New user - have some questions

[Barger]

Hi, I have been reading the forums for a while but this is my first post. A little background - I have been having low energy issues for years but no one has ever though to investigate sleep issues. Recently my father was diagnosed with severe sleep apnea. His health immediately improved from this CPAP treatment. This made me think that I might have the same issue.

I made an appointment with a sleep doctor and he said that there was a chance that I might have OSA based on my jaw structure. My insurance will not cover a sleep study so we tried a home study instead. I tossed and turned for the two nights of the sleep study. I really found it hard to sleep with the test equipment. The results showed that I had about 20 events per hour. My concern was that I wasn't sure that the test was accurate because of my problems sleeping but I was assured that they were OK.

I got a CPAP machine and some nasal pillows and started using them every night. It didn't take me long to get used to wearing the pillows but I had issues with leaks if I rolled around while sleeping. Initially we had it set to APAP mode. I tried this for 2 months. My average AHI was around 3 and I was getting 8-9 hours/night. My issue was that I still wasn't feeling refreshed in the morning or during the day. I also felt that my sleep was worse since I was waking up often to adjust the mask. I was also having a lot of leaks. SleepyHead was telling me that "Your mask is leaking way too much.. Talk to your CPAP advisor.". I was averaging about 15% over the leak threshold.

I recently had an appointment with my sleep doctor and I shared my concerns with my bad sleep and the leaks. He could not understand why I wasn't feeling better because my numbers were so good. To fix the leaks he suggested that I try using a chin strap and using a continuous pressure. I have been trying this for a week and I'm still getting the same number of leaks.

I ordered a nasal mask a while back so I though I would give that a try (Eson). That has been a little more comfortable to sleep with since it doesn't move around. I'm still getting the same amount of leaks and comparable numbers. My concern now is that since I'm using continuous pressure it will not be able to keep up with the leaks.

So my questions are: Should I still with the Eson mask and go back to APAP mode? Should I just stop all together because I am not feeling better with treatment? I know everyone says "stick with it" but at this point I don't know why. Thanks.

[Julie]

Please don't stop trying yet - your life must matter more than a few weeks of being uncomfortable and irritated by a new routine...

Can you try a few full face masks that will prevent mouth breathing, or at least allow Cpap air to go to your airway and not out of your mouth? There are many to choose from (lying down... your face changes a lot when you do), in your size, and while it might take more than a couple to find the right one for you, you'll feel a lot better with proper treatment.

Apap will also help you find the optimum (low) pressure level setting for you and using software (SleepyHead's free to download from various places here) will tell you what that is.

Once you feel better with the right set-up you won't want to think about quitting (you're not a quitter, are you? ) and you'll be in control of your life again. It's probably been so long that you've forgotten what that feels like!

[Barger]

Thanks for the reply. I guess I could try a full mask although since I just bought a new mask that doesn't sound that exciting. I don't think I have a mouth breathing problem.

I understand what you are saying but I don't understand exactly why it makes sense to continue if it isn't making me feel better.

[surf_rower]

Thanks for the reply. I guess I could try a full mask although since I just bought a new mask that doesn't sound that exciting. I don't think I have a mouth breathing problem.

I understand what you are saying but I don't understand exactly why it makes sense to continue if it isn't making me feel better.

Hi, I also doubted my sleep study (at a hospital) because I slept like two hours, it was a horrible place, horrible night. But they insisted they got a good test out of it.
It also took me a long time (months) to feel better and it isn't dramatically better, but then I never really had the symptom of being exhausted during the day. I wouldn't have known I had a problem except my husband said I kept stopping breathing!
The main improvement that I notice is I am not constantly waking up and then having trouble falling asleep again, lying there all anxious in the middle of the night. If I do wake up, I fall right back asleep with the CPAP going. Love that!
And the apneas are almost zero.
Lots of others on this forum say the same thing, it can take a long time to feel better and yes it can take awhile to find the right fit, or to stop rolling around. I hit it on my third mask type, Tap Pap, works very well, very few leaks. Since it is fitted to your upper teeth you don't need straps and it doesn't move around if fitted right. Most of the time I can avoid mouth breathing, never thought that was possible.
From what I've read on the forum, it seems unusual to have an immediate improvement, suddenly feeling refreshed. Sounds like your dad was lucky to have that. People here have said that there is healing that needs to go on, with some people, before they feel better.
Good luck!

[Tatooed Lady]

Before you run screaming into the night from frustration...check your nasal pillow. First, size (it matters). I was given the wrong size originally of 3 possibilities. Resmed has fit videos, check cpap.com when looking at whatever mask you're using. That's 1 thought. If it's the Swift FX, be aware that when you look into the cones that go up your nostrils, there is a second cone inside. They BOTH NEED TO FACE THE SAME WAY. I have had leaks out of the blue...sure enough, the inner one is pushed in. Simply pinch the base of the outer cone. Normally the inner will spring into place. Third...headgear should be adjusted so the pillows are up to your nostrils, and the strap around the back helps keep them against your face. Nice gentle pressure.
My FX allows me to roll enough to almost strangle myself without big leaks.
One other thing...do you have facial hair that might be getting in the way of a steady seal?

