Hi all,
I was reading up about demand valves on this website and I had few questions:
1) My husband (who has CH) generally finds relief with a regular 15lpm flow in 15-20 minutes. A couple of hours later the headaches are back. Is it worth it to buy the demand valve?
2) Best way to have insurance companies reimburse us. Anyone had any success?
3) We have an H tank at home with a regulator that goes upto 15lpm. Do I need to buy a different regulator that would go with the demand valve or is this one sufficient?
4) Best place to purchase them? LifeGas? Or Ebay? Any other websites?

Any advice is greatly appreciated! Thanks!

Avni

I've always used a demand valve, my abort times are generally less then 10 minutes with a mean of 6-8 minutes. The demand valve will probably NOT reduce the come back attacks as that's a regular occurence for me too. I used to take an oral cafergot when I started the oxygen to help witht he come backers. 02 would kill it, cafergot would buy me up to 12 hours pain free time. At the suggestion of several on this board, I replaced the cafergot with Red Bull and have found similar results, whether or not he goes to a demand valve it might be worth a try to lower the come backers..

The demand valve seems to result in shorter aborts for most who use it. It saves me a lot of 02 because I am a breathe deep and hold breather, up to a full minute each breath so without the 02 whistling out I find i can baort with about 300 pounds out of a little bitty E tank.

I use an E tank and the fitting is the same for the demand as for the couple of regular flow valves I keep on hand for emergencies, but I do not know about an H tank.

If insurance will cover it, I'd go for it. Lifegas is who I would go through, first off they're fantastic people who have put a lot of work into accomadating us. At the convention this weekend, they were showing off the new demand set up they had, around $300 but damn, it was sweet. When my 20 plus year old finally craps out that's the one I'll grab.

Thanks for supporting your hubby. We're a bit fond of our supporters around here, you rock.

Joe

Thanks Joe! We will talk to Life Gas and our insurance company.

Avni

Hey  Guiseppi:

Was that $300 for the full setup or did you still need a reg?

Is there a link to that setup somewhere? would love to see it.

Peace,

Boski

Hey Avni,

Good questions about demand valves and Joe gave you some great answers.  15 to 20 minute abort times are too long in my book, but abort times depend on the pain level when you use flow rates that support hyperventilation.  The lower the pain level during this method of oxygen therapy, the shorter the abort time. 

The big foot tapping hint here is START EARLY...  don't wait for the pain to build before starting oxygen therapy... Start it as soon as you sense an attack is about to start or as soon as possible after one starts.

When using oxygen flow rates that support hyperventilation either with a high flow rate constant flow regulator or a demand valve, the minimum effective flow rate required to support hyperventilation is 25 liters/minute.

At these flow rates, the average time to abort should be 7 minutes for an aggregate of attacks between pain level 3 and pain level 9 on the 10-Point headache pain scale.

Demand valves here in the US require a DISS fitting on the cylinder attached regulator.  The following photo illustrates a 0-60 liter/minute regulator from Flotec with a DISS fitting.

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Regarding the increase in the frequency of cluster headaches after starting oxygen therapy for the first time...  Nearly all of us go through this... 

The data we've collected on 366 abort with these higher flow rates indicate this increased frequency of cluster headaches starts dropping around week 3 to 4 if used on every attack no matter how minor.  Moreover, by week 6 to 8, the frequency of cluster headaches drops below the rate experienced prior to starting oxygen inhalation therapy...  These results were consistent no matter if the user had an O2PTIMASK™ or Demand Valve when using flow rates that support hyperventilation.

As Joe pointed out, there are some very real advantages to using a demand valve.  Ease of use and limiting oxygen waste are the two biggies...  Having said that, either method can produce the same rapid aborts with an equally high level of efficacy.

Take care,

V/R, Batch

Batch, about time you stepped it up! thought you were on vacation. A lot of newbies aound this week that need your advice. Check the other posts...And by the way I have 5 kits ready to mail on demand. They are only 15 lpm but will get people started with med regulator and an Op2timask while they work on getting higher flow. Just let me know...Jay

Might also be worth calling lifegas first to ask the prices that they'd charge YOUR insurance company before you try to do this. They were collecting insurance co and co-pay data at the convention and seemed genuinely intersted in helping in that regard.

