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Samantha_Smith
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odd O2 experience--advise please
« on: May 18th, 2004, 12:22pm » |
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Hello!
When my CH's started back in August of 2000 my neuro suggested that I try O2 at the E.R. I went to the E.R. with a CH and sucked on 10 lpm of O2 for over an hour with no results. I gave up on O2 and never went back.
Lately, the nature of my headaches has changed dramatically and I asked my doctor if I could retry O2 because I was in the middle of a bout. She called the O2 company and I picked it up. (My only other alternative was to start a round of Prednisone to kill the cycle and I hate that stuff so I'm trying to avoid it.)
On Friday night I had 5 CH's (each one was about a KIP 7) and inhaled O2 during every episode but I got no immediate relief.
I woke up Saturday morning very discouraged and just assumed that the CH's would return as schedule at 4 pm sharp but they did not. As the hours rolled by I kept checking my watch wondering when they were going to hit. They didn't come until 10 pm that night and I only got 2 CH (each one was only about a KIP 4).
Sunday came around. I had a short bike ride and a light hiking trip. Only one or two CH (maybe a KIP 3) came and each one almost disappeared with O2 use. I was so excited!
I called my doc on Monday and told her to start the paperwork to get the O2 approved by the insurance company. But on Monday afternoon and evening I was hit very bad several times (KIP 7's) and the O2 didn't seem to do too much. (10 lpm for 15 minutes during each attack as always.)
I guess I'm just really puzzled because it seems like most people with CH get immediate results with O2 but with me in seems like it took a few days to kick in but then Monday was a total bust.
Has anyone else had this experience where it took several days of O2 therapy to become effective? Or has anybody had a "hit or miss" experience with O2?
I'll keep trying the O2 because I don't have much to lose. Any input, advice, or insight would be appreciated. Thanks.
Samantha
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thomas
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Re: odd O2 experience--advise please
« Reply #1 on: May 18th, 2004, 12:40pm » |
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O2 only worked about 1/2 the time for me so I can kinda understand what you are talking about. It was too much of a hassle for a 50/50 crap shoot abortive.
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mynm156
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Re: odd O2 experience--advise please
« Reply #2 on: May 18th, 2004, 1:18pm » |
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O2 only works for me as long as I have it on. As soon as I take it off and my levels normalize my headaches come back. These headaches are such a pain in the ass to deal with and even harder to treat.
GOOD VIBES MY FRIEND
MYNM156
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Roxy
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Re: odd O2 experience--advise please
« Reply #3 on: May 18th, 2004, 5:21pm » |
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Samantha,
Are you using the right mask? Sometimes 10 lpm doesn't work for some people, I had to go up to 15 lpm before it helped with the ch's. And then there are some ch's that the 02 just won't help.
Sometimes it will kill one, sometimes it may postpone one, sometimes it might just maintain one.
T
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FZfan
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Re: odd O2 experience--advise please
« Reply #4 on: May 18th, 2004, 5:57pm » |
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Certainly there are people who are not helped by o2 and you may be one of them. But before you give up, do what Roxy said and bump up the lpm to 15 and if that doesn't work, try 20. 10 is on the low end of the flow rate needed to be effective.
It is also possible that your mask has a defect that keeps you from getting pure o2 while inhaling. Upping the lpm will help overcome this if it is a small leak. If the gaskets are completely shot, though, a new mask is needed. Quick fix is to duct tape over the exhale ports, or just rip the hose off the mask and stick it in your mouth.
Yes, like many treatments if not most, o2 is less than 100% effective. But please be sure too give a good try before giving up. Also, try to get to the o2 as SOON as you think the h/a is coming on.
My experience with o2 was much like yours for a couple of years until I found this site, bumped up my lpm, and took great care to be sure I was inhaling pure o2. Then my success rate at complete abortion shot up to 80%.
Sure hope you eventually get the same results. Keep trying. Don't forget to breath it for 20 minutes before giving up during an attack.
I don't know if it helps or not, but one of the things I do is, after the h/a has aborted, I continue to breath o2 for another 5 minutes before shutting off the tank.
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Samantha_Smith
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Re: odd O2 experience--advise please
« Reply #5 on: May 18th, 2004, 8:13pm » |
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Right now my prescription says 8 - 10 lpm for 10 to 15 minutes. I have more success with 10 lpm for 15 minutes. The problem is that my cheap a$$ insurance company will only give me a 570 liter tank so I can blow thru a tank easily in one day. Driving back and forth to the O2 company is a pain in the patootie. There are no problems with the non rebreather mask (its brand new), the tubing is all new and has no leaks, and the tanks are all inspected before they leave the O2 company. Thanks for the tip about duct taping the exhale ports. I love duct tape! My tank can go up to 15 lpm--I may try that if I'm desperate. Thanks for that tip also. I'll try to hang in there! I'm not ready to give up quite yet. I may just rip the hose off of the mask, drill a hole in my head, stick the hose in and turn the O2 tank on. Thanks for all of your advice. I truly appreciate it. PFDAN's Samantha
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BlueMeanie
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Re: odd O2 experience--advise please
« Reply #6 on: May 18th, 2004, 8:23pm » |
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Unfortunately 02 is a hit & miss as Thomas said.
I usually try it until either the CH goes away, or until I can no longer handle the pain. I then give up and go to the Imitrex shot.
I love keeping it around for an additional weapon, but I don't rely on 02 completely.
From what i've read it is a godsend for alot of clusterheads though.
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bobkip
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Re: odd O2 experience--advise please
« Reply #7 on: May 19th, 2004, 2:58pm » |
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O2 works for me about 80% of the time. I flow 12 lpm and it usually aborts the ch in less than 10 minutes. If you have A/C in your car you could try turning it up full blast and let the cold air blow in your face. Best of luck.
Kip
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Tom
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Re: odd O2 experience--advise please
« Reply #8 on: May 19th, 2004, 7:13pm » |
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Supposed it's CPH/PPH - then O2 wont help. Tried indometacin?
Thomas
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Samantha_Smith
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Re: odd O2 experience--advise please
« Reply #9 on: May 20th, 2004, 3:59pm » |
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So now I'm totally baffled. The CH's (as well as the tension and migraine h/a's) that I get have completely disappeared for almost 2 days now. Huh? I have NEVER had anything like this happen. I'm really beginning to wonder if somthing else is going on or perhaps there is some sort of correlation between O2 and CH disappearance. Maybe tomorrow they'll come back full blast? Who knows? I've tried indomethacin and all it does is rip a hole thru my stomach. Thank you everyone for your replies. I really appreciate the all.
PFDAN's Samantha
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