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Topic: I Just Got Oxygen!! (Read 405 times) |
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Glenda_J.
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My doc decided and I to try me on oxygen and I remembered to tell her thet I need the non-rebereather mask but I never paid attention to the flow so yesterday when the oxygen guy came he was verifing the mask and 1 liter flow per minute, I'm all stupid going "I don't know I've never used it before"  So anyway I explained to him that I have clusters and he got kinda irritated with my doc and he tried calling her but she wasn't in, so he went ahead and set me up & left then called me back said that his supervisor agreed w/ him to change from the 1 flow to the highest (5) because my doc was wrong! ;D Then today he came with a high flow regulator (because he said I need 10 to 15 liter) and said he pretty much put his job on the line and called my doctor and got her to change my prescription! He was just so amazing, I was worried because I remembered reading so many having problems getting the right oxygen flows.
OK I'm done , sorry this was so long! 
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eyes_afire
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Re: I Just Got Oxygen!!
« Reply #1 on: Mar 22nd, 2002, 4:48pm » |
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Hi. Wish you luck with the O2. I've had mine for about 10 days and it has helped. I usually set mine at 8 L/min. The important thing is to make sure it is high enough to keep the reservoir bag inflated. That insures that you are breathing 100% O2 (along with a good-fitting mask).
good luck
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Karla
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Re: I Just Got Oxygen!!
« Reply #2 on: Mar 22nd, 2002, 4:56pm » |
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That is the correct range. I always used 10-12. Good thing you said you had clusters and a good thing you had a knowledgable oxygen man. You might want to thank him. Imagine how frustrated and hopeless you would have been at 1 liter. glad it is all straightened out and you are ready to go now.
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Karla
suffer chronic ch
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Karla
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Re: I Just Got Oxygen!!
« Reply #3 on: Mar 22nd, 2002, 4:57pm » |
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That is the correct range. I always used 10-12. Good thing you said you had clusters and a good thing you had a knowledgable oxygen man. You might want to thank him. Imagine how frustrated and hopeless you would have been at 1 liter. glad it is all straightened out and you are ready to go now.
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Karla
suffer chronic ch
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Karla
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Re: I Just Got Oxygen!!
« Reply #4 on: Mar 22nd, 2002, 4:57pm » |
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That is the correct range. I always used 10-12. Good thing you said you had clusters and a good thing you had a knowledgable oxygen man. You might want to thank him. Imagine how frustrated and hopeless you would have been at 1 liter. glad it is all straightened out and you are ready to go now.
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Karla
suffer chronic ch
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Glenda_J.
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I think I'm going to call his supervisor and give him a thumbs up since everyone is always so fast to criticize but never to compliment.
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MaureenG
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Re: I Just Got Oxygen!!
« Reply #6 on: Mar 24th, 2002, 1:30pm » |
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How did you go about getting the oxygen?
During the course of all our CH research, my boyfriend (the sufferer) and I (the supporter) have heard from several sources of the benefit of oxygen therapy, but when he asked his doctor about it, he was told that oxygen could only be prescribed for respiratory illnesses.
He was given oxygen twice in the ER, but I think it was too late at that point for it to do any good, but of course he was willing to try anything at that point.
Unfortunately, he doesn't have a neurologist at this point because he has been through so many of them, he has become discouraged. We are trying to find one who is knowledgeable in clusters, but until then, he relies on his GP.
I'm wondering if he just needs to go to another doctor for oxygen.
Thanks!
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MaureenG
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Re: I Just Got Oxygen!!
« Reply #7 on: Mar 24th, 2002, 1:30pm » |
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How did you go about getting the oxygen?
During the course of all our CH research, my boyfriend (the sufferer) and I (the supporter) have heard from several sources of the benefit of oxygen therapy, but when he asked his doctor about it, he was told that oxygen could only be prescribed for respiratory illnesses.
He was given oxygen twice in the ER, but I think it was too late at that point for it to do any good, but of course he was willing to try anything at that point.
Unfortunately, he doesn't have a neurologist at this point because he has been through so many of them, he has become discouraged. We are trying to find one who is knowledgeable in clusters, but until then, he relies on his GP.
I'm wondering if he just needs to go to another doctor for oxygen.
Thanks!
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eyes_afire
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Re: I Just Got Oxygen!!
« Reply #8 on: Mar 24th, 2002, 6:03pm » |
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He probably will need to see another doctor in order to get the O2. My GP did not feel comfortable prescribing O2. GPs are not used to prescribing O2 for CH and are probably concerned about liability. I think to use 100% O2 you need to have good lung function. Also, using too much can be harmful to lungs. 20 minutes per attack is standard treatment. From what I hear, 100% O2 for an hour or more straight, can be harmful.
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MarkHW
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Re: I Just Got Oxygen!!
« Reply #9 on: Mar 25th, 2002, 3:41pm » |
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I just got my oxygen, but my doctor only prescribed 2!
My tank seems to go up to about 10, but there is no inflatable bag or anything, just tubing....
So... do I have to go back to the medical supply place and get a new attachment?
Also, who do you send your bill to for insurance? Drug company or medical plan?
Thanks! Mark
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The clusterhead formerly known as williamsmh.
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NotH20
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Re: I Just Got Oxygen!!
