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Topic: Got O2 (Read 569 times) |
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BruceD
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Well, the trip to the doc who originally diagnosed me (family practice and she is actually quite up on CH's) went well. Gave me the script for O2 without any problems but she's not too hot on imitrex (at least for me currently) That's OK because I'd like to try the O2 alone to see if it works well.
She also said to see how things go and if the O2 is not sufficient to come back and we can discuss options - other meds, steroids, etc.
The only problem is that the med supply company was probably not going to be able to deliver the stuff tonight. Well about an hour later we got a call that the REALLY NICE man from med supply was leaving to go home and would bring me O2 on the way. 
He brought me 3 tanks and a high flow regulator 15lpm along with the non-rebreather mask. I'm all set ... Locked & Loaded ... watch out beast I'm fighting back.
Thanks to all for the info and I'll let you know if it works for me.
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Childhood is short, maturity is forever. (The Indispensable Calvin and Hobbes)
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jonny
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Just remember, Bro......get on it as soon as you feel it, dont wait to see if it will pass.
Good for you, Dude.
.........................jonny
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BruceD
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Re: Got O2
« Reply #2 on: Jan 10th, 2003, 7:14pm » |
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on Jan 10th, 2003, 7:07pm, jonny wrote:Just remember, Bro......get on it as soon as you feel it, dont wait to see if it will pass.
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Thanks man, I've been fighting it long enough to realize that it just doesn't pass. Been there, done that and paid the price.
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Childhood is short, maturity is forever. (The Indispensable Calvin and Hobbes)
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jonny
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Cool, didnt know you were a vet of CH.....you didnt mention.
Some people will try and ride one out when they dont have to.
Glad you got some weapons to beat the beasts ass back to hell.
............................jonny
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BruceD
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Re: Got O2
« Reply #4 on: Jan 10th, 2003, 8:28pm » |
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I guess I wouldn't call myself a vet compared to many of the stories I've read here (yours included). I've had them (episodic) for about 13 years, the last 5 of which I actually knew what they were & what to call them. I've been stumbling through a bunch of "what seems to work for me now" kind of things over these years that I've just happened upon. Diet, caffeine, water, sleep, etc just whatever I associate with the pain. Some have worked, but over the past 5-6 years things have gotten worse and now that I know what I'm up against (& have this site for ammunition) I have a little better outlook.
I still have that heavy shadow since my last CH (yesterday mid-day) but so far all is manageable. I really like the Kip scale here. It perfectly describes the different levels and I guess it takes one to know one.
Later man.
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BruceD
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Re: Got O2
« Reply #5 on: Jan 11th, 2003, 7:18am » |
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WoooHoooo it worked. I was awakened in the middle of the night with a CH ramping up & hit the O2 right away. It seemed to halt the increase but did not completely erase it. I stayed on for 10 min & then stopped for 5 (as per the instructions) The CH came right back on & hit about a 9 kip & my wife said it was OK to hit the O2 again. This time within about 3-4 minutes it completely damped the pain and after about 8 minutes I was completely pain free.
Now for the questions: How long do you guys have to use O2 before it kicks in? Also, what is the longest that you've used it continuously?
At least I have a new weapon & it seems to kick butt. Now I just need to rig up a shoulder harness to carry my tank around wherever I go. 
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Linda_Howell
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Re: Got O2
« Reply #6 on: Jan 11th, 2003, 7:40am » |
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"as per the instructions" Huh?????
I've fallen asleep with the damn thing on my face, not that I'm saying that this is a good thing, because it's not..........but who told you to take it for only 10 mins..?
Linda Howell
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SommelierCH
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Re: Got O2
« Reply #7 on: Jan 11th, 2003, 7:41am » |
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Just me, I am not a doctor, nor do I play one on T.V.
20 mins. was the longest with no break, first ten at 10 lpm, second ten min. at 15 lpm. and huffing. Damn niteattack snuckup on me full blown. Didn’t die. Brain still gord.
Use the O2 anytime you feel the shadows building up. You know that feeling, so don’t deny it, encompass it, understand it. Hit the O2 and beat it back before it can get going.
PFDAN,
David J.
EDIT: I would like to add that when I woke up full blown, I took a Maxalt MLT 10 mg. (triptan) immediatly, then hit the O2. That combo usually took less than 10 min. if I woke up in time, this time I didn't. Don't Sleep!
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| « Last Edit: Jan 11th, 2003, 9:47am by SommelierCH » |
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catlind
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Re: Got O2
« Reply #8 on: Jan 11th, 2003, 9:10am » |
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I've been on the O2 as long as an hour, also I've fallen asleep with, and was severely berrated for doing so and told to never do it again ... doh!
When I asked Ueli one night in chat many moons ago, he said the best bet was to stay on for 15 min. and if the pain went away, another 5. If it didn't go off for 5-10 min. then hit the O2 again for another 15 etc.
I think the break is simply so you don't waste O2.
I was also told (I think by BobP) to hit the O2 at my highest lpms and as the pain subsided slowly turn down to the 10lpm (or 8lpm) and stay on for 5 min. after the pain went away.
Either way, I hit the O2 and I'll sit with it on my face all day if I think it will abort or prevent another attack. Mostly I think it's a matter of not wanting to waste your O2. I can get mine free and whenever I want (except on Fridays ugh) so I don't worry about time limits with it. I just keep on suckin on it til I know I'm safe.
It is worth a note to know though, that sometimes the O2 won't abort the first attempt at O2 or even the 2nd for me, but if I keep at it, it usually does the trick.
The hard part is if you have a full blown kip 10, sitting still at a big tank long enough to get the full effect!
15min. feels like 15 hours then. I think I need to get one of those hose extenders so I can move around and assume my CH position of all fours on the floor banging my head.
