Giving CPAP another try. Does not seem to work. How to set?

[ccualumni]

I was first diagnosed with CPAP about 3 years ago. I received a CPAP machine, went through about 4 different masks and never felt better or different.

My CPAP machine is: REMstar Pro M (IIRC)

I decided to go a different sleep doctor as I was not happy with the first one or her office (unprofessional and they did not listen to what you were telling them).

I had my 2nd sleep study a couple of weeks ago and of course they told me I have sleep apnea. I was also tested for narcolepsy, which they said I do not have.

I have a few questions that I am hoping someone can help me out with.

1. The CPAP machine never seemed to make me feel better or more rested, etc... How do you know if it is working or not? I have read some posts where people say they feel like a new person when they are on CPAP.

2. I did the sleep test where you use their CPAP machine and the mask they give you, and I was still tired the next day. It just seems like CPAP does not help me. The tests show that I need it, but I am not sure if I see why I would use it if it does not help me or make me feel better.

3. They are going to change the setting on my machine to be a 14. It is set on something like a ramp up from 4-12 (or something like that). I used to have instructions to adjust the machine. Does anyone know where I can get a new set of instructions on how to adjust my machine? The place that I am set up to adjust it is an hour drive from my job, so it will take me at least 3 hours to go there, back and get them to help me. I will get my supplies from a closer place, but I am not driving 2 hours to get my machine adjusted. I told my doctor's office that the place they set me up for is so far away and I want a closer place and they said they can come to me. Of course, they will go to my house, not to my work. That means I have to take vacation time... Anyway, it is annoying.

4. Is it possible that by adjusting my setting, it will help?

5. If my doctor has asked me to go up on the machine to a 14, does that mean my apnea is getting worse?

6. Last question.... I have not met with my doctor since the sleep study. The doctor's office called me and said they were setting me up with a new machine and supplies and I would go in next Monday to get everything and to review the new machine. My insurance company said they will not pay for a new machine since mine is only 3 years old (not a big deal). The problem is that the doctor's office called me back and said that there is no need for me to come in now. They will set up an appointment in a month to see how things are going. Shouldn't the doctor bring me in to discuss my results? The secretary there did tell me I have apnea and that my narcolepsy (MLST?) test was not conclusive, but it looked like I did not have it, but that something is making me tired.

MLST (narcolepsy) test: You do 20-35 minute naps every two hours. I fell asleep within about 2 minutes or less each time that I tried to nap and they had to wake me up after each nap. I just find it strange that the CPAP machine did not help me and I am exhausted, yet I guess it just is what it is.


Sorry for the long post and multiple questions, but it does not seem like the doctor's office is going to be much help.

Thanks

[Goofproof]

1. Results don't come over night.

2. Results only come for most, after your treatment is correct, to find out about that you need a machine that records full data during the nite, and the software to read the data. By posting the "Dailies", from that software, the people here can guide your treatment to provide results.

3. In part of your post you say you are using a Pro, in another you say you are using a Auto. You need to find out which machine you have. The info should be on a sticker on the bottom of your machine, also a pic can be hosted on a photo sharing site and linked to the forum.

4. Some of us adjust to XPAP more easier than others, attitude has a lot to do with it, some see results quickly, some don't, no matter if you do XPAP, correctly it can extend your life and it's quality, it's up to you..

Folks here will try to help. Jim

[Julie]

Hi - So much of the time problems are actually from the wrong (or badly fitted) mask, e.g. lots of leaks around the edges, or else the mask is 'only' a nasal one but if you're a mouth breather when sleeping, you may lose all your therapy air that way and really need a 'full face' mask (just a nasal one that extends to cover your mouth). Add your mask name and model to your next note and tell if it feels comfortable, whether you feel you have to wear it very tight to keep leaks away (not a good idea), how long you sleep, whether there's any possibility you could have acid reflux (GERD) when sleeping and possibly need to cut out coffee, etc. etc.

[BlackSpinner]

Please remember that feeling tired is just one symptom and not everyone has it. You may still feel tired for months or maybe always, however the rest of your body functions will be feeling much better for you sleeping and having proper amounts of O2. Organs like your heart and brain.

If you need a pressure of 14 now then that is what you need. We all get older and our bodies change or it could be that your pressure was never correct to begin with.

[Goofproof]

Please remember that feeling tired is just one symptom and not everyone has it. You may still feel tired for months or maybe always, however the rest of your body functions will be feeling much better for you sleeping and having proper amounts of O2. Organs like your heart and brain.

If you need a pressure of 14 now then that is what you need. We all get older and our bodies change or it could be that your pressure was never correct to begin with.

Or as you were given a nasal mask, you could have been mouthbreathing, and your treatment could have been useless. Also if using the ramp crutch, it could take too long for the pressure to control your apnea, the same for to wide a range for a apap.

Many things can cause failure, with a machine that collects full data, you are flying blind, that's how many doctors and DME's, want it. Information is your friend. Jim

[kteague]

Hello and welcome. About the MSLT, I've had a few of those. Along with how long it takes to fall asleep in the naps, they also look for how many naps you hit REM stage sleep.

Hopefully this time around with the help of data monitoring you can optimize your treatment and get some identifiable results. This board is great for helping with that. Once you know the treatment is doing its job, no matter what you feel or don't feel, you can take comfort in knowing your body and brain is no longer repeatedly oxygen deprived every night. That alone is enough to make continuing with the treatment worthwhile. Get a copy of your report and find out exactly what is happening in your sleep. That can be a motivator.

Best wishes as you go forward to master this thing this time around.