HI everyone,

I have been taking my O2 now for 4 days and I can see a higher flow rate would be beneficial, as you all have said.

However, my Doctor prescribed my O2 intake to be 5-10 LPM, therefore, the Medical Equipment company that I get my O2 from will not, of course, give me a higher flow regulator. Looks like I may have to, very diplomatically, educate my Dr.

So, I figure, if I am going to talk to my Dr. about this, I should be armed with some scientific stuff to throw at him..lol. Right?

Brew? Batch? Joe? Got anything?

Thanks,
~~ Robbie

Buy a higher flow regulator on e-bay.

Sadly I don't think there is anything published yet. Batch has been working hard to get studies going on higher flow rates and demand valves, but as I understand it, they are not at the published level yet.

As Brew said, check out E-Bay. I have a spare reg that goes up to 45 LPM that Christy nabbed off E-Bay last year for $19.95. The internet is a beautiful place! Then, when you start slaying the beast in under 6 minutes, use your experience to encourage your doc to "think outside the box" just a bit. Good luck.

joe

Thank you so much, Brew and Joe!!

All you guys (at CH.com) that devote so much of your time helping all of us out...you are great!!!  Us newbies probably keep asking  you stuff that you have answered many, many times!! (And yet, you care so much, you answer so promptly!)

Thanks for being here.   :-*
~~Robbie

Hey Robbie,

Joe summed it all up regarding published studies on oxygen flow rates of 25 liters/minute and higher for cluster headaches.  We've one study underway at the Geisinger Center for Clinical Studies in Wilkes-Barre, PA with Dr. Todd Rozen as the Principal Investigator, but I don't expect any published results until this Fall at the soonest and more likely early next year.  They're still accepting study participants if you're interested...

We conducted an informal study of oxygen therapy at these flow rates in 2008 with seven participants that gave us data on 366 aborts giving us proof that the efficacy of this method of oxygen therapy is high.  Abort data also indicated cluster headache aborts at flow rates of 25 liters/minute and higher that support hyperventilation were on average three times faster than at a flow rate of 15 liters/minute.  However, I doubt any editors of the headache periodicals would accept an article on an informal study for publishing written by a fighter pilot...  So we wait...

That said, this method of oxygen therapy is nearly 100% effective with average abort times around 7 minutes for headaches between 3 and 9 on the 10-Point headache pain scale as long as there are no conflicting comorbid conditions.

The following chart from the National Guideline Clearing House lists the standards of care in the EFNS guidelines on the treatment of cluster headache and other trigeminal-autonomic cephalalgias.  As you'll see, it calls for an oxygen flow rate of 15 liters/minute as the first abortive of choice in the acute treatment of cluster headache.

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You can reach this recommended standard of care at the following link:

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You may want to take or send this chart and link to your neurologist if you want to get a flow rate of at least 15 liters/minute.  Check your PM inbox for additional info.

In the mean time, only a few neurologist will prescribe a flow rate of 25 liters/minute so you may as well plan on buying one for yourself.

You can usually find a 0-25 liter/minute regulator on the Internet for less than $60, but most are CGA-870 for the smaller E-size oxygen cylinders.  The best regulator available, called the InGage™ is made by Flotec Inc.  It's a 0 to 60 liter/minute CGA-540 regulator with barb fitting for your O2PTIMASK™ kit and also a DISS fitting should you decide to buy an oxygen demand valve at a later date. 

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This regulator is ruggedized with an internal cylinder pressure gauge and it has a knurled knob you use to hand tighten it to the CGA-540 fitting on the M-size and larger oxygen cylinders...  No Crescent wrench needed...

The photo above shows my InGage™ attached to an aluminum M60 I used as a "roadie" for local travel.

The InGage™ regulator runs around $190 and is made to order in 10 days to two weeks after order confirmation...  Let me know if you're interested as the ordering spec's are a bit complicated and they'll want you to confirm them before they start fabrication.

I know 60 liters/minute sounds like a high flow rate, but there are times you'll be glad you have it...  like when the beast is jumping ugly and you want to kick start the oxygen therapy process. 

Our study found that a flow rate of 40 liters/minute worked almost as fast as 60 liters/minute in aborting a CH and you could sustain that flow rate until the abort.  You'll get pooped out and tire rapidly in less than a minute breathing at a flow rate 60 liters/minute, but it can shave as much as a minute off the abort times if you use it for a minute at the start of therapy.

