Hi All,

Is there any evidence I can print that shows that O2 with flow rates above 15lpm is any more effective? I'm trying so hard to get any help from my Dr.
He says there's no evidence, but I know he hasn't looked, he never does, that's why i'm not on any preventative meds, I asked him if there was something I could try instead of verapamil, he said, No. He didn't say, maybe i could have a look, just, No. I know that's not the truth.
I'm waiting to be referred back to Neurology, but as you know, that takes weeks. I want help sooner, been getting 10+ hits every day for a week. Proper ones. I barely have the energy of type, let alone fight doctors.. They don't make it easy for us.

Sorry for the rant

Dodge

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Info pulled from the 02 link above

High Oxygen Flow Rates for Cluster Headache

(Editor’s note: In the following article, Dr. Rozen talks about flow rates of 7 to 10 and up to 15 LPM.  Newer studies and trials are showing that flow rates up to 25 LPM, may be more beneficial.)

From the newsletter Headliner, 2004, Issue 33, published by the Michigan Head-Pain & Neurological Institute.  Reprinted with permission.

"High Oxygen Flow Rates for Cluster Headache"
                by Todd D. Rozen, M.D., Neurologist

As discussed in previous issues of the Headliner, cluster headache patients require effective abortive therapy due to the extreme intensity of their pain. The two most effective cluster abortives are injectable sumatriptan and inhaled oxygen. However, since a large percentage of cluster sufferers are cigarette smokers and at high risk for coronary artery disease, many cannot be treated with the various triptan medications. In these cases, oxygen therapy becomes the preferred option.

Oxygen, the safest of all cluster therapies, is usually prescribed based on a landmark study by Dr. Lee Kudrow. In this study, patients were instructed to use 100% oxygen via a nonrebreather face mask at 7-10 liters/minute. Although usually effective, a certain subset of cluster patients do not achieve relief from this treatment. The author hypothesized that treating patients with higher flow rates of oxygen, up to 15 liters/minute, might provide relief to those sufferers who had not responded to standard oxygen therapy regimens.

Because MHNI has many intractable cluster patients, it was decided that a higher dose of oxygen therapy would be utilized in a few patients. Several important cases recently reported in the medical literature, found this therapy to be quite effective in patients who previously did not respond to lower dose oxygen inhalation.

MHNI's experience indicates patients who do not respond to the standard flow rates should be given the opportunity to use up to 15 liters/minute. However, prior to initiating this therapy, patients must obtain clearance from their primary care physician since serious lung disease and other conditions can make oxygen therapy unsafe or inappropriate. In addition, such oxygen therapy should not be used for more than a maximum of 10-20 minutes at a single setting.

The basis by which oxygen turns off a cluster headache is unknown at this time. Oxygen's constrictive effect on cerebral blood vessels may play a significant role.

Further study and a larger sample size are needed to provide conclusive evidence regarding the usefulness of high oxygen flow rates for difficult-to-treat cluster headache patients.

Headliner is published and privately distributed by the Michigan Head-Pain & Neurological Institute for informational use by our patients and friends. Rights to reproduction belong exclusively to Michigan Head-Pain & Neurological Institute. For additional copies or further information contact:

Jeffrey Pingel, Ph.D., or Scott Madden, Editors, Headliner
Michigan Head-Pain & Neurological Institute
3120 Professional Drive, Ann Arbor, MI 48104

Hey Dodge,

Great question...  Unfortunately, your doctor is correct.  There are no gold standard, i.e., randomized, double blind, placebo controlled, crossover studies of oxygen therapy as a cluster headache abortive to prove oxygen flow rates that support hyperventilation are significantly more effective than the traditional 7 to 9 liters/minute suggested by Dr. Lee Kudrow in the early 80s or 15 liters/minute suggested by Dr. Todd Rozen in 2004.

What's even more disappointing is the pilot study of the demand valve method of oxygen therapy for fast aborts of cluster headache we worked so hard to fund for Dr. Rozen at the Geisinger Center for Clinical Studies, Wilkes-Barre, PA is unlikely to complete due to a lack of study subjects.

Moreover, the leading neurologists who specialize in the treatment of cluster headache patients at the major headache centers, are very conservative when it comes to new treatments for cluster headache and will only consider them when the medical evidence of efficacy and safety is incontrovertible...  i.e., one or more IRB approved gold standard studies.

The good news, if you can just get the Rx for oxygen therapy for any flow rate, is you can go out on the Internet and buy your own 0-25 liter/minute oxygen regulator for $25 to $60 or better yet, a 0-60 liter/minute oxygen regulator for $195.  Either of these regulators and an O2PTIMASK™ kit from the CH.com store at the left and you'll be in good shape.  The Rx will help cover the medical insurance cost of the oxygen contents.

