New to CPAP... Where to begin?

Okay.... So I guess I should give a little history... But I'll try to keep it short, simple, and to the point!

Several family members of mine have OSA. I've been feeling symptoms of it for a few years, and last year I was so annoyed with being completely exhausted all the time, I decided to visit a doctor. This was my first time seeing this doctor she's just a regular family physician) and I told her my issues, and she conducted the "sleepyness quiz" or whatever it was and she determined that I was at risk for having OSA. So she sent me for a sleep study. I had the sleep study done, and personally, I don't feel like I slept anywhere near as normal as I should have... During the study I never slept with a CPAP. I only slept with all the minitors and stuff. So, my doctor calls after a week and tells me that I do indeed have sleep apnea. She never went into details about it, or really explained how bad it was. She just told me that I had it and that I'd be getting a call from a CPAP supplier to get my CPAP. So they CPAP people called and asked for my insurance and all... Long story short... insurance wouldn't cover a thing, so I was gonna have to pay it all out of pocket. The machine was going to be like $1500. Money we didn't have at the time. My husbands cousin (of some sort... they're realated somewhere down the line) owns a medical supply place. So we contacted him and he was able to get me a machine for only $750. I got the Philips Respironics System One REMstar Auto A-Flex with Humidifier. I also got the Respironics Comfort Gel Full Face mask. I never heard from the doctor again. She never told me to set up an apointment to check my progress or see how it was working out. Nothing.... I also never spoke with the doctor who was looking over my sleep study or whatever, I only spoke with the guy who conducted the study that night.... Anyway....


Okay, so I got the machine home and tried it and I just find it hard to get used to. I used it for awhile, but never saw a huge difference. Maybe I quit using it before it really started to help? I don't know... but fast forward months later and I'm feeling so tired and everything again... and I thought maybe if I did a little online research that I could figure something out on my own. And I found this place So.... maybe you guys can help me?

What should I do? Where do I start? I have no idea if where we got it made any adjustments to the machine, or anything. So maybe the machine just isn't adjusted correctly? I have no idea.... I just feel like I was given this piece of equipment and left to fend for myself.... I just don't know what to do... Any help or guidance would be greatl appeciate. Thanks!!!

You might want to contact that doctor and ask about a titration study whenre they figure out what pressure you should be using. You are totally in the dark right now about what you should be doing. I would make another appointment with that doc to find out what is going on.
You might also start by reading everthing on the site about CPAP. See the lightbulb at the top of the main page and read that section.
Do you, or the man you got the machine from, know how to set the pressure? Since it's an auto machine you can start with the lowest preeure at 4 and the highest pressure at 20 and ask for advice after you've tried that. Forum members can coach you through the process, but it would be much better to have a titration study if possible.

You got a great machine, but NO support to make it work. The machine will be uncomfortable and will not work for you unless the correct pressure settings have been determined. Somehow, that step--called a "titration study" got missed.

First, you should contact the sleep center where you had your first test to see why they did not do a titration study (with the CPAP on to determine your pressure). If they just overlooked you, then get in there to do the titration study. If they didn't do it because of insurance issues, the machine you have can be used to titrate you at home, BUT you have to understand what you are doing.

So first step--contact that sleep lab and let us know what they say. Also, request a full copy of your report (not just the summary). You can post it here when you get it.

Hi Dandelion,

Welcome to the community, but sorry to hear you need to join us.

By finding this site and posting your query, you've taken the most important step in the process: taking responsibility for your therapy and making sure that your needs are met. Following through to become a successful CPAP user will make you feel so much better.

It sounds like you never got titrated at the sleep study, and that your machine hasn't been setup to your individual needs. If you browse this site, you'll see lots of new CPAP users working through their initial difficulties, and they have at least got their initial machine setup done (more or less) right.

If possible, I would recommend you get a second sleep study (or titration) done to find what pressure you should be at. You might be able to find it out on your own through trial and error, but you'll have plenty of other learning experiences going on that could delay finding the right pressure(s) for you. I would think getting at least an initial pressure from a professional would be worth it. I would also ask if you could bring your existing equipment in so they could show you how to adjust it etc.

You might need to see your doctor again to get the titration study. If she isn't pretty concerned at your situation, I would consider finding another doctor.

I would also call your insurance and find out directly if they'll cover anything CPAP related. (It wouldn't be the first time a DME has misled a new CPAPer.)

Do lots of reading and studying on this site for what a new user needs to know. It'll make the whole process less intimidating and perhaps let you get more out of your titration study.



Also, please put your equipment into your profile and set the display mode to text so that people can see exactly what equipment you have at a glance and be in a much better position to give you specific advice.

Janknitz wrote: You got a great machine, but NO support to make it work. The machine will be uncomfortable and will not work for you unless the correct pressure settings have been determined. Somehow, that step--called a "titration study" got missed.

First, you should contact the sleep center where you had your first test to see why they did not do a titration study (with the CPAP on to determine your pressure). If they just overlooked you, then get in there to do the titration study. If they didn't do it because of insurance issues, the machine you have can be used to titrate you at home, BUT you have to understand what you are doing.

So first step--contact that sleep lab and let us know what they say. Also, request a full copy of your report (not just the summary). You can post it here when you get it.

