Oxygen was delivered today, very excited about that: first time in 10 years someone actually prescribed o2 for me.

However I was very upset to see not only didn't I get a non-rebreather  mask, only a nasal breather, but the regulator only goes up to 8.

I'm fairly positive I can get another mask but the flow on the tank makes me nervous. I'm assuming it is what was prescribed.

I'll try it tonight and see what happens during an attack. Anyone have any luck with rates less than the desired 15?

You can get the non-rebreather mask here and a new regulator on ebay. 8 lpm doesn't do much for most here. 15 lpm or more is infinitely better, in my opinion.

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Yes, people have reported good success with 8 lpm.

I personally feel that 40 lpm is infinitely better than 25 lpm.

For me it's pretty simple: whatever works for you is what you need.

7 to 8 lpm works for me.  Aborts the attack within 10 minutes.  Definately need a non-rebreater mask though.

BTW - I'm 6'4", 230 lbs.

As Marc said.....you will find out what works for you by trial and error.

That's how things seem to work in our corner of the world.

Glad to hear you have the o2!

Iddy :)

Bob P wrote on Apr 10^th, 2010 at 8:31am:

7 to 8 lpm works for me.  Aborts the attack within 10 minutes.  Definately need a rebreater mask though. BTW - I'm 6'4", 230 lbs.

Ok good. I feel more hopeful now. I'm 6'6" 205. (A bit more with a bit less.  :) ) Glad to hear someone with similiar build had some good results.

Got a non-rebreather mask today. Had two attacks last night and the nasal one did absolutely nothing.

Thanks so much everyone for your feedback!

Just a reminder a NON-rebreather has a bag on it.

Don

I hope it works for you, but don't be disappointed if it doesn't.  At that low a flow rate I would be sucking the bag flat faster than the oxygen could get in, and i would have to take the mask off to breath.  That negates whatever the O2 has done to that point.

All the best,
Jerry
5'8" 195

I set up an account in a new city and when I got the oxygen it came with an 8 lpm tops.  It did absolutely nothing for my headaches that night.  I bought one online for $53 that goes up to 15 lpm and have been using it ever since - 15 gets rid of the headache within 5 minutes (for me!).

When I first started using O2 for CH back in olden times, I was using 8-10 LPM with a crummy standard issue cannula and it was working (!!).

It seems like over the years the severity of my CH has gotten worse though, and that approach will no longer do anything for me. It's Hi LPM non-rebreather or nuthin'.

Here's hoping the lower LPM approach will work for you - as we've seen,  it is possible.  :)

Kudrow: Response of Cluster Headache Attacks to Oxygen Inhalation (1981)
"100% oxygen was administered through a facial mask at a rate of 7 liters per minute, for 15 minutes. ... The greatest benefit (92.9%) was found among episodic patients under 50 years of age."

IMHO O2ptimask and 15+ LPM is much more better. I'm completely painfree in 3 mins on 40-60 LPM.

So far jury still out on O2.

One attack, 10 mins on, 10 off, then 10 on - pain still present but could fall back asleep.
Next attack about two hours later after 10 minutes on, it quickly climbed to a Kip 7 or 8. At that point I decided to save my O2 and wrestle with it.

Last night I was lucky to be pain-free.

I'll keep trying. Wondering if it is better to try different breathing. Normally during an attack I hyperventilate; many short quick breaths.

Any advice?

Thanks so much guys!

XOMR

Circus1031,

The jury is actually very accurate in their comments.  A flow rate of 8 liters/minute using a properly functioning non-rebreathing oxygen mask will work in many cases at the lower cluster headache pain levels... if you start the oxygen as soon as you feel the onset symptoms of an approaching attack... 

Once the pain has reached the point where the eye and nose start to gush, you'll likely be at a Kip-6 to Kip-7 pain level.  At that point, the odds are against you and an abort with 8 liters/minute is unlikely or it could take a long time. 

If the pain is such that you start the cluster two-step dance or you're head banging on the carpet or wall,  an oxygen flow rate of 8 liters/minute is useless. It may even prolong your attack due to CO2 buildup because of insufficient lung ventilation when constrained by the low oxygen flow rate and non-rebreathing mask.   The increased physical activity associated with the higher cluster headache pain levels requires much higher lung ventilation volumes than 8 liters/minute to clear CO2.  25 liters/minute is not unreasonable.

As a suggestion, call you home oxygen provider and ask for a regulator good for a flow rate of 25 liters/minute and a properly configured non-rebreathing oxygen mask with all three check valves (2 exhaust and 1 inlet)...  Tell them you suffer from cluster headaches NOT COPD and that you need the higher oxygen flow rates as an abortive for cluster headaches and not as supplemental oxygen for COPD with a nose cannula.