If that fails, you can still go down to the local Harbor Freight Tools outlet and lease a cylinder of welder's O2 and buy one of their $25 welder's oxygen regulators. 

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This type of oxygen regulator is outlet pressure rated in PSI, not flow rate in liters/minute, so you'll need to do a little trial and error before you find the most effective regulated pressure to use.  That usually takes only a few minutes...

The out of pocket cost for the oxygen contents using welder's is O2 roughly the same as co-pay with medical insurance for medical oxygen.  As long as the oxygen cylinder is clean, there's no difference between welder's O2 and medical grade oxygen...  Most of the oxygen fill facilities fill both types of oxygen cylinder from the same liquid oxygen (LOX) tanks.

I've been a vocal proponent of oxygen therapy at flow rates that support hyperventilation here at CH.com and elsewhere since 2006 when I joined this forum. 

I developed the procedures for this method of oxygen therapy shortly after I was diagnosed as being a chronic CH'er in 2005 as I was burned out on imitrex and found the traditional preventatives largely ineffective and unsatisfactory due to the onerous side effects...

The efficacy of this method of oxygen therapy was 100% for me and I was averaging 6 to 8 high-kip CH a day during high cycles...  In 2007, Michael Berger, Royce Fishman and I modified my initial procedures to work with an oxygen demand valve Royce provided.  We then started our own clinical trial of this method of oxygen therapy with seven volunteers from here at CH.com...  Six men, one woman, six chronic and one episodic CH'ers.

The results were amazing...  Abort times at flow rates that support hyperventilation were three to four times faster than aborts at a flow rate of 15 liters/minute.  The seven participants collected data on 366 aborts over an eight week period with this method of oxygen therapy...  The efficacy was 99% and the average abort time to a pain free state across pain levels 3 through 9, was 7 minutes...  There were no adverse reactions and there were no side effects.

Unfortunately... This wasn't a gold standard, IRB approved study conducted by a prestigious medical institution and noted neurologist so this study and its incredible results carry absolutely no weight with the major headache centers or any neurologist...

Now for the really great news...  There's another very effective method of controlling cluster headaches, but this method is totally under the radar for neurologists and is only recognized by Integrative/Homeopathic physicians and a few endocrinologists...  Vitamin D3 therapy.

It turns out that most CH'ers are vitamin D3 deficient and that deficiency is contributing to the frequency and severity of their CH.  The best course of action is to see your PCP and ask for the lab test for 25(OH)D, the serum level metabolite of vitamin D3.  The normal reference range for 25(OH)D is 30-100 ng/mL, but we've had CH'ers with active CH test as high as 42 ng/mL.  If your results come back < 42 ng/mL, start the anti-inflammatory regimen...

I developed the anti-inflammatory regimen with 10,000 IU/day vitamin D3 in early October of 2010...  24 hours after I started this regimen I was pain free of my CH. 

I've remained pain free ever since with the exception of an intentional stress test of my 25(OH)D reserves last November, when I stopping this regimen completely...  Eight days later I was rewarded with a classic CH at pain level six...  I restarted the anti-inflammatory regimen and am still PF.

The basic regimen of vitamin and mineral supplements is shown below by brand from Costco...  It costs $35 or 20 cents a day for a five-month supply.

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Take two of each a day as shown below.  You can take them in the morning or evening with or without food...

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I've been collecting efficacy data on this method of controlling/preventing CH since 10 December 2010 from here at CH.com and also at ClusterBusters...

The raw efficacy to date is better than 72% with 100 out of 133 CH'ers finding this method of preventing CH really works...  You can read what other CH'ers are saying about their experience with this regimen at the following link:

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This thread is now 30 pages long and it's been viewed over 42,600 times since I started it...  That's over 80 times a day...

Take care and please keep us posted...

V/R, Batch

Quote:

He says there's no evidence, but I know he hasn't looked, he never does, that's why i'm not on any preventative meds, I asked him if there was something I could try instead of verapamil, he said, No. He didn't say, maybe i could have a look, just, No. I know that's not the truth.

I know things are tough for you right now, but when you can you need to fire this guy's @$$.

Brew wrote on May 3^rd, 2012 at 12:08pm:

Quote: He says there's no evidence, but I know he hasn't looked, he never does, that's why i'm not on any preventative meds, I asked him if there was something I could try instead of verapamil, he said, No. He didn't say, maybe i could have a look, just, No. I know that's not the truth. I know things are tough for you right now, but when you can you need to fire this guy's @$$.

