New Here And Need Support

[ShugarPlums]

Hello All:

My name is Ali and I have had Sleep Apnea for about 15 years. I originally was set up with a machine years ago, but to make a very long story short.. I could not tolerate my mask. I felt suffocated, it was extremely uncomfortable to wear. I tried pillows, full face, gel masks and nothing seemed to work. I just ripped it off my face. It got so bad, I was eligible to receive Uvulopalatopharyngoplasty surgery. I chickened out of that surgery as my doctor said there was only a 50/50 chance it would work.

So to bring forward where I am today. I recently had a sleep study done and I have severe sleep apnea. 89 episodes within an hour. It is now mandatory that I get help for this problem as I want to prolong my life, be there for my children and grandchildren. I am already overweight (Which does not help my sleep apnea at all) My respiratory doctor is wonderful! She is willing to work with me and figure out how to get used to my new machine. We went with the DreamWear nasal CPAP since it is less restrictive and also a Resmed10 Cpap machine. The very first time I wore it, I slept for 6 hours with it on (which is INCREDIBLE for me) . Since then, I have had so many problems with the machine and stopped using it for a few days. Some time has passed and I started wearing it again 3 days ago after some adjustments. I am still having some major issues and was hoping some of the expert cpap members can help me work through these concerns. I am going to show you the email I sent to my doctor last night. This will pretty much some up what has happened:

Hi Dr. _____:
Hope you had a good weekend I wanted to follow up with you regarding my CPAP usage over the weekend. First, I tried super hard to wear the mask. I did ALOT of research to learn how to adjust the machine (Humidity, Hose Temp, Cleaning and so forth) to try and make it more comfortable. I also started taking notes.

The first 2 days, I got about 3 hours of usage. I woke up with pretty much the same symptoms which were the following:

8/6 Made humidity adjustment up
-Woke up feeling HORRIBLE
-Non Stop Coughing (I have recorded this to show how bad it was)
-Coughing up Mucus
-Runny Nose
-Major chest tightness
-Extremely achy all over (from Fibromyalgia and lack of sleep)
-Breathing like I have major allergies (feels like I need an inhaler)
- EXTREMELY Tired ALL DAY LONG (Worse then when I am not using the machine) I could not keep my eyes open much of the day
-The only difference between 8/6 and 8/7 is that I had burping and gas upon awaking

A noticeable issue is that my hose is filling up with condensation and both nights I woke up at exactly 3 hours feeling this way. I read that it is best to have the machine on the ground, so the hose and moisture would go back in CPAP machine instead of my lungs. Therefore I tried that last night and it seemed to work. So this brings me to last night, as I mentioned, I lowered my machine (Which seemed to help with condensation) and also warmed up my tubes ahead of time to the highest setting. I woke up several times, but was determined to put the mask back on each time I woke up (never did this before).

The issue now is that I noticed that the air level never reached or went above my ramp setting (all night). I do not believe the machine is working correctly as I believe it said I only had 17 minutes of usage all night? This makes no sense to me. This also might be why I did not get the condensation because the machine never left the lowest setting. Are you able to check the data for the last 3 nights and let me know what it says? It is super frustrating as I feel the machine may not be tracking my usage correctly.

Also, the first 2 nights when I mentioned all those terrible symptoms, it was absolutely horrible, I literally could not breathe, It took a good 5 minutes to lower my breathing down. Do you believe this could all be from the condensation buildup in the hose, is this something people have mentioned happening to them?

Any guidance or support you can offer will be of great value. As I said, it is mandatory I get this under control. I do not want to give up! I just need help! Thank you, Ali

PS...I am a side sleeper and also a mouth breather (But cannot tolerate a full face mask -(

[ozij]

Hi Ali,
We've been through what you're describing - you're not alone in this.
We do need more information about your setup to help you with some things, but before I point you the post that tells you how to get the info and how to organize it, here are some starting points:

The condensation in the hose is called "rainout". It's a result of too much humidity relative to the hose's temperature.
It does sound like you have a simple hose - those are much more prone to rainout. You could try wrapping the hose, but if you can at all afford it, try to get a heated hose (Resmed call them "Climateline" hoses). Humidity (and air temp) needs vary, and also depend on the climate we live in. Too warm or too humid can cause congestion. Too dry can cause reactive runny nose. A heated hose can be controlled.

Second issue: mouth breathing / mouth leaking. They're not the same thing, and have different solutions. If you have to breathe through you mouth, even when you're awake, then you need a mask that covers both nose and mouth.

You write:

PS...I am a side sleeper and also a mouth breather (But cannot tolerate a full face mask -(

And I wonder what you mean by "a full face mask" (FFM). And what types you've tried.
I am a "mouth leaker" (have no need at all to mouth breathe during the day). Back in the day I tried a number of masks that fit the definition of FFM, those that have a triangular shape and touch the bridge of your nose. I could not tolerate them. What I could tolerate were masks that only "covered" my mouth and nostrils.
Both Resmed and Philips Respironics have these type of mask. Have you tried them?

Do you need to breathe through your mouth during the day? Do you have alergies? Are you using a hypoalergenic filter in your CPAP?

And please read For newbies: how to get and give the info we need in order to make your therapy successful
We need the info -- and so do you.
Good luck - we're here to help, and we're here because we've been helped.

[TropicalDiver]

I will start with rainout. Turning the heated hose temp up will help. Turning the humidity setting down will help. Adding a hose cover to insulate the tube will help. Avoiding having a/c blowing across the hose will help. If you still have issues, keeping the cpap lower helps as you describe.

Increased pain, particularly chest. Obviously, alert your doctor to rule out cardiac issues. That said, you will likely be moving about less as you sleep. And, in my case, I think my breathing also changed. Rough few weeks for me (plus some testing) but it resolved.