New BiPAP Machine

[Sleeplessintulsa]

Good news! I finally got my new BiPAP machine and updated my profile, accordingly. Took forever to get the doctors, insurance, and supplier to all get in line, but it is done. I've been using it for a month now, and it's much more tolerable than the previous one. The mask doesn't give me any problems, I'm easily able to wear it for the 6-7 hours that I sleep, and I have no trouble with the pressure. Infact, that's a bit less than before, though supposedly because I'm sleeping more efficiently now. According to the data, I'm experiencing very few leaks and it's resolving my complex sleep apnea.

The bad news is despite all that, even after a month of using it diligently, cleaning it properly, and complying with everything, I feel no different now than before. I still wake up extremely tired, and it takes me hours to get my day going, even with caffeine, if at all. Early last week, my supplier's excuse was that it was "REM rebound" which sounds like a really bad excuse to me with no evidence to support it, from what I can tell. Even if that were true, they said that if it continued to be a problem, to call back in a week or two, which I did today, and they said they couldn't change anything without the doctor's authorization. They said it could take months for this to really work for me. I'm not asking for an overnight miracle here. I just want to feel something different, some hint, an inkling that this is remotely working, even on a very small level.

Unfortunately, my next appointment with him isn't for a few weeks, and he doesn't have anything available before then. Worse, I don't think the machine is the problem. Everything there is fine. I don't think the settings need to be changed or anything. I'm just not feeling any results. My impression is the sleep apnea is not the problem, or at least not a big part of it, since removing it for a month hasn't changed anything. My first thought was that maybe it was something that I was doing, like taking caffeine too late in the day (which I don't) or not winding down properly. However, as with so many things in life, I feel like I'm doing everything correctly, yet still not generating positive results. I also thought that I might be having some other health issue, like pancreas, liver, kidney, thyroid function, testosterone levels, you name it, but those all checked out too.

Do you have any thoughts on what might be the real problem here? None of the doctors I've seen have been able to make a dent in this problem over the years and I'm at my wit's end. Thanks for your help.

[PoolQ]

From what I have seen and experienced on this forum, you will get a good review of good sleep architecture and people asking to see your sleep data with a free program called sleepyhead (see the sticky up top).

There are lots of good, knowledgeable people here that are willing to help. If your still up, or in the morning, check out sleephead (you will need a SD card reader). The basic doctor/insurance thing is about stopping or controlling your apneas and not to make you "feel" better. Personally I am all about feeling better, as are many on here.

The data plots are a real good way to know what is happening while you are asleep and that is the only way to improve things. Apnea's don't happen when you are awake. Expect more responses when the "crew" wakes up in the morning

[Sleeplessintulsa]

From what I have seen and experienced on this forum, you will get a good review of good sleep architecture and people asking to see your sleep data with a free program called sleepyhead (see the sticky up top).

There are lots of good, knowledgeable people here that are willing to help. If your still up, or in the morning, check out sleephead (you will need a SD card reader). The basic doctor/insurance thing is about stopping or controlling your apneas and not to make you "feel" better. Personally I am all about feeling better, as are many on here.

The data plots are a real good way to know what is happening while you are asleep and that is the only way to improve things. Apnea's don't happen when you are awake. Expect more responses when the "crew" wakes up in the morning

My machine uses Phillips Sleep Mapper software and a modem connection to upload the data, though I didn't see it in the list here to put in my profile. Anyway, I'll see about grabbing tonight's data. If for some reason, the modem doesn't get the data, I do have an SD card reader. Regardless, according to my care provider, it is removing most of my apnea, supposedly more than enough to get me a restful night of sleep after a month of using it.

[JDS74]

Your equipment list doesn't show your machine. Does that mean your BiPap is a Respironics 960 ASV?
I would suggest you get SleepyHead and also get Encore. Each displays the therapy data in different formats and can help with your analysis of the3rapy shortfalls.

I don't think Sleep Mapper gives sufficient information to be very helpful.

A post from Encore of some of the breathing waveform data might give some insight into what is going on so that your sleep is not restful.
Do you have a copy of you sleep titration study? It will contain information on the rate of spontaneous arousal that may or may not result in an awakening but will impact sleep architecture and therefore restfulness.

Welcome to the club.

[Sleeplessintulsa]

Your equipment list doesn't show your machine. Does that mean your BiPap is a Respironics 960 ASV?
I would suggest you get SleepyHead and also get Encore. Each displays the therapy data in different formats and can help with your analysis of the3rapy shortfalls.

I don't think Sleep Mapper gives sufficient information to be very helpful.

A post from Encore of some of the breathing waveform data might give some insight into what is going on so that your sleep is not restful.
Do you have a copy of you sleep titration study? It will contain information on the rate of spontaneous arousal that may or may not result in an awakening but will impact sleep architecture and therefore restfulness.

Welcome to the club.

Hmm, yeah, I don't don't know it doesn't display my machine, even though I put it in the profile. They gave me the PR (Phillips Respironics) One REMstar BiPAP Auto SV Advanced machine. I'll take a look at those softwares. Looking at mysleepmapper from last night, I got 6.7 hours of sleep, the mask fit 100% of the time, and AHI was 3.9, which I understand is very good.

