Hello,
My 16 yo son desperately needs O2 therapy using the compressed O2.  The doctor has written the script.  I've purchased all of the other necessary items.   

The doctor is not near where we live so she has had me look into different companies to supply the compressed O2.   

What companies actually fill these scripts?  Apria was going to but they backed down and won't return my calls anymore.   All the other medical grade O2 places say it's illegal, or against their licenses, or they can't make enough money on it. 

I'm really nice to these people and explain how desperately ill my son is... He's been debilitated (out of school) for 14 months. 

Do you guys have any tips?  Is getting it from a welding supply store safe? 

I've been trying to do this for two months! 

Thanks!!

Mystic

Hi Mystic and welcome

Since you mentioned Apria I assume that you're in the US somewhere. If you let us know which state then there is likely to be someone with experience in that area who can direct you to a supplier.

There are people here who use welding oxygen for their CHs with good results.

What is your son using for his CHs? Does he have any preventives, something like verapamil or lithium that he uses to cut down the number of CHs he gets? Does he have anything to kill off a CH when one arrives?

A lot of us have been having great success with vitamin D3. Over 80% of people who have tried it, including myself, have gone pain free. Read about it at START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.

Keep reading as much as you can and you'll learn a lot, ask all the questions you can think of.

Mike,

Yes, we're from the US.  We live in southern Maine, right next to New Hampshire and a short drive to Massachusetts.  We are an hour drive from Boston, Massachusetts. 

I can't believe nobody will fill this O2 script.  Does anybody else have this problem?  I wonder if it's because he's a kid. 

He does have very low D3 and takes 50,000IU of vit D3 a week and he also takes high doses of fish oil (EPA and DHA) for inflammation.  And magnesium and zinc too. 

Also, like your link suggests, we are trying to get him a bit more alkaline by drinking apple cider vinegar and lemon water, and minimizing sugars. 

Our doc says to go to a welding supply store... but won't say non-medical grade O2 is OK.  My son just needs help. 

I've read somewhere that they fill the medical grade tanks with the same source O2 as the non medical grade tanks and it's only the tanks that are different.  If that's true, there should be no way for contamination to enter the tanks because they are under positive pressure and theoretically no contaminated air could enter a tank. 

Anyhow... anybody have a contact in our area that may fill an O2 script?   


Thanks!

Mystic

I have possibly stumbled on to cure for this infamous cluster headaches. I recently stopped using tap water in any capacity unless it's boiled, really boiled, first. I have cut out bread, including crackers of all kind and soft taco shells. I have had cluster headaches alittle under 10 years.  This new eating and drinking regiment has had virtually pain free for close to 30 days. I really would like any replies, if this seemingly cure has worked for anyone else.  It would make my decade if I can help anyone with these dreaded headaches. Please have a weekend.  :)

dshot wrote on Jun 28^th, 2013 at 6:36pm:

I have possibly stumbled on to cure for this infamous cluster headaches. I recently stopped using tap water in any capacity unless it's boiled, really boiled, first. I have cut out bread, including crackers of all kind and soft taco shells. I have had cluster headaches alittle under 10 years.  This new eating and drinking regiment has had virtually pain free for close to 30 days. I really would like any replies, if this seemingly cure has worked for anyone else.  It would make my decade if I can help anyone with these dreaded headaches. Please have a weekend.  :)

  We're all ears.  Start your own thread please.  We just love cures.

                      Potter

dshot wrote on Jun 28^th, 2013 at 6:36pm:

I have possibly stumbled on to cure for this infamous cluster headaches. I recently stopped using tap water in any capacity unless it's boiled, really boiled, first. I have cut out bread, including crackers of all kind and soft taco shells. I have had cluster headaches alittle under 10 years.  This new eating and drinking regiment has had virtually pain free for close to 30 days. I really would like any replies, if this seemingly cure has worked for anyone else.  It would make my decade if I can help anyone with these dreaded headaches. Please have a weekend.  :)

If it was that easy, this website would never have even started.

Glad you've been pain free for the past 30 days, though.

Hi Mystic,
Get welding o2, works just the same, make sure you get a large tank, a high flow regulator that fits the large tank offering at least 25 lpm or easiest to get a welders regulator from your welders supply store or a place called Harbor Freight Tools, and lastly make sure you get a NON-rebreather mask to properly abort attacks via hyperventilation.

The welders tanks and regulators can be purchased same day without a script, just don't tell the welders supply store that it's for breathing.  If they ask why you are getting a tank, say it's for my brother doing a welding project. 

The NON-rebreather mask can be purchased online from the CH Store, see the yellow tab-left side of your computer screen.  Very fast delivery and if ordered this weekend, you should have it early next week.