I your home oxygen supplier balks at 25 liters/minute, ask for a regulator good for 15 liters/minute.

If that fails, call the physician who prescribed your oxygen therapy and ask what he or she indicated in the Rx...  If it was written for an oxygen flow rate 15 liters/minute with a non-rebreathing oxygen mask, call your home oxygen provider and ask for the name of  the physicians in their organization who changed your doctors prescription.  If there was no physician, advise them that changing your doctor's prescription amounts to practicing medicine without a license and that's a Federal offense. 

If your physician wrote the Rx for 8 liters/minute, plead the same case for a flow rate of 25 liters/minute and a fallback of 15 liters/minute.

You may need to send your physician the following standards of care for the proper treatment of your cluster headaches.

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It's also a good idea to read the post on "How To" obtain a proper prescription for oxygen therapy at the following link:

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It addresses the problem you're having to a "T" and contains some downloads at the end of the post that you can print and send or take with you to your physician when you ask for the higher flow rates.

Finally, most of us who use the higher oxygen flow rates above 25 liters/minute have purchased our own 0 to 60 liter/minute regulators and love them or we use a demand valve with one of these regulators and love it too. 

Please feel free to PM me and I'll be happy to send you the contact info and ordering specifications as they build these regulators to order.

Take care,

V/R, Batch

I use a demand regulator, so when I inhale, I get 100% O2.  I can often abort a headache within about 5 minutes.  It can't be beat (for me).

Ray

10-12 LPM worked for me at first, from an H tank with a "real" gauge.  In my last cycle I was delivered an M tank with the more typical fixed setting gauge, topping at 15 LPM.  This time 15 LPM was necessary to abort attacks.

I could abort most attacks in 6-7 minutes, but I would stay on for a total of 15 minutes, or maybe 18-20 if the abort took longer.  On a few occasions using O2 for only 10 minutes, I would get a recurring (often worse) attack 20 - 40 minutes later, but with 15 minutes on O2 this did not occur, so that became my new minimum.  I've tried the Apria supplied NRB mask, and the O₂ptimask with similar results (both good).

The attacks that started while asleep were the hardest to knock down, as the Beast would get a good head start before I woke.

For administering O2 my HA specialist taught me to sit, crouched over, facing the floor, and breathe the O2 normally.  He said this (facing floor) would work better, so I generally do (can be tricky in high KIP attack).  This may sound like a calm, relaxed way to "do O2", but you betcha I breathe long and hard when those high waves of pain roll in, while rocking, jumping and dancing as needed.  Then I grab a new tissue, sit and face the floor again.

Keep fighting with the O2 and good luck.

Fox

Many of us O2 users have found that bending over restricts breathing. Sitting or standing straight is better for max breathing.

But we're all different.

Don

I've got a O2 compressor that goes up to 10lpm and it works for me.  However, I'm a very light sleeper so I tend to be able to wake up and get on the O2 when I just have a shadow before the real pain hits.  The O2 knocks out the pain in 10 min or less. 

I will say this - don't give up if O2 at that low a level isn't 100% effective .  I was stuck with a 5lpm compressor and I found that with that level of O2 I was still able to knock out the pain, but it would return an hour or so later.  I got hit 4 hours in a row one day while using only O2 at only 5lmp.  So that may also happen for others.

Good luck

XOMR wrote on Apr 12^th, 2010 at 9:47pm:

So far jury still out on O2. I'll keep trying. Any advice?

A regulator that can get to 15Lpm would be a good starting addition.  I'm ok with 10-12.     5' 11"   148lbs.

Thank you everyone so much for your feedback!! :)

Since the original post I got a regulator that goes to 15 bpm using a non rebreather mask. I've had some positive results. It hasn't been a miracle but it's helped a bit.

So far O2 @ 15 for 10 -15 minutes helps abort hits if I catch them early enough. But like super early; if I hesitate at all it doesn't to do much. It seems to plateau the pain, never really getting past a 5 or 6, but it'll linger for a while afterwards
Other times after 15-20 minutes it doesn't do anything. And with an "E" tank going at 15 I'm burning through o2 quicker than I like.

Not giving up.

Again, thanks so much for all your support!!

XOMR

Prolly won't make much sense to you but 25lpm would work better and use less O2 over time than the 15lpm reg. That has been my experience anyway.

XOMR wrote on Apr 19^th, 2010 at 9:23pm:

using a non rebreather mask.

Take a look at Deej's stickied thread above about an Optimask.

But presently, using what you have, make sure the mask is held and sealed firmly to your face so as to breathe only the pure oxygen.  Tape shut any side valves, removing the mask to exhale each time.