I'll see if I can get a copy of my sleep study. I didn't get one from the doctors.

[Pugsy]

Looks like the links to those machines are broken which happens sometimes especially if cpap.com has discontinued the item.
Just add it manually in the comments section.
It will be either the model 950 or 960...look on the bottom of the blower unit for a 3 digit number with maybe DS or REF in front or behind the 3 digits.
Once you figure out exactly which model number...just add "PR S1 model so and so" in the comments section and we will know which machine it is.

If it is the model 960 then then humidifier that you have chosen is the wrong one because that one is for the 50 series machine. Instead for the 960 the correct choice is the PR S1 60 series heated tube humidifier.....even if you aren't using the optional heated tube right now.

[PoolQ]

These machines have lots of adjustments that can be made, IMHO only by the end user for a lot of them. You can have the machine getting control over your apneas and still have every other setting set to your worst nightmare levels and get terrible sleep. You can of course also adjust the settings to get the best you can, humidity for example I personally am comfortable with a setting of zero or off, with water in the tank for what people call passive humidity. Others can only sleep with the humidity set to max, if mine was at max I would not be able to breathe even though my apnea rate would probably not change. you will need to find your best settings for several parameters.

With your apneas under control, you are almost done and CPAP is working for you, now you just have to make it more comfortable.

[Sleeplessintulsa]

Okay, I've added my machine to my profile, which IS a 960 model, so I also updated the humidifier type.

As for the adjustments to the machine, I don't know how I can tell what to adjust, or if they even need adjusting at all. While I sleep, I feel fine. The humidity is good, I can breathe clearly, the ramping pressure is very tolerable, and it IS indeed removing my sleep apnea, so I'm afraid to tinker with it. It's not like the machine is CAUSING the problem, but rather, simply not helping in any meaningful way that I care about. Sure, it's great that it's removing my sleep apnea, but if I don't feel any better during the day, then that seems rather meaningless to me. I just don't feel any different in the morning or during the day, but any number of things could cause that, especially outside of the machine's control, so how do I pin down the root cause?

A partial list of other causes that I've heavily researched, tried, and failed: a multitude of general doctors and specialists, cognitive-behavioral therapy, psychiatrists and every class of antidepressants, antihistamines, diet/exercise/lifestyle/environmental changes, various nutritional supplements like B Vitamins and Vitamin D, a physical including kidney/liver/pancreas/thyroid/testosterone/lithium function/deficiencies, SAD light, acupuncture, & biofeedback. I've also looked into ECT and isolation chambers, but those look really suspicious to me, and no doctor has recommended them to me. Note that many of these solutions did indeed work for their intended purpose, like the antihistamine helping with allergies or the BPAP resolving my sleep apnea, but none of them actually helped me feel better, physically.

[M'ohms]

When I was put on the same machine as you are now on, I didn't feel any better either. 3 months later, I noticed my fingers were blue in the morning, so I ordered an overnight recording pulse-oximeter. Sure enough, my blood oxygen was low. My doc ordered an oxygen concentrator which is bled into the ASV. I immediately began to feel much better!

[Pugsy]

Why were you given/changed to the 960 machine?
What machine did you use prior to the 960? How long did you use it?

Do you take any meds of any kind? If so, what?
How many hours of actual sleep are you getting on average?
How many wake ups during the night for whatever hours of sleep you are getting?

What is your main complaint other than "I have been on this machine for a month now and I don't feel any better"...what is it that you want to feel better?
Daytime excessive sleepiness? Daytime fatigue? Sleepiness and fatigue aren't the same thing.

You know it is very possible that sleep apnea isn't the sole culprit in not feeling as good as we would like or as good as the "numbers" say we should. These machines can't fix bad sleep if the bad sleep is caused by something else and they can't fix feeling like crap if something else is the cause no matter how much we want to blame everything that is wrong with us on sleep apnea.
Unfortunately figuring out what else might be a culprit takes a lot of detective work and then fixing it even more work (if we are lucky enough to figure out what else is a potential problem).

[cyclist56]

I'm in very much the same boat. been on APAP for two months. Just saw the sleep doctor. He said that my numbers look good, although he only looked at the summary data. But I don't feel any better. I stilll have trouble getting a full night's sleep. I check out well physically, but I'm being treated for depression with an SSRI and CBT. Some on here have said that it took many months to feel "better." Some say that they've never felt a big improvement in energy but know that treating the apnea is important in and of itself. I don't have any answers, just letting you know that you're not alone in this.

[Sleeplessintulsa]

I've got a copy of my sleep study. Is there something in particular anyone was looking for? I'll see about getting an SD card for my machine, because it uses a modem to transfer the data to mysleepmapper, which isn't very detailed at all.

Why were you given/changed to the 960 machine?
What machine did you use prior to the 960? How long did you use it?

At first, I used a regular CPAP machine. They said they had hoped that by removing the OSA, that the CSA might go with it, in part because CPAP machines are much cheaper. After several weeks of it not doing that, they switched me to a BPAP machine. It took several tweakings of the pressure settings to get it to where it was resolving my CSA, but I had an incredibly difficult time with it. After a couple months, I gave up on it. That was over a year ago.

