I was wondering if the oxygen has to come from a tank.
MY aunt says she has a Oxygen machine of some sort.
That would be great if it can help.

Sorry to be the bearer of this news, but unfortunately the O2 concentrator machines aren't known to work so hot for CH.

I'm just repeating what I've read here, but I believe those only give up something like 70% O2, whereas you need 100%.

There was one person I remember once though that said the concentrator worked to an extent for him/her, so I suppose if you have one lying around it might not hurt to try (?)

If it's getting good and cold there at night yet, I bet you might get better results by going outside and deep breathing (through the nose) really cold air for 10-15 minutes. Really. It has been known to work to an extent for some, including myself. Running, brisk walking or running in place while you're out there could help it along.

On the other hand you could consider snagging some tank O2 from a  welding supply place right away. Word has it that it's the exact same stuff as the medical O2.

thanks for he info.
  my CH got up to a 8 1/2 i had to break down and do the shot thing. the trex is great. i didn't want to deal tonight.
im gonna wish i saved it for when that 10 wakes me from a dead sleep though.

   

Hi Roughneck.
To abort a CH with o2 you will need 100% o2 with at least a 15 LPM regulator and a non-rebreather mask, but the o2ptimask available from the CH.com store to your left is by far the best mask for this and you must get on it at the very first sign of an on-coming attack. The longer you wait, the longer it takes to kill a hit.
Next thing is a preventative. I take Verapamil at 480mg daily, but this is all done with my neuro's approval.
What is your doc suggesting for you to use to combat the CH's? I see you use Trex but there is other options that work very well for a lot of us here.
I hope you find what we call "your cocktail"

  Barry

I will call my neurologist in when he opens this morning. had to take a second shot this morning.
   i really hope the o2 helps!
i think my cluster pain was close to a 10 of not 11.
had to be the worst i ever had.
i hate this crap!
   i couldn't even open my left eye or deal with the pain to drive my son to school.
   would have been to dangerous.
   if anyone can relate with this situation let me know.
   i lost my job due to clusters.
i am having trouble looking for work even though there isnt much out here these headaches seem to cripple me.

   this o2 better work!
  i pray!!
   here it comes again..

Man you are getting hit hard alright. Really sorry to hear that.

For your severe case I'm guessing that BOTH an optimask AND a hi flo regulator that will get up to 25, 40, even 60 LPM could be necessary to get results. You may have to order both the mask and the regulator. I read something here about dive shops having hi flow regulators I think. or was that the mask....? Sorry, not remembering about that for sure, but starting topic(s) about that in the Medications,  Treatments,  Therapies forum oughta get some informed answers.

Yeah I hope you and the neuro can find a good preventative that'll work to quash at least 50% or so of the hits. A lot of people here do seem to get good results with Verapamil. Didn't work for me, but I may have been on too low of a dose.

Meantime while you're using imitrex, that imitrex tip on  the left (START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE) will enable you to double your doses for the money while halving the risk (if you are using injections).

Some people here (not me) have had success with melatonin knocking out their night time hits (!!), and Kudzu root herb and Taurine have been getting some favorable reviews too.

Hang in there Roughneck, this is obviously some pure unadulterated hell of the worst kind you're going through right now, but there's still a good chance you can tame this beast IMO.

At the risk of pissing people off around here: 15 lpm just doesn't work for some of us, while other people are virtually pain free at 8-12 lpm.

When I got a 25 lpm regulator, O2 actually started to help a little. When I jumped to real high flow O2 in the 45-60 lpm range, the difference was like night and day for me - no more high level pain to endure.  I cannot begin to explain what that does for me.

My point is that when people suggest "at least" 15 lpm or even 25 lpm, remember that you may need much more. Don't just give up if 15 lpm (or even 25 lpm) doesn't work well for you.

A high flow regulator can always be turned lower, but you can't crank a 15 lpm regulator to a higher output. You have buy another one.

Marc

How did you make out with the o2 today?

