I am finally driven to get an O2 tank...I don't know why I waited so long. I read the O2 tab on the left and see that 15 LPM is the suggested flow amount. I just spoke to the place near my home and the woman said they only have regulators at 5 LPM.

I am going to my Dr. to get the prescription and will go on ebay and find a new regulator...I just can't imagine waiting any longer to relieve myself. Has anybody had any luck with 5 LPM? Thanks.

Nope. I Need  at least 15 lpm.

I live 20 miles outside on NYC and I can't find anyplace that sells regulators. I will go on ebay soon...

davidg wrote on Sep 21^st, 2009 at 9:05am:

I am finally driven to get an O2 tank...I don't know why I waited so long. I read the O2 tab on the left and see that 15 LPM is the suggested flow amount. I just spoke to the place near my home and the woman said they only have regulators at 5 LPM. I am going to my Dr. to get the prescription and will go on ebay and find a new regulator...I just can't imagine waiting any longer to relieve myself. Has anybody had any luck with 5 LPM? Thanks.

I had the same response from my supplier just 5 minutes ago.  The guy got on with and was pretty nice and said his local clusterheads usually have results with 8-10 LPM.  I said about 15 and he said you're really not getting anymore O2 than you would by 8 LPM.  He said that bag needs to be filled and that's the key.  I need to read up on the flow rate again so I have good comeback.  I'm still getting the high flow regulator for my self :)
I'm very new at this and very close to getting it.  It's the "script" and "new neuro" (next appointment in December) part that is holding me back.  I'm going to see if the neuro would write a script w/o seeing me.
It's worth a shot.

Normal respiratory rate is 7-8 LPM (16x0.5 liter)
5 LPM not enough to remove the CO2. Ebuy (eBay) a 15+ reg.

itotka wrote on Sep 21^st, 2009 at 2:51pm:

Normal respiratory rate is 7-8 LPM (16x0.5 liter) 5 LPM not enough to remove the CO2. Ebuy (eBay) a 15+ reg.

Thanks a bunch.  Now I have my answer to reply to the med supply company on "why" the flow rate has to be so HIGH.

I used to have success at 8 LPM, but nothing lower.  This cycle 8 is not working at all.  The advice I got from the wonderful people on this site was to get my own regulator for higher flow.  I got one that goes to 15 LPM on Ebay and now the O2 seems to be working 40-50 % of the time (which is great compared to not at all!).  Now I am considering upgrading to a 25LPM regulator, but I'm not sure if I can even breath more that what my 15 provides.  Anyone have thoughts on this?  I do not fully deflate the bag at 15 LPM, will 20 or 25 make a difference?  Anyway, my thought is that 5 would not be enough.

I'm no O2 expert Jobofish, whereas some on here are much more knowledgeable, but I'm wondering do you breathe rapidly/deeply or even hyperventilate?

Those are techniques used by people on here who get good results, and from my limited experience, that's what empties the bag faster/requires higher liter flow.

I suppose one advantage the ladyfolk may have over the menfolk here is smaller lung size, not as much need for the higher LPM (???)

As an alternative to e-bay, rather than piss around with sending...waiting etc, try your local dive shop (SCUBA) tanks use high flow regs as well and may be able to supply. Over here in Australia I used   START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
Have a look you will se what I mean.

Cheers

5 LMP not a chance!

I have a 15 LPM and that is not enough. Problem is  my o2 supplier will not let me buy my own regulator. The technician has to  switch the regulator from an empty tank to a full one. If I want a second M tank at home I must rent another regulator.

F.....king neanderthals >:(

Yes I have had limited success with 5lpm, 20 yrs ago. With a NON-REBREATHER mask it aborted 25-30% of my attacks. But I was having up to 10 hits a day and when I didn't abort the hits lasted from 1 to 2 hours.

Doctors and O2 suppliers in most cases are not up on modern understanding of CH O2 use. We've had to learn this ourselves. Get the O2 and educate yourself as to the best use.

Most Dr's have little headache training so be prepared for them not to understand what you learn from this site. If they do, great. Be prepared to take action for yourself.

If you can get a script for 15lpm and the supplier won't get it for you, either find one that will or get your own. A NON-REBREATHER mask the one with a bag is required no matter what the lpm.