See, I thought something was missed... because the guy that did my study the nurse guy that hooked me up to the machines and all) said that I'd have to come back at some point and have another study done and sleep with a cpap machine. Well a few weeks after I was diagnosed the sleep study people called me and wanted to know if the doctor had told me to call them and set one up. I told them I had not heard anything, and that I had already had my equipment. She said she'd call my doc and find out and then call me back.Then when she called back, she said my doc told her I had an auto machine and didn't need that done. So that I didn't need to worry about it.

I'll call the sleep center and see what they can tell me and if I can get a copy of my study. I guess I just kind of feel stupid for waitng so long to call. But, I'm just so tired all the time, and I can't stand it any longer.

JointPain wrote:Hi Dandelion,

Welcome to the community, but sorry to hear you need to join us.

By finding this site and posting your query, you've taken the most important step in the process: taking responsibility for your therapy and making sure that your needs are met. Following through to become a successful CPAP user will make you feel so much better.

It sounds like you never got titrated at the sleep study, and that your machine hasn't been setup to your individual needs. If you browse this site, you'll see lots of new CPAP users working through their initial difficulties, and they have at least got their initial machine setup done (more or less) right.

If possible, I would recommend you get a second sleep study (or titration) done to find what pressure you should be at. You might be able to find it out on your own through trial and error, but you'll have plenty of other learning experiences going on that could delay finding the right pressure(s) for you. I would think getting at least an initial pressure from a professional would be worth it. I would also ask if you could bring your existing equipment in so they could show you how to adjust it etc.

You might need to see your doctor again to get the titration study. If she isn't pretty concerned at your situation, I would consider finding another doctor.

I would also call your insurance and find out directly if they'll cover anything CPAP related. (It wouldn't be the first time a DME has misled a new CPAPer.)

Do lots of reading and studying on this site for what a new user needs to know. It'll make the whole process less intimidating and perhaps let you get more out of your titration study.



Also, please put your equipment into your profile and set the display mode to text so that people can see exactly what equipment you have at a glance and be in a much better position to give you specific advice.

I actually just got on new and better insurance, so hopefully I can see about getting another study done and finding out what I need to do from here. I found a doctor that specializes in sleep disorders. So I'm going to call the sleep center first and see what tey have to say, and then possibly call this new dcotor, because aparently this other lady isn't doing her job very well.

dandelion wrote:Then when she called back, she said my doc told her I had an auto machine and didn't need that done. So that I didn't need to worry about it.

In theory, perhaps. In practice, no. You really want to know your titrated pressure and start from there.

A lot of people do quite well on straight CPAP at a constant pressure. I did for the first 9 years of my therapy.

Many people do better on CPAP (constant pressure) than APAP (varying pressure). For instance, they can be woken up by even very small changes in pressure.

You've got an excellent machine that can be set to either CPAP or APAP, and for APAP you can set the allowed range of pressures. If it's at its default settings, its range will be from 4 to 20 cm H2O, which is very, very wide. You probably won't be getting any effective assistance at 4 cm and have apneas before the machine can adjust, and the pressure changes are likely to be very disturbing.

Personally, I have positional sleep apnea so I'm much worse on my back than on my side. So, if my lower pressure limit is too low, it would decrease too far when I'm sleeping on my side, and I'd have apneas and other events everytime I rolled back onto my back. So, I've set my pressure limits so that the lower limit is my titrated pressure and that or a wee bit more is what I need most nights. (Your sleep lab/DME will want to control your pressure and for now I suggest you let them. If and when the time is right someone here can help you find out how to make adjustments.)

I have sent you a Private Message so please check your PM Box.
I have the clinician manual in pdf format if you don't have it but need your private email address since we can't do attachments here with this email system.

I have same machine as you. I do use a different mask though. It is a great machine but the onscreen data sucks. Just too limited. There is software available and also an online analyzer. Onkor, developed recently by another forum member.
It gives pretty much the same daily data as the software does but visually different. I sent you a link for it if you wish to try.

I won't try to overwhelm you with a lot of technical stuff, just offer my support and anything I can do to help, just ask.
Especially with the software or the reports. Like how to use the software and/or how to post them reports here on the forum for question and answer sessions.

Welcome to the forum. Yes a pretty steep learning curve at first but not really all that difficult. Lots of good people here willing to help.
Hardest part is the mask..... either leaks or comfort.

she said my doc told her I had an auto machine and didn't need that done. So that I didn't need to worry about it.

The PR S1 is a good home titration machine WITH a knowledgeable person who can look at the data and help you dial in the proper pressures. Kaiser uses PR S1 auto machines INSTEAD of an in-lab titration. Titration is done by leaving the pressures set wide open (4 to 20 cm) and reading the data after an interval of time (usually 1 week) to determine your optimal pressure settings.

Unfortunately, some doctors and other professionals mistakenly believe that the machine will be "just fine" and take care of any apneas you may have if the settings are left open from 4 to 20 cm, but that's NOT the case. When you are not having events, an auto machine tries to go as low as possible. And the adjustments are kind of slow. So this means that if you have an event that needs--say--11 cm of pressure to stop it, the event may be over before your machine ever gets to that pressure. And one event may trigger another, so that your machine is always chasing events, and may go higher than it needs to in order to compensate. So you are left uncomfortable (because the pressure changes may be hard to take and may disturb your sleep) and with poorly treated apnea (because the machine can't catch up). Higher pressures also cause the mask to leak more, leading to more discomfort and disturbed sleep. No wonder you don't feel any better!

Thus you need either an in-lab titration or someone who can look at your data and dial in a better pressure range for you.