Struggling with the first days

Hi all,

I'm four days into using my Philips Respironics System One set to APAP mode 4cm-20cm. I've been wearing a full-face mask (I don't know which one). I tried on a ton of masks at the office and found this full-face version most comfortable with the fewest leaks.

I'm having a hard time so far. I'm far more exhausted than I have been before CPAP.

I don't find the mask uncomfortable - in fact, I look forward to putting it on. I'm sure it disturbs my sleep nonetheless as I am waking regularly throughout the night, which is unusual for me.

I sleep about 6.5 hours a night. I don't know if that's enough.

Over the past four days, my AHI numbers were 9.06, 8.88, 6.79 and 5.30. Much better than my 51 AHI number during my sleep study. Why do I feel so much worse?

My wife is happy - I've stopped snoring. I'm feeling very frustrated as I am markedly more tired during the days than before treatment.

Does anyone have experiences to share or words of encouragement? I very much want this to work!

I'm new to CPAP too - one month yesterday. Best advice I can give is read everything in the Announcements section and browse through all the discussion threads to find things pertinent to you. There is SO much information here!

dingleberry wrote:Hi all,

I'm four days into using my Philips Respironics System One set to APAP mode 4cm-20cm. I've been wearing a full-face mask (I don't know which one). I tried on a ton of masks at the office and found this full-face version most comfortable with the fewest leaks.

I'm having a hard time so far. I'm far more exhausted than I have been before CPAP.

I don't find the mask uncomfortable - in fact, I look forward to putting it on. I'm sure it disturbs my sleep nonetheless as I am waking regularly throughout the night, which is unusual for me.

I sleep about 6.5 hours a night. I don't know if that's enough.

Over the past four days, my AHI numbers were 9.06, 8.88, 6.79 and 5.30. Much better than my 51 AHI number during my sleep study. Why do I feel so much worse?

My wife is happy - I've stopped snoring. I'm feeling very frustrated as I am markedly more tired during the days than before treatment.

Does anyone have experiences to share or words of encouragement? I very much want this to work!

Well, you found a mask that is comfortable and doesn't leak much. That is a major plus and a hurdle many don't jump so easily. A lot of folks spend the first few weeks/months battling the mask, not wanting to accept that their life is now changed and this therapy is necessary to preserve their health and possibly their life.

Not everyone just plugs in their machine and feel magically better. This therapy takes work. Mostly educating yourself, monitoring, and taking charge of your treatment. Your AHI is improved, but you are still being poked awake an average of 6-9 times per hour. So you should work to get that lower, if possible.

The first thing you need to do is find out what make and model machine you have, and what kind of mask, and add that to your profile. Then, if your machine is data-capable and works with the Sleepyhead software, download Sleepyhead to your computer, import your data from the SD card that should be in the back of your machine, and share screenshots so the experts here can help you. Otherwise you, and the pros on here, are pretty much flying blind.

Actually, the first thing you have to do is get your study results from the doctor (yours by law) because your machine's not (highly unlikely anyhow) at a prescribed pressure setting, but at the machine default ones - very common unfortunately. The point is that you highly likely need a higher starting pressure than 4, which would explain your high AHIs. The thing is that doctors, who know the science of OSA, know zip about machines and think that because you have an Apap, it will auto. rise to the occasion of even high # events and prevent further ones, but in fact, if most of your events are anywhere higher than e.g. 5-10, the machine can't climb quickly enough to make a difference, apart from the fact 4 is extremely difficult to breathe at for anyone. I suggest you raise your low setting to at 6-7 and see what your stats look like, and if necessary, you may even want to bump it again by 1-2 then. What's best, of course, is for you to DL Sleepyhead software (free) and get a look at what's happening overnight - it will tell you lots of things, including what your pressure's doing, leaks, etc. etc., but I don't think you'll encounter major problems by doing the small raise I suggested until you have SH on board - it's still very low as they go.

Setting your machine at 4 -20 cm is hopefully for titration because otherwise you have a very competent DME.
Get Sleephead installed and look at the pressure where it sits most of the night and slowly increase that lower number over several days until most of the AHI is decreased well below 5.

Most people feel air starved anything less then 6cm.

dingleberry wrote:Hi all,

I'm four days into using my Philips Respironics System One set to APAP mode 4cm-20cm. I've been wearing a full-face mask (I don't know which one). I tried on a ton of masks at the office and found this full-face version most comfortable with the fewest leaks.

I'm having a hard time so far. I'm far more exhausted than I have been before CPAP.

I am so sorry to hear this. I understand what you are going through: When I first started PAP, I was far more exhausted and sleepy than I'd ever been in my life. It seems that a small percentage of newbie CPAPers do go through a period of feeling worse on PAP than they did pre-PAP. Nobody was ever really able to explain why I felt so awful for the first few months of PAP therapy.

I don't find the mask uncomfortable - in fact, I look forward to putting it on. I'm sure it disturbs my sleep nonetheless as I am waking regularly throughout the night, which is unusual for me.

This likely explains the incredible exhaustion during the daytime. Again, this happened to me when I was starting out. In my case, it was aggravated by a growing dread of putting the mask on (which was NOT comfortable for me) as well as multiple night time wakes. The insomnia wound up getting totally of control and it took a large amount of work for me to finally conquer it.

I would encourage you let your sleep doc know that you are waking up a lot and that you are more exhausted now than you were pre-CPAP. You may need to have more official close follow-up than someone who does not have sleep maintenance issues after starting CPAP.