I'm not one to bash doc's but Brew is spot on. When this cycle is over, start shopping for a new doc. This is one condition where a closed minded "I know everything that needs to be known"  doctor will cause you many many hours of needless pain. :-/

Joe

Correct me if I am wrong, but isn't the real issue here one of percentage oxygen rather than flow rate?

I would have thought the aim is to achieve as close to 100% O2 as possible in order to have maximal effect. So flow rate is simply a means to an end.

A demand valve will supply virtually 100% with every breath, and no gas wastage since it supplies exactly what you need for each breath, but no more. Flow rate is not an issue here as the demand valve will just provide gas at whatever rate you suck on it.

For a non-demand setup flow rate becomes important, but only as a means of achieving the highest possible percentage of oxygen. A regular non-rebreather mask doesn't seal perfectly well so some dilution with air will occur and some wastage of oxygen will also occur. The O2ptimask would presumably achieve higher O2 percentages by virtue of the better seal and the larger reservoir bag.

I guess what I am getting at is that research should really be aimed at demonstrating whether high percentage O2 is superior to lower percentages. From that information it can then be inferred as to what is the best delivery sysem to achieve that desired O2 percentage.

If research showed that 100% O2 was the most effective option for aborting CH then it just becomes a matter of setting yourself up with the best delivery system that can achieve that aim within your budget. As such you would have good reason to tell your doctor that high flow rates are essential if the research has shown that high percentage O2 is the primary aim. We need to keep in mind that in most medical applications 100% O2 is not usually required so most doctors would not be well versed in the best ways of delivering it.

I do appreciate that it is difficult to conduct research studies, both financially and having enough subjects. So in the meantime the original poster needs to baffle his doctor into believing that he needs to achieve 100% O2 and that low flow rates won't achieve that.

Try to make the doctor think it was his own idea in the first place..."As you obviously know doctor high percentage oxygen is essential and from your extensive knowledge you would realise that low flow sytems can't achieve that. I think you said last time I was here that I would probably need a higher flow system, and it seems you were right...the low flow just isn't working well enough"  ;)
The above is somewhat tongue in cheek, but you never know maybe if you word things carefully you may get somewhere.  :)

I haven't had any of these hassles because I am a scuba diver with a certification to allow me to use up to 100% O2. So I simply walk into the dive shop and get my tank filled with O2 then use an oxygen compatible scuba regulator, which is in effect a demand valve. No doctors involved!

The standard medical protical in the US for O2 is 15 LPM maximum. It's not illegal for us to get our own regulator and mask. If you want the best you need to get a regulator from START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE, the $195 Batch mentioned. I have two. Made in the USA.

For top of the line you want a  Demand valve from START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE, made in England $500+, I have one and it's the best. You need an Rx for this, but explain to the Doc it only lets out O2 when you breathe, saves O2. You'll need a Diss fitting on the regulator for this. Flotec does this. If any regulator has this it will work.

Need help, ask.       Don

Don

I have to echo what everyone above has said. When I was using a nonrebreather mask at 12-15lpm, it helped, a lot. But the real breakthrough came with the demand flow valve. Aborts went from 15-20 minutes, down to 2-5 minutes, and have stayed there, generally. It's worth the investment! Blessings. lance

Wow. Thanks everyone for so much information, I know I should have looked for myself, but been too wiped out, just needed to be told, so thank you again, I've had more help here in a day than all year at the Dr's!!

Going vitamin shopping today.

I'm in the UK and the cylinders I get on prescription come with a big lump of plastic on top with a built in regulator with a dial that goes up to 15, looks like they don't want me to mess about with it. Maybe welders O2 is the way to go for me.. Got Optimask in Decemberish, what a difference!!

Feeling a bit brighter today, thanks again.

Dodge

Dodge,

Silly me...  I should have noticed you live down in Dorset... and glad you're feeling better

We used to terrorize the villagers around Blandford Forum, Poole and Bournmouth while we were working with your MOD out of Blandford Camp. 

Lots of great pubs in the area...  The Bed & Breakfast Inns were superb...  I usually survived on Bangers and Eggs every morning with a press pot of badly needed coffee...

Day outings to the Cerne Abbas Giant, Dorchester, and Stonehenge were also a hoot.

I'm familiar with your bottled medical oxygen systems with integrated regulator...  You may want to try building yourself a redneck reservoir bag breathing system out of a 40 gal trash bag or 55 gal drum liner...

I posted the DIY instructions and the hyperventilation breathing techniques at the following link, reply #4:

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Good move on giving the vitamin D3 route a try...  If you're one of the fortunate types who respond in 24 hours to a few days, you'll not really need the oxygen...  My oxygen system has been sitting under a dust cover in the bedroom closet, unused since the second day on the anti-inflammatory regimen...

Take care and cheers,

V/R, Batch