Hey Kim,

Hang in there.  We know how spooky cluster headaches can be until you get a handle on them.  You've already received some excellent advice from the old hands that know the ropes.  Here's a little more for you.

IMHO, your doctor is blowing smoke over not prescribing oxygen therapy for you because of insurance limitations.  He's either sadly misinformed or hasn't done his homework...  

Even Medicare covers oxygen therapy if the prescription is written properly.  I've been using high flow rate oxygen therapy at flow rates much higher than 25 liters/minute for the last three years with no problems and I've been able to abort all my attacks without taking any other abortives or preventatives.

In order to avoid needless delays and ensure your claims for insurance coverage are approved so most home care oxygen providers will honor your prescription for oxygen therapy, it’s very important that when you see your doctor or neurologist about a prescription for oxygen therapy, that it is written so that it complies with existing rules stated in the Medicare Carriers Manual, Part 3, §4105.5 shown below.

“A prescription written by the patient's attending physician who has recently examined the patient (normally within a month of the start of therapy) and must specify:

•      A diagnosis of the disease requiring home use of oxygen;
•      The oxygen flow rate; and
•      An estimate of the frequency, duration of use (e.g., 2 liters per minute, 10 minutes per hour, 12 hours per day), and duration of need (e.g., 6 months or lifetime).”

As you can see, it is also important that the prescription specifically states “cluster headaches” as the medical condition being treated.

Accordingly, your prescription should look like the following:

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

The nose cannula is useless at any flow rate above 7 to 9 liters/minute unless you stick it in your mouth.  I would get a good non-rebreather mask with a 3-liter reservoir bag, hook it up to the regulator, crank the flow rate to 25 liters/minute and start huffing and puffing.  You'll be amazed how fast this will abort your cluster headache attacks.  Once you've done this a few times you gain the confidence of knowing YOU are in control and not the beast.

As already noted by others, if you're having more than 3 to 4 attacks a day you'll need more oxygen cylinders on hand.  You're money ahead to get at least two or three M-size oxygen cylinders for use at home to go along with your E-size cylinders for use away from home.  Check your email.  I sent you some additional info on how to do this with one regulator.

Take care,

V/R, Batch