As for the o2 script, where does your doc recommend you get it filled?  I would imagine Apria or some local medical oxygen provider should be able to fill the script and deliver a tank. Most likely they will not bring a high flow regulator so you will still need that, see 1st paragrpah above for my recommendation.  And most likely they will not give you a NON-rebreather mask, see above.

Google or look in your local yellow pages and call around to see if they will fill your o2 script.  Just make sure you get a tank, not a concentrator, and get a big tank as o2 goes fast.  But again the welders o2 will be the fastest answer to your prayers, without the hassle of a script.

Good luck ;)

-Gregg in Las Vegas

Quote:

Please have a weekend

Thank you sir. May I have another?

Hi!  I don't know where you live.  However, I get my medical grade O2 from American HomeCare Specialists:  323 New Boston St Woburn
(781) 935-2241.  They take my insurance and if the prescription is not writen properly, they will have your doctor fill out one of their forms.  They are great and know about using O2 for clusters.  They will set you up and show you how to use the canisters.  And, they deliver.

Sorry to hear about your troubles getting Oxygen.  I am in Massachusetts and have had it prescribed by my general Doc.  Apria gave me filled tanks that Health New England (insurance company that usually will fight just about everything) paid for with no problem.  Too bad for me the Oxygen didn't work (for all the folks that will tell me I'm probably doing it wrong--I've hyperventilated on 60 LPM for 20 minutes straight until I felt like I was going to die.  Just doesn't work for me.)

The thing I'm not understanding is that usually the hard part is getting the prescription.  What is the reason that these people say they will not fill the script?   Even if it is for a kid, it's oxygen and a doctor prescribed it.  Is this a situation arising because you have an out of state doc prescribing things?  If Apria is really just not returning your calls I will gladly call them (repeatedly) for you and tell them what the fug is up.

My take on welding O2--maybe, just maybe there is enough of a difference in tank cleaning or some other strangeness that would make huffing off of it for 50 years a bad thing (maybe) but I think the pain and damage that a cluster does would be far worse than any possible slight toxicity that your son could get from welding O2.  (and will never get because he most likely won't have to deal with the shmucks that you have been for very long.)  I would go for the welders O2 and not worry about it.  I would be very surprised if you did not find an avenue for medical O2 very soon.

But to me, the most important thing is having a serious Neuro understands what you are going through and will fight like hell for what you need.  With you being an hour from Boston, I would highly recommend my Neuro--Dr. Brian McGeeney.  He has changed my life.  To me, he seems to be THE cluster doc.  I would not go to Goadsby or any other doc if I had the chance.  McGeeney knows his stuff, but most importantly, he admits when he doesn't and then goes and learns about it.  This, to me, is the rarest thing I have ever found in a Neuro.  He listens to his patients and from the research that I have seen him compile I truly think he is the one who is pushing all the right research in all the right directions.   I highly encourage you to contact him.  I would be very surprised if he could not get this figured out for you.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

-Ricardo

Ricardo wrote on Jun 29^th, 2013 at 9:31am:

Sorry to hear about your troubles getting Oxygen.  I am in Massachusetts and have had it prescribed by my general Doc.  Apria gave me filled tanks that Health New England (insurance company that usually will fight just about everything) paid for with no problem.  Too bad for me the Oxygen didn't work (for all the folks that will tell me I'm probably doing it wrong--I've hyperventilated on 60 LPM for 20 minutes straight until I felt like I was going to die.  Just doesn't work for me.) The thing I'm not understanding is that usually the hard part is getting the prescription.  What is the reason that these people say they will not fill the script?   Even if it is for a kid, it's oxygen and a doctor prescribed it.  Is this a situation arising because you have an out of state doc prescribing things?  If Apria is really just not returning your calls I will gladly call them (repeatedly) for you and tell them what the fug is up. My take on welding O2--maybe, just maybe there is enough of a difference in tank cleaning or some other strangeness that would make huffing off of it for 50 years a bad thing (maybe) but I think the pain and damage that a cluster does would be far worse than any possible slight toxicity that your son could get from welding O2.  (and will never get because he most likely won't have to deal with the shmucks that you have been for very long.)  I would go for the welders O2 and not worry about it.  I would be very surprised if you did not find an avenue for medical O2 very soon. But to me, the most important thing is having a serious Neuro understands what you are going through and will fight like hell for what you need.  With you being an hour from Boston, I would highly recommend my Neuro--Dr. Brian McGeeney.  He has changed my life.  To me, he seems to be THE cluster doc.  I would not go to Goadsby or any other doc if I had the chance.  McGeeney knows his stuff, but most importantly, he admits when he doesn't and then goes and learns about it.  This, to me, is the rarest thing I have ever found in a Neuro.  He listens to his patients and from the research that I have seen him compile I truly think he is the one who is pushing all the right research in all the right directions.   I highly encourage you to contact him.  I would be very surprised if he could not get this figured out for you. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE -Ricardo

   Great post.

