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Cluster Headache Help and Support >> Medications,  Treatments,  Therapies >> Demand Valve
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Message started by Lobster on Jul 28th, 2011 at 11:50am

Title: Demand Valve
Post by Lobster on Jul 28th, 2011 at 11:50am
My o2 mask is pissing me off. Time for a demand valve.
Do these hook up to my normal high-flow regulator?

Someone just put a number of them out on ebay.
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I may ask the person to put a buy-it-now price on one or two of them. 

Title: Re: Demand Valve
Post by Brew on Jul 28th, 2011 at 11:56am
The regulator you use with it has to have what is called a DISS* fitting on it. Otherwise you'd only be able to consume O2 at the rate set on the regulator.

*Stands for Diameter Index Safety System.

Title: Re: Demand Valve
Post by Jeannie on Jul 28th, 2011 at 12:12pm
I've been thinking about investing in one too.  I use M and E tanks and am not sure about getting it to fit both though. 

Title: Re: Demand Valve
Post by Lobster on Jul 28th, 2011 at 12:47pm
Thanks for the info Brew!

Jeannie... someone just put a number of used ones out on ebay.  Just sent them a message to put one on buy-it-now. 
A few of them seem to be in ratty condition, so I am checking on a nicer one.

Title: Re: Demand Valve
Post by Batch on Jul 28th, 2011 at 7:29pm
Lobster,

I tackled the problem of M and E sized oxygen cylinders two ways with the Flotec Inc. InGage™ 0-60 liter/minute regulator with DISS fitting.

The first method was to buy the InGage™ regulator configured with a CGA-870 cylinder attach fitting for the E-sized oxygen cylinders, barb fitting for the O2PTIMASK™ kit and DISS fitting for the demand valve.  Then I purchased a CGA-540 to CGA-870 adapter that I could affix to an M-size oxygen cylinder then attach the InGage regulator to the CGA-870 adapter fitting.  The adapter is shown below

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The down side of this system was I needed to take at least one E-size oxygen cylinder for every three aborts...  In a high cycle of 6 CH/24 hours that worked out to a planned two E-size cylinders/day provisioning factor for any RON (remain over night) stay with friends...

See photo below:

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You'll notice 30 hash marks on the esri sticker indicating I got 30 aborts out of that 3995 liter M-size oxygen cylinder

This gave me a "home" system with 0-60 liter/minute flow rate for use with my O2PTIMASK kit and DISS fitting for use with my demand valve (Carnét).  The same regulator could also be attached directly to the E-sized oxygen cylinders for local travel and work.

After a while I did the math and found that if I purchased my own M60 aluminum cylinder and a transfiller pigtail that allowed me to refill the M60 from the three Iron M-sized cylinders I kept on hand, I could hit the break even point in less than 6 months.  The M60 was good for 12 to 15 aborts if I caught them early so I usually had a 4 to 5 day supply with one oxygen cylinder instead of loading the trunk of the car with a bunch of E-size cylinders at $5 a pop with copay.

So I purchased another InGage™ regulator (a spare is always a good idea if you're a heavy hitter like I was), but this time with a CGA-540 cylinder attach fitting, the M60 for $160 filled plus shipping from the good folks at LifeGas, and the transfiller pigtail for $300. 

My roadie system is shown below with Aluminum M60 oxygen cylinder and InGage™ regulator:

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I used this same system to film the training video for Dr. Rozen's clinical trial of the Demand Valve method of oxygen therapy that is still accepting study particpants.  Michael Berger, Royce Fishman, and I developed the demand valve method of oxygen therapy in 2007 by modifying the original method of oxygen therapy with hyperventilation that I developed in 2005.

Both methods work equally well with very high efficacy (99% up to and including pain level 9 on the 10-point headache pain scale).  Each method has its own unique advantage.

The Flotec InGage™ regulator with 0-60 liter/minute selectable flow rates, DISS fitting for the demand valve, an knurled knob to affix to the oxygen cylinder (No 10-inch Crescent Wrench required) runs around $190 from Flotec inc, at:

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If you're interested shoot me a PM or email and I can send a sample order sheet as they can get very confusing with all the option codes.  Flotec builds these regulators to order and they'll send you a confirmation order that you'll need to sign and return to them along with a credit card num before they start fabrication.  If you want to go direct, ask for Jennifer Rogers at the order desk and tell her you've discussed your order for the InGage with Pete Batcheller.  I've been sending folks to Flotec and Jennifer for these regulators since 2008. 

That won't get you a better price or me a kick-back, but it will tell Jennifer you're a CH'er and that usually speeds up the ordering process...  It takes 10 days to two weeks for delivery and the clock starts as soon as Jennifer has your signed confirmation order in hand along with your credit card nums.  I usually sign the confirmation order then scan it to pdf and email as an attachment to Jennifer to save time.

and the CGA-540 to CGA 870 adapter is $75 from Cumulus Soaring at:

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The transfiller pigtail is also available from Cumulus Soaring for $300.

As a suggestion, I'd buy the 0-60 liter/minute InGage™ regulator with DISS fitting and CGA-540 cylinder attach fitting, the M60 aluminum oxygen cylinder and tranfiller pigtail, but hold off on the demand valve (they run $350 to $425 and the Carnét Oxygen Demand Valve has the best spec's - you can order it from LifeGas) until you've given this puppy a try for a few weeks.