You may want to give the anti-inflammatory regimen a try before you order an oxygen regulator.  You'll find it at the following link:

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The post is titled: "123 Days PF And I Think I know Why."  I've been pain free since starting this regimen last October after six years as a CCH'er.  I was knocking down 4 hits a night the day I started it.

At less than 20 cents a day for the ingredients if you buy them at Costco, the price is right. 

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I still take it and so does my wife... and she doesn't have CH...  Lots of other health benefits...  like it's good for the heart... it lowers BP, cholesterol and triglycerides.   It's also good for the bones.

So far of the CH'ers who have tried this regimen and posted their results or sent me PMs or email, 80% have reported favorable results with a marked reduction in the frequency and severity of their CH or they've gone into a pain free remission...  At best, verapamil is 50% effective as a preventative and it carries some onerous side effects...   If you think about the risk vs benefit ratio... the choice of preventatives becomes obvious...

Take care,

V/R, Batch

Thank you, Oh Yoda!!!

LOL
Seriously, though, all of your information is genuinely appreciated.

I am in the process of filing a grievance with Kaiser because O2 therapy is not covered on many of the plans (including mine), therefore, they do not prescribe it unless you ask for it as I did. And if you do ask for it, they tell you its not covered and many may think it would be too expensive, so they may not even pursue it. That is what I did last year when the beast was attacking. And no meds that I was prescribed worked, therefore I got stuck on pain meds. What could I do??? Can't face the beast alone!!!
(yes, I know....I am weak....but the beast is so scary!)

They will be reviewing what I have to say July 5. I faxed them a letter from me stating that the reason for doing this is that all CH sufferers should have the choice of choosing the benefits of O2 therapy. I wrote that the first treatment for choice should be O2 therapy, just as the National Guidelines direct. Then I copied and faxed also that info. you had just put in your post about the recommended standard of care from
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I hope this will make a difference for future Kaiser CH sufferers. I just had to do something!

~~Robbie

Might be more of an individual doctor issue than Kaiser. We had Kaiser for 30+ years and we got oxygen from them. Joe had a really great primary care and neurologist. They loved the info he would bring from this site and OUCH

Hope you have better luck. Sometimes you have to make sure they understand oxygen tank for a few minutes and not a concentrator being used all day. Big difference in cost.

Could it be that the reason it was not mentioned to me is that my personal Kaiser plan does not cover DME? How can they prescribe something that they do not cover?

We had to pay for the o2, sorry I did not mention. We paid about five bucks a month for tank rental and then refill costs. We got directly from apria with prescription. Even now with cigna we have beepainting 34 month for 6 tanks. (haven't met deductible yet). Cheaper than meds and way more effective.

(edited to fix all my stupid iPad auto-corrects!)

An insurance company does not prescribe anything. Doctors are the only ones who can prescribe.

And if any of this is surprising, it shouldn't be. Insurance companies hire actuaries to do just this kind of research. They are specialists in statistics. Chances are they have several of them that do nothing but research the odds of having their clients end their pursuit of benefits when escalating hurdles and roadblocks are thrown in front of them.

They can then ascribe a cost to erecting those hurdles and calculate what the return on their investment is. For example, Acme Insurance will require every cluster headache patient to have their physician provide a letter of medial necessity to exceed the customary maximum of 9 doses of Imitrex per month. The actuaries then calculate that by putting this requirement in place, 38.2% of all cluster headache clients will not pursue getting that letter from their doctor. The administrative cost of processing the other 61.8% is less than the amount they save on paying for the extra Imitrex that exceeds their somewhat arbitrary cut-off of 9 doses per month.

Bada bing, bada boom - savings for their company.

It works that way for all meds and treatments for just about all ailments. This is how insurance companies remain profitable.

QnHeartMM wrote on Jul 1^st, 2011 at 11:26am:

We had to pay for the o2, sorry I did not mention. We paid a out five bucks a month for tank rental and then refill costs. We got directly from apria with prescription. Even now with cigna we have been paint 34 month for 6 tanks. (haven't met deductible yet). Cheaper than meds and way more effective.

Is this an example of spell-check, or perhaps auto-fill, gone wild? :o

PWI.

Posting while intoxicated.

(You know I'm just giving you the business, Christy).

Brew wrote on Jul 1^st, 2011 at 8:14pm:

PWI. Posting while intoxicated. (You know I'm just giving you the business, Christy).

LOL! Teach me for not proofing before hitting post!

Oh thanks guys....I'm left taking all the heat! :P

Joe