« Reply #10 on: Mar 25th, 2002, 4:24pm » |
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Well Mark - congrats on actually getting the O2!!!! ;D
Actually in my case, the O2 company sends the bill directly to my ins. and I don't have to deal with anything - I just get the EOB's in the mail of what they pay and OF COURSE what portion they don't pay......my O2 runs out at the end of the month since I'm at the end of my cycle and I'm just assuming that the O2 company will send me a final bill of what I owe (but shhhhh I'm not asking for one LOL).......ask your O2 company if they will bill your insurance directly. If not, just send the bill in to your ins. company and have them pay directly and see what falls out as a balance.
You do need the bag so unfortunately it's another trip to the medical supply for you - but they may be able to deliver it instead.
You may want to check into something if the O2 works for you....i have a few portable tanks that i keep in the office, car, etc...but i also have a large tank that does NOT need to be refilled in the bedroom - it makes it's own O2 - i just push a button and BAM instant O2 no mess no fuss LOL.......it's a little more expensive, but they deliver, they check on the equipment, etc and it's much easier than scheduling a time to swap out empty tanks for new one's in the middle of a cycle while trying to hold down a job, exhausted and at the end of your rope.
Hope this helps out a little......keep the faith and good luck!
NotH20
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eyes_afire
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Re: I Just Got Oxygen!!
« Reply #11 on: Mar 25th, 2002, 4:45pm » |
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Williamsmh: NotH2O is correct. It sounds like either your doc is not familiar with prescribing O2 for clusterheads, or the O2 company misinterpreted the script. You need a flow rate of between 8L/min - 12L/min (depending upon your lung capacity), and it should be 100% O2. If they just gave you the little tubies to put into your nostrils, it won't really be 100% O2. You should get a mask (make sure non-rebreathable... there should be a small disk on the one side hole which opens and closes as you breathe... therefore non-rebreathable) and the mask should be attached to a reservoir bag. The bag ensures that there is enough O2 always available for you to take into your lungs, that's why you need a flow of between 8 and 12. As long as your not exhausting the reservoir you are okay. I can set mine at 8 without exhausting the bag and it doesn't waste as much O2 than if it were at 12. Make sure the mask fits snugly. There is probably a nose clip adjuster on the mask. If you're getting O2 blowing into your eyes, you can pinch together the noseclip to make a snug fit. I got my O2 through my medical (not prescription) plan because it's considered an assisted living device I guess. I called my medical plan first to make sure they approved of the O2 supplier, it made everything easy for me. You should probably check with the O2 supplier first to make sure they didn't misinterpret the script.
Hope this helps
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Glenda_J.
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Damn I must have gotten lucky with my first time getting oxygen. I just asked my doc and she agreed with me to try oxygen first rather than putt all different drugs in my body for abortives. Plus she new it worked for clusters, she just screwed up when she wrote it for only 1 liter, thank God I had a good oxygen guy.
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MarkHW
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Re: I Just Got Oxygen!!
« Reply #13 on: Mar 26th, 2002, 11:16am » |
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My doctor tries, but he really doesn't know much about cluster..... He wrote the script for 2... so it was him, not the oxygen company. When I called about the oxygen - his nurse called back and said that it wouldn't really help but he'd prescribe it anyway.... So, they don't understand.
I am going to see a new neurologist at the end of next month - he's the head of the local headache clinic so I'm figuring he will know what he's doing!!! One can hope.
The funny thing is I got the oxygen yesterday and I haven't had an episode.... I had a migraine last night, but no cluster..... I skipped my 1:30-2:30 PM one yesterday.... We'll see if I'm so lucky today!
Mark
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The clusterhead formerly known as williamsmh.
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Glenda_J.
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Re: I Just Got Oxygen!!
« Reply #14 on: Mar 26th, 2002, 12:47pm » |
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Actually I had been the same way lately, I had been shadowing really hard so I wanted to get just to be safe but now I haven't had more than a couple shadows. But I'm not gonna complain  Hope all goes well with you.
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MarkHW
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Re: I Just Got Oxygen!!
« Reply #15 on: Mar 27th, 2002, 7:46am » |
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Thanks for the info....
I had 2 clusters yesterday. The first one I used the oxygen on and within 20 minutes aborted it!!!!!!!!
But later in the day I wasn't home and had another one, so.... I had to inject. But at least I missed one bought.
I turned the tank up to 8 (as high as it goes) and got a mask (not the right kind, but better than tubes). It worked!!!! I will be asking my neurologist when I see him about a better set-up.
Thanks for all the information - it helps a lot!
Mark
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The clusterhead formerly known as williamsmh.
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Ueli
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Mark,
if your mask is labeled "Oxygen Mask" that does only mean it doesn't go up in flames when it comes in contact with pure oxygen. 
It will probably have some holes around the inlet, designed to suck in room air and dilute the oxygen. That's ok for longtime breathing of enriched air, but not exactly what we need. 
So you should get hold of mask with non-return valves and a reservoir bag as soon as possible. In the mean time cover these holes with some sticky tape.
PFNAD's
Ueli
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MarkHW
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Re: I Just Got Oxygen!!
« Reply #17 on: Mar 27th, 2002, 9:17am » |
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Thanks for the tip! I was covering the holes with my hands, but that got annoying! duh.... I should have thought of covering it with tape.
I am working to get in with my neurologist quickly and get everything I need.
Thanks...Mark
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The clusterhead formerly known as williamsmh.
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