Hey folks,
why does it seem many people have trouble getting a doc to give out a script for oxygen?

Hi,
It's because most doctors are completely clueless about CH.

I feel very lucky to have 2 doctors who are open minded to suggestions - one of them says that I know more about the condition than she does, and the other one has witnessed me having an attack and it scared him to death. I had to actually explain what this condition is and how 02 works. "Oooooh" he said, "of course, I see"!!!

Doesn't give you much confidence does it ?  However now that I've educated these two, they can't do enough to help me. My biggest problem now is actually getting an appointment.

I've seen my fair share of the others too, - the ones who think a couple of paracetamol will bring on a cure.
Maz.

The use of oxygen to abort CHs dates back to at least 1981 (START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE). So whilst the technique is at least 34 years old, somehow the message doesn't get through.

Some of this is down to training. People have posted before that during their medical degree course student doctors get about 6 hours on headaches of all types, with no doubt most of the time on tension and migraines, leaving a small fraction of the time for the many other types.

CH is not exactly common, with many probably never treating a CH patient (or at least a diagnosed one), so they are have little experience or knowledge, which results in things like "women don't get CH" (well not as frequently as guys), etc.

There are some doctors, normally headache specialists, who are clued up, otherwise it seems to be very much luck as to what treatment people get.

As Maz commented and so many others have, there are some doctors who listen, learn and work with knowledgeable CH patients.

CH won't be the only area where most doctors are clueless too.

I guess my question is what harm is there to prescribe oxygen? Can you overdose, is it dangerous, can you get high on it? Why would a doc just dismiss the idea?

Sorry if i should have started this in another forum....
Kevin

You can hyperventilate, but that is the whole point for us. CH  happens because a blood vessel dilates and presses against the trigeminal nerve. High flow 02, causes the brain to think it's getting too much (via the blood vessels) so it constricts them, thus relieving the pressure on the nerve. Hyperventilation can feel a bit strange but does no harm and the weird feelings of tingling and twitching soon wear off.

If you go to hospital for any reason, even as much as a stubbed toe, the first thing they do is shove a mask on your face. It's given to the very weak and elderly and to new born babies too.

Doctors will use many excuses not to prescribe it, ie: it's a fire hazard (it's not), because you smoke, in fact the most harm it will do is if you drop a tank on your toe. There is only one reason I can think of why they are reluctant to prescribe it. Their budget !!!

If you need it and your doc is reluctant, you will have to fight for it, see another doc etc, but don't give up. It's miracle juice.
Maz.

poconokevin wrote on Jul 2^nd, 2015 at 5:29am:

I guess my question is what harm is there to prescribe oxygen? Any harm would probably be to the doctors reputation. The patient would find out the doctor knows nothing about cluster headaches, how and why O2 works, what equipment is needed or how to use O2. Can you overdose, No. fighter pilots use it for hours at a time. is it dangerous, Yes it can be if not used properly. But, common sense should rule out any danger. Don't smoke while on O2. Don't use it in a room with an open pilot light like a stove or fireplace. Clothes can become saturated with O2. After using it go outside or to another room to 'air out' your clothes. And, most importantly, secure the tank so it can't fall over and smash your foot, even though that would distract away from the head pain for a few moments. can you get high on it? No Why would a doc just dismiss the idea? Lack of knowledge about the benefits of O2 use. Lack of knowledge about cluster headaches.

And if you can't "educate" your doc on the use of O2 -- go to a welders supply and get a tank of welder's O2.. Look elsewhere on this site on how to hook it up.. It works just as well...

PS Just don't tell them what you're using it for -- you have some welding to do ..  :-*

BarbaraD wrote on Jul 2^nd, 2015 at 8:34am:

And if you can't "educate" your doc on the use of O2 -- go to a welders supply and get a tank of welder's O2.. Look elsewhere on this site on how to hook it up.. It works just as well... PS Just don't tell them what you're using it for -- you have some welding to do ..  :-*

My Neuro knows that I use welding O2. I started to explain that they are the same, and waved me off with:

"About half of my CH patients use welding O2 because their insurance won't pay and welding O2 is cheap."

Hey Kevin,

Print out the following link and take it to your doctor.

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

It's the Guidline for Standards of Care Recommended Treatments for Cluster headache and other trigemino-autonomic cephalgias. 

This guideline was developed by a team of neurologists recognized for their expertise and experience treating patients with CH and other TACs.

As you'll see, Oxygen Therapy is the first abortive of choice recommended by this team of experts.

Tell you doc to write the Rx for oxygen therapy exactly as it appears below:

"Oxygen therapy with a non-rebreathing mask as an abortive for cluster headache pain.  Administer at onset of attacks at 15-25 liters per minute for up to 20 minutes per hour, up to 12 times per day. ”

If he still balks, ask for a paper copy of the RX...  and tell him you'll find your own provider...  Most home oxygen providers will have a much lower cost if you pay and pick up the oxygen cylinders, i.e., cash and carry...

I'd order the M-size oxygen cylinder and buy your own CGA-540 0-25 liter/minute regulator over the Internet...  They usually run less than $40.  Pick up a ClusterO2 kit from DJ at the CH.com store in the yellow tab at the left.

When you have your home oxygen therapy kit up and running...  read the following link for the "How To"

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

Take care and please keep us posted.

V/R, Batch