Is there any studies/papers that clearly explain that the proper minimum flow should be 12-15 up to 25LM??  My husbands script only reads 7LM by mask...

Thanks
Desiree

You'll have to do some digging around in here, but I think you'll be able to find something:

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I didn't mean on this site but actual documentation of studies etc...if Doc doesn't believe he needs more then 7lm and the home health care company wont send a higher regulator, and everyone has warned about ordering from strange companies/ebay .....I AM PLAIN FRUSTRATED >>>this shouldn't be so damn difficult@!

Then get welding O2 (it's the same stuff) and buy a regulator on e-bay. Why make it more difficult than you have to?

Here is one Doctors paper on high flow O2. It is a little dated but useful. Please understand we have a rare condition and few Doctors know about the modern use of O2 for CH.

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Desiree,

You may find this helpful. Please note the O2 flow rate varies from person to person. Some say 7lpm works fine and some of us need higher. There's nothing wrong with trying the 7lpm.

A NON-REBREATHER mask (with a bag) is very important no matter what flow.
At the top of this page is a post "Initial survey results", read the O2 specific link at the bottom, it is Dr. generated.

Get the O2 first no matter what flow. Even though the Rx reads 7lpm you may want to see if that works at all first. Educate yourself from this site and you will get where your hubby needs to be.

Good luck, Don

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Thank you OUCH.  Those guys do good work!

I went in and told my doc about O2 info and higher flow rates and I don't care how much info I gave him (verbal or printed reports) most MD's are not comfortable giving script for O2 much less above 8 lmp. Just get the script and buy a regulator on ebay.   

I bought a new in box 25 lpm reg. on ebay for 33.00 total including shipping. The one I bought was for the E tanks and I looked up info on the company and there were no problems. I went to the local O2 supply place and even told them I was putting a 25 lpm regulator on the tanks and I had all the companies employies around while I told them about cluster headaches and why I needed 5 tanks. The one lady that did insurance even said she would look up how to code out the 02 on insurance for cluster headaches. I pay 10$ a tank to rent. I would probably not mention to the 02 company that you are going to use a different regulator on their tanks like I did. :) 

It was a night and day difference between 8 lpm and 25 lpm or even 15 lpm. Most important is to get the non-rebreather mask (to the left of the screen). I can't thank people enough on this site for all their help. Also getting the welding 02 rig is always an option, you will need a different regulator for the bigger tanks I am told.  Good luck.   Jay

dm1girl wrote on Nov 30^th, 2009 at 10:13pm:

Is there any studies/papers that clearly explain that the proper minimum flow should be 12-15 up to 25LM??  My husbands script only reads 7LM by mask... Thanks Desiree

If you get a welders set up, no script is needed... I am a welder, in gas welding for steel and brazing in brass.

I also work in silver and have another set of tanks for silver soldering in jewelers quailty silver solders.

Pretty much I don't see doctors for anything, not unless i am going to die.

So to make a long story short, at the onset before things go south, I get to one set of torches or the other and remove the tips, turn on the O², set the O² regulator to about 10 psi, and sit down a while to breath.

I tend to inhale deeply and hold my breath for 10 seconds. Then release that breath.

No masks, no frills, no doctors and no scripts.

How I know when I am done is easy. There is no more pain.

At that point I remain breathing from the torch handle a few minutes more .... all done, all gone..

Once the attack is underway there is nearly nothing to stop it for me. I have trex injectors but found when I used them it just stopped that HA, and it extends the weeks ..

It takes a k10 and some more to get be that broken, to use trex..

I can't see any way you can OD on O². I suppose it is possible, but one would have to work at it.

What's in the tank is the very same stuff. I get my refills and see med bottles getting filled on the very same equipment... Nothing is more or less refined... Med bottles are a little prettier, as if that matters...

A mask might help, but it really isn't my style. I don't like feeling as if i am sick, or different in the first place.

I see the whole thing as some godforsaken challange in life, me against a demon.. It messes with me, and I mess right back with it.

Around here, sometimes that idea doesn't fly so well. Someone gets angery or upitty with me and I get so po'ed I leave for a while. Then I get hits and become curious to see who is still here, and who isn't.

A CH is pain, just pain, we all deal with pain in our own way. My way is getting back at the demon.

