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

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

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