[zoocrewphoto]

Thanks for the reply. I guess I could try a full mask although since I just bought a new mask that doesn't sound that exciting. I don't think I have a mouth breathing problem.

I understand what you are saying but I don't understand exactly why it makes sense to continue if it isn't making me feel better.

There are a bunch of reasons why you may not feel better right away.

One, you know you have leaks, and those leaks are waking you up. That means fragmented sleep, so you will not feel great.

Any type of fragmented sleep will cause problems. We know you have leaks waking up, but also getting used to the equipment will cause problems. Some people are sensitive to changes in pressure of auto mode, some are sensitive to leaks and any sounds. Others to the feel of the mask on their face.

Keep in mind that it is not normal to sleep with an alien on your face. It takes time to trust the machine. For years, your brain has slept in a shallow form of sleep in order to wake you enough to get you breathing again. You can't sleep deeply if you are waking up frequently. It will take some time before your brain gives up the job and lets the machine do it instead, and thus, let you sleep deeply.

There are usually more improvements than feeling more energetic. I found that I had fewer trips to the bathroom, no more nightmares, no more morning headaches, I felt more cheerful, no more waking up with choking, gasping fits, I fall asleep faster, I sleep better in hotels (used to watch the clock every hour), and more. I have some days where I feel more energetic, but after the first night where my system was shocked into feeling the difference, it was a couple weeks before I felt the first really awesome night, and they seem kinda rare for me. My overall energy is better than it used to be though. After a couple weeks on cpap, I realized I was no longer answerng "How are you?" with "Tired." Even after a bad night, I am not as tired as I used to be.

[Barger]

Thanks for all the replies. As far as the nasal pillows go - I have tried a few sizes. Right now using the large. I tried the medium in the doctor's office but it wasn't big enough to seal properly. No facial hair to get in the way. The issue I have now is that if I bump the hose in any direction it breaks the seal on the pillows. So I get a lot of large leaks throughout the night.

I'm having issues with the nasal mask as well. That one makes it really hard to fall asleep and I'm getting similar levels of leaks. It sounds like the leaks might be my main issue since it may be waking me up. I sleep through a lot of it but I do periodically wake up from a leak and have to adjust. I'm not sure how to improve the leak situation at this point but I guess I will have to keep trying.

Last night I just could not fall asleep with the mask so I eventually took it off and slept without it. Feel pretty much the same today.

[mike1953]

Why do you think you should have fantastic results right away. It appears you have not read many posts here. For many people it takes months sometimes trying different masks and different air settings. Not using it is worse at all is worse. Read other posts and listen to others advice on masks and how they have had success. I am a lucky one. I had no problems from the first night. Went from a AHI of 63 to 0.9 the first night and have leveled off at about a 0.7 average with some nights at 0.0. Keep plugging along you will get there.

[Barger]

I guess I wasn't looking for fantastic results right away. I just didn't think I would feel worse. I have read tons of posts on this and other forums. I guess I just have to keep trying. That is hard for me because I like to understand things completely before I feel comfortable with it.

[OkyDoky]

I didn't really see what pillow mask you tried or what pressures you are using. My experience with the Swift FX is that the hose is actually attached to the pillow cushion and would move my pillows at times even when using the hose with the swivel top. The P10 has a very flexible hose to a frame that the pillows fit in and I don't notice the hose at all. The difference in the headgear between the two masks almost has to be tried to see if it will work for you.

Now for the nasal mask. I have no experience with the Eson but I tried the N10 and found liners ( Remzzz or PadACheek) helped with movement and decreased leaks. Others have stated they didn't help their leaks. If you wanted to try you can make your own out of an old tshirt by placing your cushion with the part that touches your face down on the material and cutting around your cushion with a little extra edge left. Then cut out an area for your nose to fit. Place this between your mask and face.

Thought I give you a couple of ideas from my experience. Keep trying you'll get the right combination yet.

[Barger]

I was using the Airfit P10 with auto pressure from 5-15. I was getting a lot of leaks with that. My doctor changed it to a a set pressure of 7. I'm still getting the same number of leaks.

I then switched to the nasal mask. I'm getting lots of leaks with that as well.

My doctor also said that I should be sleeping more, although I have averaged 9 hours/night. I actually sleep more than that because I usually take my mask off at some point. It doesn't appear that more sleep = less tired. In fact it seems to do the opposite.

I found it interesting that my doctor only looked at a printout of my numbers, which only included a high-level summary of my usage and the AHI. He wouldn't have been aware of the leak issues unless I told him about them. I'm not sure why they don't look at the detailed data.

[Julie]

There are many different FF masks and hybrid/pillow types... yet you talk as if by having tried one model you've done the job. You say what's the point of going on if you don't feel better, but you won't feel better til you find the right mix of equipment, sleep hygiene, diet, etc etc. and the point is that you (not us) will not just have a better life, but a longer one. Start looking seriously at what's out there - Cpap.com has loads of variety, and when you see something that looks promising, come back here and ask about it/them and we'll give our 2 cents. But you can't just say you tried a FF mask and therefore that's it... that's just the beginning.

[Barger]

Thanks for your input.