Please help... New CPAP user, 4th night in and I feel awful

[mikewithe]

On my first night with the machine I only slept for about 5 hours and here is what sleepyhead reported:
AHI8.05
Hypopnea 3.34
Obstructive 3.14
Clear Airway 1.57
RERA 5.50
VSnore2 9.62
PB/CSR 1.11%

The second night I slept a little longer, about 5.5 hours, and my AHI was 6.01. The third night I slept quite a bit longer, 6.75 hours, and my AHI was 4.26. Finally, last night I slept for the longest period yet, 7 hours, and here is what sleepy head reported:

AHI 3.11 (The lowest yet)
Hypopnea 1.69
Obstructive 0.71
Clear Airway 0.71
RERA 2.12
VSnore2 0.42
PB/CSR 1.82%

Channel Min Med 95% Max
Pressure 12.00 0.00 0.00 0.00
Minute Vent. 0.12 7.38 12.00 25.94
Resp. Rate 8.33 15.60 18.40 20.60
Leaks 0.00 7.00 22.00 24.00
Total Leaks 27.00 43.00 58.00 62.00
Snore 0.00 0.00 0.00 1.00
Insp Time 0.52 2.00 2.66 4.42
Exp Time 0.40 1.72 2.20 2.60
Tidal Volume 13.33 460.00 740.00 1780.000

As you can see, the number of hours slept has increased every night and my AHI has decreased every night. As for the rest of the numbers... well I don't really understand what they all mean or how they relate to how well I'm sleeping but if I understand the AHI thing correctly based on that and the increase in time slept per night I should be feeling better and better every day. But instead, every day I feel more tired/sleepy than I did the day before.

I am using a Mirage Quattro full face mask (I have a respironics comfort gel blue too, but I just cant breath in that thing) that I used the RESMed video to fit properly, and my pressure is 12cm. CFlex is 3.

I was hoping that the experts here might be able to shed some light on why I feel so tired/sleepy. I never felt like this before starting the therapy. Even with my untreated diagnosed AHI of 64 I was less tired/sleepy than I am now.


So what do you guys think?

[DoriC]

Welcome to the forum Mike. It seems you're going in the right direction, you're sleeping longer and your AHI is going down. Some of the others might be able to analyze the data more thoroughly. One thing that stands out to me is your Total Leak. With the mask you're using, the Mirage Quattro Full Face, at your pressure of 12cms your leak rate should be somewhere around 40Lpm which is the expected vent rate, but you're showing 27 which would corresspond with a much lower pressure. I hope someone can explain that.

[Janknitz]

First, your equipment does not match. The humidifier you show cannot be used with the machine you show. And the machine you show is an older model, so that's probably where the error is. It helps us to know what machine you're really using.

Secondly, if this data is data you are getting off your machine's screen you should be aware that it's only showing you 7 and 30 day AVERAGES, and the leak data is particularly unreliable since it only shows large leaks. Look around this site for sleepyhead software that you can use to get print outs and graphs of your data that will be much more help. If you need help, ask for Pugsy--she's our resident expert for newbies using sleepyhead.

You are going through a very stressful thing adjusting to sleeping with the machine, and your sleep may be very fragmented at first. You're going to have to give yourself some time to get used to all of this before passing judgment on whether or not it's working for you.

BTW, you are doing great by getting long stretches of sleep and seeing your AHI coming down. I know you don't feel great yet, but keep at it--very important. As you collect more detailed data and we know what machine you are on, we can help you more.

[mikewithe]

First, your equipment does not match. The humidifier you show cannot be used with the machine you show. And the machine you show is an older model, so that's probably where the error is. It helps us to know what machine you're really using.

Secondly, if this data is data you are getting off your machine's screen you should be aware that it's only showing you 7 and 30 day AVERAGES, and the leak data is particularly unreliable since it only shows large leaks. Look around this site for sleepyhead software that you can use to get print outs and graphs of your data that will be much more help. If you need help, ask for Pugsy--she's our resident expert for newbies using sleepyhead.

You are going through a very stressful thing adjusting to sleeping with the machine, and your sleep may be very fragmented at first. You're going to have to give yourself some time to get used to all of this before passing judgment on whether or not it's working for you.

BTW, you are doing great by getting long stretches of sleep and seeing your AHI coming down. I know you don't feel great yet, but keep at it--very important. As you collect more detailed data and we know what machine you are on, we can help you more.

