Hi all,

Trying O2 again, past experiences didnt work so well because I used a nasal cannula and a low flow rate- thanks to this site, I knew enough to get the right mask and regulator and tried it for the first time last night.

Instead of my normal 11pm/4am/6am bouts, I had a 11pm, 1am, 4am, 5:30am series of attacks.  The first and third went away after about 10min, never going beyond  kip3 or so.  The 2nd and 4th attacks however lasted a full hour (using the o2 the whole time), but thankfully never got above a kip6.  All in all a success, but still lacking much sleep.

Should the o2 be knocking these out quickly, or is the hour-long kip5-6 expected?  I have a crappy non-reb mask from apria that I will likely replace quickly with the o2ptimask, but i feel i got a good seal with a little effort.

Thanks for all your inputs!!

Bill

My personal experience (emphasizing my own experience) is that if the O2 hasn't worked within 10-15 minutes it isn't going to. Most times if O2 is going to work for me it is in less than 10 minutes.

Then, if need be, I go to the second line of defense, and if bad enough I hit an injection of Imitrex.

The math for me is that 70-80% of my hits are quelled by O2 which drastically cuts back on the use of the imitrex to one in five hits, or less.

Get the better mask. Make sure you're getting to the O2 as early as possible. Glad to see you're getting some results - but don't give up.

Scott

Bill, in addition to what Scott said, it is also important not to stay on the O2 for longer than 20 min. at a time.

Hope that with more frequent use and a good mask, that you'll be able to knock each one out faster from now on!

:)mel

Bill,

I have noticed in the past that the O2 supplier masks have a reservoir bag that is way too small (unless you are a gold fish). If this is the case, try a large freezer zip lock bag, carefully trim one corner off so you can just get the valve-inlet body through from the inside so as not to make the hole too big. Flip er around and tape er up! The bag needs to be big enough to hold a full breath or bigger…

Roland. ;)

Melissa wrote on Dec 9^th, 2008 at 9:22am:

Bill, in addition to what Scott said, it is also important not to stay on the O2 for longer than 20 min. at a time. Hope that with more frequent use and a good mask, that you'll be able to knock each one out faster from now on! :)mel

Thanks folks.  Mel, I was on it for more than 20min for 2 of the episodes last night, what is the danger in this?

Thanks,
Bill

Bill, I stay on it until the pain goes away. I have at times gone over an hour. Even if it does not abort, it lessens the pain level.

I am confident that if you had a regulator that goes to 25 LPM and an adequate mask / large enough reservoir bag, you would see the difference.

Rolo. ;) 8-)

bsic wrote on Dec 9^th, 2008 at 10:15am:

Melissa wrote on Dec 9th, 2008 at 9:22am: Bill, in addition to what Scott said, it is also important not to stay on the O2 for longer than 20 min. at a time. Hope that with more frequent use and a good mask, that you'll be able to knock each one out faster from now on! :)mel Thanks folks.  Mel, I was on it for more than 20min for 2 of the episodes last night, what is the danger in this? Thanks, Bill

Perhaps I was a little too hasty in my saying not to breathe longer than 20 min.  In the past this is what we were told, but (and my memory isn't working well on this info., perhaps someone more knowledgable on O2 will chime in) I think it is outdated.

Sorry! :-[

Love you more then life itself Melissa... ;)...but yeah that's outdated info. Batch, the resident oxygen guru, regularly recounts how he'd breathe 100% 02 for hours at a time while on fighter jet missions with no ill effects!

A suggestion. Some of us find while oxygen knocks the beast out, he comes back quickly. For me, within 10-20 minutes of shutting off the 02, he's back again. A vicious cycle. What I've been doing is popping an oral cafergot, an old school CH med, when I started the oxygen. Oxygen knocks it down, cafergot buys me up to 12 hours pain free time. Several otheres on the board have posted similar success with this method

Others have posted similar results by knocking down an energy drink, Rock Star, Monster, etc. when they started the oxygen and had similar success. I intend to try that next cycle....fortunately my fall cycle forgot to show up this year....oh yay!!! Might be worth trying the energy drink route first, see if it works better then just the oxygen alone.

Guiseppi

That's why I don't have a button! ;D

Thanks Guiseppi. :)

Guiseppe,  do you find the energy drinks in the middle of the night keep you up after the CH has faded away?

