I'm going to break my New Year's resolution before I even make it...  Please see your doctor for a prescription for oxygen therapy!  It's hard... but understandable to hear about a doctor or neurologist treating a cluster headache sufferer who fails to make oxygen therapy the first choice as an abortive...  

Folks...  This is really silly...  Living with cluster headaches without having oxygen therapy as the first line of defense in aborting attacks is like opening the front door in the middle of winter with the goal of warming the neighborhood...  You can't get there from here!  You're only whistling in the dark and subjecting yourselves to needless pain...  It works... and the risks are minimal.  The alternative of taking a mixed cocktail of very invasive drugs and all with some serious side effects begs the question of risk vs reward...  That's a question you need to discuss with your doctor or neurologist...  after he or she has written a proper Rx for oxygen therapy.

Yes... I can hear the chorus of complaints from the naysayers that, "oxygen therapy doesn't work for everyone...” To that I say, "It's possible... but the very few that this actually applies to must come from an different planet or have the metabolism of the tube worms that grow next to the black smokers 2000 feet deep in the ocean along the ring of fire..."  I'll also say, "How long did you try to make oxygen therapy work, did you have the right kind of oxygen mask, and what was the flow rate?"

If the oxygen flow rate is high enough to support hyperventilation, oxygen therapy will abort attacks from Kip-3 up to Kip-9 in an average time of 7 minutes...  It's safe too!  That's based on data collected on over 500 aborts from folks among you that have been using this method of oxygen therapy correctly.

Yes, there are other medical conditions that will interfere with this method of oxygen therapy and make it less effective...  These conditions include diabetic ketoacidosis, metabolic acidosis, renal insufficiency, low cardiac output...  and there may be others, but these are the biggies... If you have any of these conditions along with cluster headaches... SEE YOUR DOCTOR!

I posted the following a few days ago but there were less than 40 folks that took the time to read it so here it goes again.

Do yourself a favor and ask your doctor for a prescription for oxygen therapy.  It’s much safer than other prescribed abortives.  It also aborts the pain of cluster headache attacks for most users faster with a lower cost per abort if used early at high enough flow rates and there are no other medical conditions that prevent it's effectiveness.  It works even faster at flow rates that support hyperventilation.

The minimum flow rate that supports hyperventilation is 25 liters/minute.  However, primary care physicians and neurologists will only prescribe a maximum flow rate of 12 to 15 liters/minute and Home Medical companies that provide the oxygen and equipment only carry regulators capable of 15 liters/minute.  You may need to buy one of these regulators.  It's worth it!

Many insurance companies use existing but antiquated Medicare and Medicaid coverage rules that treat prescriptions for home oxygen therapy as a supplement for COPD type disorders. These rules require a physician's certification of medical necessity.  A physician's certification of medical necessity for oxygen equipment must include the results of specific testing for oxygen saturation before coverage can be determined and claims approved.   In short they assume the home oxygen and equipment will be used as a supplement, and not as an abortive for the pain of cluster headache attacks.

If you only have cluster headaches and no other respiratory or circulatory disorders, any tests of your oxygen levels done by arterial blood gas or oximetry will result in normal readings. That will be grounds for the insurance companies to refuse to cover your claims for oxygen therapy.  

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 prescriptions 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 12-15 liters per minute for 20 minutes per hour, up to 12 times per day.”

Most doctors will want to see you more frequently than once a year to review the efficacy of prescribed treatments, but ask for a year’s supply anyway.  This will add “Refills for one year.” to the above prescription.  If oxygen therapy is working well for you remember to call your doctor before the year is up so the Rx for oxygen can be renewed without a break in service.

The prescription needs to specify the type of oxygen breathing equipment to be used.  The recommended prescription above already states “non-rebreather mask” to avoid being sent a nose cannula that is useless at the higher oxygen flow rates needed for cluster headaches. The available oxygen delivery systems include gaseous oxygen (GOX), liquid oxygen (LOX), and oxygen concentrators.

Ask your doctor or neurologist for GOX.  It’s normally delivered for home use in large oxygen cylinders (M60, M, H, and K-sizes in the US) and the smaller portable oxygen cylinders such as the E-size for local travel and work.  

The advantage of using GOX comes into play when you want to use regulators capable of higher flow rates.  There are several constant flow regulators that deliver up to a flow rate of 25 liters/minute and a few that go higher.  There’s also a demand valve.  These are similar to a SCUBA regulator and easy to use.  They deliver oxygen on demand as soon as you start to inhale. The harder you inhale, the more oxygen they deliver.  As there’s no flow meter on a demand valve, you control the oxygen dosage with your respiration rate.

