Tips for next sleep clinic visit

[dbebz]

Hello everyone,

I have a few questions regarding my recent start of CPAP therapy and some issues I’m having.

In addition to the sleep apnea (whether they are related or not is another question) I’ve had chronic issues with my throat. I should be seeing an ENT specialist in a few weeks to look into it. I have had chronic symptoms of on and off cough, occasional shortness of breath, and feeling like I always have to clear my throat. Years ago, my family doctor did xrays of my chest and asthma tests but said I didn’t have asthma and rather it’s in my head. As I’ve begun to deal with my apnea, I’ve realized these symptoms are most likely an ENT disorder like LPR (laryngopharangeal reflux). I’ve also had chronically enlarged tonsils (regular ones and lingual) for years, which I heard can be related to LPR due to irritation. They aren’t huge by any means but definitely not small either. The symptoms are very not specific to typical acid reflux symptoms so maybe that’s why it took so long to get it looked into.

Anyways, now with the CPAP using nasal pillows, I’ve noticed that I am a mouth breather and at times I feel like I’m short of breath and need to take a breath out of my mouth instead of my nose (or cough). I noticed while awake, the auto CPAP detects me when I try to take such a deep breath through my nose it thinks I have apnea and jacks up the pressure. The pressure kept increasing until maximum pressure of 16, making it hard to sleep.

I developed a temporary method where I would start inhaling through my nose then finish the inhalation quickly through my mouth, then the reverse for exhalation. It seems to prevent the machine from going out of wack while I’m awake and keeps the pressure down. Once I’m asleep, my natural reflexes kick in and I’m not noticing the short of breath feeling so I sleep while breathing through my nose.

My question is, until I get my ENT appointment, what can I do to deal with this? Although my results were considered “excellent” (last night I used the machine for just over 6 hours and had an AHI of 1.7), the truth is that I’m maybe only actually asleep for 4 of those hours so I still feel not rested. Before treatment, I would sleep for 8-9 hours and feel tired, but now since I’m probably only asleep 4 hours I’m still tired but surprisingly not as bad as i would think.

I spoke to the respiratory therapist a few days and mentioned how taking a deep breath while awake started to max out the autoPAP to 16, and he immediately said “no, it wouldn’t do that.” Uhhhh... yes. It would. How do I know? Because I experienced it!

I just don’t want to have to forever adjust my breathing in weird ways to prevent throwing off the autoPAP. Also forgot to mention why I think I haven’t slept much. I audio recorded myself Sleeping and noticed that my breathing was clear through my nose, but then my mouth opened and I had mouth leak for a while. I suspect that’s another reason I was waking up.

So in summation:

-how should I go about this with the respiratory therapist at the sleep clinic at my next appointment Friday?
-what can I do to deal with this until I deal with my underlying medical issue?
-is there anything I can mention to ENT as well, or do any of you have experience with these symptoms?

[dbebz]

As an example, once I got up this morning I angled myself, coughed a bit (felt like mucus) and breathed through my mouth a bit and I feel better. But obviously that’s going to be difficult if not impossible with my current setup, meaning I’m having interrupted sleep.

[chunkyfrog]

The doctor who thinks it is all in your head--can you replace him?
I fired two different doctors who were similarly incompetent.

[dbebz]

Trust me, a decade of discomfort and stress wondering what’s wrong with me was not fun. But dealing with the sleep apnea is the first step hopefully to getting this actually looked after.

And the doctor (now retired) is a she!