Sorry if this is covered elsewhere...are there any CH charities?  The "dump ice water on yourself" challenge made me think we should do something similar.

For reference, I was a member here for years, but forgot my account.  I've been CH free since 2011; I'm thinking maybe a year or two before they come back based on prior cycles.

By "charities" do you mean groups which will help pay for treatment? or, are you thinking about research groups oriented around Cluster?

Use any search engine on the web and enter: "Cluster headache research foundations" ane you 'll get a mixed bag of sites, some directly useful for us.

Given the lack of awareness about CH even in the medical community, I think one of the most important things we can do is to raise awareness about CH and treatment.

For example, my province uses Healthwise Inc as a provider of  health content and patient education on their web site. I wrote to Healthwise regarding their article: "High-Flow Oxygen Inhalation Therapy for Cluster Headaches". They recommended 7 litres per minute as a flow rate and I asked them to justify that number and cite a reference for it. They removed the article and they are currently updating it, presumably to be more in line with current evidence (JAMA study 12 litres per minute).

feisty wrote on Aug 17^th, 2014 at 4:59pm:

Given the lack of awareness about CH even in the medical community, I think one of the most important things we can do is to raise awareness about CH and treatment. For example, my province uses Healthwise Inc as a provider of  health content and patient education on their web site. I wrote to Healthwise regarding their article: "High-Flow Oxygen Inhalation Therapy for Cluster Headaches". They recommended 7 litres per minute as a flow rate and I asked them to justify that number and cite a reference for it. They removed the article and they are currently updating it, presumably to be more in line with current evidence (JAMA study 12 litres per minute).

Hyperventilation requires 25 lpm+

-Gregg in Las Vegas

LasVegas wrote on Aug 17^th, 2014 at 9:09pm:

Hyperventilation requires 25 lpm+

Yes, unfortunately no one has published a study using >12 lpm in a peer reviewed journal...yet.

feisty wrote on Aug 17^th, 2014 at 10:36pm:

LasVegas wrote on Aug 17th, 2014 at 9:09pm: Hyperventilation requires 25 lpm+ Yes, unfortunately no one has published a study using >12 lpm in a peer reviewed journal...yet.

PM Batch about this. A few years ago, he told me he was working w/ some reputable international CH specialists on completing a revised o2 (25 lpm+) study, but $ and insurance companies were delaying the publishing. My guess is he completed it.

-Gregg in Las Vegas

If anyone has a published reference for this, I'd be interested.

Thanks.

Hi and welcome Hircine...

Charity begins at home.....while ch.com is a family not a "charity"... neither is it a for profit. It is the vision of a prophet named DJ....a "man among men" now assisted by Steph and others...who selflessly maintain it for lo these years...at, I am sure, beyond PITA level. He and this have literally saved lives....probably occasionally, though hopefully rarely now, on his own dime.....

There be a paypal button at the bottom of the page....

Best

Jon

Regarding a published study of oxygen therapy at flow rates that support hyperventilation...  The closest we can come is a pilot study of the demand valve method of oxygen therapy as an abortive for cluster headache conducted by Dr. Todd Rozen, MD.  See the following link for details:

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Todd leads the Headache Department at the Geisinger Neurosciences Institute, in Wilkes-Barre, PA.  Royce Fishman, Michael Berger and I wrangled the needed funding out of Linde AG through BOC in the UK to pay for Dr. Rozen's pilot study.

One of the limitations of this study was it's construct.  Each participant was allowed only one attempt to abort a CH with the demand valve and one attempt with a non-rebreathing oxygen mask with an oxygen flow rate of 15 liters/minute.

One of the big advantages of using an oxygen demand valve to abort cluster headache is they don't have any means of regulating flow rates so none are specified in the Rx. 

This comes in very handy as telling the medical insurance companies you need an oxygen flow rate of 25 to 40 liters/minute to abort a CH very rapidly and reliably would create the mother of all negative responses. 

Fortunately, as an oxygen demand valve functions very similar to the second stage of a SCUBA regulator... you control the volume of oxygen inhaled from a demand valve with simple changes in the respiration rate and lung tidal volumes.

No need in specifying any thing controversial in the prescription like huff and puff on a demand valve like the big bad wolf...  just "breath a little faster than normal"...The real instructions are passed to the CH'er verbally.

We conducted the best pilot study on oxygen therapy at flow rates that support hyperventilation over a six month period starting in late 2007. 

This pilot study involved seven subjects, six men, one woman, six chronic CH'ers and one episodic.  The seven participants collected abort times and pain levels on every abort for 8 weeks using either an oxygen demand valve or a 0 to 60 liter/minute oxygen regulator and ClusterO2 mask. 

Both methods were equally effective with very short abort times...  They collected data on a grand total of 366 aborts.  I've held off in trying to get the results of this pilot study published until Dr. Rozen had published the results of his study per an agreement with him.

I've posted most of the results from this pilot study here at CH.com.  Now that Dr. Rozen's pilot study has been published the ball is now in my court to see if I can get the complete manuscript published.

In the mean time, CH'ers can use the latest method of oxygen therapy that involves hyperventilating with room air at forced tidal volume capacity for 30 seconds followed by inhaling a lung full of 100% oxygen and holding it for 30 seconds then repeating the entire sequence 4 to 5 times or until the pain is completely gone. 

This method of oxygen therapy is just as effective in aborting CH very rapidly and reliably as the oxygen demand valve method. 

The real benefit of this latest method of oxygen therapy is it can be used effectively with oxygen regulators delivering flow rates as low as 4 to 5 liters/minute as long as the ClusterO2 kit with 3-liter reservoir bag is used.

This method of oxygen therapy also consumes much less oxygen... typically 16 to 20 liters/abort.  A rapid abort using the oxygen demand valve (4 to 5 minutes) consumes 160 to 200 liters of oxygen.

You can find the latest procedure along with the optimum breathing technique at the following link.  Scroll down to post 1863.

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

This post also has a chart from the pilot study we conducted that illustrates oxygen therapy with hyperventilation results in CH aborts three to four times faster than using a flow rate of 15 liters/minute...  an average of 7 minutes across pain levels 3 through 9.

Take care,

V/R, Batch

Fascinating Batch - thank you!

My husband has found that the Cluster02 kit works really well, and that hyperventilating helps. All he's ever had is a regulator that goes up to 15 lpm, so I guess it would be great if that could be the minimum offering to CH patients. That is not terribly affordable for us but at least we were able to get it by being VERY determined.