I need advice

I live in Atlanta. I started therapy nearly 3 months ago, and like many before me, I have had a lot of challenges acclimating. Despite these challenges, I refused to give up and have been 100% compliant, and according to the limited info. In the dreamstation DreamMapper app, I have finally reached a level where I have less than 3 ahi per hour, and lately between 1 and 2. Sounds perfect, right? However not feeling perfect.

I started therapy on 7/16. I got sick the first week in August and I think it was a virus at that point, but now I am not so sure. I had tightness in my lungs that turned into a cough and mimicked bronchitis. I did have some low grade fever, but not really and sporadically. After a couple weeks, I called my doctor, she said definitely not caused by Cpap, and to keep using it. I had a cough that lingered, and I felt better for a couple days near the end of August, but then it came right back. Doctor said probably a second virus, but cough and sinus symptoms have dragged on and on. I finally figured out that it seemed affected by how high or low I had the humidifier set. I thought I had it figured out in that the highest humidity level of 5 caused major productive cough, and when I turned it back to 2, within 48 hours the cough all but disappeared. I had it turned up because of dry mouth, but I can live with that before all these symptoms mimicking being sick. I thought I was in the clear, but then the cough came back, though drier this time. That did happen one night after forgetting to add water, so for at least part of the night there was no humidity on. But last night I had water in it and at setting 2, and today I had some sinus pain and lots of coughing.

I feel like the air pressure, or something about the therapy is irritating my lungs and causing me to have symptoms like I was sick. Before therapy I’d get sick, it might take a couple weeks, but I’d get better, and the cough and other symptoms would go away. I feel like I have had symptoms with the exception of a few stray days, since the beginning of August, two weeks after starting Cpap. According to DreamMapper and the doctor I need a high pressure, most nights between 13 and 16 late night/early morning. This is another issue for me. It wakes me up when I feel air leaking from the mask, though DreamMapper says 100% fit most nights. I have to tighten the mask so much to stop the air burps, that when I get up in the morning, I am sore behind my ears. I have tried both small and medium size mask cushion, and it happened with both. I like the mask style (under nose /covers mouth), but have thought about trying one of the other manufacturers to see if it helps at all. I can’t use a full face mask that goes over bridge of my nose because I got horrible pressure sores from day 1 with the AirFit F20, and nothing helped (ie Remzzz’s or boomerang silicon cushion).

Sorry this has gotten so long, but this is the last thing. I have been blessed because from the first weeks I felt the positive effects of the therapy. I think if I hadn’t I wouldn’t have been able to hang in there through everything else involved in getting used to this. However, I’ve noticed I am really tired (generally at night), and seem to require a lot more sleep than before starting therapy. I am hopeful that this eventually will also go away as I get more acclimated.

Sorry this was so long, but I was trying to give as much info. as possible. Here are the points I’d appreciate any advice about:

1) How can I get rid of the cough, congestion and painful sinuses? What factors might be causing it?
2) Will I eventually get used to the high pressure, and is there a way to avoid the air bubbling out and waking me up?
3) Is it normal that I am feeling so tired (definitely different from the sleepiness I experienced prior to therapy, now it’s generally in the evening vs. during the day) and requiring more sleep than I did before?

I really appreciate anyone that read this all the way through and whatever feedback you might have. Thanks.

Welcome to the forum.

Your sinus issues are likely related to the humidity setting. Google "cpap rhinitis"
Too much added moisture will cause the same symptoms as too little added moisture. Each person has to figure out what it is that their nasal mucosa need.
Last night you ran out of water so the mucosa probably got dried out too much and I have had this happen and sometimes it takes 2 or 3 days for the mucosa to get back into a normal hydration balance. I try to always .make sure that I have zero chance of running the tank dry during the night because I have learned that just a couple of hours of running it dry will end up causing me some ugly sinus symptoms that take 2 or 3 days to go away.
Until things return to normal treat each symptom just like you normally would if you had a cold or whatever causing the symptoms.

Use lots of saline spray...like Simply Saline. Take a decongestant for the congestion.

For the mask noises...sounds like what we call mask farts....consider adding a mask liner. You can make your own out of an old T shirt or buy ready made.
https://www.padacheek.com/

For the fatigue....some questions first.
How many hours of sleep are you getting? Real sleep and not just laying there awake.
Are those hours fragmented by very many wake ups for any reason? If so...what reason.
Do you take any medications of any kind? If so, what?

