recently diagnosed and recent CPAP user - my story

I am 35 years old in good health and good shape. I have not been sleeping well for the last 13 years or so. I believe that gradually over the years, I became more and more sleep deprived. On average days I guess I slept 3-5 non consecutive hours a night, and I remember waking up many times. Sometimes I would be dead tired and all I could get was a 2 hour sleep with waking up many times. Many days I felt I just want to get home and go to sleep, even though sleeping earlier wouldn't make much of a difference. For years I felt low energy and the lack of doing anything yet I still pushed and forced myself of functioning in day to day life. On rare occasions (maybe once or twice a years), what I call a complete system failure occurred - I was SOOOOOOOO tired that I probably managed to sleep 4-5 hours straight, recharging my batteries from %5 to %10. But that was very rare.

I attributed this to psychological issues as I'm dealing with certain things in my life and such. So I recently went to see a psychologist and one of the things he offered me to do was a sleep study. So I had my first sleep study a few weeks ago. A followup call after a few days told me that I am borderline but I should come back to do a CPAP study (the insurance paid for both - had to fight them really hard). I woke up that morning from what I can only describe as a "deep state of sleep". I felt like I was in a deep hole and had to climb out (this was actually a good feeling). I don't remember when was the last time I had such a feeling of waking up in such a deep state of sleep. The technician smiled at me and asked how I was feeling. I told her tired but a different type of tired. She said she can't really go over the results with me but she told me I didn't snore and definitely slept better.

The Dr. order the CPAP device and I got it a few days ago. I asked the person who delivered the device and training what model it is and he said Respironics Remstar 550p. It comes with a humidifier and relatively quite and easy to work. I have a mask which covers face + nose as I'm usually a mouth breather so I try to breath through my nose and have a good success rate with that so far. Anyways.... I was hoping to sleep at least 7-9 hours straight every night but so far I think I'm sleep more like 6-7 and I woke up 1-2 times. HOWEVER, on a few occasions I woke up it was again in that deep state of sleep which never occurred to me in the last who knows how many years.
Though I am tired in the morning, it is a TOTALLY different feel of tiredness and I no longer wake up 4-6 times (that I can remember). Although only sleeping with the CPAP for less than a week, I think it becomes easier each night to sleep with it (it wasn't that hard to begin with). On top of that, I'm recovering from a really bad cough I had for 2.5 weeks (so bad my chest muscles hurt when moving/breathing), so I'm sure when that goes away I'll sleep even better.
My pressure is 11cm. I'm meeting with my Dr. this upcoming Friday (he is a pulmonologist specializing in sleep medicine) and he'll go over the test study with me and answer any questions I have.

I read that very few people had miraculous results after only a single day. I guess I had too much high of expectations. But perhaps whatever goes on while sleeping that wasn't performed in my body for 13 years will take more than a few days to completely fix. I did notice that a certain state of constants agitation/anxiety which I felt for many years is hardly there anymore, and that happened immediately after a one night sleep. When in an elevator, I used to always lean against the wall because when I was "stationary", sometimes I felt sort of a dizziness which I don't feel anymore. I do notice I already smile more often and hope that things will continue to improve. I hope that 1-2 months of using CPAP will prove to make an even greater difference.

I'm posting this to share my experience and to get feedback from other people. I will keep updating it so other can learn and provide useful feedback.
Are there any specific question I should ask my Dr. when I meet with him?

P.S.
It is now safe for me to sleep within 30 miles of a graveyard without disturbing the dead (no more snoring).

Welcome to the forum.

Remstar 550...likely the PR System One ...does it look like this one https://www.cpap.com/cpap-machine/respi ... -flex.html

If so you have some software options. Please check out my signature line for a link to the options. I have SleepyHead links in my signature line as well. Unless you happened to get a 60 series machine (SleepyHead won't work with it yet) I think SleepyHead is easier to manage but you do have an Encore software product available if you have the 60 Series machine.

That overnight miracle thing???? We read about it and think we will have it too but more often than not we don't so it takes quite a bit of time for the improvements to be noticed. So don't be disheartened if you don't feel the miracle that others report. Most of us don't feel the miracle right away and some never do but we keep plodding along using the machine just the same. Though we do suggest getting the software so we can make sure things are optimal and that the events and leaks are well controlled before we say "just give it time". If something needs to be worked on then work on it first.

