New Doc - he seemed to understand our game to some degree. Really had me pumped that he was up to speed. Put me on a pred taper, and gave me my normal abortives. Now for the strange part - i asked him about 02 and he said he has never written a scrip for medical 02 and suggested that I look into..get this "an oxygen bar." I can just see me at 11 Pm banging in 7-9's and getting in a car in the country and driving to the metroplex to find an oxygen bar.. lost hope again at the comment.
Started the prep taper on Friday and wow what a wierd weekend. The major left eye gig turned into a major left jaw and left teeth gig. Could the cluster pain move as a result of the pred? I mean to the point of real sensitive after the hit, too. This cycle has been a strange one. Back to square one on the 02. Hope all had a great weekend !

Boy, I'd recommend you send him the info we have on O2. Oxygen bar isn't going to do you much good if you are incapacitated by the CH and can't drive yourself! 

I'm convinced that when a MD doesn't want to prescribe O2 it's because he/she is thinking of the expensive concentrator units. A couple of tanks and a non-rebreather mask is not a big ticket item!

Plus, an O2 bar will rarely, if ever, get you a flow rate above 2 liters per minute - about 13% of what you need at a minimum.

Well, a doctor that is positive, listens to you and doesn't brush off your research or thoughts is a good doctor.  A lot of neuros are learning with us.  Mine for instance is all for whatever I need.  I print him stuff from this site and he loves it and always ask about what's new on the website.  The only weird thing he requests is the silly MMPI test which is not commonly done on cluster patients.  It's pretty much a personality test, but heck if that's his worst point, i'll take it.  He prescribes O2 and supports my use of rc seeds and is highly interested in research these alternative therapies since he is a DO doctor.  DO's to me seem to be more open minded not looking for those pharmaceutical kick-backs.  I'd stick with your doctor and do what QnHeartMM said...print the O2 info from here and present it to him.  Encourage him to research it.  It will strengthen his credibility on this complex disease.

Yeah the oxygen bar would be worthless for us. To abort we need 100% 02 to the lungs. Print out the info on the oxygen info link and ask him to take a look. Been a life changer for me having 8 minute abort times with my 02!

Joe

Many of us use higher than 15lpm O2, but the below link should help your Doctor understand.
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Don

Headbanger45,

I love these kinds of posts… 

As you'll see when you read through the following abstract of the results from a cluster headache survey many of us from here on CH.com took in 2008, your neurologist is not alone in his lack of knowledge about oxygen therapy being the single best and first acute treatment of choice to abort our cluster headaches.

As your goal is to use oxygen therapy to abort your cluster headaches, you've two options: 

The first is to educate your neurologist on the safety, efficacy, and cost effectiveness of oxygen therapy as an abortive for cluster headaches so he or she will write the Rx…  or find a neurologist that already knows the standard of care in treating cluster headache and that oxygen therapy at a minimum flow rate of 15 liters/minute with a non-rebreathing mask is the first abortive of choice in the acute treatment of cluster headache. 

Your second option to avoid the delay and anguish with the above option, is to buy your own CGA-540 0-25 or 0-60 liter/minute oxygen regulator over the Internet and an O2PTIMASK™ kit from here at the CH.com store, then head for the nearest welder's supply store and rent a cylinder of welder's O2.  Harbor Freight is a good outlet if you have one in your area.

If you decide to offer your neurologist some continuing medical education (CME) on the prevailing standard of care in treating the cluster headache as recommended by the top neurologists in Europe and the US with the most experience treating patients with our disorder, send him or her the following two links and the following abstract from the most recent cluster headache survey, then charge him the cost of your last office call…  That's only fair cause this is good stuff !!!

Take care,

V/R, Batch

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I met with Dr. Arne May in mid August at the University Hospital Eppendorf UKE, Hamburg.  He's the real thing and a very strong proponent of using oxygen therapy as the first abortive of choice for cluster headache.  He was also the principle author of the above European Federation of Neurological Societies (EFNS) guidelines on the treatment of cluster headache and other trigeminal-autonomic cephalalgias.  I've also had the opportunity to meet with Dr. Peter Sandor, University Hospital Zürich.  He was also a member of the EFNS task force that developed the above guideline for treating cluster headache.  Like the other experts in this field of neurology, he puts oxygen therapy at the top of the acute treatment list for cluster headache.

