bone on bone pain and it really didn't. but for the joints that weren't that bad, it REALLY helped. I went completely pain free for about four months and then the shadows slowly started coming back along with full on CH attacks. The only side effect either of us saw was that I had pretty bad thrush for a couple weeks with is typical for any large dose of any steroid, so no biggie really. Sadly for us, having to go to OKC just wasn't a realistic option. We spent 52 hours on the road, 27 of that driving. With the two $300 shots, we were about a grand down. To do that three times a year just wasn't doable. Since then we've discovered the beauty that is vitamin M and not we're both doing that and it's been going great for just over two years at this point. All I can say is find what works and exploit the HELL out of that, regardless of the risk. It's your life.

I don’t remember who it was that told me about drinking energy drinks during my last cycle back in October but I want to say “THANK YOU”! I was skeptical of drinking a monster energy drink or red bull during an attack but after trying it and then getting on the O2 it was a game changer for me. 5-10 minutes and headache aborted. For anyone that hasn’t tried this I’d suggest giving it a try to see if it works for you. you may just be as surprised as I was

Yeah absolutely. So I got prescribed the device by my neurology. I didn't have to pay anything and have had three top ups so far. You get a 93day card with the device and it will run for the 93 days and then stop working. I just email my neurologists secretary and she sends a prescription form to GammaCore and they send out another 93 day card and lubricant. I haven't had to pay anything for this which is something I'm grateful for. So you can use it in two ways - as an abortive (3 x two-minute stims, 3 minute wait and then 3 x two minute stims) and as a preventative (3 x two-minute stims in the morning and 3 x two-minute stims in the evening). I was mainly using it as a preventative and I think it might have reduced the intensity or attacks but didn't get rid of them. There was some residual nerve pain / sensations afterwards for about 5-10 mins I guess I could liken to shadows in intensity but running up the nerve in the neck and head. It's difficult to say how benificial it was as it's something I'm still experimenting with. In terms of using it as an abortive I stopped using it for nocturnal attacks as they were always so well developed and I found it didn't really help with the pain and if anything agitated them more so. I use as an abortive for some attacks I get during times I'm awake and again although it doesn't get rid of them I almost got the sensation that it was spreading the pain out over a larger area and so it almost didn't hurt as much as the pain was spread over a larger area and so hurt less even thought the pain didn't really dope. I hope that made sense but I always find my CH feels like a nuclear bomb has gone off inside a single cell. In summary I'd say I'm sceptical about it's effectiveness but it's definitely something I'm gonna continue with as I really haven't used it enough so say either way. I hope that helps, let me know if you want to know anything else.

Annette Tell them you are going to pay out of pocket and I bet you the price will drop and you get a better deal. You just need someone on the other end of the phone that is willing to work with you. I think mine went down something like 200 bucks a month by paying out of pocket. Things have changed alot in the last 2 years and it is a constant fight with my oxygen company but stay on them and they will most likely give in to you. Last time I had to call I was told due to the oxygen tank shortage they are saving it for people who really need it, I told that to say that again and listen to the words coming out of her mouth. I had my 3 tanks delivered the next day. I am no longer allowed to get the smalled E tanks so they now only bring me larger M and M60 tanks. Makes no sense but more o2 for me so F them!

Yeah, I’m episodic and mine always start off sort of low key. They usually ramp up in frequency and amplitude until I’m going full tilt, 4-6 hits a night at peak. Although I’m not as clockwork regular as some. I’ve even had a few low level hits and then not gone into cycle. Like a miss or something. But usually when I start feeling pain on my right side, I get my stuff ready to rock. Better safe than sorry. I got caught out of oxygen once when a cycle started going, thinking maybe I’d miss, and I paid the Piper. One time of that was enough, I’m not doing a repeat of that debacle. So I concur with the seasoned veterans above. Time to get your stuff sorted. Better safe than sorry, and all that.

Hey Spiny, When I logged back in, I was overwhelmed with the response!! The amount of support and information that has been provided is tremendous and I'm grateful to have found this community! I'm looking forward to sharing information and, hopefully, becoming a contributing member to this topic. Charles

Yep, just when you have this tricky beast and it's timings all figured out - beware, it can, and so often will, throw a completely unexpected curveball at you, even after 20, 30 or more years of entirely reliable, predictable precision timing accuracy. This'll go for cycle timing, time of day/night when hits can be expected, and other stuff not related to timing, like one of the biggest shockers I've learned of - switching to the other side of your head (!!!).

I'm sure I should know this, but what video are you referring to? (I've been here 11 years, and I admit that I haven't kept up outside this forum, even with things at this site.) As others have already said, there's a lot of possible help here, and if you feel like it, you might tell us how you are treating your CH now. It's possible if you skim through this file, it might have something new for you. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

Here is one of my most happy places. This was Thanksgiving day or as @Bejeeber said ThanksBirthGiving day I was having her connect up with me prior to hoping on

I find putting a frozen bag of peas on my neck while using the O2 helps. Sometimes I'll put a second bag of peas on my head. I'm sure the whole scene looks rather chic to the untrained observer

I am glad you found this site, there are great people on here that will help you out a ton. Your headaches sound a lot like mine. I have clusters and migraines which I have been told is rare, lucky me! I can not take imitrex as it makes my headaches worse, but I can take Zomig and it works wonders. Be careful there is a rabbit hole that comes with triptans that can send you into rebound headaches that will not go away unless you stop taking them and suffer through a few days. Prednisone is a life saver but you have to be careful with how long you are on it as it is bad for bones and liniments. O2 is great also if you cant get a prescription and a high flow O2 regulator rent a oxygen bottle from a welding supply and get a welding regulator.