Maybe I'm just grumpy from being tired but your reply seems like you didn't even read my post.

As for my equipment, I assure you I selected the equipment closest to what I actually have. The only difference is that mine is cflex+ AND autoIQ. (But my provider disabled cflex+ and set it to cflex only) That was not an option in the list of machines. The picture of the cpap shows the humidifier already attached but I selected the humidifier separately because its was a separate question in my profile. I promise you though, that it does work with my machine and the product page lists my machine as compatible.

[jen4700]

I had great numbers from the start, but felt awful. The headaches went away immediately after starting CPAP but I was still very tired. It's almost been a month and I'm feeling better ssslllooowwwlllyyy. I have good days and not so good days. Give yourself some time. Your body may be "healing" in ways you can't tell right now. You're not going to know if your kidneys are happy. (another member said that to me - I'll always remember that!)

Some people feel great right away - but MOST do not. It may take weeks or months to really notice a difference. Someone suggested I keep a journal of how I feel in the morning. Which I do in sleepyhead every day. (It has a zombie meter - so cool.)

Besides healing your body you may need to make up your sleep deficit. (search forum for "sleep deficit" for tons of discussions on this topic).

You're doing great - really. Hang in there!!

[gertrude]

I had a very similar reaction to you. Felt worse and was stupider and more irritable on CPAP than I ever had before and the doctor didn't give me any explanation as to why that should be so. I can only think that there are individual variations that no one really understands. The PR for CPAP doesn't help. I have a ResMed machine and from their advertising you would think everyone is springing up vigorously after one night. There are folks like that, but they are the lucky ones. All I can say is stick with it. I'm at about the 2 month mark and feeling better, although not really any better than before CPAP. But my AHI is down and less nocturia, so the combination of the numbers and that change says something is happening. Watch the numbers to make sure nothing is wacky. (Others here can help more with that than I.) And stick with it. The nights will go up and down, but maybe you'll notice little improvements as your body adjusts to the changes. Lot's of practical advice and tips on this forum are a big help. For example, something as simple as hanging the hose over the bedframe helped me some, and i never would have thought of that myself! Good luck and welcome.

[Janknitz]

[

Maybe I'm just grumpy from being tired but your reply seems like you didn't even read my

Sorry, it was my error, I thought your photo was of a series m. It's hard to see the photo icons clearly on my phone. And yes, you are grumpy since that's the only thing you focused on in my post. People are here to help but I'll step back and let others do so. Good luck.

[LSAT]

I think the ' problem' is...that you are expecting a miracle after 4 nights. Use your machine every night for a couple weeks and then start to evaluate your data.

[ems]

I don't think I understood when people said that it takes time to feel better. However, I was compliant for around 10 months until I had a series of situations that kept me from using the machine for around a month. At the end of that month I started feeling awful... kind of like I felt before ever starting on CPAP. I didn't realize I was feeling better until I stopped using the machine. That was an eye opener for me.

Now I'm back on it and totally compliant. It's been about a week now and I'm just starting to feel better.

Most people don't feel better right away. You have to give it a chance. It may take weeks... it may take months. But, you do have to keep at it if you want this therapy to work for you.

[Pugsy]

Is your sleep fragmented? Find yourself waking often...toss and turn...fiddle with mask, etc? Is the time shown actual sleep time and not just time in bed with mask stuck to face and no wakeups at all?
While we don't expect for people to feel like running a marathon after just a few nights, we sure don't expect them to feel worse than they did without the cpap machine.

One of our forum members Robysue.. actually felt horrible after starting on cpap.
She has documented some of her struggles here....http://adventures-in-hosehead-land.blog ... er_19.html

Sleep with this alien entity stuck to our face is a challenge for a lot of people for various reasons. So we try to isolate the problems and work on them best we can. So....are you sleeping well (no wake ups) or is your sleep fragmented?

[mikewithe]

Thanks for the reply, and the question. To answer it, no my sleep isn't fragmented at all which is HIGHLY unusual for me. Before I started treatment I would be up at least 3 times a night (usually more) to urinate but with the machine I sleep straight through the night with no wake-ups at all and no tossing and turning (I wake up in the same position I went to sleep in). Well, if there are any wake-ups I have no recollection of them. Last night, my fifth night on the machine, I slept longer again (8 hours this time) and this is what sleepyhead reported. Does anything look amiss to you -- or anyone else?