That works like if I will get hits in the night, I won't sleep in the night, and will find naps in the day, and deprive the beast of getting me. If it hits me in day time, the beast is doomed to O².

Ok, so I am a tad nutty... Maybe read some of this and think of the beast as something you can know and defeat.. The Art of War.. it is war after all isn't it?

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I got my boots on feel free to flame away.... ;D

Good post, Mac_Muz.

I will add that when they fill medical O2 tanks, they pull a vacuum before refilling. Welding tanks get refilled (supposed to do a sniff test for acetylene) as is.

Marc
Also a welding O2 user

Yeah my tanks are set up to weld, but I purge the acetylene. The cutting head/ welding head is off, and so is the acetylene..

No one could mistake that. The whole set up would be less than 1 doctor visit.

The day I catch the beat I plan to weld him on something heavy anyway.

Nothing says you have to get any acetylene... unless welding is another thing a CH'er does..

A non welder going this way would have to buy the set of regulators, but not have to get any acetylene.

I'm a non welder and I found out that welding tank CGA-540 fittings are also used on larger medical tanks  ;)

Small medical tanks use CGA-870 fittings but I have adapters so I can fill small medical tanks from my welding T tanks.

Cheap welding O2 regulators also serve well for this purpose - don't need the set.

When there is a will, there is ..................

Marc

I don't know about that Marc. When I had my first clusters i thought it was bad teeth, even though I couldn't see anything really wrong, so had teeth pulled.

I was already a welder car tech fix it guy so when I came here ............ finally, I had what I needed.

Not only that but in the past welding I get head aches from welding. That was with arc welders and a old school trick back then was to get O² from the gas equipment anyway...

The point being no one needs any doctor or script to get O² if they don't want to see doctors.

I don't like to go to doctors... Just don't like it. I never liked handing controll over to someone I don't know well.

I take it to the extream that if I go I must be on deaths door. I have fixed many broken bones myself and it seems to work out for me. I hate when I get phneumonia and have to do that song and dance as i was born with it and have forgotten more about that than most doctors I meet.

The ordeal to get a script then is almost more than I can bear. When I do that I usually pull some stunt to get more meds than I need, like another supply for 10 days, and save it for next time so I see a doctor maybe once in 5 maybe 6 years.

Are welding tanks like SCUBA tanks, where the max pressure and last hydro date are stamped on the tank?  Just wondering if care should be taken not to refill say a #1500 from a #3000 big tank?

Bob P wrote on Dec 2^nd, 2009 at 7:40am:

Are welding tanks like SCUBA tanks, where the max pressure and last hydro date are stamped on the tank?  Just wondering if care should be taken not to refill say a #1500 from a #3000 big tank?

Yep. It's good to bring that up because it may not be obvious to some people!

My small medical O2 tanks are rated at 2200 psi and a full welding tank comes in at about 2600 psi.

Being conservative, I fill my small tanks to 2000 psi even though they are still well within date range.

Aluminum medical tanks are relatively inexpensive, so it's a good idea to just replace them early if you are filling your own.

Additionally, ANYONE using O2 tanks whether you are filling them or not, should be aware of the "clean and dry" rules. Even a few drops of oil on the high pressure side of the regulator will become dangerous.

Marc

""""Even a few drops of oil on the high pressure side of the regulator will become dangerous"""" true.

Oil then becomes fuel in the presence of more or less pure O²

And yes even steel industrial tanks are dated, and pressure tested. Smaller sizes can be purchased directly, whole larger sizes tend to be leased only.

Owning smaller tanks tends to be a "Right" of ownership. In this way you may cycle sets of tanks, and never see the same tank ever again as what ever the first one was by serial numbers. An exchange, so painiting a design of daiseys say, would be pointless. When that bottle is empty you turn it in for another and pay for the contents only.

I own a set of smaller bottles and lease the larger set.

Either way, living as rural as I do I don't get my tanks re-filled I trade them in for full tanks/bottles.

Aluminum alloy would be better to cart around.. I don't drag my bottles anywhere much.

This is a cheaper way out, from going to see some doctor, and getting a scropt and then worrying about insurance.

I can't tell you about that, because I avoid that at all costs..