I have a 25 LPM regulator for each of my "M" and "E" tanks but have not tried the higher flow rate yet nor the new o2ptimask as I am currently out of cycle.

I was finding that 15 LPM was working great, as long as I was awake when the hit was starting, but found the one's that hit during my sleep were taking way too long for the o2 to abort the hit. I am praying the higher flow rate and mask works for those night time hits.

25 LPM regulators are very hard to get a script for for CH's here in Canada. My neuro and I are working on things and I am teaching him about the o2, and he is listening.

I could have purchased an even higher flow reg elsewhere but I want to do this under the watch and consent of my neuro.

PF wishes,  Barry
             

Thanks so much for all the info. I went to my Fathers where i had a huge Oxygen bottle for welding in his garage. I have a Oxygen gauge for welding and the green welding hose that i cut and rigged up a oxygen mask i snagged from my grandpa.


    I tried to buy all this from a oxygen supply today and even the mask they said required a prescription. so i rigged this ud its not pretty but i hope it will work.
 

   you say use 15-60 lpm how do i judge this whith my set up? any clues?
i dont have liters on my gause only psi and kpa.

   any help would be appreciated with this matter.
i cant wait to see if  oxygen works for me!

    thanks all.   
                     Billy
   

Billy,

Don't get hung up on flow rate in terms of liter per minute. Just S L O W L Y open the valve to a rate that which you can keep up with while really breathing fast and hard - anything more is just wasted.

Again, the trick is to try and hyper ventilate on pure O2 with no room air. Chances are that the mask you got isn't going to cut it, so just do what you can to keep all room air out.

Be SURE that you are using the big green O2 tank and NOT the smaller acetylene tank! You will know because acetylene stinks.

Marc

Edit to add: O2 is odorless. If you detect any level of rotten egg type smell, don't use it because that means his valve setup allowed some acetylene to backflow into the O2 tank.

This is something that they check for when the O2 company fills a tank so you don't have to worry about it with a newly refilled tank.  Since that rig has been sitting around for awhile, just use your nose.

HAHA its a right hand thread big green oxygen tank 5 foot tall. it has 8000 kpa or 1000 psi in it any clue how long that will last?
the acetylene bottles are left hand thread im sure we all know that.
    i used what i could come up with on the fly. i tried to get the correct mask like the one you posted. but the lady at the oxygen place said i needed a scrip to buy the mask.
i was kinda pissed.

Good move, Billy. Many of us have gotten by well by rigging something up for awhile.

There are two sizes at 5' tall: T and K sizes. The T is the larger of the two at about 9"+ in diameter.

1,000 psi is just under half full. If it's a T, I get about 40 uses out of a full tank, so figure less than 20. This assumes that you use it hard and fast. If you find that a lower flow works, you can get more "hits" from it.

If it's a K size tank, I'm guessing it would be 20% less.

Here in Texas, I pay $18.50 per refill of a T tank.

Marc

Billy, wishing you all the best in your fight. There are many in your corner hoping you find some relief.

You'll notice with the optimask shown in the oxygen info on the left that there is a reservoir bag attached to it.

How empty/full the bag is getting when breathing the O2 is how I know whether I should turn the O2 liter flow up or down. I'm no expert on O2 use though mind you.

You might want to tape over any holes in your mask and have it on your face for inhale/ off for exhale so you're getting 100% O2 on inhale.

If it feels like it's a struggle to inhale the O2 with the mask holes taped over, I'd say the liter flow is too low, so you'd want to turn the liter flow up slowly until you can inhale without struggle, and there's your sweet spot.  :)

I am no expert on o2 either, but my experience is that I want to hyperventilate the o2 and to do this you need the bag to fill quickly.

When I use 15 LPM the bag on my Clustermasx takes just a bit too long to fill, and my new o2ptimask has a much larger bag so this is where the higher flow o2 regulator comes into play. Fill the bag quickly.

o2 has given me my life back, I can only pray you get the same relief so many of us here get from using o2 to abort CH's.

