Hey Melanie,

You're almost there with a properly functioning home oxygen therapy system.  Joe has already given you some great suggestions. 

Here are my thoughts on how to proceed.

1. Call your neurologist and ask that the oxygen therapy prescription be rewritten...  ("How to" instructions follow below).

2. Ask for a hard copy of the prescription in case you go on travel and need to order oxygen from another provider at your destination.

3. Call the home oxygen provider and ask that they deliver an oxygen regulator capable of an oxygen flow rate of 20 to 25 liters/minute for your cluster headaches.  If they refuse, see the following discussion.

4. Order one of the $27.50 O2PTIMASK™ kits from the CH.com store link in yellow at the left.  These are grate non-rebreathing oxygen masks with a 3-liter reservoir bag...  They last too.  I've had one for over 5 years and it's still working just fine.  The $1.50 disposable non-rebreathing oxygen masks most home oxygen providers deliver, have only a 1-liter reservoir bag and they tend to fall apart.

I sense by now you're beginning to discover the more exasperating aspects of obtaining home oxygen therapy as an abortive for cluster headache.

I doubt your medical insurance covers only oxygen concentrators... 

This is a typical line of BS that too many home oxygen providers use so they can charge your insurance company for a more expensive oxygen concentrator with a much higher profit margin than compressed oxygen cylinders.

Home oxygen therapy is the most over-regulated prescription USP in the history of man... 

The government's regulation of oxygen therapy started out as a cottage industry, but it has grown unchecked and out of control into a major division with several hundred people at the Centers for Medicare and Medicaid (CMS), HHS and hundreds more Oxygen DME contractors located on site at most of the major home oxygen providers. These Oxygen DME contractors are often very difficult to deal with.

Physicians can write an Rx for any number of addictive pain medications with nary a sideways glance from the regulatory agencies... However, let them try to write an Rx for oxygen therapy and they run into a phalanx of bureaucrats and bean counters armed with more rules and regulations than Carter's Little Liver Pills...  Moreover, all these rules and regulations are backed by USC and legislation passed by the idiots in Congress...

Unfortunately, CH'ers run into this bureaucratic BS all the time.  The process becomes so difficult and confused, too many physicians avoid writing the Rx and if they do, there's still the home oxygen provider and insurance companies to deal with... 

All this results in too many CH'ers never experiencing the wonderful benefits of using oxygen therapy, at a high enough flow rate, as a cluster headache abortive.

Accordingly, print this post and give it to your neurologist in order to the Rx for oxygen therapy written or rewritten as follows: 

"Oxygen therapy as an abortive for cluster headache (CH). Use at 20 to 25 liters/minute with non-rebreathing oxygen mask at  onset of CH for up to 20 minutes duration.  Use up to 12 times a day."

Note: Obviously, this Rx can be written in medical shorthand as long as the essential elements are present.  As with all properly written prescriptions, stating the medication, the medical condition being treated, the prescribed dosing and duration of use are essential.  Moreover, specifying an oxygen flow rate greater than 15 liters/minute and ideally, 20 to 25 liters/minute, should preclude any attempt by the home oxygen provider to substitute an oxygen concentrator or liquid oxygen (LOX) system as neither can generate or sustain flow rates this high.

Remember to have the Rx written to provide oxygen refills for up to two years.

In addition, the following diagnostic and treatment codes will come in handy as most medical insurance companies require them...  In other words, fight the bureaucrats and bean counters with their own rules and regulations:

Diagnostic and Treatment Codes

  Cluster Headache Diagnostic Codes

    ICD-9-CM Diagnosis Codes:
        Episodic Cluster Headaches – 339.01
        Chronic Cluster Headaches  – 339.02

   ICHD-II Codes:
       Episodic Cluster Headaches – 3.1.1
       Chronic Cluster Headaches  – 3.1.2

   ICD-10 NA Codes:
       Episodic Cluster Headaches – G44.01
       Chronic Cluster Headaches  – G44.02

The following codes for treatment and procedures are applicable to most private medical insurance guidelines are included below for informational purposes.  Inclusion or exclusion of a procedure, diagnosis or device code(s) does not constitute or imply member coverage or provider reimbursement policy.  Refer to your medical insurance contract benefits in effect at the time of service to determine coverage or non-coverage of these services as it applies to an individual member.

Healthcare Common Procedure Coding System (HCPCS) Codes for Cluster Headache:

      Equipment:
           E0424-E0425 Stationary compressed gaseous oxygen system
           E0430-E0431 Portable gaseous oxygen system

      Contents:
          E0441 Oxygen contents, gaseous, 1 month’s supply = 1 unit

      Modifiers:
          QG - Prescribed amount of oxygen is greater than four liters per minute (LPM)

Using the above Rx sample with the appropriate diagnostic, treatment and HCPCS codes also helps preclude confusing the Rx as being written for a COPD sufferer... Remember, most of these bureaucrats and medical insurance companies have a built-in bias to deny oxygen therapy...

I've found it also helps to go on the offense if you run into an oxygen provider or one of the DME contractors who wants to change the Rx and deliver a concentrator, a LOX system or a regulator incapable of delivering a flow rate of 20 to 25 liters/minute... 

All you need to do is state the following:

"Are you a licensed physician?"

"Changing a prescription without consent of the physician who wrote it, is against the law"

"There is no generic substitution for a prescription written for gaseous oxygen at a flow rate of 20 to 25 liters/minute."

If all this fails, find another home oxygen provider...   or as Brew suggested, buy the needed equipment.

Take care,

V/R, Batch