AHI 3.50 (slightly higher than previous nights AHI of 3.11 but I suppose still ok considering longer sleep period??)
Hypopnea 1.12
Obstructive 1.25
Clear Airway 1.12
RERA 0.75
VSnore2 0.62
PB/CSR 2.83%

Statistics
Channel Min Med 95% Max
Pressure 12.00 0.00 0.00 0.00
Minute Vent. 0.12 6.88 11.50 25.68
Resp. Rate 8.80 16.40 19.20 24.20
Leaks 0.00 10.00 23.77 30.59
Total Leaks 34.00 51.00 73.48 76.00
Snore0.00 0.00 0.00 1.00
Insp Time 0.46 2.18 2.92 5.18
Exp Time 0.46 1.38 2.06 2.52
Tidal Volume 13.33 420.00 660.00 1539.60

And, even though I slept 8 hours, my eyes are still heavy and I feel tired again today. I just don't get it. One thing that I am a little concerned about is CO2. I wonder if I'm getting too much...

[BlackSpinner]

Thanks for the reply, and the question. To answer it, no my sleep isn't fragmented at all which is HIGHLY unusual for me. Before I started treatment I would be up at least 3 times a night (usually more) to urinate but with the machine I sleep straight through the night with no wake-ups at all and no tossing and turning (I wake up in the same position I went to sleep in). Well, if there are any wake-ups I have no recollection of them. Last night, my fifth night on the machine, I slept longer again (8 hours this time) and this is what sleepyhead reported. Does anything look amiss to you -- or anyone else?

And, even though I slept 8 hours, my eyes are still heavy and I feel tired again today. I just don't get it. One thing that I am a little concerned about is CO2. I wonder if I'm getting too much...

Well then cpap is working for you. Frequent urination is caused by apneas. You may still not be sleeping deeply because your mind is still leery of the thing on your face. Like any habit created to keep you alive, this is not easy to break. You may also have what is called "sleep debt" where your body is wanting all the sleep it can get to rebuild everything that is broken by years of bad sleep.

[Pugsy]

Again, nothing stands out like a sore thumb on your data.
Since the nocturia has been eliminated we know that the therapy is at least working in that regard.
Prior to cpap therapy I was getting up to pee just about every hour on the hour with a full bladder and limiting fluids prior to bedtime. It is a common symptom because the stress of the apneas cause the heart to produce a stress hormone which then goes to the kidneys and they go into overdrive.

If you aren't haven't the frequent awakenings that might explain feeling bad and your data doesn't point to anything glaringly prominent that needs work then that does make your detective work more difficult.

Again, while we can't really expect miracles (though some lucky few get them) we don't normally expect to feel worse the next day. You may simply just need to give the body time to heal and get used to not having the stress of the apnea events.
Might want to talk to your doctor about all this while just simply giving it time because let's face it. You have to use the machine...it is working (lack of nocturia)
If you reported not feeling any different overall then we would look for other possible factors but to report feeling worse makes things harder. Need to look at everything and not just the reports. Perhaps...this is a stretch and just a maybe to throw out there...the simple fact of having this stuff on your face while taking care of the OSA part of things actually is a disruption to sleep cycles even though you aren't reporting a lot of awakenings. Perhaps a low level arousal that you don't remember or notice interferes with the normal sleep cycles... Just an idea...no proof at all that is what is going.

Maybe you just need time. For sure talk to your doctor though in case he wants to rule out any other physical causes.

[mikewithe]

Thanks so much for the replies. The information re nocturia puts my mind at ease and answers some questions I have had for a long time.

Last night was my sixth night and I feel better today even though I did wake up once in the night due to a rather annoying leak that needed to be fixed. So, I'll just keep at it. Another thing that is causing me some difficulty is getting my mask fitted/adjusted properly. I think, though, that that will get better with practice.

Thanks again!

[BlackSpinner]

Thanks so much for the replies. The information re nocturia puts my mind at ease and answers some questions I have had for a long time.

Last night was my sixth night and I feel better today even though I did wake up once in the night due to a rather annoying leak that needed to be fixed. So, I'll just keep at it. Another thing that is causing me some difficulty is getting my mask fitted/adjusted properly. I think, though, that that will get better with practice.

Thanks again!

Yes the nocturia is basically when you stop breathing, your body goes into the "Oh F*@ there is a tiger" mode and floods your body with hormones. You must have heard the phrase "I was so scared I peed my pants"? Well that is apnea caused nocturia.