Hang in there, you are not alone with these anymore. Clusterville has the porch light on 24/7 :)

Yes, from what I've seen, the hyperventilation that Barry mentions does seem to be a popular way to go amongst the serious O2 power users around here.

I'm set up with what i could come up with spending no money.
The CH is creeping up as i type. will let you know how the oxygen works. I cant wait!

No outside air, 100% o2. Good luck.

I took off the mask and put the hose in my mouth. inhaled through the hose exhaled through the nose. 100% oxygen.
  seems to be working. i did it for a couple minutes and it went away. but now 20 minutes later i feel it creeping again.

Thats normal.  You have to keep using the oxygen for a little while after it is gone or it will come back.  Or sometimes they will just come back on their own.  Keep hittin the 02

Sheepdog

Yes, you have to make sure it is totally gone or you will begin to shadow. Also, try to get away from the computer screen. For me I notice  starring at a computer screen can trigger a Ch.  Start drinking water.  It can't hurt. Also, strong coffee and redbull works too. Just last week at the worst of my cycle. I was in a position to have to drive my son to school, then go to work. I am on a final notice at work because of this shit. It's sucks to have to be driving with a mask on your face. But I gotta do what I gotta do.  I hope you get relief soon man.

Jrcox

Jrcox wrote on Nov 18^th, 2009 at 11:31pm:

Also, try to get away from the computer screen.

But, but..how's he gonna get all our handy tips??  :)

bejeeber wrote on Nov 18^th, 2009 at 11:40pm:

Jrcox wrote on Nov 18th, 2009 at 11:31pm: Also, try to get away from the computer screen. But, but..how's he gonna get all our handy tips??  :)

It is a bitter sweet, isn't it? I hate that when I am totally into this site, reading and learning, relating, etc. and the beats starts. I start yelling at it. The beast hates this site.   :D

Im probably not the only one that wishes i could be sleeping right now.
    I know if i fall asleep now, after the last few nights hell
I know whats going to happen at 3am and again at 6 am.

   This site has helped me a great deal!
I would drive my son to school if my CH was at a lower lvl.
I just close one eye and go for it.
My wife took care of the situation.
   
I could stay up for years with no sleep and just carry around oxygen.....

  haha

 

Roughneck wrote on Nov 19^th, 2009 at 12:13am:

This site has helped me a great deal!

I know whatcha mean Billy - I've said it many times before, and here it is again: This site has saved me.

It was to good to talk to you last night, Bill.

How did it go?

Marc

I second that marc. How was your night?

Jrcox

Holy shit!
I made it through the night and just woke up at 10 am!
I woke up with the plugged nostril on my laft dise and had a small CH trying to get me.
I reached over for the oxygen and had some trouble keeping up with the oxygen due to the stuffed nostril. but i figured a way to make it work.
  I LOVE YOU GUYS !!!!!!!!!!!
HAHA


   I can get my life in track now......

Oh YEAH!!!  [smiley=2vrolijk_08.gif]

That report makes a lotta people relieved and happy Billy, good work! [smiley=thumbup.gif]  ;D

Yup, looks like we've added another O2 pusher to the list!!  Great news Billy, like so many others have posted, O2 has been a lifesaver for me. 

By the way, I grew up in your neck of the woods.  Colo Springs and Security.

Wishin you PFDAN's

Dallas Denny

That's great news. I was a little worried you were going to go through another night of hell. Glad you got some sleep.

PDAN's

I finally feel like I can go to school today. So im going for it.
I wish i had an oxygen bottle i could take with me just in case for piece of mind.

   I'm considering lugging this 5 foot tall oxygen bottle where ever i go!


   I have a strong urge to make sure People know they  dont have to suffer. all the y need is oxygen and the daily pills. and this website! haha

Im stoked out of my mind. I could do a back flip if I wasn't so old...


  I wish i had this info way back wheni was in high school.

I have two "E" tanks, about knee high, one that I have in my car and the other one at home for back-up in case my mother ship "M" tank runs out.
PF wishes for you tonight! :)