my experience/education

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Posted by sonya ( on August 12, 2001 at 01:20:00:

In Reply to: Oxygen flowrate posted by Bernadette on August 11, 2001 at 18:01:14:

if you'd ask and neurologist over a regular doctor about oxygen for clusters, they would know.
Regular docs are NOT familiar with this stuff. Okay, your sister probably needs to get a prescrip of Maxalt Disovling tablets and some verapamil too. My doc has me on 80 mg tabs you take four times a day. YOu got to build up this stuff. Oxygen is great for breaking attacks, but mid cycles are viscious... and using some maxalt or imitrex or something like that will give her much much relief. But your going to need a neuro. Also, once you have a neurologist treating you, he'll educate you better. Be careful. Okay, my experience on oxygen and the questions i asked too. Don't fall asleep with oxygen. I use to do it on level 2... it kept me from going into an attack BUT you can get oxygen build up... toxitity. Not common, but can happen. So... remember that. Got that from my oxygen people. They are educated. Okay, I found out that there is a difference between using the nasal thing, the mask thing and when to use a bubbler. FOund out if you use a bubbler OVER 6 liters per minute that you can pop the little canister. Okay, not sure, but that's what the oxygen tech told me. So... for me, the bubbler didn't help. I found out your NOT suppose to close up those little holes! I know somebody here said they tape them up. not good, the oxygen tech said you need to expel and have an escape route for you (what's the stuff you breath out?) ... and that way your body will get more oxygen and not breath back in what you expelled out which is the opposite of oxygen... okay, I got pretty educated last year and asked the neuros and people educated on this stuff. It's your life. One thing they told me is that people with lung problems would often be told to leave it on 2 liters per minute so they would think that 4 liters per minute all day would be even better! However, they did alot of damage to themselves. I know we are different... for us, the neuro said, 10 - 20 minutes at a time a few times a day. That's why your sister needs some maxalt or something. Personally, this is what my routine is. The ch starts, I down a maxalt and turn on my air to 10 to 15 liters per minute. I get a J tank delivered to my house. Anyway, about 10 minutes later, the oxgen starts to break the attack. Since I have the maxalt, that kicks in too and gives me relief for about 5 hours. IF you don't have maxalt or imitrex, then I would leave the oxygen on for an additional 10 minutes... even after the attack.. but i'd put it down to 6 to 8 liters per minute. I was using a nasal thing, but the tech told me that using a mask was better for high flows. Still, the mask bugs me and I use the nasal thing but put it outside my nose... personal thing.

Good luck, and find you a neuro who can get this prescribed for you. They'll be able to monitor your health. feel free to write me, by the way, this is only what I was told... doesn't mean others or right or wrong... it's just what my neuro and oxygen tech told me. good luck.

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