It's important to look at your data. The data you posted indicates that your AHI is still too high. (But it may settle down to the < 5.0 range in the next few weeks.) But your problems may be more than just the fact that your AHI is still too high. I think you need to document as much as possible what you can identify as potential issues. Keep a sleep log for a few weeks. In the sleep log make a note of the following things every morning when you first get out of bed:

• Time you went to bed
• Time you got up
• Estimated time it took you to get to sleep. (Don't stare at the clock; just write down how long it felt like it took you to get to sleep
• Estimated number of times you woke up during the night. You do NOT need to try to figure out when the wakes occurred.
• Estimated total sleep time. (Again don't stare at the clock during the night trying to determine this. If the wakes that you remember are all short, you can estimate they lasted 5-10 minutes at most.)
• Any notes about what you remember about the night's wakes. In other words, if you woke up needing to go to the bathroom or needing to readjust the mask, jot that down. If you woke up in pain or discomfort, make a note of that. You don't need to tie the notes to specific wakes.

After a couple of weeks of data, some patterns may emerge that will give you and your sleep doc a starting point for addressing the things that are keeping you from getting a good night's sleep with the CPAP.

I sleep about 6.5 hours a night. I don't know if that's enough.

It might not be enough sleep. Particularly if you mean that you spend 6.5 hours in bed each night, but you are waking up multiple times each night.

Over the past four days, my AHI numbers were 9.06, 8.88, 6.79 and 5.30. Much better than my 51 AHI number during my sleep study. Why do I feel so much worse?

Those AHI numbers are still too high. And your sleep is interrupted by the multiple wakes each night. Those two things may explain why you're feeling worse. Or you could just be like I was: You could just belong to the small group of new PAPers who happen to wind up feeling far worse on CPAP than pre-CPAP for the first few weeks (or even months). Don't give up.

My wife is happy - I've stopped snoring. I'm feeling very frustrated as I am markedly more tired during the days than before treatment.

Been there, done that, and have way too many souvenir t-shirts.

One thing that helped me back when I was a newbie with real adjustment problems was writing everything down. I did a whole lot of blogging here about my growing CPAP-induced insomnia and aerophagia problems. Sometimes there were some really good tips to try and some of those tips actually helped. I also was working pretty closely with a PA in the sleep doc's office who was as perplexed and frustrated as I was over the fact that I had a pretty spectacular crash and burn after starting CPAP.

Does anyone have experiences to share or words of encouragement? I very much want this to work!

First I want to let you know that you are NOT alone. Most people do feel better within a few weeks of starting CPAP, but it does take some of us a lot longer to start feeling better. And some people do feel much, much worse right after starting CPAP and it's not really clear why that happens.

My own pet theory as an OSA patient who had a months long and very difficult adjustment theory is this: Sleeping with a six foot hose attached to your nose is not natural. And it takes some of us a lot longer to teach ourselves how to do this in a way where we're getting uninterrupted sound sleep. And until we master the art of sleeping with the hose for 7-8 hours of reasonably uninterrupted sleep, we don't feel better. And if our sleep temporarily seems subjectively worse to us (because of the large number of wakes we're now aware of), we can feel a lot worse in the day time.

But if you work at it, things will get better. You have to be willing to share everything about your sleep with your sleep doc. You have to be willing to do some real self-analysis of what's causing the wakes. And you have to be patient.

Good luck!

dingleberry wrote:Hi all,

I'm four days into using my Philips Respironics System One set to APAP mode 4cm-20cm. I've been wearing a full-face mask (I don't know which one). I tried on a ton of masks at the office and found this full-face version most comfortable with the fewest leaks.

I'm having a hard time so far. I'm far more exhausted than I have been before CPAP.

I don't find the mask uncomfortable - in fact, I look forward to putting it on. I'm sure it disturbs my sleep nonetheless as I am waking regularly throughout the night, which is unusual for me.

I sleep about 6.5 hours a night. I don't know if that's enough.

Over the past four days, my AHI numbers were 9.06, 8.88, 6.79 and 5.30. Much better than my 51 AHI number during my sleep study. Why do I feel so much worse?

My wife is happy - I've stopped snoring. I'm feeling very frustrated as I am markedly more tired during the days than before treatment.

Does anyone have experiences to share or words of encouragement? I very much want this to work!

Good afternoon Dinglebrry! I'm very sorry for your struggles with your new CPAP machine, but I hope that it gets better for you. I wanted to ask a question and offer some advice. First is in regards to your pressure settings. Is your pressure setting at 4-20 cmH20 left this way for titration purposes and will be adjusted in the near future or not? If it is, try to download the machine close to seven days of use and the adjust the pressures appropriately. If that is not the case then download the Sleepyhead software and ask some of the awesome users here at the forum - they can help you with suggestions.

Sometimes getting used to the machine is difficult, remember that you are certainly not alone and are experiencing lots of different issues that much others have likely struggled with as well. So look over forums and seek help, I bet you can find an answer. Something that can help is wearing your therapy while you are completely awake for thirty minutes to one hour daily. This does not mean wearing while you are attempting to go to sleep. Wear the therapy while you are completely awake doing something leisurely in your home such as reading or watching television. Take not of what is bothering and make adjustments as needed. Whether it is breathing slightly differently to adjusting your mask. If you do this between 14 and 20 days sometimes it can dramatically help you with getting used to wearing your mask more consistently and more comfortably. I hope this helps!