The reason I bring it up, is because i read about ER services and see the ER service fails. The ER makes a big deal over a little O². People sit around in a place where there is what they need and are denide, and for no good reason.

For a CH there is no needs to delay treatments, and wait for a doctor. Just that wait guarantees you are going to get a real CH.

On the other hand as I see it going to a ER before you have a CH isn't likely.. and O² treatment isn't probably going to work very well even if it is given.

My personal finding is O² works best when you get the warning shadow, and not so well once the CH comes on strong.. By that time it is time to waltz...  ;)

Desiree,

The short answer is "yes."  There is such a study, but the results have not been published...  We conducted an informal pilot study of oxygen flow rates that gave us a very clear indication that flow rates ≥ 25 liters/minute were clearly superior in terms of efficacy (success rate) and a significantly lower time required to abort CH attacks than a flow rate of 15 liters/minute. 

There were no adverse reactions or complaints so with respect to this informal pilot study and method of oxygen therapy also appears to be safe. 

I'll also add what I've said many times in the past here on CH.com...  I've over 3000 hours flying Navy fighters on and off aircraft carriers and all of that flight time was spent breathing 100% oxygen at flow rates well over 25 liters/minute on flights lasting over 2 hours...  I'm still here in good health at age 65.  I passed all my annual flight physicals... 

What is even more compelling is that Navy and Marine Corps pilots flying tactical fighter and attack aircraft have been breathing 100% oxygen for over 60 years...  And they still do it today...  That's kind of like the single largest ongoing study on breathing 100% oxygen in history...

The data from this study also infers a flow rate of 15 liters/minute will be superior to flow rates of 7-9 liters/minute in terms of abort times.

Having said this, the fact that this pilot study was run by cluster headache sufferers and not doctors or medical researchers in a formally sanctioned study, means it carries little weight with most doctors or neurologists...

The results of our informal pilot study did resonate with one of the Nations top neurologists specializing cluster headaches.  He’s followed this study since it’s inception and he will be starting a formal pilot study on this method of oxygen therapy in February. 

It's taken us over two years but we've finally rounded up the funding for this study and the protocol will be identical to the informal pilot study. 

We also agreed not to publish or post the full results of the informal pilot study until after the formal pilot study results are published.  We're very confident data from the formal study will mirror the following results from our informal pilot study below.  What I can say follows:

The efficacy (success rate) at flow rates ≥25 liters/minute using a demand valve or O2PTIMASK™ with 3-liter reservoir bag was 99% (the two methods have the same results but the demand valve is clearly easier to use) with a raw average abort time of 7 minutes for 366 attacks where the CH pain reached a maximum during the therapy between Kip-3 and Kip-9. 

The raw average abort time was 9 minutes for CH attacks between Kip-6 and Kip-9 for 158 attacks when using flow rates ≥25 liters/minute.

The raw average abort time was 31.5 minutes for a flow rate of 15 liters/minute for attacks between Kip-6 and Kip-9 using a disposable NRB mask with 1-liter reservoir bag.

That makes aborts at flow rates ≥ 25 liters/minute better than 3 times shorter than aborts at a flow rate of 15 liters/minute.

In case you’re wondering, the average abort time was 6 minutes at flow rates ≥ 25 liters/minute for attacks between Kip-3 and Kip-5 for 208 attacks.

I might add that folks experienced in the use of this method of oxygen therapy routinely abort their attacks between 2 and 4 minutes...  They start early, finish faster, and use it on all attacks no matter how minor...

The simple explanation for the success of this method of oxygen therapy is based on the fact that flow rate ≥25 liters/minute will support hyperventilation where a flow rate of 15 liters/minute will not.  Under certain conditions, flow rates at or below 12-15 liters/minute can actually make some attacks last longer and cause greater pain. 

I've a much longer post that I'll put up tonight that gives the physiology behind this method of oxygen therapy and why it is superior.

If you need a prescription for a higher oxygen flow rate, I put up a post here on CH.com last May titled “Obtaining A Prescription For Oxygen Therapy” at the following link:

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I’ve had several folks use this post successfully and so far, there are no complaints.

Take care,

V/R, Batch

red ryder wrote on Dec 1^st, 2009 at 10:53am:

I went in and told my doc about O2 info and higher flow rates and I don't care how much info I gave him (verbal or printed reports) most MD's are not comfortable giving script for O2 much less above 8 lmp. Just get the script and buy a regulator on ebay.