A flow rate of 60 liters/minute is great and will push your system into respiratory akalosis in jig time (10 to 20 seconds), but you'll get tired and poop out after about 30 seconds...  and at that point, all that extra oxygen flow rate will just blow your shirttail out and wiffel your lips and cheeks. 

An oxygen flow rate of 40 liters/minute works just fine and is easy to sustain all the way to the abort in respiratory alkalosis.  It usually takes 3 to 4 minutes at this flow rate if you catch the CH early and an average of 7 minutes for CH between 3 and 9 on the 10-Point Headache Scale.

If you really want to save money and stand a 70% to 80% of going into a CH remission PF, you need to speak with your PCP or neurologist about giving the anti-inflammatory regimen a try.

This regimen consists of the following:

2000-3000mg. Omega 3 fish Oil
10,000 I.U. vitamin D3
500 mg. Caldium (two calcium citrate tablets formulated with 800 mg. vitamin D3, 80 mg. magnesium and 10 mg. zinc.

You can take the above all at once in the am or pm and try to wash it down with lemonade or limeade for the first week.  So far we've not had any adverse reactions save for two possible cases of allergic reaction to one or more of the ingredients.

I get all the ingredients at Costco as shown by brand in the photo below:

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This regimen works out to less than 20 cents a day and unlike verapamil, it has no side effects...  In fact, this regimen is very healthy for you as it's good for the heart, brain, bones, eyes, lungs, skin... and the list goes on...

I started this regimen last October when I developed it and went pain free the second night.  I've remained pain free ever since and I'm still taking this regimen.  I was chronic and getting hit 4 to 5 times a night when I started on this regimen... so this wasn't an end of cycle thing...  My wife takes this regimen and she doesn't have CH.  She has more energy than ever and bounces around the house and yard like a kid.

It can take as little as 48 to 72 hours to reach efficacy with a significant reduction in the frequency/severity of your CH or go into remission and up to 3 weeks to a month on the high side to get the same response.  Time to efficacy appears to be directly related to your level of 25(OH)D, the serum level metabolite of vitamin D3.  If you're deficient i.e, 50 nmol/L it can take up to a month or more to experience a favorable response.  If your  25(OH)D level is around 100 nmol/L it might take as little as 48 hours to achieve a favorable response.

If you want to know for sure, ask your PCP/neurologist to schedule you for the 25(OH)D test.  You might as well ask for a Chemistry Pannel + Complete Blood Count (CBC) so you can check your electrolytes and minerals like calcium, total cholesterol, triglycerides, LDL, HDL and total cholesterol to HDL ratio.

Take care and hope this helps.

V/R, Batch



Title: Re: Demand Valve
Post by Lobster on Jul 29th, 2011 at 2:06am
Now that is a set of -extremely- useful information Batch.  I am in your debt.

I won the demand valve on eBay today... the kind seller put it on buy-it-now for me at $40... so I should be set there in a few days.
On the regulator side I have a pair ready to try.  We will see how that goes, but I will be ready to pick up one of those suggested if I come up blanks.

Yeah... I see the D3 regimen is fairly new... going to fire that up tomorrow morning.

Also learned yesterday my T is 1/4 of normal, so going to attack that too.

Seeds and such are suddenly ineffective.  Argh. 

Tell you what... I did not miss this shit.

Title: Re: Demand Valve
Post by wimsey1 on Jul 29th, 2011 at 8:23am
Aww come on, you missed it a little? Just look at all the cool toys you get to play with again. On a serious note, I love my demand valve rig and Batch was patient and helpful every step of the way...a true officer and a gentleman. Blessings. lance

Title: Re: Demand Valve
Post by bruceg on Aug 17th, 2011 at 8:46pm
If you don't have the time to get something off of ebay (and some of that stuff looks a bit dubious in quality) AND (as noted here) also acquire a DISS valved regulator, here's what you can do.

Go to Home Depot type store and get the following parts:

Air Gun Nozzle (the things you put on air tanks to just spew air). Better yet, just the 'trigger handle' for an air gun nozzle.

Then, wander over to the fittings section and grab:
one, plastic 1/4 inch tube to 3/4 inch female screw fitting
one, plastic 1/4 inch tube to 3/4 inch male screw fitting
one small hose clamp (about 1/2 inch opening)

Screw the plastic fittings into the air gun nozzle (you might need to remove the actual nozzle from the trigger handle...I'm just using one I had lying around the shop)

Cut a standard mask hose in half, insert the ends into the trigger handle, use the hose clamp on the slip over fitting of your regulator and Viola! On demand whenever you press the trigger.



Title: Re: Demand Valve
Post by Guiseppi on Aug 17th, 2011 at 10:18pm
Another McGiver!!!! Great post Bruce, I like the ingenuity.

Joe

Title: Re: Demand Valve
Post by Lobster on Aug 18th, 2011 at 8:28am
As a followup...
I did pick up one demand valve from eBay ($40 shipped).  Liked it enough that I ordered two more from the same person.  These were a bit cheaper ($30) as they could use new exhalation valve assemblies ($18... just unscrew the front & drop in).

So... for about $140 I have three working demand valves.  Each included a 6ft DISS hose, which alone goes for $50+ each.    


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