Also, I got a CH on the way to work this AM (odd time for me, never usually get them at that time), and quickly pulled over to grab a red bull at 7-11.  It disappeared in a few minutes, i wasnt sure if it was just a mild one or if the red bull helped.   Either way, another possible help technique I learned from reading yall's past posts.  Man I love this forum so far.... :)

What size tank(s) are you using and what flow rate?

An E tank only holds around 680 liters of O2, so that would give you just over 11 LPM for 60 minutes.

I may be missing soemthing, but if you had (2) sessions at 10 minutes, and (2) sessions at over an hour - you went through more than two E tanks or your flow rate was really low.

I would try kicking the flow way up and really breath deep/fast for at least the first few minutes. I tend to be a little over zealous about this topic, because I suffered waaaay too long before I learned to slam the flow rate up.

If it saves a real Clusterhead even one minute of a true K10.........

Marc

bsic wrote on Dec 9^th, 2008 at 8:04am:

I have a crappy non-reb mask from apria that I will likely replace quickly

Hi Bill,

Did you tape the holes on the sides of that mask?  The cheap masks are usually missing a valve.  Are the valves working correctly?  

One of the keys is to get 100% O2 with no room air!  That means getting a good seal on your face too.  Personally I prefer a mouth tube.  It works better with facial hair and my nose is blocked anyway.

Mark is right on with his observations on flow rate.

Guiseppi has it right on the energy drinks.  When I'm not on Verapamil I'll slam a can of Rock Star before hitting the O2 a 2nd time.  That'll usually do the trick.  

When all else fails, then I turn to my autoinjector.

I have an M tank i believe, its huge.  Im using 15lpm as the flow rate based on what I read on here.  I inhale and make sure i have a tight seal with no room air, and crack the mask to exhale.  I didnt tape the holes, but used my thumb to seal the holes on the side which doesnt have the little circular valve on it.   Ill tape it up tonight, thats a great idea.

The one thing i have to check is that none of my breath is inadvertently going back INTO the bag, ill inspect when I get home in a few hrs.

Thanks-
Bill

I'm the supporter, not the sufferer, but Gary found that the caffeine would kill any hope of sleep - but he doesn't get much because of the CH to begin with.

As to the 02, it's important to get the hit as soon as you realize it's coming.  That'll help improve the success rate.  :)

Take Dennis' and Rolo's suggestions until that 02ptimask arrives - tape up those holes and replace the small bag with a gallon size freezer-baggie.

Also, if you get a fairly quick abort, to prevent the rebound attacks some people get after the 02 abort, many suggest staying on the 02 for 10 minutes after the abort, and then slowly bringing down the flow rate over like a 5 minute period of time from that 15 lpm to 0.

Wishing you PFDAN!

Laurie

GRRR

Exhausted tonight from such lack of sleep, dozed off at 730p watching TV and 15 min later woke up with shadows... immediately went to the O2 and a half hour later had a full blown kip9.  I JUST WANT SOME SLEEP.... i feel like im losing my mind.   :-[  God I hope to have some sleep for my sanity (and my job).....

Sorry you're having a hard time.....  I don't have much to offer but my experience.....

In high cycle, I can't totally abort an attack with O2 alone.  O2 can kill the pain very quickly, by breathing very deep and fast (high flow).  But as Guiseppi mentioned, CH comes back after a short while for "re-attack".  Mine lasts for about 60 minutes, so even if the pain is gone completely in a few minutes, CH can come back within that 60 minutes.  I need to "re-kill" the "re-attack" with O2 if I can afford the time----I try to avoid Imitrex, so it's my first choice to kill the initial attack, do dishes or write a paragraph or two to wait for the re-attack, then come back to O2 to finish it off.  After consulting Batch, I stayed on O2 at a low flow rate for maybe 10 minutes or so in a PF state, but it didn't exactly prevent the re-attack.  When the CH activities aren't vicious, each attack can be killed very quickly at a low flow rate without a re-attack.

I'm a gold fish, and it's work for me to empty a 1 L bag.  Since my normal breath is shallow, it's work to suck hard enough to open the vent; it's not exactly "breathe normally".  So I turn down the flow to save O2 as soon as the pain is down to a shadow level.  I'm probably a type who should be using a mouthpiece.

Even if O2 doesn't kill each attack completely for hours of relief or until the next "scheduled" attack, it definitely helps to stay on O2 and adjust the flow rate according to the level of pain during the course of each attack.  K9 in half an hour while on O2 is too much........maybe try a higher flow rate for the first minute or two and go for fast hyperventilation, in order to stop the pain from growing to hurt you that bad?  A larger reservoir, a better mask, etc. may help too.