You might add your equipment to your profile so we can see at a glance what you are using and not have to ask. It helps us help you better and faster if we already have that information.
If you do have the Remstar PR System One machine at above link then look for PR System One grouping of equipment for your machine and humidifier..don't look for Remstar as being the first word. Respironics uses Remstar on all of its machines and so we can't go by that.
wiki/index.php/Registering_Equipment_in_User_Profile

Welcome! It took me about 4 months to really adjust to everything. That included medications, bed time, and of course, equipment but now that "it" has finally happened, I feel great! I think "it" will happen for you also!

Pugsy wrote:Welcome to the forum.

Remstar 550...likely the PR System One ...does it look like this one https://www.cpap.com/cpap-machine/respi ... -flex.html

wiki/index.php/Registering_Equipment_in_User_Profile

I think so, though I think my unit color is gray. I also have the data card and a wireless thingy attached to it.
I remember when scheduling the appointment I asked about the device and was told it is System One.
I'll look at the back of the device to see if there is any additional data.

If it is indeed this device, is it considered a good one?

There are 2 PR System One Auto CPAPs......one is the regular first model (the link I gave above) and this one which has the heated hose and is called the PR System One Auto 60 series....a little different color..https://www.cpap.com/productpage/pr-sys ... -tube.html on the plate where the screen is.

The 60 series machine is not yet supported by SleepyHead but is being worked on now. This new model of machine was only release a short while ago.

If you are unsure which machine you have you can try SleepyHead and if it won't give you any data then you will have your answer. Either way if you determine that you do have the heated hoses 60 series machine just send me a private message and I will help you out with some software information that will work with the 60 series machine.

To answer your question..Is it a good machine? Yes, it is an excellent machine...either model with or without the heated hose it does a great job.

The heated hose model number is 560 and the unheated hose model is 550. This number is on a sticker on the bottom of the blower unit.
The modem is for compliance usage remote gathering of hours of use. You can remove the modem and see the slot where the SD card should sit. If no SD card you can buy one as any generic plain SD card will work. I am unsure about the fancy SD cards for HD images. I got mine at Walmart and it was a 2 GB Sandisk SD card for about $9 and it works fine.

The PRS1 Auto's model number is DS550, so unles the DME was lying (and DMEs never do that ) you've got a good machine there, fully data caPable with Sleepyhead.

Welcome to the forum. Just wanted you to know that sleeping 6-7 hours at the beginning is a great achievement! I think you're going to do great(one of our "ducks") once you're able to see and understand your daily data and making sure you have the best mask for you. Ask lots of questions, there are very knowledgeable cpappers here. Good luck and keep us posted.

Thanks guys. I checked again and it is the same machine as the first link provided (for some reason I thought it had a lighter color).
On the bottom it reads:
◦REMStar Auto
◦REF 550p

I'll do some more research in the time being and will post more information after my Dr. appointment this Friday.

Small update - a few days ago, I noticed in the morning that the CPAP pressure reading was 4.8cm when I woke up.
I thought that perhaps I removed the mask first before checking so I didn't pay attention, though I do remember not feeling the "regular" pressure at night.
Then the next day I noticed it was 4.0cm when I woke up. I called the service desk and they scheduled a technician to come tomorrow (which is today).
Today I woke up and the pressure read 6.0cm.

While I don't recall waking up at night, I felt tired in the morning almost as if I didn't use the CPAP (the old fashioned tiredness).
Anybody has any insights? The only intelligent guess I can make is that the pressure helped to some extent, preventing apnea (arousals) but still insufficient pressure for optimal air flow which might have interfered with proper sleep phases/cycles.

justacpapuser wrote: The only intelligent guess I can make is that the pressure helped to some extent, preventing apnea (arousals) but still insufficient pressure for optimal air flow which might have interfered with proper sleep phases/cycles.

Some people do find that the lower pressures like 4 to 6 can be rather stifling. Not enough air moving for comfort even if the pressure is adequate for event prevention.

You also need to look at your reports and see what the data is showing to make sure that the pressure is preventing the events optimally. When using APAP with a low minimum pressure the machine takes its time getting up to higher pressures and sometimes can't get there quickly enough. Contrary to what is thought the machine can't go from 4 cm to 12 cm (if that is what is needed) in the blink of an eye. Instead it goes up in stages and while going up in stages it tests things along the way. This takes a little bit of time and sometimes the events come and go while the machine is raising the pressure.
The fix for this is to have the minimum pressure a little closer to where it might need to be. Give the machine a head start.
So check out your reports for AHI (all categories) and see what is going on. Then you can decide if the events are responsible for less than optimal feeling or not and discuss it with your doctor or if you are comfortable with making a minor change...do it yourself if you think that is the problem.

