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scubasteb

Welding Oxygen Usage Feedback

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Hi all, my name is Steve and I have episodic CH's for the last 7 years. I was first misdiagnosed by an ENT and then a neurologist, then properly diagnosed by the same neurologist after a follow-up visit with CT scan. Got put on a few meds that may have worked, but considering the way CH's vary from attack to attack, I'm not sure if they really did helped. I typically get my once a year cycle in mid-to-late-November, but for some reason they came on in early August this year. 

Without insurance, I decided to try out MM and took 3 doses, spread out at 4-5 days in between. I still got attacks in between doses, but I'm hoping for the best after this last one (if I'm getting the terminology right, the attacks may have been "slapbacks"... I guess I'll find out soon enough if the third dose busted me out). 

I've learned so much from the ClusterBuster site and also from you all here on the forums, and I'm determined to get an oxygen tank. I'm in a bit of a standstill though, because I don't have insurance and so everything will have to come out of pocket for me. Neuro visit to get the script will cost $250 and after that, I'm not sure how much it'll be for the tank, refills, etc. 

It seems like there's overwhelming support for going the welder's oxygen route. I do have concerns here though. For those of you with long-term experience with welder's oxygen, have you ever had any adverse effects? My concern is not with the purity of the O2 (as I've read here that it's the same level of purity at medical-grade), but the cleanliness of the tanks. I'm just worried that I'll be putting unknowns into my system that is already fragile. 

I've already read every bit of welding info here on the message boards and I haven't read anything negative. But, like looking at the reviews on Amazon, I tend to want to hear both sides. I want to not only hear about everyone's great 5-star experiences, but also the 1-star reviews. Has anyone had any bad experiences with welder's oxygen? I'd really like to hear from you. 

Thanks and hope you are all pain free today!

Steve

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Since you've read everything first (thank you!), and I have nothing negative to contribute, I'll just mention that it might be less expensive than $250 to get an O2 prescription at a walk-in clinic.  If you have any official piece of paper saying you have a CH diagnosis, you could call around to walk-in clinics (if there are more than one near you) and ask whether they will prescribe O2 for your CH.  (This isn't a crazy scheme I'm making up; I know of two people who have done it.)  As you have probably read, the good thing about getting medical O2 is that they deliver, so you don't have to do the schlepping of tanks during a cycle.  

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Thanks for the quick reply and for the alternative method of acquiring O2 the "proper" way. I'm going to give a call around a few walk-ins now and see if they'll provide. However, it sounds like welding O2 is the way to go; I have an AirGas location about 20 minutes from me, so it wouldn't be to bad of a hike and I don't mind carrying around a 40 cu. ft. tank back and forth (at first) to see if the O2 works for me. 

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Thanks for the follow up q's. Yes, I put in an order for the ClusterO2 Kit half an hour ago (haven't received an order confirmation email yet, though) and I'm planning on visiting Harbor Freight for their oxygen regulator. Just have to wait for Airgas to accept my account so that I can rent a tank, then I'll pick up both the tank and regulator on the same day. Fingers crossed that I don't get another attack before I get all the supplies. 

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G'mornin Steve!

I've been huffing weld ox for around 8 years and haven't run into any issues other than the "schlepping" that Chf mentioned.....my tank is approximately 4' tall and 9" diameter and very heavy.....but, as a result of busting, I routinely abort hits in 5 to 8 minutes so even in high cycle a tank full lasts me for quite awhile.....my last cycle was close to 6 months and I used a little less than 3 tanks full ($60)......just make sure you don't let your supplier know you're going to be breathing it!

I personally know many clusterheads who use welding oxygen, many for much longer than me and I've never heard of anyone having any issues!

Dallas Denny 

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I have had no adverse effects from welding O2. Been using it about 5-6 years. The tanks are heavier as they are steel, not aluminum. I would suggest getting two when you decide that the O2 is working for you. That way you never run out.

As it was once explained to me: Welding O2 and tanks are as clean as medical tanks. No one wants bad welds! Especially on a high rise or other large building. Very costly to have a weld fail!!! The O2 comes out of the same tank no matter what it is going to be used for.

Hauling a 40 or 60cf tank is not too bad. If you find that you want a larger tank, get a hand truck to strap it onto. Keeps it steady and safe and makes hauling a lot easier!

