CPAP Noob looking for some guidance

[tiresmoke]

Hello, all. I was recently diagnosed with severe OSA... AHI of 32 with an AHI during Stage R of 90 (!!!). I got my CPAP machine earlier this week, and I have been struggling with getting started.

I have been using nasal pillows as a mask (Nuance & Nuance Pro Nasal Pillow). The first night, I think I might have had them adjusted incorrectly. I found it quite difficult to breathe... especially exhale. However, I chalked it up to a case of the new experience of breathing against the pressure. I woke up a lot and my back / neck was killing me the next morning.

So the next evening, I tried to get more accustomed to the mask by wearing it (unconnected) for a little while before bed. I found that if I didn't adjust it just right, the openings were decreased and I felt like I was breathing through a thin straw. That might have been the problem the first night. I figure that the pressure offset the difficulty inhaling but exhaling was hard. So I played around with it until I felt like it was situation on my face the best I could get it. In general, the second night was better than the first; but it still wasn't great. I had major back problems in the morning again and for some reason I felt extremely dizzy upon waking for about 15 minutes.

Third evening... I adjusted it the best I could and went to bed. I felt like every time I moved around, the pressure on the straps would push or pull the mask. Also, the hose was crazy uncomfortable... it was always pulling on the mask or it would get tangled up whenever I changed positions. Plus I have a really hard time breathing with this thing on... feels like it takes so much effort. And I think that it really is the size of the openings rather than the pressure because even with the mask disconnected from the machine, it still takes effort. When I exhale, I literally feel the sides of my nose expand under the pressure... and, while not "painful", the pressure on my sinuses is uncomfortable during exhaling. When I first get into bed, I need to inhale through my nose and exhale through my mouth to catch my breath. Otherwise, exhaling is difficult enough that it takes longer to do... meaning I'm desperate to start inhaling again. Hard to explain, I know. And again, I don't think this is just the pressure since my machine is set to ramp from 4... so it's not the air that's doing it.

Last night was night four. Basically like the night before. I don't know. I know that I should be giving it a chance before tapping out on this mask, but I feel like I'm wasting time because I just don't feel like I can get adjusted to the effort it takes to inhale / exhale through this tiny nasal pillow mask. Additionally what I think is making things worse is the fact that I have bad allergies so I'm always a bit stuffy. I'm a side sleeper (probably developed this habit to compensate for OSA) and most times, the nostril that is on the pillow side of my face gets stuffed up while sleeping... I know it sounds weird, but I'm usually only breathing through one nostril at a time.

My wife also uses a CPAP and has been for almost a year. She uses a full face mask because she felt that nasal pillows irritated her nose. I don't have that problem. I haven't tried to sleep with it, but I have put her full face mask on and I think it feels better. However, I'm not sure. I don't think I'll have claustrophobia issues. I never had problems while SCUBA diving so I can't imagine I'd freak out with a full face mask on. I'm not sure how comfortable it will be though.

Anyway, the place where I got my machine called to check on me today. I wasn't available to take the call at the time and I need to call them back. I just don't know if I should tell them that I need to come back in to swap out the mask or if I should give it another week.

[karen773208]

I use the nasal pillows and haven't had any problems with them, although I did go through about a week where I just had to make myself keep breathing. When I did my sleep study in the hospital, They put a mask on me that just covered my nose. it wasn't a full face mask. I had a really claustrophobic reaction to that, but it might work well for you. I know my respiratory therapist has told me to keep him updated with what I'm going through. You have only been trying for a short time, but if you mentally are having problems with the breathing, it just makes it that much more difficult. I would call the place where you got the machine and see if they could order you a couple of different masks to try. Seems like they should be able to do that for you.
Sure hope it works out for you. I know that after a month and a half, I feel like my life has turned around. But it takes some getting used to. Good luck and keep in touch!! Don't give up!

[OkyDoky]

It would be helpful if you could fill in your equipment. Here's a link that will help.wiki/index.php/Registering_Equipment_in_User_Profile
A few things that come to mind are:
1. Most machines have some exhalation relief, what is yours set on.
2. A larger nasal pillow may help.
3. You didn't say how long your ramp time is set for but I would only use for a short time and increase the pressure to 7 or turn it off. This may help you to be used to the pressure more before your machine needs to increase and you then feel you can't exhale. Many people feel like they are suffocating at 4.
4. You don't mention what your pressures are set at. If they are 4-20 there may need to be some lower adjustment.
Hope this helps and let us know more information. Others will be able to help with more info.

[NachtWürger]

increase the pressure to 7 or turn it off

I don't think that is what you mean.

[palerider]

increase the pressure to 7 or turn it off

I don't think that is what you mean.

the RAMP

[Cruising2sleep]

I tried using the Nuance Pro nasal pillows and had some of the same problems you are having. Couldn't get them comfortable and breathing comfortably with the nasal pillows wasn't happening. I'd lay there awake every night until 1 am trying to make them work but getting zero sleep. Finally took them off so I could get at least a few hours sleep before the alarm clock went off.

I couldn't take it after 3 nights of getting only a few hours sleep. I was a walking zombie from lack of sleep. I switched the nasal pillows for a full face mask and I've been a happy camper ever since! I sleep well, wake up feeling rested, and feel like I am actually benefitting from CPap therapy. You might want to give a full face mask a try.