My experience with a demand valve has been the same as Batch describes. What a relief! And I never ignore shadows ever again. Abort the shdadows and keep the Kips down. Blessings! lance

Hey Jay,

Good on you!  Having five oxygen therapy kits at the ready for needy CH'ers is fantastic.  That's the kind of outreach that means the most to folks confronting the beast for the first time or the old hands who have been sidetracked with pharmaceutical treatments that didn't include a proper prescription for oxygen therapy.

I was attending meetings with one of the top neurologists specializing in our disorder and the head of the Clinical Studies Center at the University Hospital of Hamburg-Eppendorf, Germany last week and didn't return home until late Monday afternoon.

I spent a lot of time flying and riding trains without access to the Internet so was unable to comment on many of the oxygen therapy related posts here on CH.com. 

The good news is he is one of a growing group of neurologists who are starting to realize the benefits of oxygen therapy with the demand valve or constant flow regulators at flow rates that support hyperventilation as the first abortive of choice for the cluster headache. 

Lots of work to do before we can make this an international standard of care in the treatment of the acute cluster headache, but the road map to reaching that goal is clear.  It includes published results of gold standard clinical studies, so in the end, it all comes down to a function of time, scheduling, and funding to make it happen.

It wasn't all work and I did get the opportunity to spend a couple days with Michael Berger in Wildhaus, Switzerland over the weekend before the flight back from Zürich.  Michael coordinated the meetings at the University of Hamburg. 

The panorama view of the alpine meadow below Wildhaus from Michael's home at 3600 feet elevation was so peaceful...  The only sound was the wind and a few cow bells more than a half mile away.

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Michael also gave a wonderful tour of the area near Wildhaus with an auto-train drive up to the St. Moritz area and through the Julier Pass at 7500 feet, a drive by Heidi Land about which the book Heidi was written, and a run through Lichtenstein to the Schattenberg Castle in nearby Feldkirch, Austria.

Not much of a view riding the auto-train in the tunnel up to the train station near St. Moritz, I slept most of the way...  but once we were there, the view of St. Moritz, the lake and the surrounding area was spectacular...

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Lots of switch-backs, tunnels, and snow sheds on the drive back down from Julier Pass...  I can't imagine what it must be like in winter driving down in chains through 15 foot snow banks...

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The view of Feldkirch from the Schattenberg Castle was great and walking the narrow cobblestone streets of old town Feldkirch was a real treat.

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Now the followup work begins...  Two papers to write and lots of coordination...

Take care,

V/R, Batch

You guys rock! Thank you everyone for your responses. Our oxygen provider only supplies regulators that go up to 15lpm. Can I buy a regulator with a higher flow rate and just replace it? It doesn't look very easy to replace....
Thanks again! It is great to have a group of people who I can go to for these questions.

Avni,

Yes.  You can get either of two great 0 to 60 liter/minute constant flow oxygen regulators that cost between $140 for an RR series and $190 for an InGage™ series.  Both are readily available over the internet from Flotec Inc. but they build them to order and you'll need to decide what size oxygen cylinders you need to use before you order.

If you're having 3 or more cluster headaches a day during peak periods/high cycles, you're better off ordering the larger M-size oxygen cylinders with the CGA-540 fittings.  The cost to abort is much lower at a total cost of $1.50 than using an E-size oxygen cylinder where the cost to abort is over $6.00.  If that's the case, you'll need an oxygen regulator with a CGA-540 cylinder attach fitting.

The performance is equal between these two regulators, but the ease of use for the $190 InGage™ regulator that I pasted a photo of in my earlier post showing it attached to my "roadie" M60 oxygen cylinder is much better.  It's also more rugged with an internal cylinder pressure gauge, but the real selling point is the knurled knob used to attach it to the M-sized and larger oxygen cylinders.  You hand tighten it so no there's no requirement for a 12" Crescent wrench every time you need to change oxygen cylinders.

Please let me know if you're interested and I'll send you the ordering information.

Take care,

V/R, Batch

With a little searching, one can find "E" tank 25lpm regs with the PTO DISS fittings for around $30 US.

Thanks Batch. If you could give me the order info then that would be great. My husband (who has CH) uses the H tank.

Avni

Hey Avni,

Check your PM.  I've sent what you've requested and a bit more.

Take care,

V/R, Batch

Good to have you back Batch...and those pics......DAMN!!! :)

Joe

Gorgeous gorgeous pictures, batch!
Sounds like you had a great time - good!  You deserve it!

:)