I was diagnosed CH in 05 - a full four years ago. During that time I've been fighting to get set up with an oxygen tank rather than a oxygen machine as per the oxygen page here at this site.

My health care provider is tricare and I see a neuro, but between the two they can't seem to get the consult for the oxygen right. One problem is I haven't asserted myself enough, but at the same time I don't like telling a specialist what to prescribe me.

I'm over that and ready to go back for another round, but I want to be armed with something the doc will consider authoritative that says I need 100 percent oxygen at 15 LPM. Basically, all the stuff the oxygen page says.

I know I trust the advice and information here and have learned a lot, but telling my neuro "I read on this webiste..." may not cut it with him.

Any links to something I can print out and show him - medical journals or whatever they use will be appreciated.

Eric

Eric,

Good on you for asking about oxygen therapy.  There are a number of neurologists specialized in treating the cluster headache disorder that prescribe oxygen therapy at 15 liters/minute.  The most notable neurologist in this area is Dr. Todd Rozen.  He's published articles on studies he's conducted on the use of oxygen therapy at 15 liters/minute.  See the following link.

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The following link will take you to a post I put up earlier this month that covers how to obtain a prescription for oxygen therapy as an abortive for your cluster headaches:

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This post lists one of the many standards of care in treating our disorder from the National Guideline Clearing House as well as suggested instructions for preparing prescriptions for oxygen therapy including examples.

I have Tricare and they cover oxygen therapy for cluster headaches...  The prescription just needs to be written properly per the link above.

Check you're PM InBox for some additional information.

Take care and keep me posted,

V/R, Batch

Batch thanks very much.

One of the other pitfalls has been that when he puts in the consult and a company picks it up, the consult will be for an LPM that is the upper limit of what a machine supposedly kicks out.

They say that the bottles would be empty too soon at the rate I want. They seem to be so used to providing o2 to patients that just need a steady flow they don't really get what my needs are.

I've left the neuro with him agreeing to put in a prescription/consult for a higher LPM, but I it always ends up this standard blurb that either comes from his paperback book that has a page on CH that he pulls out every time I see him, or its built into the computer system they use.

I need to shake this feeling that its disrespectful professionally to go say "I need you to write a prescription and here's how it needs to be worded." Its like I'm telling him how to do his job and he's a full bird Colonel.

I'll be reading a rereading the links you posted, thanks again.

-Eric

Eric, my husband uses an ON-Demand Regulator so that the tank isn't blowing out 02 when he's between inhale/exhale. It looks like a divers rig, in fact that's what it's from, his old diving stuff.

1968eric wrote on May 27^th, 2009 at 2:38pm:

I've left the neuro with him agreeing to put in a prescription/consult for a higher LPM, but I it always ends up this standard blurb that either comes from his paperback book that has a page on CH that he pulls out every time I see him, or its built into the computer system they use.

Hi Eric,

If your Dr understood that his perscription wasn't either a) being printed properly by his office or b) wasn't being followed by your supplier he'd understand and take the necessary action.  Don't underestimate his willingness to help get it right here.  

There are two sides to any successful relationship.  Both parties have to do their job.  He think he did his.  Now it's up to you to provide the feedback.

If I'm wrong and he really doesn't care, then you need to fire him and find one who does.

Good luck...

-Dennis-

1968eric wrote on May 27^th, 2009 at 2:38pm:

the consult will be for an LPM that is the upper limit of what a machine supposedly kicks out.

Eric, as soon as I saw your post, this morning, I called Batch and had him get right on it.  He has all the links, etc.  And, as usual, he responded perfectly!  (I love it when he does as he is told ...LOL!! )  

In your response, above, you mentioned "a machine" ... Do NOT let them put you on an oxygen concentrator!  They just do NOT work for us!

• They produce "mostly" oxygen ... NOT the 100% that we need!

• It takes a few minutes for it to even START to produce "mostly" oxygen.  It usually starts out at about 20 to 40% oxygen, and then after a few minutes, it gets ALL THE WAY up to 80 to 90% oxygen!

• They are NOT portable.  You can't throw one in the back seat of your car, so that you can go to the park with your honey, or kids!  It ties you to your house.  NOT acceptable!

• They require too much maintenance, and upkeep.

• FEW of the machines can produce 15 LPM, and NONE can produce the 25 LPM or higher rate that so many of us use!

He may be a fully bird colonel, but he should be willing to learn about treatments that have been PROVEN to work for us!  Most of us have to train our doctors.  You do it in a polite, respectful way, and you are helping HIM to learn, so that he can help the next guy/gal that comes along.

Be respectful, yet firm.  Don't give in!