[OkyDoky]

increase the pressure to 7 or turn it off

I don't think that is what you mean.

the RAMP

Yes I was talking about the ramp, but until we know what pressure he is on the 7 wouldn't help if it then reverts to 4-20. So we need more info!

[tiresmoke]

It's set to 5-20. The ramp runs from 4. Based on the info from Sleepyhead, it looks like I'm going to a max of between 9.5 and 11.5 per night.

As for why I'm using nasal pillows, basically the person who was fitting me for a mask said that everyone hates the full face and it's uncomfortable... that the nasal pillows would be best. But she wouldn't even open a mask package until I told her full face, nose, or nasal pillows.

[OkyDoky]

I hear what you are saying. The mask choice is difficult especially on the spot. What mask did you use at your titration and was it comfortable? You may want to go the FF mask route. But for now, If you have a ResMed machine are you using EPR?

[tiresmoke]

I forgot to mention that it's a Respironics A-Flex and the flex is set to 3 (max setting). I played around with the settings, and to be honest, while I felt a difference between the settings, I didn't know if I was increasing or decreasing the "flex" feature until I looked up the info in the manual. I really think the restrictive small mask affects what I'm feeling.

[Sheriff Buford]

Comments on your back... I have and had the same problem. Prior to cpap therapy, you probably wasn't getting "deep" (proper) sleep. When your back started to ache, you rolled over or changed positions. Now you are getting better sleep, and I'll bet you're dreaming like there's no tommorrow, you are less apt to change positions... thus morning back pain. I finally got used to it. For me,
I decided to get a good bed, and the back soreness started all over again. That went away quickly too.

Sheriff

[tiresmoke]

I hear what you are saying. The mask choice is difficult especially on the spot. What mask did you use at your titration and was it comfortable? You may want to go the FF mask route. But for now, If you have a ResMed machine are you using EPR?

That's the real problem... I didn't have a second study done. I had to switch medical insurance between the first study and getting the results. I had to shell out nearly $2k for the first study out of pocket because of the high deductible. Then I switched insurance and the new insurance company wants me to meet another $2k deductible with them even though I just paid the deductible with the last insurance. Therefore, I literally couldn't afford another study. That's why the Dr. put me on the auto-CPAP. His opinion was that it was better to get on the machine at maybe less than 100% optimal settings than to pay for a second study and not have any money left over for therapy.

I have to say, ever since the so called "affordable care act" went into effect, the medical plans' coverages being offered by companies has spiraled the toilet while the costs for them have been on the rise. But I digress...

As for the back pain, I'm certainly sure that I don't have apnea episodes that are waking me up every 40 seconds like before. However, I definitely am conscious of waking up a 4 to 6 times per night. I track my sleep with one of those wrist fitness trackers as well... I know they aren't even remotely accurate for OSA purposes, but they will tell you when you wake up and move around a lot. The amount that I'm doing that hasn't changed before or after starting the CPAP therapy. I'm kind of thinking that the back pain is basically due to what you stated but maybe for a different reason... it's hard to find a position that the mask / straps / tube / etc. fits just right so I can get leak-free, restriction-free air that when I find a position that works, I'm afraid to move from it.

Honestly, it's not all doom and gloom. I definitely feel more rested than I did before. However, I'm very aware that while the quality of the sleep that I do get is dramatically better, I'm still not getting anywhere near the amount of rest that I could be. I'm probably awake for 15-20% of the time between when I lie down and when I get up. That's basically where I was without CPAP. For example, I was in bed for 7 hours and 40 minutes last night. I was asleep for a little over 6 hours of that time. It took 20 minutes to fall asleep and I woke up 5 times.

[OkyDoky]

One thing you can do to help control the hose is to run it over your headboard. Or there are hose hangers you can buy or some have made their own (with velcro ties and clips made for name tags) to keep the hose from pulling on your mask.
I find I sleep with my hand on the connection of the short hose of my mask to the tubing and unconsciously move it out of my way when I turn. I'm hardly aware of my P10 and hose anymore.
I think finding the right mask and getting used to the pressure are hurdles that your brain will eventually get used to and breathing will become more natural.
While you are in the first month and are able to exchange masks a FF is an option. Or if you are not mouth breathing or leaking you might try another nasal or pillow mask. I don't know of any way but trial and error to find the right one. If you find one you are interested in you could go to Cpap.com and look at it's sizing guide. Most have ones that you can print off. That way you can know ahead of going to the DME what size you need.

[Sheriff Buford]

I've said this before... when I purchased the Hose Buddy - hose hanger, it was the best cpap purchase I've made. The hanger gets the hose outta the way at night so you don't end up fighting with it. Some folks enjoy the fight. Not me. One forum member said she felt "cozy" with the hose draped over her. As stated, you can rig-up a home made hanger. When I work nights, I sleep in a different... quieter room during the day. I sleep in a bed with rot-iron (spelling?) . I have draped the hose upward, and secured it with tie-wraps. Works just as good as my hose buddy.

Sheriff

[palerider]

rot-iron (spelling?) .

wrought iron, meaning 'created by hammering'