The most up to date (with fellow CH'rs) is hyperventalation is the fastest way to abort a CH hit. If you can empty the bag during breathing then you don't have a high enough regulator.

Although rare, I have aborted a hit just by hyperventalating alone. I always thought breathing hard and fast would make it worse. Just the opposite for me and many others.

Get the best O2 setup you can afford, even if you don't need higher flow, you can turn it down. Any size regulator has the lower setting also.

Don

Iddy wrote on Sep 21^st, 2009 at 8:15pm:

...my o2 supplier will not let me buy my own regulator. The technician has to  switch the regulator from an empty tank to a full one. If I want a second M tank at home I must rent another regulator...

Can you just wait until the Neanderthal technician leaves and then switch out their worthless regulator for a good one that can be purchased online? Then after draining the tank(s) you put theirs back on before the tech returns.

That's the way I roll.  ;D

Ditto Beejeeber !!!

Don

5 lpm?  Do you have COPD or CH?  (No, I'm not attacking, I'm being sarcastic)  I had little success with 15 lpm, and thought O2 didn't work for me.  Went several yrs w/out, but after the OUCH convention this summer I bought the O2ptimask (the only way to fly IMHO) and got a 25 lpm regulator.  I can now knock out a hit in 5-8 mins, depending on how quickly I get to it.  I still can suck the bag flat when getting hit hard.  I know I'm about done when the bag stays better than half full.  My recommendation is to get a 25 LPM regulator and experiment with the flow rate you need.  If you only need 10-15 great, but if you need more you have it.  The extra cost is negligible when you look at it in the long term.

Jerry

Trying give more understanding. Cluster Headaches is a VERY RARE condition. Dr's see few if any CH patients. Dr's current knowledge in the U.S. only allow them to Rx 15lpm max of O2.

If they actually do research the condition for a patient they may read info that is way outdated. Meaning well but learning little. They don't have the time or the "patients" to do more.

Once we recognize these things it becomes a question of ethics. Should I go beyond my Dr's care, is it legal to get my own regulator? Yes it is.

If you find a regulator supplier that requires a Rx there are many more that don't. There is no law against it.

If you read a lot around the site you will find several regulator suppliers. I have used START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE for a 25lpm. For made to order reg's in any size (including Demand valves) I use START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE. There are others to be found on this site.

Lower O2 flow can and does work for some, but CH research has shown 15lpm to be todays minimum. But with hyperventalation and strong lungs 25lpm+ is the newest minimum.

The above is not common knowledge to most Doctors so don't expect them to agree.

Shoot me,
Don

I use the deman valve and swear by it (it goes up to 60 liters per minute). I can't imagine getting by on 5 lpm.

If you're going on e-bay go ahead and get the 25 lpm regulator. And be sure you get the right mask (you can order one from the ch.store right here on the left). Get the CO2 out and breathe pure O2 and it should make a BIG difference in the abort time.

I just went thru this with a resp. therapist in the hospital last week. She couldn't understand why I had O2 ordered PRN (my doc didn't argue with me) and came in to take my O2 stats (of course it was HIGH). She got a course on CH and didn't come back. :) She just never heard of THAT!!! Imagine that????? :-/

Ya gotta be a little assertative in your treatment. That's how you get relief. It's just a sad fact that the medical profession doesn't see enough of us to keep up on what works...

Hugs BD :-*

Aussie6330 wrote on Sep 21^st, 2009 at 8:02pm:

As an alternative to e-bay, rather than piss around with sending...waiting etc, try your local dive shop (SCUBA) tanks use high flow regs as well and may be able to supply. Over here in Australia I used   START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Have a look you will se what I mean. Cheers

thats a pretty good idea. people have claimed great success with the on demand valves as opposed to the re breather mask. you don't have to have it touching your face and you get a higher flow rate. my reg goes up to 25 lpm. i wouldn't recommend any less. the more the better ;)

Thanks Bejeeber and Don.

I'm going to do just that!

Thank you much for the simple reminder that we must do what is nessesary for us as those who think they know the most don't know as much as they think! ;)

Gratful, Iddy  :)

I'm 6'4", 230 lbs. and have always had success with 7-8 lpm flow rate.

