Hi.  I've had CCH for 20+ years now.  For the past 5 or so I've used high flow oxygen through a demand valve to great success.  Unfortunately when I replaced my mask the old one with a small orange colored firm-rubber "gasket"/mouthpiece that I put to my face is no longer available.  Only ones with slightly inflated / "puffy" mouthpieces are provided these days, and they make me claustrophobic.  Does anyone know how/where to get the old-style masks?  I've looked all over.  Thanks.

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Mouthpiece in lieu of mask. Same quantity and quality of O2 delivery. Your call.

Going through 3-4 full attacks a day right now, so bear with me - a rant is coming:

Ok, thank you for finding the mask that I like (the orange one) but it is only available in the UK.  I tried getting it here in the US and the local distributor doesn't carry it any more and can't order it.  I got a version of what the US distributor does carry (what's currently supplied with the Optimask - the Quadralite) and its not to my liking.  It will suffice, but not ideal.  (For the record, Intersurgical has been very good to deal with, they just can't supply directly to consumers).

I'd like to order more of the Ambu-masks that Lifegas used to supply and they don't seem to carry it (plus they are impossible to get in contact with).  Then I tried going to the healthcare supplier the manufacturer suggested (Apria) and they won't supply me because I don't have the right insurance.  I told them I don't care about insurance I'll pay cash and the still won't work with me.

The local health company I get my oxygen tanks from won't order the "anesthetic" masks because my neurologist's script is for a non-rebreather mask and the dr. won't budge.

At this point I'm pretty sure it'd be easier to score heroin to treat the headaches than a damn quality oxygen mask!!! (fear not - not going there)

Sooooo, does anyone have any idea how I can get my hands on either:
1) Ideally the orange Intersurgical mask (Size 6 Ecomask) that used to come with the Optimask kits (in the US - and I'd pay to ship them here - I'll even buy a worthwhile quantity - 10 or whatever to make it worth while)
2) The Size 5 Ambumask - again, I'd like 2 or 3 of those since this has proved so difficult.
3) The Quadralite Size 4, as a last choice.  Again - due to the difficulty I'd be happy buying 10 or something.

In all cases I do not need the whole Optimask kit - I have a demand valve I use plus I already have 2 Optimask kits minus the masks I want.  I do NOT like the newer mask with the innertube type fitting - they make me claustrophobic.     GRRRRRRRRRR.  Sorry for the rant - very frustrated! 


Any help would be greatly appreciated. :-)

Hey CHMatt,

I know the frustration... In 2006 when the Clustermasx, (packaged and sold from the UK by a CH'er), ceased to be available, a few of us worked on Linde and Linde/LifeGas to offer the O2PTIMASK™ that DJ carried before the ClusterO2 kit he now offers.

Now here's the straight scoop... You don't really need the facemask.  You can abort your headaches faster breathing straight from the green "T" manifold.

The real reason is doing this traps less exhaled breath, highest in CO2, between the mouthpiece and exhaust port in the green "T" manifold.

The breathing technique used during oxygen inhalation therapy as an abortive for cluster headache is also very important.

This technique is called breathing at forced tidal volume capacity.  It starts by exhaling forcibly and rapidly.  When it feels like there's nothing left to exhale and your lungs are empty... they're not... Do an abdominal crunch like doing situps until your exhaled breath makes a wheezing sound for a few seconds, then inhale room air rapidly and fully. 

This breathing technique will squeeze out another half to a liter of exhaled breath highest in CO2 concentration. Do this standing and breath from the diaphragm.  This ventilates the lungs more completely.

Repeat this sequence two more times with room air then at the end of the third forced exhale cycle, inhale a lungful of 100% oxygen and hold it for a few seconds.

Now repeat the entire cycle, three breaths of room air and one of 100% oxygen.  If you're doing this properly, you'll start feeling the symptoms of paresthesia, a very slight tingling or prickling of the fingertips, lips, and back of the neck.  You may also experience a slight dizziness. 

These symptoms indicate you've pushed your respiratory and circulatory systems into respiratory alkalosis (made it more alkaline) by casting off CO2 faster than your body generates it through normal metabolism... 

All this triggers a very rapid cerebral vasoconstriction and super oxygenates the blood flow to the brain.  This in turn helps abort your cluster headache much faster than breathing oxygen at a flow rate of 15 liters/minute...

This is a very safe breathing technique.  I've used it since early 2005 and have yet to pass out during a cluster headache... even when I wished that would happen.  The symptoms of paresthesia clear in a matter of seconds once you start breathing normally.

Practice on room air until you feel the symptoms of paresthesisa...  If you get too dizzy, lean against a wall or sit erect in a chair.  Avoid hunching over your knees as this restricts lung ventilation and that slows the abort process.

Take care and please keep us posted.

V/R, Batch

Batch,

Thanks for that very informative reply!  I've been using O2 with a demand valve and have been using the hyperventilating method for years with great success. 

Although highly skeptical of your approach using 3 breaths of fresh air to every hit of O2, I gave it a try and, to my surprise, it worked!  I'm not sure if it aborted the headache any faster or not, but I'd say it was equally fast, and since it results in 1/4 the O2 usage I'm all for it (especially when away from home with the E tanks!).  Plus, when alternating between regular air and O2 the mouthpiece does indeed work better than any mask would.