Read the O2 page in the Clusterbuster Files and use it correctly for maximum benefit. Work it. Some claim that O2 does not work for them, but most of those are not using the proper breathing technique or they assume that the O2 will prevent the next hit from coming. It won't. But it will give you PF time in the interim if used correctly!!

Good luck!!! You will be amazed. :) I have yet to read of any 'adverse' effects from using it. So, looking for that low rating likely won't help in this case.

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Hey Scubasteb,

If you run into problems following CHfather's excellent suggestion for cash and carry medical oxygen, don't be afraid to buy welder's 02...  I understand your concern about cleanliness of welder's O2 cylinders.  In reality, this particular issue becomes a mute point when you understand the differences in fill procedures for both industrial and medical oxygen.  If you look at the FDA's Compressed Medical Gases Guideline issued under 21 CFR 10.90, the single biggest difference in O2 cylinder fill facility procedures for medical oxygen is a sniff of smell test of cylinder contents before filling.  See:

https://www.fda.gov/drugs/guidancecomplianceregulatoryinformation/guidances/ucm124716.htm

As a Director at O.U.C.H. and co-author on a patent for the demand valve method of oxygen therapy as a rapid and reliable CH abortive, I had the opportunity to visit a few medical and industrial oxygen cylinder fill facilities.  As the above FDA procedures are not mandatory, most fill facilities use a vent - 2 second fill - vent, then fill sequence for both medical and industrial oxygen cylinders on a multi cylinder fill manifold...  In short, I never saw anyone actually smell the contents of an incoming medical oxygen cylinder prior to filling...  They all get the same external visual inspection of the cylinder and fill fittings prior to filling.

Nearly all of these fill facilities use the same piping and fill manifold systems for both medical and industrial oxygen cylinders and all use oxygen coming from the same liquid oxygen storage tanks and evaporators for both medical and industrial oxygen.  The only differences is the signage : 

I've used welder's oxygen from the same welding supply outlet for the last 7 years and never had any problems. I've used the same Flotec InGage 0-60 liter/minute oxygen regulator with a 10-micron sintered metal inlet filter.  Once you buy the initial cylinder and that usually comes to $250 to $300 for an M-Size 3995 liter cylinder, you drop it off when empty and pick up a freshly charged cylinder for around $35.

Since I developed the anti-inflammatory regimen with 10,000 IU/day vitamin D3 in October of 2010, my usage of oxygen as a CH abortive has all but stopped completely.  I'm on my second M-Size oxygen cylinders since then and as my home is located in deep woods with lots of logging equipment, I actually do my own welding and brazing. 

Scan the following following QR code with your smart phone and it will download a pdf copy of the latest Anti-Inflammatory Regimen CH preventative treatment protocol to your phone.  The QR Scanner app is free.  It takes less than 10 seconds to download and install.

LkufLye.jpg

Take care and please keep us posted.

V/R Batch

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Wow, just wow, thank you for all your responses CHfather, Dallas Denny, spiny, & Batch! Sometimes I get bogged down in making a decision and the unknowns for me tend to paralyze my first step forward. With all your firsthand accounts of using welding oxygen, I'm feeling very confident in taking that first step and now I have another potential way to prevent my attacks with the anti-inflammatory method. Thank you all for your support!!!

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Thanks for the additional info, Mit12. I just picked up an O2 canister for the first time today and also got myself the regulator from Airgas afterwards. I also received my ClusterO2 Kit last week, so I'm all set to give this welder's oxygen a shot. 

I am getting a bit of anxiety about using the tank now, though. After speaking with the rep at Airgas and doing some research online, I started getting worried about fires or the tank exploding. I probably put myself into a bit of a bad mental space by doing this, but now I'm curious if any of you have any best practices to ensure proper and more importantly SAFE usage of a welder's tank, regulator, and mask. I'm almost too afraid to even set it all up now. 

