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Intro and request for advice
#21
I hadn't heard of trying that. Can the mouth guards help you keep your mouth shut?

(03-21-2015, 06:49 PM)truetopath Wrote: If the chin straps aren't working for you, you could try a boil and bite mouthguard. I sometimes use one of the cheap boxing ones with the plug for the air holes in the front of it.

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#22
I also have a follow-up appointment with my doctor. I expressed my concerns with how tired I am. Since my numbers are good there was not much he could do. He recommended that I sleep more than the 7.5 hours I am averaging. I tried going to sleep early last night but I ended up waking up after 7 hours and I couldn't get back to sleep. I guess I will keep trying and see what happens.
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#23
If you are waking up multiple times during the night (due to leaks) you won't feel rested. Or at least I don't, in that situation. Even if the AHI is coming down. Kind of like if an annoying gnat or mosquito kept swarming around your ear all night - you would feel tired regardless of apnea or not.

I'm still getting used to P10 pillows myself, after starting out on a ffm. I have to sleep mostly on my back to avoid leaks with the P10. I use two pillows (the kind you sleep on), laid out in an inverted V, with the touching corners just overlapping.

I start out with my head at the peak, and I can get by with rolling over to either side, for a while. The angled pillows give me a place to put my head if I roll to either side and a place to put my arm, still encourage me to sleep on my back, and still give me some support for my head if I am on my back in between them.

I'm having to use a chin strap. For now it's an ace bandage. It's not tight but makes a huge difference. It also covers my ears a bit (not tight) and blocks some sounds. Without the chin strap I wake up many, many times during the night blowing air out of my mouth, like a reverse gasp. "puuhhhh"

The Lansinoh cream is helping a lot with the pillow seal, and comfort too. Sometimes I still wake up, and if the pillow is leaking a little I can feel it and hear it. Usually a gentle pull outward and downward, and let it reseat takes care of the leak (for a while).

I have a low-dollar hose hook which is a screw in the wall, with about an inch sticking out, with a short length of Velcro strip wrapped around it to hold the hose up. One of these days my Hose Buddy is supposed to arrive, but until then the screw and Velcro strip is working.

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#24
If you're unable to control the leaks, it might be time to do a mask exchange. It seems likely you are mouth breathing and might do better with a hybrid mask that incorporates nasal pillows as well as providing a seal and oral therapy. You want to solve this problem and get comfortable, and normally you have 30 days to make mask exchanges.
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#25
Believe it or not, I've done the mask exchange 3 times already. I've done the pillows, a nasal mask, a FFM and a hybrid. Each one was worse than the one before. I'm back to the pillows. They leak, but they are most comfortable. My doctor agreed that this made sense.

(03-26-2015, 02:44 PM)Sleeprider Wrote: If you're unable to control the leaks, it might be time to do a mask exchange. It seems likely you are mouth breathing and might do better with a hybrid mask that incorporates nasal pillows as well as providing a seal and oral therapy. You want to solve this problem and get comfortable, and normally you have 30 days to make mask exchanges.


Yeah, I'm still experimenting with a chinstrap. I tried a "standard" chinstrap, which made my ears hurt. The "ruby" chinstrap is more comfortable for me at least. I agree that the leaks are a problem but so far I haven't been able to figure it out.

(03-26-2015, 02:31 PM)worn_out_in_lebanon Wrote: If you are waking up multiple times during the night (due to leaks) you won't feel rested. Or at least I don't, in that situation. Even if the AHI is coming down. Kind of like if an annoying gnat or mosquito kept swarming around your ear all night - you would feel tired regardless of apnea or not.

I'm still getting used to P10 pillows myself, after starting out on a ffm. I have to sleep mostly on my back to avoid leaks with the P10. I use two pillows (the kind you sleep on), laid out in an inverted V, with the touching corners just overlapping.

I start out with my head at the peak, and I can get by with rolling over to either side, for a while. The angled pillows give me a place to put my head if I roll to either side and a place to put my arm, still encourage me to sleep on my back, and still give me some support for my head if I am on my back in between them.

I'm having to use a chin strap. For now it's an ace bandage. It's not tight but makes a huge difference. It also covers my ears a bit (not tight) and blocks some sounds. Without the chin strap I wake up many, many times during the night blowing air out of my mouth, like a reverse gasp. "puuhhhh"

The Lansinoh cream is helping a lot with the pillow seal, and comfort too. Sometimes I still wake up, and if the pillow is leaking a little I can feel it and hear it. Usually a gentle pull outward and downward, and let it reseat takes care of the leak (for a while).

I have a low-dollar hose hook which is a screw in the wall, with about an inch sticking out, with a short length of Velcro strip wrapped around it to hold the hose up. One of these days my Hose Buddy is supposed to arrive, but until then the screw and Velcro strip is working.

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#26
An update: I somehow have gotten the leaks under control. Not sure how because I haven't changed anything. Maybe I have just gotten used to the mask a bit more? Anyhow, my numbers look good (AHI averaging under 3).

At my last doctor's appointment I mentioned that I still don't feel rested. Since my numbers were looking good he thought that I perhaps just needed more sleep. My goal was to sleep 9 hours a night. For the past two months I have been averaging 8.5 We also scheduled another sleep study to find out if there are any other factors affecting my sleep.

I had the usual sleep study experience. I really couldn't sleep most of the night. They thankfully ended up getting enough data to make it worthwhile. The results really didn't provide any new information. I had the same number of apneas as in my original study and I responded well to the pressure I am currently using.

Fast forward two months and things are exactly the same. My numbers look good, still exhausted. At my last appointment my doctor didn't know what else to try. He said that I must have something else going on but he didn't know what that might be. I have ruled out everything else health-wise that I can think of. My regular doctor has given me a clean bill of health. If they don't know what the issue is who do I talk to?

After 9 months of treatment I feel maybe 5% better. I have improved my sleep hygiene and increased the amount of sleep I am getting which probably accounts for most of that. I am at a bit of a loss as to why I am not responding to treatment.
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#27
It can really take some time. Your apnea is under control, and your body appreciates all the nice things you're doing for it. But the "tired" feeling in some seems to last for some reason.

One thing you might look at is simple stuff like vitamin D. If you happen to be running a quart low on that, that can cause your symptoms. Easy fix. Also, and I suspect your Doc may be on top of this, check your blood sugar levels.

Your system is changing now that you're getting restorative sleep, and all sorts of temporary little goofy things could pop up.
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#28
Yes, we have checked the standard stuff, D, B, iron, thyroid etc.
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#29
Hi Seabird. Don't know if I have asked you before, but I generally ask when the symptoms you identify exist for so long....

Please tell me if you recall dreaming anytime in recent history. Have your sleep studies indicated how much REM sleep, and by chance also Stage 3 or Stage 4 sleep you had?

Can you post a night of sleep with the Pressure, Resp Rate, Insp time, Exp time, and Tidal Volume?

Thanks.

QAL
Dedicated to QALity sleep.
You'll note I am listed as an Advisory Member. I am honored to be listed as such. See the fine print - Advisory Members as a group provide advice and suggestions to Apnea Board administrators and staff concerning Apnea Board operation and administrative policies. Membership in the Advisory Member group should not be understood as in any way implying medical expertise or qualification for advising Sleep Apnea patients concerning their treatment.
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#30
I wonder if a VPAP might help some. Seem as though most everything has been tried. Just a thought.
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