Now I must ask - why alternate fresh air and O2?  Why not just use regular air if my end-goal is to drive my CO2 levels lower?  What is this every 4th breath of O2 buying me that wouldn't be accomplished hyperventilating and using regular air?  (I'm an engineer, so I'm not going to rest until I understand this :)  .)   Thanks.

Hey Matt,

Glad to hear the suggested breathing technique "Squeeze til you wheeze" and 3:1 Room Air to 100 O2 breathing sequence is working well for you... 

Good question and we engineers need good answers...

For starters, intentionally blowing off more CO2 than your body generates through normal metabolism by hyperventilating at forced vital capacity tidal volumes until you reach respiratory alkalosis is equally important as hyperoxygenating blood hemoglobin by breathing 100% oxygen as CH abortive factors.

When combined, these two factors have a synergistic effect on lowering CH abort times... 

The secret comes from the combined vasoconstrictive properties of hyperoxia, hypocapnea, (lower arterial partial pressure of CO2 than normal), the resulting elevation in arterial pH, and the fact that hemoglobin's affinity for oxygen increases proportionally with elevations in pH, i.e., the Bohr Effect. 

The net effect is a super-oxygenated flow of blood to the brain with rapid and pronounced vasoconstriction.

On top of that, chemo receptors in brain and large arteries that signal our breathing control center, sense the elevated pH and low CO2 concentration.  Together they trigger a homeostatic response to bring PACO2 levels back up to a normal range. 

That homeostatic response includes a very rapid and pronounced level of cerebral vasoconstriction, a slowing of heart beat and reduced respiration rate...  It does all this to reduce the loss of CO2 from the lungs...

However as we're intentionally overriding our breathing control center's signals to reduce the respiration rate by hyperventilating, we keep our respiratory systems firmly in respiratory alkalosis with a super-oxygenated blood flow... and in the process, we experience a rapid CH abort.

The opposite happens when holding your breath or breathing 100% oxygen too slowly while dancing the CH 2-step.  In this case, arterial CO2 levels rise.  The elevated arterial PACO2 triggers vasodilation, increased heart beat and increased respiration rate... 

Unfortunately when lung ventilation is restricted to 7 to 9 liters/minute or even up to 15 liters/minute by the oxygen regulator and non-rebreathing oxygen mask... CH'ers get caught between a rock and hard place because there's insufficient lung ventilation to expel the excess CO2. 

Excess CO2 has a more powerful vasodilation effect than 100% oxygen's vasoconstriction effect and that makes an abort with oxygen therapy next to impossible under these conditions.

Hyperventilation with room air alone works fairly well aborting low pain level CH (3 to 4), but falls on its face by pain level 5 to 6 where at best it stops the pain level from rising...  Above pain level 6, hyperventilating with room air is basically useless...

Regarding the use of an Oxygen Demand Valve...  If used properly with the same breathing technique to cast off CO2 and using 100% oxygen with each breath, an oxygen demand valve or a 0 to 60 liter/minute InGage™ regulator equipped with an O2PTIMASK™ kit will produce the fastest abort possible.

The following graphic from the 2008 study we conducted with demand valves and 0 to 60 liter/minute Flotec InGage™ regulators equipped with O2PTIMASK non-rebreathing masks clearly illustrates the advantage of oxygen therapy at flow rates that support hyperventilation. 

We had seven participants in this study, six chronic and one episodic, six men and one woman...  4 used the demand valve and the other 3 used the InGage™ 0 to 60 liter/minute regulator and O2PTIMASK™ kit.  Abort times were the same indicating both methods were equally effective.

They all logged abort times and pain levels for every abort over an 8 week period so the data is statistically significant...

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There's a couple things to take away from this graphic...  The first is oxygen therapy at flow rates that support hyperventilation can generate aborts 3 to 4 times faster than oxygen therapy at a flow rate of 15 liters/minute. 

The second finding has never been reported by any other study of oxygen therapy as a CH abortive...  and that is there's a direct relationship between CH pain levels and abort times... The higher the pain level at start of therapy, the longer it takes to abort.

Both methods were 99% effective... and we had only one failure out of 367 attempts.  That failure occurred when the participant got hit while out for a walk and returned home to find he was locked out of his house.

By the time he broke into his house and got on his demand valve, his CH pain was already at level 10...

I developed the basic procedures for hyperventilating with 100% oxygen to abort my CH in 2005.  As this was my only way of controlling my CH at the time, I became very proficient at this procedure.  As a result my abort times averaged 3 to 4 minutes so I didn't include my data in the study report.

Another important finding is using a demand valve doesn't guarantee a rapid abort... 

We had one participant who dropped out of this study after two weeks due to another medical problem.  He used the proper breathing techniques and procedure for the first five days then decided he didn't like the sensations of paresthesia associated with respiratory alkalosis.   

At that point he started breathing oxygen normally through the demand valve without hyperventilating...  You can see the results in his abort times...

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I hope I covered everything...

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As a side note, I keep an oxygen system handy... but only use it when doing a burn down test of my 25(OH)D reserves...  or doing demos for visiting CH'ers and migraineurs.  Yes... this method of oxygen therapy works for migraineurs to abort their headaches just as effectively.

You can read into that statement that the anti-inflammatory regimen with at least 10,000 IU/day vitamin D3 keeps me totally CH pain free except when I intentionally stop taking it for seven to eight days...  The rest of the time, my oxygen system stays bagged to keep from collecting dust.

Take care,

V/R, Batch