Post a detailed report from OSCAR from a typical night. Maybe something in the report will give us some ideas as to why you are still tired.
viewtopic/t158560/How-to-post-images-for-review.html

Yes, you can even turn off the humidifier, especially if you're in a naturally humid climate - the hum. is a convenience to use as you need it, not mandatory 'therapy'' and there are many other ways to deal with dry mouth besides using it. Sounds like you've given yourself a cold, if not a serious sinus problem.

First off thanks so much for taking the time to review and try to help me. I appreciate the validation that the humidity is tied to my never ending cold symptoms. I am so appreciative to find some place where people seem to know what I am talking about. It seems my respiratory therapist, sleep doctor and pcp are fairly clueless about side effects getting used to CPAP, except the most basic ones. This is the only place I have found the level of detail I am looking for, and clearly people that understand just how not easy it is, at least in the beginning. Thank god you are here!

I am not sure yet, but I think my sweet spot on the humidifier may be 2. Higher humidity like, 5 gave me not only sinus pain and some congestion, but a lot of coughing and coughing up phlegm as one does when you are sick. It’s just nice to know I am not completely crazy that I thought it had something to do with the machine or factors related to the therapy, and that I don’t probably have some far more serious ongoing lung illness, causing ongoing symptoms.

The air that comes out of typically one side of the mask and breaks the seal against my skin generally happens in the late night / early morning hours when I am likely in REM sleep and require the highest pressure. I don’t guess there’s a whole lot I can do to prevent it, except try a different mask. It’s just really annoying and some nights wakes me up more than others. I tried Remzzz’s when I had pressure sores on the bridge of my nose. The air thing still seemed to happen, however that was a different mask then I have now, and perhaps I should try and it may be different.

The fatigue though seems strange to me. Right off the bat I felt a noticeable difference after I started CPAP therapy. I felt much better. It’s hard to describe, I just felt clearer and am definitely more productive and have better focus. I remember I used to wake up with headaches and feeling so tired and I’d tell myself to get up and get to work that I could take a nap later. I’d be excessively sleepy at about 5:00 to 6:00 pm and struggle to stay awake. I’d often get home from work about that time and take a 1-2 hour nap and then go through my evening, going to bed about 1:00 or 1:30 am, and get up between 7:00 and 7:30 am. I would not feel sleepy at all, but would fall asleep as soon as my head hit the pillow. I tell you all that to give you context on how the tiredness I feel now seems different.

I am awake no problem all day long. If I’ve only had six hours of sleep, I still occasionally nap when I get home from work, but usually only 30 minutes to an hour, if even at all. I get really sleepy by 11:30 pm or midnight now. I still generally get up between 7:00am and 7:30am. I still fall asleep as soon as my head hits the pillow, and aside from mask related waking up one or two times a night (that I recall at least), I stay asleep and in bed until I get up. I don’t ever wake up with a headache anymore, but I do often wake up tired still (except occasionally) but it wears off more quickly than it used to and then I feel fully awake. Admittedly, I am and have always been more of a night owl. I am averaging 7 to 7.5 hours per night, with 8 usually on weekends. I used to average around six hours a night with more than eight on weekends. What’s interesting is I am finding adjusting my wake up time is much harder on me than it used be. If I have to get up an hour earlier for an early meeting, it really takes a toll, whereas it was easier before. I wondered whether perhaps my body is recovering from an ongoing sleep deficit? Now that I am in a more “normal” sleep routine, perhaps my body is recovering and adjusting? Whatever it is, it definitely feels different than what I felt before being diagnosed and starting therapy.

Sorry, you asked about medication too. I take levothyroxine for thyroid, but that’s the only one I take daily.

I know you also asked me to post sleepyhead data too to try and assess why I might feel so tired still. I am going to try to figure out how to do that this weekend and will post it then. I have looked at the help you have on this site and will try to do it based on using that. I haven’t done it before. Thanks again for reading all this and helping me. I really appreciate it.

Unfortunately, I tried to download OSCAR, but I don’t think it’s compatible with a tablet, and I don’t have a laptop or PC.

Since the doctor and the DME can see your data somehow, it’s a real shame that the CPAP machine makers do not make your full data available to the patient directly in their App or otherwise. I have a Dreamstation and therefore the DreamMapper app, but there is only daily data available there, no trending, and only totals not the more detailed breakdown it seems you can see in OSCAR.