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A very large percentage of incidents involving oxygen (more than 90%) are related to smoking.  So don't smoke when you use it.  Oxygen isn't flammable; it's an accelerant.  So, for example, if you have used O2 and a lot has leaked out (very highly unlikely if you're using it properly, since it all goes into your lungs), if it's on your clothes or your furniture and you get a possible fire source on that clothing/furniture, it will burn faster.  If you do smoke and you want to be abundantly careful, change your clothes after using O2 or wear some kind of smock that you take off after using it, and don't smoke in the room where you use O2.  Be sure the tank's turned off after you use the O2.  Shut down the regulator, too, if you want to be double sure.  Leaked oxygen will not cause the room to explode if there's a spark -- it's just an accelerant.  If the tank becomes very hot, it can explode from the expanding gas inside, so keep it away from strong heat sources and out of direct sunlight.  You could let your local fire department know that you have an O2 tank, since it surely will explode if there's a real fire, and there are signs you can put up.  Store tanks where there is air flow.  I've read that you shouldn't use Vaseline or other petroleum-based creams and lotions on your face or upper part of your body, since they're flammable.  Make sure the tank doesn't fall over.  

If you got your regulator at Airgas, does it have the barbed adapter for connecting your mask tubing?  If not, you might be able to jam the tubing on there -- or take the regulator to a hardware store, where you can find a barbed adapter.

This video walks you through how to assemble (and use) the O2ptimask, which is what the ClusterO2 Kit used to be called. https://www.youtube.com/watch?v=eX76JrEvNxE

 

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Thanks for the reassurance, CHfather. I saw a few articles posted up at Airgas about some horrific accidents, which got me going down the worm hole of researching potential dangers of having the oxygen tank at home and came across some unsettling stories and images of burn victims and exploding tanks. I kid you not, my heart was pounding as I was sitting 10 feet away from the tank, trying to decide whether or not to set it all up or return it. I think I may have psyched myself out, so thanks for talking me down. 

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Hey scuba,

Don't worry!!! Really. We just had the O2 guy here for my father-in-law. The house now sports a concentrator, my 90 and 60 tanks, and about 20 4 hour tanks for Dad outside. He dropped off the O2 in Use signs too. Those are to post in case of ANY fire. Not a fire from the O2. Just to let rescue know that there is O2 in the house.

Their rule is no smoking within 6' of a tank or concentrator. Nothing else. I cook in the area where the whole thing is set up. With gas. Not an issue. The concern is that your clothes may get O2 saturated and when you flick your Bic, the flame will be bigger and you might mess up. That is all. Just secure any tanks so they can't fall over. A 60 welding tank does not even come with a cover for the fitting on top! Law says anything above 60 must be capped in case of accident. Mostly in transporting. You slam into another car, bust the valve off the top and now have a rocket in your truck. That is the hazard.

I keep my tank in the office now, for privacy. It used to be in the bedroom and my hubby smoked while I huffed some times.

O2 does not burn, but it feeds an existing fire. It is an accelerant. Use that puppy and smile!! :)

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My daughter, a smoker, was terrified at first of having O2.  Now, she smokes practically right next to her tank, as she's been doing for five years.  Not while using it, of course, but the rest of the time.  Not recommending that practice; just agreeing with spiny that if you don't do anything completely crazy your risk is minimal.

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This may be a bit off topic but I feel like it fits... If I have a medical tank from a relative, but no script, would a airgas or other welding supply fill it? Or no because it’s labeled medical? 

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I needed a script to get my tank from Airgas, they wouldnt let me have it without one. I'm in Canada though, rules are different everywhere. There seems to be no standardization with O2. I had to search for a doc that even knew about CH in 1996 (diagnosed on 3rd cycle), she gave me an O2 script and the guinea pigging began with the standard scripts, verapamil, Zomig, Migranol, Imitrex, etc. The side effects scared the crap out of me and I quit it all after 4 more cycles with no relief. O2 is my saviour and sillysbins have slain the beast more than once. LSD did not work for me, I got the worst headache for 4 hours and stoned off my stool....nothing worked for that one. Worst Kip10 EVER, but that was just me, many others have had great success with LSD.
Hope you get some relief soon.
:)
P.S. The D3 regimen is working for me, I haven't turned on the O2 for 2 whole days! :D That's something!!
Mike

Edited by Mike from ORK
addition

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Great to hear about the d3 working for you, I’m on day 5 so hopefully it will take its toll very soon. I’m in the states and I’m pretty sure I can just go grab the tank. I called airgas and they have the 60 cu ft for $200 filled, didn’t ask what I needed it for or anything like that, just said I could come whenever. Going to order the mask today and get the tank on Monday hopefully. Also just took my second micro dose of lsd, about 10mcg, last dose was 4 days ago, worried about work tonight though so I tried it a bit soon. The first dose I took I went 36 hrs PF, let’s hope this one kicks it out!! 

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