Over a month on CPAP, AHI 20.53

[Uff Da]

I know I need a higher pressure to control this, but until I can get a mask that leaks less so the noise level is tolerable, I continue to have big time problems. Last night was especially bad with leakage I just couldn't seem to control. I fell asleep three times within the first couple of hours, but awakened. Twice it appears OA may have awakened me. After fighting the mask for some time, I finally just gave up and slept for several hours without the mask. Then I gave adjusting the mask another try, plus I removed the water from the humidity chamber, as it was also causing horrendous noise. I was finally able to get some more sleep with the mask on, even though the record shows large leaks and many OAs.

I'd appreciate any other observations besides the obvious to increase pressure.

General Background

Female, age 76, BMI of 19.
Sleep study results unknown, other than that my uncorrected AHI was 88. Expect to receive information on other factors in appointment with doctor June 17, six weeks after CPAP started. Crazy to have to wait, but I did appreciate not having an extra 160 mile round trip for an additional meeting with the doctor. Will edit and add actual results here when results known.

Comorbidities

Type 1 diabetes
Hypertension and postprandial hypotension
Hypothyroid
Osteoporosis
Osteoarthritis
Vitamin D deficiency
Jaw pain – on the verge of TMJ
Undiagnosed arthritic condition with muscle and joint pain which causes frequent “gel phenomenon” in muscles if staying in one position for long, thus causing much movement in bed, whether sleeping or not.

Prescription medications

Lantus insulin
Humalog insulin
Benazepril (BP med)
Bisoprolol Fumarate (BP med)
Hydrochlorothiazine (BP med)
Levothyroxine (thyroid med)

OTC medications

Lactase
Vitamin D3
Fish Oil
Glucosamine
Calcium citrate
Magnesium citrate
Ubiquinol

CPAP settings, chin strap and the like

My doctor wants my pressure at 8 minimum, 18 maximum based upon sleep study results. 14 was the most I could tolerate without incredibly noisy leakage, so after ten days of little sleep, I reduced maximum to that. Doctor is not happy. I'm trying out different chin straps and cervical collars to see if I can get anything to keep my mouth shut and avoid such bad leakage problems. If I can find something that works, I plan to try nasal mask. Appointment with DME re masks a week from today. Noisy leakage occurs especially with laying on my side, and because of my other health problems, I need to be able to move back and forth from back to side often during the night.

Sleeping habits

My bladder gets me up about every two hours during the night. In addition, I need to take two medications during the night, which I usually take at first nocturia after midnight. I also check my blood sugar then and take correction insulin or eat if warranted. I have great difficulty getting to sleep many nights and especially so after first or second nocturia. The first ten nights with CPAP I got only a total of 3.5 to 5.5 hours of sleep out of roughly 40 hours of use with the mask on. To get more hours of (poor quality) sleep, I had to take the mask off. I'm doing better now, but barely better. After lying in bed with the mask on for an hour or two, I just take it off if I can't get to sleep. Hopefully, this will improve if I can find a mask that doesn't leak so much and cause so much noise.

[LSAT]

If you want to control your apnea events your pressure will need to be increased. According to your data leaks are terrible.

[Uff Da]

My doctor had my minimum pressure set at 8. I did bump it up as far as 8.6 and wondered if I should go as high as 10 with the minimum. I don't seem to have any problems at that level, it is when the pressure gets over 12 and especially over 14 that the mask creates so many burps, farts, buzzing sounds and vibrations that it is impossible to sleep.

I don't know if I am a mouth breather so much as that my chin drops, sometimes to below my full-face mask, when I sleep. So far I've tried one chin strap and a 2.5 inch cervical collar to help. Last night's records are in spite of the cervical collar. I have a 3 inch collar on order, should arrive tomorrow. I don't know if that will work any better. I fear it might actually be too wide.

Because full face masks seem to have more problems with leakage, I'm hoping that I can solve the chin problem with cervical collar and/or chin strap and be able to get a nasal mask. But if the chin problem isn't solved before I see the DME next week, I guess I'll have to check out other full face masks and see if anything might work better.

[palerider]

Mask liners. padacheek.com makes the best long term use ones. they cost a little more upfront, but they're designed to be washed and reused.

Plus, the owner, Karen is a super nice lady.

[Uff Da]

A mask liner is something I haven't tried. Ordering them is a possibility, but takes longer than I like. Maybe I'll see if I can find something in my sewing room stashes of fabric that will work and at least try it out in the next few days.