I had horrible neck pain some years ago. Every day a misery, wearing a cervical collar all day, unable to do anything comfortably. I was in the hospital for a week just because I was going nuts from the stress. The first day I was there a doc came in and said he had looked at my MRI and he was ready to do surgery whenever I wanted (fecking ambulance chaser). Nothing they gave me, even morphine or steroids, helped at all, and when they kicked me out they gave me giant bottles of things to take daily (neurontin, oxycontin, oxyIR . . . ). I flushed them down the toilet on the third day (too bad -- street value was probably pretty high). It happened that we had a connection with a top neurosurgeon, and I counted the days until my appointment with him, thinking he surely was going to rush me into surgery and finally fix the pain. Instead, he said to come back in two months after doing physical therapy regularly. I was crushed. I wanted it over, and I was terrified of doing anything to make it worse. Turned out that waiting was the right thing to do, and I never did need that surgery (and I never miss a day of doing my neck exercises). There are those famous studies where they would look at people's spines and try to predict who was having back pain. Turned out that except in extreme cases there was no connection between spinal condition and back pain. One person could have three herniated disks and be suffering, and another person could have something that looked just the same and be having no pain. And the other way around -- no structural issues but serious pain for some and no pain for others. So maybe, like me, you were just having some kind of awful episode and it's going to get back to normal or normalish and just become a memory. Or, of course, maybe not, but it sounds like they're ready for you if surgery is what you need. Love you, Denny, and sorry you're going through this now, too.

Hi Ta, There is a plethora of info on this site specific to the D3 regimen. In the top search bar of the forum just type in D3 and be sure to follow the instructions from a user named Batch (handle XXX) there is more to making the D3 be effective than just taking the D3 (you need to take the co-factors). You never mentioned oxygen so I am unsure if you have a scrip or have tried it or not but many on here swear by it to abort. It works for me from time to time. There is a video on here that goes over the breathing techniques that seem to be effective with a non rebreather mask. I was able to get the intensity of attacks to be manageable without the triptans on the D3 reg. I so understand the frustration with folks mentioning migraine etc. I think a majority of us have gotten that response a time or 2..

OH WOW !! I woke up to a blinding CH/KIP10 this morning and thought fuck it, before any abortive or other techniques I will run try the HOT WATER TECHNIQUE. Stood in a bucket of hot water for 5 minutes approx, to just below the ankles, and went from a KIP10 to KIP5 within a few minutes. GREAT !! THANKS A BUNCH, great for instantly lowering blood pressure>..... however KIP 5/ Nasty eye pulling shadow is persisting for some hours now since the hot water, but I can manage to function somewhat with KIP5. Thank you CHF for those interesting treatments / Will definitely be trying that again .....

Never mind guys! I have an eye infection. I was freaking out cause the pain was on my left eye which is my cluster side. Scared the crap out of me.

...yeah...it was a worry, but after a number of real bad hits early on....and even w/o a diagnosis...there didn't seem to be residual physical damage so i started worrying/concentrating on the mental health aspects. hard work...nothing physical to grab on to...i constantly wonder how folks maintain in the face of CH. my admiration for the perseverance of clusterheads is endlessly deep... ....what became near incomprehensible for me was "how is it even possible to SURVIVE a pain so incredible it defies description?". there were 10's (thankfully very rare) where it hurt so bad i actually forgot to breathe......yet here i am....

@KmanTexas Wow!! I do believe ass rape is putting it mildly!! Old Dallasite here by the way....43 years between Cow Town and big D...we escaped the Metromess a little over 10 years ago!! So, I wrapped up a 20 week cycle in early May.....I started with a 1/4 full M sized tank, refilled it twice and still have a little over 1/2 a tankfull.......at $22/refill which is the same price I paid in 2015 evidently their cost hasn't increased due to covid!!! I said screw those idiot medical O2 suppliers many years ago and opted for welding oxygen so granted, I did have an up front investment of $300 for the cylinder and around $75 for a welding oxygen regulator. Now that's here in far south central Oklahoma.....when I was still in big D I was able to lease a large M sized tank for a $150 deposit and $6/mo with refills (actually exchanges) costing me $18 at Seagoville Welding Supply on 175. You just can't let em know you're going to breathe it!! Neither them or my current supplier ever asked me any questions...I walked in, ask for a large tank of weld ox and he wrote it up and took my dollar's.....they're in biz to sell welding gas so they don't care what you're gonna do with it (as long as you don't tell em the truth..lol).....if they should ask, tell em you've got a bunch of heavy scrap metal to cut up and a buddy is loaning you his acetylene rig but he doesn't have an o2 cylinder.....by telling them you're gonna be operating a cutting torch they'll automatically expect that you're gonna need to refill more often. Get rid of them damned money mongers!! Good luck! Dallas Denny