I meant to ask before, but why is this? Why won't doctors like to give out script for O2 ?

Makes no sence to me...

Old school thinking without real justification.

One of my daughters is a nurse and she has seen me in the grips of the beast in the past. When I told her that I suck O2 at 45-60 lpm for 3-6 minutes and my life is wonderful, her response was: "Do you have any idea of how bad that is?"

My response was: "No, explain it to me"

After stammering a bit and then thinking about it, she couldn't explain what the problem would be. She just remembered the "proper" flow rates for pediatric, CPOD and general patients.

In reality, excess O2 at 100% concentration DOES cause problems over LONG PERIODS of time. But, everything that I have been able to dig up talks about problems after 18-24 hours.....not 3-6 minutes like I use.

Again, I cannot find a single reason for denying otherwise healthy people O2 at high flow rate - except a lack of knowledge........

Marc

A press release from Dr. Peter Goadsby:


Quote:

Treating Cluster Headaches With High-Flow Oxygen Appears Effective CHICAGO – Patients with a cluster headache, which is characterized by bouts of excruciating pain usually near the eye or temple, were more likely to report being pain-free within 15 minutes of treatment with high-flow oxygen than patients who received a placebo treatment, according to a study in the December 9 issue of JAMA. Cluster headache attacks typically last for 15 minutes to 3 hours untreated and have a frequency of 1 every other day for up to 8 attacks a day. Attacks usually occur in bouts, or clusters, lasting for weeks or months, separated by remissions lasting months or years, according to background information in the article. The current treatment for acute attacks of cluster headache is injection with the drug sumatriptan, but frequent dosing is not recommended because of adverse effects. Another treatment option is the inhalation of high-dose, high-flow oxygen, but its use may be limited because of the lack of a good quality controlled trial. Anna S. Cohen, Ph.D., M.R.C.P., of the National Hospital for Neurology and Neurosurgery, London, and colleagues conducted a randomized, placebo-controlled trial of high-flow oxygen for the treatment of acute attacks of cluster headache. The study included 109 adults (ages 18-70 years). Patients treated four cluster headache episodes alternately with high-flow oxygen (inhaled oxygen at 100 percent, 12 L/min, delivered by face mask, for 15 minutes at the start of an attack) or placebo (high-flow air). Patients were recruited and followed up between 2002 and 2007. The final analysis included 57 patients with episodic cluster headache and 19 with chronic cluster headache. The researchers found that 78 percent of the patients who received oxygen reported being pain-free or to have adequate relief within 15 minutes of treatment, compared to 20 percent of patients who received air. For other outcomes, such as being pain-free at 30 minutes or a reduction in pain up to 60 minutes, treatment with oxygen was superior to air. There were no serious adverse events related to the treatments. “To our knowledge, this is the first adequately powered trial of high-flow oxygen compared with placebo, and it confirms clinical experience and current guidelines that inhaled oxygen can be used as an acute attack therapy for episodic and chronic cluster headache,” the authors write. “This work paves the way for further studies to optimize the administration of oxygen and its more widespread use as an acute attack treatment in cluster headache, offering an evidence-based alternative to those who cannot take triptan agents.”

See that's what I think Marc, that there is no reason.. 'We' tend to use 02 for a short time, and then we are done with it.

The only real caution I can think of is fire...

Being who and what I am, I saw a physicians assistant, once, one who could not write script for narcotics.. At the time I thought I had a sinus infection from hell.

She asked what color the fluid was exiting my nose, and if it was unilateral or not. She asked about eye tearing and if the pain was local to one side on my head, and other question as stated in the side bar..

She determined from a few questions, I have CH, and I do. That was years ago and I haven't seen a doc since for this, and just once for phneumoina, but I didn't need a doc to tell me that either. I knew what it was and I just needed a script.

O2 is so effective for me, that I really don't want other things, and surely not drugs.. Kudsu seems to hold some promise if I could get any.. and maybe these seed treatments, so long as there is no buzz and after effects. I can deal wuth tired i guess.

But to with hold o2 from someone seems criminal.. More so when a welding set up can be had for the want..