FINALLY saw Dr. after 4 wks on CPAP - now some help?

[psychomamma]

Hey everyone!

I finally got to meet the sleep dr. yesterday after four weeks on CPAP and a sleep study report I didn't understand. So frustrating!! I wanted to dislike her and be mad, but she was actually really great, spend 1.5 HOURS with me, and asked me if I knew how to program my own machine, because she totally approves of me being in charge of my own treatment!! So that's all good.

I have an unusual situation in which I have airflow limitations because of nasal collapse; a very narrow jaw and a large tongue; and atrial fibrillation. It is not the airflow limitations that wakes me up (therefore pretty low AHI numbers), it is the adrenalin that results from difficulty breathing that disturbs my brain waves and hormone levels and wakes me up. So my high numbers are all RERA's and RDI numbers, which we will not be able to track with my Smart Card or software. The atrial fibrillation may be due to the sleep apnea, or the other way around, so she recommended a full heart workup.

Anyway, the upshot is that she wants me to figure out how to consistently sleep 7-8 hours on my machine, every night for a month, and I'll have to go back to the lab for an overnight study in order to see if it is alleviating the problem. She suspects that it won't -- that I will need a Bi-Level machine in order to do the trick. My other option is jaw surgery.

So here's where I need help. I haven't been able to sleep 7-8 hours on my machine yet, because of severe aerophagia (I mean, I literally cry, it hurts so bad) that wakes me up after 2 - 2.5 hours. She recommended that I first see if it is due to sleep position, so last night I slept on my right side (terrible) and tonight I'll sleep on my left side.

I've done a lot of research on the threads above re: aerophagia and have some ideas, but don't know where I should start first. I'm pretty positive that my mouth is not falling open. Last night slept with a "moon drop" (kind of like a cough drop) in my mouth to make sure and my mouth did not come open.

So next -- would I fiddle with pressure? She had me on a wide range (9 cm - 15 cm) and suggested I start by narrowing the range, say from 9-11 or something. What other things might you suggest? I know a lot has been written on it, and I know all the options, just don't know what order you would do them in....it's going to be a process of elimination.

Thanks again for all the help!!
Lisa...

[Hawthorne]

Are you saying that the doctor suggests that you change your auto range from 9cm - 15cm to 9 cm to 11 cm? You could try that.

I would want to know what your 90% pressure averages out to for the 4 weeks you've been on the machine. in my opinion your minimum should be set maybe 1 to 2 cm below that and your maximum pressure be set at 1 or 2 cm above that.

You should also try different sleep positions as she suggested. Sounds like you are trying different sides.

[psychomamma]

yes, my 90% pressure is about 9 or 9.5 --- so maybe I'll set it from 8-10 or 8-11. I also just got a Hybrid Universal mask to try (my insurance paid for a 2nd mask in the first month!) ... I love the Swift LT - it is so comfortable, but the chinstrap gives me a headache and I clench my teeth to make sure my mouth doesn't open, etc. I thought maybe the Hybrid would eliminate aerophagia more because mouth leaks wouldn't be as much of a problem....we'll see!!

[DoriC]

Keep us updated on the new mask and Good Luck.

[Muse-Inc]

Psyhomomma, I don't know if you've investigated heart rhythms yet but magnesium is critical to normal electrical activity in the heart. It is std practice in many ERs to administer magnesium in IV form to anyone showing up with atrial fibrillation with no previous history. It's been estimated that 70-80% of Americans are deficient in magnesium as it's just not in our water anymore. Low levels of this mineral are often the culprit in osteoporosis (despite what the dairy industry insists, Africans eating one of the lowest amounts of calcium have the least osteo because they eat so much magnesium). I take 800 mgms of magnesium citrate daily to keep my levels high. It's essential for more than 300 biochemical processes in our body. The other critical mineral is potassium; they still have me on a diuretic for breathing issues that cause me to lose minerals and water-soluble vitamins in pee, so I take a ton of supplements. To keep my potassium levels up, I drink low-sodium V8 and eat lots of parsley. I got sent to a cardiologist for testing to ensure I hadn't damaged my heart during my yrs of undiagnosed apnea & its side effects. These are just my experiences and might not apply to your situation. Good luck on getting to a good place with CPAP therapy!