What is your machine settings? What is minimum and maximum?

Pugsy wrote:

justacpapuser wrote: The only intelligent guess I can make is that the pressure helped to some extent, preventing apnea (arousals) but still insufficient pressure for optimal air flow which might have interfered with proper sleep phases/cycles.

Some people do find that the lower pressures like 4 to 6 can be rather stifling. Not enough air moving for comfort even if the pressure is adequate for event prevention.

You also need to look at your reports and see what the data is showing to make sure that the pressure is preventing the events optimally. When using APAP with a low minimum pressure the machine takes its time getting up to higher pressures and sometimes can't get there quickly enough. Contrary to what is thought the machine can't go from 4 cm to 12 cm (if that is what is needed) in the blink of an eye. Instead it goes up in stages and while going up in stages it tests things along the way. This takes a little bit of time and sometimes the events come and go while the machine is raising the pressure.
The fix for this is to have the minimum pressure a little closer to where it might need to be. Give the machine a head start.
So check out your reports for AHI (all categories) and see what is going on. Then you can decide if the events are responsible for less than optimal feeling or not and discuss it with your doctor or if you are comfortable with making a minor change...do it yourself if you think that is the problem.

What is your machine settings? What is minimum and maximum?

My pressure is (or rather was) set to 11cm. When using the ramp (gradual increase), I could clearly see it on the display climbing up and feel it. However, during the last 3 days this hasn't happened at all. I don't think I am supposed to have a variable amount of pressure applied but haven't spoken to my Dr. yet. I am having a CPAP technician come later on today to check the device.

As for AHI, I tried navigating to it on the menu but there isn't an option available. The manual states that it should be there only if the device was configured to show that option.

When the technician gets there tell him to unlock that option. Your machine is an auto you have the option to see and download all of your data......they have probably just locked you out. If the tech says he can't do it, just smile and say thank you. Then go to apneaboard.com and download the clinicians instuctions and you can do it yourself If you take a look at Pugsys avatar, she has a blog at the bottom that tells you what to do to see your stats via your computor daily, I'm pretty sure you have 2 options to download and read your stats, one is Encore and the other is Sleepyhead. I have a similar machine and have to use a card and card reader to read my stats, but I don't believe you do. Pugsy is our go to gal when it comes to reading our stats.

Do you have the provider/clinical manual for your machine? If not you can request one here. It tells how to unlock the setting so you can see the on screen data.
http://www.apneaboard.com/adjust-cpap-p ... tup-manual

There is a video here. http://www.cpaplibrary.com/machine-education

Instructions with pictures on how to access the clinical menu to turn on the feature so you can see your on screen data as well as pressure settings..here http://www.apneaboard.com/pr-system-one ... structions

It sounded to me like your settings were auto adjusting pressure settings (APAP mode) because you said you saw a different pressure when you woke up.

Get the software that I have links for in my signature line to see for sure what your pressure is doing as well as any events that may or may not be showing up which might be suspect for feeling less than optimal.

Good luck, thanks for posting. Our journeys are all so different.

Pugsy wrote:Do you have the provider/clinical manual for your machine? If not you can request one here. It tells how to unlock the setting so you can see the on screen data.
http://www.apneaboard.com/adjust-cpap-p ... tup-manual

There is a video here. http://www.cpaplibrary.com/machine-education

Instructions with pictures on how to access the clinical menu to turn on the feature so you can see your on screen data as well as pressure settings..here http://www.apneaboard.com/pr-system-one ... structions

It sounded to me like your settings were auto adjusting pressure settings (APAP mode) because you said you saw a different pressure when you woke up.

Get the software that I have links for in my signature line to see for sure what your pressure is doing as well as any events that may or may not be showing up which might be suspect for feeling less than optimal.

It was NOT initially so. I remember feeling the pressure ramping up and reaching a certain point and in the morning it always read 11cm on the display. But on the fourth day I just viewed the settings and such and change two of them which I think had to do with automatically shutting the air pressure on or off (depending if it detects the mask is off) but I don't believe I changed anything for auto adjustment.

But I'll see what the technician says.

On a totally different note, I have a mask related question. I can hook the hose all the way on the mask part but it doesn't come of easily. I can easily take of the hose with the part of the mask (circular ring like part) and easily connect it back to the mask like that. Any pros/cons?