Because you are prince Clusterhead Bob P *tickles*

Bob P wrote on Sep 23^rd, 2009 at 7:16am:

I'm 6'4", 230 lbs. and have always had success with 7-8 lpm flow rate.

And that's a truly wonderful thing.

I agree with Marc!

Wondering about you breathing technique?

Only because I can suck back a bagful in less than one full breath at 15lpm.

I use breathing techniques learned from Yoga and Meditation.

Ever curious ,Iddy :) Smaller in  size and stature.

Bob kinda forgets to breathe now and then. I'll probably do the the same thing when I get as old as he is  ;)

My technique resembles what I learned in the 60's sucking on doobs.  I take a slow, deep breath, hold it for a couple of seconds to let my body absorb the O2 from my lungs, and then fully exhale.

Usually aborts in 7-10 minutes.  The 1 1/2 hour after I fall asleep attacks sometimes take a little longer.

However, being the open minded, liberal thinking person I am, I plan on trying the hyperventillating technique if I ever have another cycle.  I have a 25 lpm regulator and the same mask Marc uses.

Bob P wrote on Sep 24^th, 2009 at 7:46am:

My technique resembles what I learned in the 60's sucking on doobs.  I take a slow, deep breath, hold it for a couple of seconds to let my body absorb the O2 from my lungs, and then fully exhale. Usually aborts in 7-10 minutes.  The 1 1/2 hour after I fall asleep attacks sometimes take a little longer. However, being the open minded, liberal thinking person I am, I plan on trying the hyperventillating technique if I ever have another cycle.  I have a 25 lpm regulator and the same mask Marc uses.

Commie.

pete needs to write a book on this. he has it down to a science.


Batch wrote on Sep 18^th, 2009 at 9:20am:

You raise two good points about oxygen therapy that need to be explained. An increase in the frequency of attacks after starting oxygen therapy is very common and strangely enough, a good sign the oxygen therapy is working effectively. Here's why:  1.  You are likely achieving aborts with oxygen therapy at lower pain levels but the time to abort at the higher pain levels are taking much longer. What we've found over the last few years while a flow rate of 12 to 15 liters/minute may be effective for low level hits at pain level 5 and below, flow rates this low will not be effective due to longer abort times greater than 20 minutes for attacks at and above pain level 6.   This basically proves the fact that there is a direct relationship between time to abort with oxygen therapy and increased pain levels.  In short, the higher the pain level after starting oxygen therapy, the longer it will take to abort the attack. 2.  Flow rates that support hyperventilation have also proven to be more effective up to pain level 9 with shorter abort times ~ an average of 7 minutes. 3.  Aborts with oxygen therapy at flow rates that support hyperventilation are frequently so short they abort the pain of the cluster headache but not the cluster headache triggering mechanism.  When the effects of oxygen therapy at flow rates that support hyperventilation dissipate and the triggering mechanism is still present, the attack resumes...  this frequently takes 15 to 45 minutes.  We call these attacks "Re-Attacks" rather than "rebound headaches" as a rebound headache signals a built up resistance to a headache medication...  and if you had a resistance to oxygen, you would have assumed room temperature a long time ago and would not be here to post. 4.  The frequency of re-attacks tends to start dissipating during the 3rd to 4th week after starting oxygen therapy and are completely gone or significantly reduced by week 8. 5.  The incidence of re-Attacks can be reduced significantly by staying on 100% oxygen long enough after the abort to bring the total exposure time up to 15 minutes.  You do this by aborting your attacks at the higher flow rates that support hyperventilation and as soon as the pain is completely gone, reduce the flow rate to support a normal respiration rate for as long as it takes to bring the total time on oxygen up to 15 minutes. An increase in the time to abort is a different problem.  We are not sure just why this happens, but it appears the longer abort times are due to a decrease in blood pH (too much acid). When this happens, the triggering mechanism becomes more effective as a low pH causes more cerebral vascular dilation making the attacks more painful.  The low pH also makes abort with oxygen therapy or any other abortive take much longer. One of the things I do when this happens that tends to help is to take calcium citrate with vitamin D, magnesium, and zinc tablets (3 to 4) prior to the evening meal.  These tablets act as a buffer to bring blood pH back to neutral.  If you don't have any of these on hand, Tums are a good source of calcium in a pinch. Hope this helps. Take care, V/R, Batch[/size]