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Topic: O2 questions/concerns (Read 561 times) |
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heprat
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O2 questions/concerns
« on: Dec 11th, 2004, 4:03pm » |
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I have stopped using trex and am soley using O2 to abort my attacks. I also started using melatonin (9mg) before bed about 4 nights ago. I have a couple of questions concerns that other O2 users might be able to comment on. BTW - I am also on about 50mg of topomax and have been for about 1.5 weeks.
1) more attacks per night. since relying on O2 it seems like my attacks have increased to 4-5 per night compared to 1-2 earlier in the cycle.
2) horrible hangover in the am...O2 related? melatonin?
I haven't drank anything since begining this cycle.
3) do O2 users ever begin to become imune to using O2? this scares me the most. I had a hit last night that had me thinking of finding the trex.
For ME - The beast is a pretty random bastard so the number of attacks per night might be more beast related than anything but I thought I'd ask anyway.
I feel very fortunate that the big green bottles of "beast be gone" work for me. I just hope they continue to.
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Kevin_M
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Re: O2 questions/concerns
« Reply #1 on: Dec 11th, 2004, 4:18pm » |
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on Dec 11th, 2004, 4:03pm, heprat wrote:| 1) more attacks per night. since relying on O2 it seems like my attacks have increased to 4-5 per night compared to 1-2 earlier in the cycle. |
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I love O2 instead of waiting for the n/s trex to kick in. Although the reoccurance you mentioned is sometimes there too. I take a (check with your doc) trex and O2 once a night on the second wake up call and it keeps it down for a longer while. But I don't know if the reoccurance is due to the O2 or not. The O2 gets rid of most hits anyway, perhaps that is its sole capabilty to be expected. Something like (but NOT used within 24 hours of trex) Zomig and O2 might be better for the nights. Also adjust any prevents you are taking, that has helped too.
Kevin M
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| « Last Edit: Dec 11th, 2004, 4:23pm by Kevin_M » |
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Not4Hire
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...WAS PF since Oct.'02, but ...oh my...(CBusters)
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Re: O2 questions/concerns
« Reply #2 on: Dec 11th, 2004, 9:07pm » |
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..heprat... interesting that you would say that your attacks have increased since using oxygen and that you also say that you've been on topomax for 1.5 weeks. I would be more suspicious of the topomax than the o2.
Melatonin can make you feel ...kinda hungover... because it's trying to shut off your REM sleep. Which may (or may NOT) have some thing to do with cluster onset.
Some people report that o2 stops working... God I hope it doesn't for me... but I find it hard to believe that elevated oxygen levels can be causing more attacks.....look for another trigger before you give it up.
Good luck....
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Mantra: This will NOT kill me...This will not KILL me... This will not kill ME...
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heprat
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Re: O2 questions/concerns
« Reply #3 on: Dec 12th, 2004, 12:35am » |
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thanks for the replys
the more I read and research the more I become paranoid of the meds. Tonight over dinner the wife and I discussed the history of attacks. It all seems pretty random to us. With time, the episodes have lengthened....but so has the attempt to treat the beast with meds. I've become pretty paranoid of the meds in recent days...yet am afraid to stop taking the topomax for fear that it might help and that I haven't given it enough time. I'm also afraid to stop the meds for fear of pissing off the neuro who is my source of script for O2. At this hour...none of this seems rational.
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karma
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Re: O2 questions/concerns
« Reply #4 on: Dec 12th, 2004, 7:33am » |
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Heprat,
A docs. job is to help you. period! You have the right to ask questions and ask for specific treatments.
CH is scary and some of the treatments are scary but You are in charge.
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Nancy_P.
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Re: O2 questions/concerns
« Reply #5 on: Dec 12th, 2004, 7:39am » |
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I saw my dr. this past Friday and told him how I had fallen asleep with the o2 on last Monday night and went 59 hours without a single attack. The attacks started up again Thursday and have continued, but he wanted me to measure what my absorbtion was at different liters per minute during an attack when I use the O2. One has to be careful about getting to much, anything over 98% can be fatal. Tonight the plan is for me to wear the nasal tube to bed and have the oxygen set at no more than 1-11/2 liters per minute and have my husband check my absorbtion threw the night to make sure I'm at safe levels. This is the same set up that you see folks wearing that have limited lung compacity. I normally have anywhere between 5 to 7 attacks at night and sometimes during the day as well. Yesterday I had 5 and then had 5 last night. My brains are a little sore, but the oxygen did abort the headaches. I have found with the subsequent attacks that it make take a little longer for the oxygen to work, but it always seems to come threw for me. I'll keep you all posted on how this works out. The nice thing about using the oxygen is that it keeps me from smoking too!!! Hope to quit that little habit by the first of the year. God Bless.
Nancy
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Nancy_P.
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Re: O2 questions/concerns
« Reply #6 on: Dec 12th, 2004, 7:42am » |
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I forgot to mention that my doctor sent me home with that little meter that measures the absorbtion!!! It's the one that you put that little clip on your finger and it tells you where your at and what your pulse rate is. Not many doc's will do this I'm sure, but I am fortunate to have a really awesome doctor.
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Kevin_M
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Re: O2 questions/concerns
« Reply #7 on: Dec 12th, 2004, 8:25am » |
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on Dec 12th, 2004, 7:39am, Nancy_P. wrote:| I saw my dr. this past Friday and told him how I had fallen asleep with the o2 on |
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It is always a must, if using a mask, to cut the strap off.
Hold on to it instead, it will fall away if you fall asleep.
Kevin M
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heprat
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Growning old is mandatory - Growing up is optional
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Re: O2 questions/concerns
« Reply #8 on: Dec 12th, 2004, 3:40pm » |
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I use a kitchen timer...set it for 15 minutes at the start of O2 use...keeps me from falling asleep with it running. I'm more concerned with using up all the O2. The mask I was provided is so cheap I have no fear of sufocating. I have to hold it pretty tight to not breath in outside air.
But Kevin is correct...if the mask is decent and works like it should...the straps should be removed.
Nancy - that is an interesting concept. It would be awesome if you could find that perfect level that could keep you PF all night.
Karma - this weeks upcoming visit with the neuro will be interesting. I think she feels as helpless fighting the beast as I do. Man this is one ugly affliction...so emotional...makes me feel helpless and so out of control - not something I'm used to.
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