            Potter

Also, you can buy a brand new welding tank and have it refilled. Then you know where it's been.

Medical grade: Shiny package and they can charge lots and lots for it.

Charlie

wrote on Jul 29^th, 2013 at 7:38pm:

pay no mind to potter op, he has a serious drug addiction

What's your special problem?

wrote on Jul 29^th, 2013 at 7:38pm:

pay no mind to potter op, he has a serious drug addiction

Your very 1st post with no intro and you have a grudge against somebody?

I call TROLL! :o

-Gregg in Las Vegas

Quote:

pay no mind to potter op, he has a serious drug addiction

AND he never shares. Bastard.

It's just zacsz under yet another screen name du jour.

are you calling hospital supplies ? pharmacy's wont fill. You could call your local hospital and let them know of the difficulty that you  are having. They might give you the number of their supplier. just a thought.

Apologies for resurrecting a dead thread, but I just went through something very similar to what Mystic went through in 2014.  Figured I'd share...

Me:  episodic, wintertime, cycle every two years.

In 2011, I finally got an Rx for high-flow O2 from my Doc.  I was living in Normal, IL at this point.  Called the two big providers there - Apria and Lincare.  Neither would give me a tank of O2.  Both would only provide "a concentrator machine and a nose canula for sleeping".   And even to get that, I would have to submit to an insurance review, which might take 2+ weeks to clear.  I was in an awful, heavy cycle at that point and didn't want to wait for some pencil pusher to decide whether or not I would get my Rx filled.  I politely declined and drove over to Rockford Industrial Welding Supply and got myself a tank for $15.  Bought a CGA 540 regulator and non-rebreather mask on the internet and was up and running within 2 days. 

Fast forward to this year.  I just took a new job in a new city and had left my welding tank at my home in Normal where I still spend weekends.  I decided to try to obtain a tank of medical O2 to keep in my apartment where I spend the workweek.  All I wanted was one single big tank that I could keep in my closet. 

First things first: Got my Rx renewed by my doc back in Normal.  No sweat.   

There are five O2 providers in my city:  Lincare, Apria, First Choice, Kelly's & OSF.  Here is what each of them told me over the course of a four day period:

Lincare:  "Our company's policy is that all Cluster headache patients get an oxygen concentrator.  We will not provide cylinders to cluster headache patients."

Apria: "We don't have anything larger than an "E" tank for you."

First Choice:  "We don't have anything larger than an "E" tank and we don't take your insurance."

Kelly's:  "We take your insurance, but don't have anything larger than an E tank for you, and oh, by the way - the only regulator we carry that fits the E tank goes up to a maximum of 2 lpm.  Also, your doctor doesn't know what he's doing in prescribing you oxygen.  I (receptionist) get cluster headaches sometimes and I've never heard of anyone using oxygen at those flow rates.  You could damage your lungs breathing oxygen at that flow rate... blah blah blah"

OSF:  "The largest tank we can get you is an E.  We do have regulators that go up to 15 lpm.  But we can't help you because we're not taking on any new patients at this time.  If your doctor was part of the OSF hospital network, we'd serve you, but since he's not there is nothing we can do for you."

Yeah - so in four days I got absolutely nowhere with five different providers.  It was definitely a test of my patience and restraint.  ...Particularly for me to not forcibly insert the 2lpm regulator into the urethral cavity of the reception guy from Kelly's who had the audacity to question my doctor. 

So long story short, I had to go to the next city over to find a provider that would a) give me a big tank of O2 and b) take my insurance. 

Big thumbs up to Family Medical Supply in Peoria.  They hooked me up with an "H" tank, which weighs about 150 pounds and ought to last me through the end of this current cycle. 

-Ken

There has to be a way to file charges of some sort against them for refusing to fill a legal doctor's order.  Sounds to me like practicing medicine without a license.  Check with your doctor and see if you can find what to do.  Up here in Aurora it is no problem to get O2 for CH.  They may not take your insurance, or if you have a script for higher than they have a regulator they may refuse service, but that is not your condition.  That sort of thing makes me mad.  I'm the type who would go back in there and record their stupidity just so I could file a lawsuit, (or threaten one), and I hate lawyers and anything to do with lawsuits.  The only reason would be to force another part of the medical establishment that cares nothing about the patient but only about the mighty dollar bill.

Jerry