Cat
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SommelierCH
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Re: Got O2
« Reply #9 on: Jan 11th, 2003, 10:03am » |
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One last thought, then I will go to bed (guess I'm still afraid to go to sleepl)
There was a tip in some great post I read, I think it covered most of the O2 issues, that said to cut off the elastic band that holds the mask over your face. So..if you fall asleep, it will fall off your face. You will lose your tank, but you will still have your nose hairs. I still have the band.
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| « Last Edit: Jan 11th, 2003, 10:08am by SommelierCH » |
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BruceD
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Re: Got O2
« Reply #10 on: Jan 11th, 2003, 1:03pm » |
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Thanks all. The initial "instructions" were to use for 10 min or so at the full 15lpm and then (depending on how I feel) go off for a short break before hitting the O2 again.
I was tired from being up in the night so decided to take a quick nap this morning (sleep=bad). I woke to another CH and (before reading your replies) I used the same 10 on, 5 off, 10 on. That one didn't completely kill the CH but moved it down from a 9.5 to a 6 or so. The bad thing is that my headaches are currently lasting 2-3 hours so even a 6 wears on me.
Anyway, I think I'll try the on full blast method until I start to see results and then gradually taper back the flow. As with anything new you've got to get the hang of it. At least I have something to fight back with. I think I'll call for refills right away (med supply delivers on Tues & Thurs) because I want to be fully stocked up.
Now I have some reading to do to see about other abortive meds. (I've never heard of Maxalt) See you later and wishing all of you many PFDAN!!
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Childhood is short, maturity is forever. (The Indispensable Calvin and Hobbes)
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jonny
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Stay on the 02 till the HA"s gone and then stay on it for five mins more just to make sure you stomped his ass to hell.
..................jonny
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rumplestiltskin
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...i'll say it again....might as well...since i know nothing about 98% of the drugs and treatments at this site....i might as well chime in about the few things i do know.
Because new uninformed clusterfolks arrive daily some things just deserve repeating. Because some buds are dense and simple minded some things are worth clarifying.
To propely treat a Clusterheadache with Oxygen one must breath in 100% O2 with EVERY breath ...thus the special mask and bag which allows no outside air in and has lil valves which are supposed to insure this happens.
My present mask and many of my previous ones suck. The intake check valve leaks so that when I exhale some of it wants to go back into the bag. I have to pull it away from my face with each exhale to prevent this.I have a thick scraggly beard so then I must push the mask tightly to my face each inhale to keep air from filtering in around the edges because of my bush...and all that while running in place! A true clusterhead will go to any length to make the pain stop ASAP.
Those nose thingy cannule hoses are devices from satan. I first tried O2 because I read about it here. It came with those irritating lil nostril grabbers. Over and over, after a 1/2 hour of unrelenting pain i would tear them from my face and finally claimed "Oxygen does not work fer me"
Someone here finally convinced me that I had to use a non-rebreather mask. That did not abort my CH till I finally went out and got one. That did not abort my CH till I actually used it. Even at the highest flow rate that did not abort my CH because the orifice of the regulator was clogged and the bag wasn't filling fast enough.
It was not until I had the rig set up so that no matter how fast and deep I breathed ...the bag never emptied and I never had to wait for it to fill....then it worked!
My first successful O2 abortion of a CH happened in about 3-5 minutes. Until I die I'll never forget that moment.
Note: I never mentioned flowrates....6LPM...8Lpm...12LPM...20LPM? Folks tell other folks that their "flowrate" is too low. That's just crap. Goadsby said 8 LPM. The number is still unimportant. There is nothing magic about the damn #'s. I'll contradict the Gods by saying that his # is wrong for people who can inhale O2 faster than 8 LPM
To make yer car go....It doesn't matter how big yer gas tank is or how much gasoline is in yer tank...as long as there is enough flowing to keep yer car running no matter how fast you drive.
With O2 we are talking flowrates...not octanes. 20LPM is not "better" than 8LPM. It's all 100% O2.
Using a tight fitting non rebreather mask, the proper amount fer you depends solely on how fast and deep you breath so that the bag never empties and you never have to wait for it to fill....there... I said it again.
I realize telling someone 15 to 20 LPM's is a farely safe bet...but it is misleading...of course... it is easier and simpler than saying all the stuff I just said...hmmm
...nevermind.
good grief
den
PS: I'll suck it till the pain is gone and then some.
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Linda_Howell
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Re: Got O2
« Reply #14 on: Jan 12th, 2003, 4:46pm » |
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O.K. Since it was brought up, I agree. Suck til the pain is gone and keep on sucking for a little while longer.
Now, if I may ask a question?????
I want to send a non-rebreather mask to someone who is out of this country....I know I have to fill out a declaration to put on the box...Is it illegal to send this thing? What do I put in the declaration box?
This person is.......are you ready for this? trying to get the 02 right out of a small tube/hose. Without the mask.
which is why I want to send a spare I have.. Any thoughts? Linda
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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jonny
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Linda sweetie babe,
just box it and fill out the customs ticket and you will be good to go, ive done it for Ueil and MOB.
..........................jonny
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Linda_Howell
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Re: Got O2
« Reply #16 on: Jan 12th, 2003, 6:19pm » |
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Fill it out with what? what do I say is inside?
Trying to not be real blonde here. Linda
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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jonny
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If im sucking 15 lpm as fast as I can it means im not sucking 8 lpm slowly.
Get it?
.......................jonny
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catlind
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Re: Got O2
« Reply #18 on: Jan 12th, 2003, 7:37pm » |
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Linda, just put face mask on the customs ticket, or if you want to put non rebreather mask.
It's not illegal to send items of that nature as gifts.
You just can't sell medical supplies internationally without a customs brokerage.
Cat
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