Many of us have had the opportunity to meet with Dr. Peter Goadsby and listen to his presentations…  He was also a member of the EFNS task force.  Dr. Goadsby conducted the most recent study of oxygen therapy as an abortive for cluster headache to the gold standard for clinical trials.  It was the first major randomized double-blind placebo-controlled crossover trial comparing oxygen therapy versus placebo (forced air) for patients with cluster headache.  A summary of his study results can be found at the following link: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE


Cluster Headache Survey Abstract

Objectives: To present results from the largest survey ever done of cluster headache (CH) patients living in the United States concerning the use of Oxygen (O2) as an acute treatment

Background: CH patients were randomly solicited via approximately 9,000 emails and internet advertisements. Only patients who were diagnosed by a neurologist were able to participate.

Methods: Total survey consisted of 187 multiple-choice questions of which 84 questions dealt with oxygen use, efficacy and economics. Survey was placed on an Internet website from October 12, 2008 through December 12, 2008.

Results: 1134 individuals completed the survey (816 male, 318 female). 868 patients had episodic CH while 266 had chronic CH. 93% were aware of O2 being an acute therapy. 34% had never tried O2. 70% stated O2 was effective (ECH >CCH 72% vs 61%). 50% had tried O2 alone to abort CH, but only 25% were currently using O2 as a sole abortive > 80% of the time. 44% had to first suggest O2 therapy to their physicians to get it prescribed. There was an equal distribution (28% each) of physician type (general practitioner, general neurologist, headache specialist) who initially prescribed O2. Reasons why a physician would not prescribe O2 included: did not know that O2 was used for CH 32%, did not believe it worked 44% and stated medical literature not convincing 16%. Patient or physician had to submit medical literature 44% of the time to get reimbursement for O2. Only 64% of insurers covered O2 for CH. 50% of those using O2 never received training on proper use of O2 cylinder equipment or mask. 45% had to find a source to buy O2 on their own. On oxygen prescriptions only 45% specified a flow rate, 50% stated CH as diagnosis and 28% indicated a specific mask type. 12% of CH patients had used welders O2 (non-prescription, less expensive) stating economic reasons including having no insurance. Oxygen delivery systems: 11% using nasal cannula, 29% standard mask, while 47% high concentration non-rebreather mask. Initial flow rates prescribed: 23% 7 lpm, 51% 8-12 lpm, 18% 13-15 lpm, 8% 16-25 lpm. During therapy 41% start and 34% end using 7-10 lpm, 17% start and 14% end using 11-12 lpm, 28% start and 34% end using 13-15 lpm, 7% start and 10% end at 16-20 lpm and 6% start and 8% end at 21-25 lpm. O2 aborted a CH completely in less than 15 minutes for 36%, 16-30 minutes 30%, while taking > 45 minutes in 22%. Of those using O2 plus another abortive agent, 38% administer the other abortive before, 6% after starting O2, while 56% only administer if O2 did not work.

Conclusions: In the United States despite the obstacles of getting O2 prescribed, covered by insurance, finding an O2 source and having no instruction on how to use it, O2 still remains a viable treatment option for CH patients. A significant portion of CH patients find O2 to be an effective acute therapy although many need to increase the flow rate of O2 during an acute attack and very few use O2 as sole therapy to treat most of their attacks. From this survey physicians and CH patients need more education on the use and prescribing of O2 for CH while headache specialists need to better recognize what CH patients are actually doing with O2 therapy in their homes.

I also have celiac disease and was diagnosed 11 years ago, at a time when gastros didn't know a lot about it, in general. My gastro learned about the disease with me, and I now help others with it, more than he can, as far as diet and how to cope. Some doctors, like my gastro, are understanding that they can't know everything. The key is to find any kind of doctor that is willing to listen to you and take some of what you know, be a true scientist, research it, and make a sound judgment. Doctors don't know everything, they have the ability to learn much, and can really help if they dump their "God complex".

Batch's posts are long, wordy and sometimes complex....and worth their weight in gold! The kind of material you can take to your doc to show you aint just whistling Dixie about 02.

Joe

Thanks Batch - I plan to use this info. I will let folks know the outcome.

Batch is the Jedi Master of O2!

batch is the MAN!