"please keep me updated about oximeters "
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Setting my own pressure
I have been on CPAP for several years with no relief from extreme fatigue, even upon waking after 9 hours sleep. Would it be OK to up my own pressure to see if that had any effect? I am now at 15. This is all without my drs involvement.
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Replies to This Discussion
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Permalink Reply by Andy on
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I'd plan on an appointment with my doctor as soon as possible.
If you've been on CPAP for years with no relief, then something needs to be done.
Rather than toy around with pressure settings, it might be time for another sleep study.
At the very least, I'd discuss with my doctor the appropriateness of setting the CPAP on auto for a while, and see what the machine thinks you should be on, and how you respond.
If your doctor is unsymathetic or uncooperative (and I don't mean just agreeing with whatever you say) then look for another doctor. With increased awareness of sleep disorders, there is likely more doctors available now than several years ago when you began.
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Permalink Reply by Virginia Mitchell on
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Andy said:I'd plan on an appointment with my doctor as soon as possible.
If you've been on CPAP for years with no relief, then something needs to be done.
Rather than toy around with pressure settings, it might be time for another sleep study.
At the very least, I'd discuss with my doctor the appropriateness of setting the CPAP on auto for a while, and see what the machine thinks you should be on, and how you respond.
If your doctor is unsymathetic or uncooperative (and I don't mean just agreeing with whatever you say) then look for another doctor. With increased awareness of sleep disorders, there is likely more doctors available now than several years ago when you began.
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I did make an appt. with my dr., thanks to all the supportive relies here. Since he is the only one covered by my insurance I will need to work hard to work with him. Thank you all for your help.
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In talking to my CPAP supplier they do all the setup and are very knowledgeable, they gave me a APAP to use for FREE that will determine my optimum pressure rating.
After talking to them for a while and asking tons of questions, they said that some people feel that they are not getting any more benefit, from the CAPA they then want to Increase the pressure, he said this most always is the Wrong thing to do.
They said just enough air to clear the blocked passage and get ride of (98%-99%) of the snoring. when light snoring starts it should be cleared very quickly.
They said usually air pressure needs to be lowered, especially if you have lost weight due to the effectiveness of the CPAP.
I agree it would good to at least use a Diagnostic Free Loner Auto CPAP, from you local CPAP distributor, as I am doing. This may give you some current information on how you are doing.
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Permalink Reply by Mark Douglas on
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Virginia Wow -- several years on CPAP and still fagitued -- you sound exactly like me. I was sorta lost, I had extreme fatigure too. I just hoped my doctors would make it all work.
Big mistake. The doctors did NOT make it work. I had a sleep doctor, a heart doctor, a regular doctor. But I can't blame them ----I should have demanded answers and results. I should have been my own case manager..
I didnt even know enough to get online and look stuff up and get input from others. So you are on the right pathl congrats!
I quit using my CPAP, cause it didn't help.
Fatigue is very scary symptom frankly. I ended up with 5xbypass, and after that, I DID demand answers . I did get much more aggressive. And it helped. Im no longer fatigued, I can exercise an hour or more, I rarely need a nap, and I don't have to take provigil at all. I wish I had known this stuff before.
I would get your CPAP checked -- and don't let them give you the run around. I had to take mine in TWICE before they actually checked it. The machine was defective, and they got me a new one. That helped. I dont know how long that first machine was defective.
Mostly I would insist -- absolutely insist - on overnight oxygen test at home, while you use CPAP. And I would do that ASAP, if not STAT. I would not let them wait a week, or wait till "Marsha" comes back from vacation or whatever.
We should all be doing our own overnight oxygen test anyway, once a month or so.
And you should get checked out by a cardiologist -- for that fatigue. Low overnight oxygen CAUSES heart disease and fatigue - not maybe, --- its undeniable. You will go through a bunch of diseases if your overnight oxygen is too low
As to your question about upping your top limit to 16. I had a range 7-15, and I upped it myself to 16,. That did lower my AHIs from 5.2 to 4.7. Good luck. Please learn your overnight oxygen.
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Thank you, Mark, for your response and taking the time to exxplain. I sensed the urgency in it, particularly overnight oxygen. I have an Oct. 4 appt, with my sleep dr. but will call tomorrow to try for sooner. Again, thanks. Virginia
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Permalink Reply by Jason on
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Mark Douglas said:
We should all be doing our own overnight oxygen test anyway, once a month or so.
So how do you do the overnight oxygen test?
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Permalink Reply by 99 on
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ether ask your dr or therapist or whoever or purchase a recordable oxymeter the operative word is recordable
Jason said:Mark Douglas said:We should all be doing our own overnight oxygen test anyway, once a month or so.
So how do you do the overnight oxygen test?
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Virginia -- the reason I say you have to demand these things -- in my experience, you do. We people with fatigue and sleeping issues understand that we have to move the chess pieces down the board, because often the doctors do not.
I went to my sleep doctor with tales of woe about this dangerous episode I had in hosptial after my heart sugery, with low oxygen overnight, with alarms going off all night, and the nursing talking to the surgeon 2am on the phone, and the surgeon almost came in. .
My surgeon wouldn't deal with sleep issues, and refered me to my sleep doctor. SO I told my sleep doctor all this. He was insistent we had to get to the bottom of this, he seemed very concerned and eager to solve the problem. I thought good, he is on it.
But he scheduled a sleep test a month down the road. I resigned myself to have this hanging over my head for a while.
My sister, who is in the health field, said to put the doctor on the spot and make him explain himself. Why is he waiting a month?
I finally got him to return a call, and I ask why wait a month? If this is life or health threatening, lets find out tonight with a simple pulseox --(he has them in every exam room)
He said meekly -- okay. . Nothing changed -- I just demanded an answer. And out pops the pulse ox overnight test -- something he knew full well he could do immediately. The whole thing is disgraceful. As soon as I mentioned low oxygen overnight, he should have been reaching for the recording pulseox, and he knew it.
My point is you have to take charge and you have to be informed, or you are just at their mercy. Which is fine, if they are your advocate, but often, they are not.
The truth was, he wanted $2500 overnight sleep study in his lab. He gets nothing for loaning me the pulseox.
I think we can adjust our pressures a little, if we are very informed. I'm frankly tired of the WIzard of Oz syndrome, where doctors are some mysterious behind the curtain Gods. Especially after some of the totally incompetent, neglectful things I've seen. If the doctors were on the ball, and their agenda was really our health, fine. Wait for them to do anything.
But not me, not any longer, I've seen too much.
I did adjust mine .5 and then .5 again. But I would not go further -- and I got feedback from the data on my CPAP, as the AHIs went down.
Virginia Mitchell said:Thank you, Mark, for your response and taking the time to exxplain. I sensed the urgency in it, particularly overnight oxygen. I have an Oct. 4 appt, with my sleep dr. but will call tomorrow to try for sooner. Again, thanks. Virginia
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