[zoocrewphoto]

A mask liner is something I haven't tried. Ordering them is a possibility, but takes longer than I like. Maybe I'll see if I can find something in my sewing room stashes of fabric that will work and at least try it out in the next few days.

Some people use an old t-shirt. Just cut out a piece larger than the mask, and put a hole in the middle.

As for your pressure, you said that 10 didn't bother you and up to 12 seemed okay with leaks. Why not try a range of 10-12 and see how you do. If the leaks are minimal enough, that we can get a look at what events are occurring in that pressure range. Once you master the leaks, you may be able to bump the pressure up more if needed.

[Okie bipap]

If you want to try making your own mask liner, you can find a pattern at this site:
http://montfordhouse.com/cpap/diy-cotton-mask-liner.pdf

I used this pattern when I made my mask liners. I made mine out of an old, well-used tee shirt. Just about any soft cloth will work. One member of the forum mentioned making them out of an old pair of ladies underwear. This pattern will work for either a small or medium mask and can be enlarged for a large mask. The hole in the middle can be enlarged as long as you leave enough material to go under the mask cushion.

[Uff Da]

Thanks for the suggestions, zoocrewphoto and okie bipap. I'll be out of town tomorrow, but will probably give that a try over the weekend.

[kteague]

A few things to consider... The machine increases the pressure when it picks up on impending trouble, so it stands to reason that raising the starting pressure could eliminate some of the signals to go higher, and in the end you might find that you don't need your highest pressures after all. It's the prevention vs cure thing. One night in the sleep lab is not necessarily representative of our every night's sleep. I recently talked with my brother who was battling with mask leaks and an AHI often around 20. He ordered a size smaller mask and is getting stellar results consistently. Most masks have videos to help with getting a proper fit. Have you seen one for your? After over 10 years on CPAP I've found sleeping of a flat firm pillow hasn't been my biggest help is preventing mask movement. And side sleeping with my head on a firm flat pillow helps my jaw from going slack. Good luck with sorting through these initial irritations and getting on with some good sleep.

[poppi2]

I’m happy to report that my nocturia (3 or 4 times a night) was completely eliminated after I got my therapy dialed in. Keep fighting, it’s worth it. Good luck, Earl

[Julie]

Liners or no liners, you would definitely benefit (from what you said about chin dropping) from a soft cervical collar - your head would stay up (more so), your airway more open and your jaw (if not lips) closed. Many wear them here.

[Matt00926]

When you lay down while awake, does the machine report any leak, or do you feel air coming out near your cheeks or eyes?

There is a full face mask (flexi-fit 431 or 432) by Fisher & Paykel where the cushion rests under the chin.

[Uff Da]

When you lay down while awake, does the machine report any leak, or do you feel air coming out near your cheeks or eyes?

There is a full face mask (flexi-fit 431 or 432) by Fisher & Paykel where the cushion rests under the chin.

Almost every time I even take my mask off during the night, I run the "check mask fit" before I turn the machine back on because even slight shifts in replacing the mask can change things. I get it adjusted so the machine indicates proper fit for a period, then turn it on. But dang it, if I go to sleep that way and feel no leaks, I'll still often wake up with the machine indicating bad fit and the record showing large leak. And when I lie there awake, it doesn't take much of a shift in position to cause a leak.

The mask you mention is one I might look into. One concern I have, though, is that I have a receding chin, and I wonder if the design might better fit someone with a more standard chin line.

[Uff Da]

Another bad night last night. Two things I'm having trouble understanding about that Sleepyhead report. First, I don't see how I could have possibly slept through that large leak for over an hour without waking up. I can't imagine what kind of leak it could have been that didn't cause noise enough to wake me. I'm usually so incredibly sensitive to noise and that is one of the things that causes me to have to keep the pressure down below that prescribed.

The second thing I don't understand is all my OAs. To my knowledge I did not go back to sleep after I awoke about 1:10. If that's the case, all but one of my OAs took place while I was awake! I wasn't able to get back to sleep until after I pulled the mask off after 3:39. Is that even possible to have OAs when awake? I didn't feel anything odd. I know that sometimes I tend to hold my breathe when I'm reaching for the alarm, the button on the CPAP, my CGM, or even when I'm just thinking intensely about something. I probably also hold my breathe when I pass wind caused by the CPAP, and that is often! But enough to register as an OA?

[Julie]

You say you 'don't understand', but it's so glaringly obvious that your leaks are huge and need to be dealt with before getting into finer details of other aspects. I wish you had responded to my idea of a soft cervical collar as it has helped so many with similar problems.