Since that time, I reconsidered and decided to try again. I don't know if this is exactly the same machine I used before, but it looks the same. Regardless, for whatever reason, the mask and pressure are far more tolerable than I remember them being on the old machine, so I definitely like this one better. Even if it's not delivering me results, it's at least not hurting anything, which is about all I can ask for, nowadays.

Do you take any meds of any kind? If so, what?

Currently, I take 45mg of Adderall in the morning, never within 12 hours of going to sleep. I don't have ADHD, but I was originally prescribed it to jump start other depression medications I was taking. While the latter never worked, I found that the Adderall itself made me remotely functional. It's the ONLY thing I've found that has made a dent in my condition, but it's only a temporary fix.

How many hours of actual sleep are you getting on average? How many wake ups during the night for whatever hours of sleep you are getting?

Before using the BPAP machine, I would get about 7-8 hours of uninterrupted sleep every night. Now, it's more like 6-7 hours, uninterrupted. My guess is that it's simply taking me less time to get up to my currently level of crap now.

What is your main complaint other than "I have been on this machine for a month now and I don't feel any better"...what is it that you want to feel better? Daytime excessive sleepiness? Daytime fatigue? Sleepiness and fatigue aren't the same thing.

- I want to have my energy, focus, and motivation back up to normal, healthy levels
- I want to have a decent memory, instead of constantly losing my train of thought during a conversation
- I want my head to stop feeling physically foggy most of the time
- I want to be a decent human being instead of getting angry and irritable so easily
- I want my willpower back, so I don't constantly feel like I'm filling up the gas tank of my car with $5 everyday, running on fumes most of the time, wondering why I feel like crap
- I want to wake up not feeling like crap everyday, or at least 5 or 6 days out of the week
- I want to be able to remotely enjoy life, and do things because I want to do them, instead of having to constantly distract myself from how terrible I feel
- I want to be able to take a shower in the morning without feeling exhausted
- I want to get tired and sleepy at the same time, instead of getting too tired to do anything at 6pm, but then not sleepy until midnight, and feeling desperately bored, because I can't focus on anything
- I want to feel some amount of hope that I'm on the right track, beyond what others are telling me

I want to see even a hint that the BPAP machine is making ANY impact on these, no matter how small, and it is not, at all. Unfortunately, I think I've investigated every possible explanation (that I'm aware of) for why I feel the way I do, and none of them check out, but this is an unacceptable way to live, for me. I don't know what else to do. It is my hope that someone here may be aware of alternatives that I am not. Thank you.

[JDS74]

In the sleep study, look for a section that talks about arousals.

In my last study the comment was

Brain arousals per hour averaged 18, with many of these arousals appearing to be spontaneous and not triggered by respiratory events.
Spontaneous arousals 9.1 per hour.

If you have something similar, then perhaps they are causing fractured sleep architecture for you as they are for me. Mine get me fully awake from 5-7 times each night and one night in 7 hours, the number was 17 times (I counted them by taking my blood pressure each time I woke up that night - but that's another story.) Even if you don't get fully awake, frequent arousals can contribute to really lousy sleep.

[Sleeplessintulsa]

According to my sleep study, which was done on a BPAP machine:

Time recorded: 415 minutes (~7 hours)
Total arousals: 182 (38.5/hr)
Respiratory-related: 5
PLM-related: 0
Spontaneous: 177

My understanding is that this means that my arousals have no identifying cause. Essentially, my brain is forgetting to tell me to breathe. Isn't the BPAP supposed to correct that? I thought that if I stopped breathing for a certain period of time, the machine is supposed to force me to breathe. Yet, the sleep study seems to indicate that this isn't the case. Regardless, while I am certainly a light sleeper, not being able to fall asleep with noise going on, once I do lose consciousness, I seem to stay that way at least, not consciously waking up in the middle of the night. Of course, that doesn't mean much, if I'm not getting any deep sleep.

Here's what I think I do know:
1) I have complex/central sleep apnea.
2) I experience a lot of arousals while sleeping, independent of the sleep apnea.
3) The BPAP machine does not correct the frequency of arousals in CSA.
4) Medical science does not know what is causing these arousals.
5) Medical science does not have a means of treating these arousals.

That being the case, why am I bothering to use the BPAP then, or any solution? It sounds to me like there's no viable solution for my problem. If that's the case, then is my only alternative to cope with this for the rest of my life? That's enormously depressing.

[Pugsy]

Spontaneous arousals usually mean that an arousal was noted but not associated with a respiratory event of some sort. No known cause.
I wouldn't expect the machine to fix something not related to a respiratory event of some sort and the brain forgetting to tell the body to breath (central) is a respiratory event.

Could you post a couple night's daily detailed report so we can see what the machine is recording?
Don't know how?
This thread shows examples of what we like to see from Sleepyhead
viewtopic/t103468/Need-help-with-screen-shots.html
and tips on how to use imgur to host the images https://sleep.tnet.com/reference/tips/imgur

Maybe there is something on the reports that might point to something less than optimal that could be improved upon.