Jay,
Bless my long gray whiskers... YGBSM!!!!
I agree with Bill. Call the turkeys at your home oxygen provider and ask them for the name, credentials, and phone number of the physician who changed your doctors written orders for home oxygen therapy...
If they give you a name and number... Report him to your physician and ask if he was called... If your doctor wasn't called report the turkey to the state medical board...
Changing another physician's written orders without consultation and agreement is a breach of medical ethics.
If they can't give you a physician's name and number, ask which of the Federal Pen's they would like to attend for a few years for practicing medicine without a license.
You've got to get tough with these anal-retentive nanny-state bureaucrats and put them in their place!
If they continue to push back on getting you compressed oxygen in the proper sized cylinders, then advise them to expect a call from the Feds, the Better Business Bureau, your insurance company, and the local TV station...
The TV station and your insurance company might find it interesting that a home oxygen provider is attempting to screw you by making more money sticking you with an expensive oxygen concentrator that fails to meet your medical needs rather than delivering the lower cost compressed oxygen prescribed by your physician...
While you're at it, tell them to deliver the larger M-size home oxygen cylinders. These are far more cost effective than the E-size oxygen cylinder.
Even at 15 liters/minute you're going to average 150 to 200 liters per abort. E-size cylinders only hold 700 liters so are for local travel and work.
If you're averaging 3 or more attacks a day/24 hours, you must have the larger M-size oxygen cylinders that hold 3995 liters of oxygen.
If they don't carry the M-size home oxygen cylinders, look for another home oxygen provider.
I keep three of the M-size oxygen cylinders on hand at all times...
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I also average 30 aborts with a single M-size oxygen cylinder... See the hit count marked on the sticky attached to the cylinder above... At full cost before insurance of $30 each, that works out to $1.00 per abort. My co-pay is 20% so my out of pocket cost per abort is 20 cents.
Medicare and Medicaid authorize a monthly max for total home oxygen expenses of $200.
Regarding using a nose cannula at a flow rate of 5 lpm as a prophylaxis for hits while sleeping... I tried it when I was episodic and still got slammed...
There's no question supplemental oxygen will increase oxygen saturation while sleeping. Unfortunately, that's only half the problem. The respiration rate is still depressed during sleep and while a nose cannula and 5 lpm of oxygen will increase oxygen saturation, it does little to lower CO2 levels that will ultimately climb during sleep. Lowering CO2 levels requires more lung ventilation.
Moreover, from the data we've collected so far, an elevated CO2 level above normal and depressed arterial pH below normal or at the low end of the normal range, appear to be contributing factors in the cluster headache attack mechanism as both conditions trigger vasodilation and can easily overpower the beneficial vasoconstriction made possible with hyperoxia.
I've found that taking 3 to 4 calcium citrate tablets with vitamin D, magnesium and zinc washed down with homemade lemonade prior to the evening meal elevates my arterial pH (as measured with saliva pH). A glass of lemonade with the evening meal also works well for me in helping to prevent cluster headaches while sleeping at night.
Take care and please keep us posted.
V/R, Batch