GOX is usually the most cost effective in terms of cost/abort if you use the larger home size cylinders.   If you’re having more than three attacks a day/24 hours, order at least two M-size cylinders and at least a three-day supply of the E-size.  The average abort will consume from 125 to 200 liters of oxygen so an E-size oxygen cylinder that holds 700 liters of oxygen will be good for 3 to 4 aborts.  The M-size oxygen cylinder holds 3995 liters so should be good for 20 to 30 aborts.  Once you’ve established a usage rate, you can order refills accordingly.  It’s no fun running out of oxygen on a Friday evening, as most home medical providers don’t deliver on weekends.

Liquid oxygen (LOX) systems are normally delivered in a large reservoir holding 20 to 40 liters of LOX with a smaller portable 1-liter dispenser.  LOX expands at a ratio of 860:1 so a 1-liter dispenser will deliver up to 860 liters of gaseous oxygen. Home LOX system can only deliver a little over 15 liters/minute without freezing up.

Oxygen concentrators are basically useless when used to abort cluster headache attacks, as only a few models are capable of 15 liters/minute but no higher.

Having said that, LOX systems and oxygen concentrators will work in a pinch if GOX is not available.  Oxygen therapy at 15 liters/minute is also better than nothing.  

You also need to be aware that some home medical oxygen providers will try to pressure you into accepting LOX or oxygen concentrator type systems even though the Rx specifies GOX. They try this because they can charge your insurance company more each month than they could with GOX cylinders.  If they try to pull this stunt on you, just tell them “No Thanks. If you can’t fill my prescription as written, I’m taking my order for oxygen to another provider.”    

It’s always wise to shop around to see who has the best rates even if your insurance company is covering most if not all of the expense.  You may need to pay a percentage of the total monthly cost as a “Co-Pay” so getting the best rates on refills and equipment rental is important.

Hope this helps.  I really do...  Have a Happy New Year!

Take care,

V/R, Batch

Brian,

My friend, you are having Re-attacks!  Re-attacks are very common and surprising as it may sound, they are also a good sign you're using oxygen therapy properly.  What happens with a re-attack is you are aborting the pain of a cluster headache attack... (That was the goal...), but you're not aborting the triggering mechanism.

When the physiological effects of oxygen therapy dissipate (these include hyperoxia and respiratory alkalosis with hypocapnia and an elevated pH), and the triggering mechanism is still present, Wham-O!!! you have a re-attack as we call them.  If you're ready for it, you should be able to start the oxygen therapy early and abort a re-attack just as fast if not faster than the first attack.

Re-attacks will hit anywhere from 15 to 45 minutes after a successful abort, and they tend to increase in frequency during the first two weeks of oxygen therapy... if you do nothing to stop them.  I've had as many as three in a row until I figured out how to stop them.

We've found if you stay on 100% oxygen, but at a lower more comfortable oxygen flow rate /respiration rate after the abort in order to bring the total time on 100% oxygen up to 15 minutes, the incidence of re-attacks drops significantly.  If you are still having re-attacks after 15 minutes total exposure time to 100% oxygen, jack the total time on oxygen up to 20 minutes and up the flow rate a little...  That should eliminate any re-attacks.

We've also found that re-attacks tend to dissipate around week 3 to 4 all by themselves when using the high flow rate therapy that supports hyperventilation (that's a minimum flow rate of 25 liters/minute...  A higher flow rate works even faster to abort your attacks) on a regular basis for all attacks including shadows...  If you're not feeling a little dizzy with a tingling of the lips, face, and extremities, (that sensation is called paresthesia), you're not hyperventilating enough to push your system into respiratory alkalosis...  Breathe the 100% oxygen a little faster and more deeply.

Sooo....  Any mate with a bonzer slouch hat is clearly not a tube worm...  or from another planet.

And, if you're stuck with only a 15 liter/minute oxygen regulator... Get a second tank and regulator then make a trip to Pets-R-Us and go to the fish tank section and buy yourself a fish tank air hose "T" connector.   That will let you gang the oxygen tubing from two oxygen cylinders (and regulators) into a single line to your NRB mask...  With a little luck and not too much line loss, you should be getting a flow rate of 27 to 29 liters/minute...  And that would be all wool and a yard wide...  It's also Good oil...

Take care,

V/R, Batch

Brian,

Well said...  Have a Happy New Year...

And put me down for a case of Fosters.  We gotta do all we can for the tube worms...

Take care,

V/R, Batch

Are you holding out on me Brian?  WHEN were you going to introduce me to these wonderful creatures?  

Hmmm???

Chuck