Good luck, and keep us informed!

Chuck

Your Doc is right, the common tanks are small and will be gone quickly.  Thats why I keep about 12 to 15 of those around along with 3 large tanks.  

You are right, a lot of providers and even the DME companies have no idea what we need.  I told the guy at my Oxygen supplier that I use it at "very high flow"...he thought that meant 6 LPM.    ::)

I am currently using 15LPM Reg. but in the process of getting 25 LPM Reg.
It is taking way to long to beat down the night time hits this round, but 15 LPM sure works awesome for the daytime one's if I can catch them in time.
Must get on the o2 at the very first sign of an on-coming hit.

You are in good hands with these guy's, they are the best! ;)

Eric,

You have been given advice by some real experts about the use of Oxygen for CH. Your Doctor obviously means well but info from a book that may be years old is just that.

He may be a full Colonel but without current info about the treatment of CH, you must bring him up to speed. With respect of course.

CH is a rare condition and most of us have found, in our best interest, to know as much and more than our Doctors about CH and the most current treatments.

Best of Luck, Don

DennisM1045 wrote on May 27^th, 2009 at 3:49pm:

1968eric wrote on May 27th, 2009 at 2:38pm: I've left the neuro with him agreeing to put in a prescription/consult for a higher LPM, but I it always ends up this standard blurb that either comes from his paperback book that has a page on CH that he pulls out every time I see him, or its built into the computer system they use. Hi Eric, There are two sides to any successful relationship.  Both parties have to do their job.  He think he did his.  Now it's up to you to provide the feedback. If I'm wrong and he really doesn't care, then you need to fire him and find one who does.

Firing him isn't an option. I use a military hospital.

I've been through the feedback cycle you describe several times. It always results in them bringing another concentrator.

As it turns out, he's now gone, I can no longer see a neuro at the military hospital because they're short staffed and only see active duty now, but a reservist family practice doctor (who seems to know more about CH than the neuro) has now got me set up with a bottle of o2.

In the neuro's defense, the reason he was having such a problem getting it right was likely being so overworked. Welcome to rationed government provided health care. Don't get me wrong, overall I've always been very happy with the vast majority of the doctors I've seen and care I've been given. Where there have been shortcomings it was because their budget dictates what they provide, not the demand.

ClusterChuck wrote on May 27^th, 2009 at 7:08pm:

1968eric wrote on May 27th, 2009 at 2:38pm: the consult will be for an LPM that is the upper limit of what a machine supposedly kicks out. Eric, as soon as I saw your post, this morning, I called Batch and had him get right on it.  He has all the links, etc.  And, as usual, he responded perfectly!  (I love it when he does as he is told ...LOL!! )   Chuck

Thanks to you and to Batch. Batch has helped me out immensely.

I've made some headway. Thanks to a reservist MD that's in town for a few weeks working in family practice, I now have one M size tank sitting next to my bed. They only had regulators that go up to 15LPM but at least its real oxygen and its a start.

I went back and forth with the neuro I'd been seeing over at least three years about the concentrator. I'd give him the information - tell him I needed the prescription to read higher than it was, but somehow he'd always put it in the same way he had last time and I'd get the same results.

Today I'm just happy I've gained some ground and that neuro is gone now anyway. If I have to buy my own regulator and all, I'm prepared to do that. I think I've got my foot in the door well enough I can switch companies to the one Batch suggested at some point.

Thanks again to everyone for all the responses and advice.

Quote:

If I have to buy my own regulator and all, I'm prepared to do that.

Consider purchasing the O2ptimask (see CH.com store on left for info).

I have not been around here much lately so maybe it's against the rules to discuss this, but I'm surprised nobody has mentioned the other alternative: Welding O2. (OK, I said it out loud)

Dirt cheap, clean, safe, reliable and instantly available everywhere.

If a person REALLY does the research, they see that my comments above are accurate. Grab a really good mask or mouthpiece, crank up the flow enough to hyperventilate for a few minutes - then walk away smiling.

Sure, a person can spend days/weeks/months arguing with doctors and insurance companies while suffering needlessly if they wish.

I suppose it all depends upon how badly a person wants to stop the pain................My choice was to get my life back, and I have.

Respectfully,
Marc

Ditto on the welders tank.

That what I have, a lovely green huge tank decorating my living room.

I rent it for about $58.00 per year, and refills cost me around $17.00.  I have a non-rebreathable cluster mask that I bought through this site a few years ago, and a regulator that goes to 15 lpm (25 is better, but 15 is good).

Just don't tell the welding supply company that you plan to inhale it.

It's the same stuff - 100% oxygen.

Sandy