Super noob, trying to keep it positive, need a lil help

[DavidSimon]

Hi All. Glad to have discovered this resource. I have read through a bunch of things, especially before my first visit with my DME.

I didn't have any choice in the machine, but got to choose a mask. I have facial hair so I went with the nasal pillows, they also seem the least intrusive. Luckily I have pretty good insurance and only have to pay 20% out of pocket for all this very expensive equipment, and also luckily it seems like I got a pretty good machine that is data capable. I already setup SleepyHead and don't quite understand the implications of all the numbers yet, but I like having the data available. I got the hardware and started using equipment 5 days ago.

Here are the things I would like some help with, some practical, some just venting/emotional:

1. I was doing great at first, but the nasal pillows have made my nose really sore. I think I am using the right size (medium) , but my nose is pretty raw. The DME said "you might get a little cold sore at first" but I am pretty irritated, to the point where I have been taking the mask off an hour or two before I wake up, and am likely going to skip using the machine altogether tonight (the first time). I got some Lansinoh yesterday and maybe that will help but I'm still pretty sure. I can't really seem to figure out how to loosen the mask, and am not sure that is the solution anyway.

2. Last night, while in pain w/ the pillows, I also had a helluva time falling asleep (and getting back to sleep whenever I woke up). It might have been the pain, but I also started feeling like I couldn't breathe, or that I was stopping my breathing. Not sure what the deal was.

3. When I did the sleep study, it was one of my worst nights ever. I had gasping events, couldn't sleep, just a rough time. My measured AHI was 30.1 , mostly hypopneas (almost exclusively). Since starting with the machine, I have hovered between 5-7 AHI, which I understand is still not great. No leaks or anything, and it is auto, so not sure what I can do.

4. I am actually pretty angry that I have fallen into this scenario, and am having trouble dealing with it. I really can't imagine having to deal with this every night for the rest of my life. I love camping, I love spontaneity, and I'm only 33. In all likelihood, I have been suffering from OSA for 10+ years, but just knowing that it is real is really upsetting me. I pretty much believe it is my fault.I am overweight. I also like to drink (I'm a brewer and go to lots of events, tons of friends in the industry,etc), and obviously that contributes. I am really optimistic that I can lose 50lbs (go from 225 to 175, i'm 5'10") and reduce or eliminate dependency on a machine. I don't really know how realistic that is, but it is helping me to feel a bit of hope.

Anyway, this is a bit long, but I appreciate having a place to share. Thanks for all the info.

[kaiasgram]

Hi DavidSimon,

1. With the Lansinoh, just use a little bit so it's tacky and not slippery. You can use some during the day, too, just to soothe the chaffing and irritation. It's not unusual that people end up needing a size smaller or even larger nasal pillow, so be open to experimenting.

2. What are your pressure settings, min and max? If your min pressure is 4 or 5, that "couldn't breathe" feeling might be when the pressure is at min -- many people describe this feeling and quickly decide to increase the min pressure.

3. Your AHI suggests you're not yet at the optimal pressure settings. Most often it's because the min pressure is too low. The machines don't "catch" apneas instantaneously, the pressure doesn't increase that fast. So if your min pressure is too low, it may have too far to go to get to a pressure that would have prevented the obstructive event. The best thing to do is post a few screenshots of your SleepyHead graphs so we can see what the pressure is doing during the night. We can often see if it's a situation where the min pressure is too low, and/or if there are some other issues that jump out from your graphs. Mouth and mask leaking can also result in less than optimal therapy, and SleepyHead can also tell us if you're spending too much time in large leak territory.

Here's a guide to organizing your SleepyHead reports for posting -- this will help us to give you the best help possible: https://sleep.tnet.com/resources/sleepyhead/shorganize

4. Forgive yourself. It helps. And there's nothing wrong with hope and optimism. You sound well read so you likely already know that you may or may not be free of your apnea if you lose weight. Weight is sometimes involved but there are lots of normal weight and skinny folks who have sleep apnea. It's an anatomical issue as much or more than a weight issue. And if you lose the weight and find you still need the machine, you really can get used to the whole thing. You may never like the deal, but its presence in your life can more or less fade into the background. If you stick around here, you'll start seeing there are plenty of younger people dealing with sleep apnea.

Welcome to the forum.

[SunnyBeBe]

I'm new too and just wanted to say that I too had a very sore nose in the beginning. (I'm now about 3 weeks in.) I didn't have the cream you mention, but I did use just a tad of K-Y that someone here suggested. It worked great. I ALSO switched to a size medium nasal pillow. I was using a small and the larger size seemed to do the trick. I also loosened up the headgear, so that the nasal pillow is not so tight on my nostrils. It's now comfortable and my nose is NOT sore anymore.

I was told to hang in there and they were right. I'm sleeping great now and the cpap is not nearly as bad as I thought. In fact, I'm able to focus better and I do feel more rested. It's not a huge change, but I can feel it. I try not to look at it as a life long burden. Who knows what new devices they will invent to treat this and even if I have to use it after I lose more weight, that's okay too.

[Sonnyboy]

Re: I love camping, I love spontaneity, and I'm only 33.

Get your self settled with the machine first but then when you have time search "camping, "river rafting", "battery", etc. There are some pretty amazing people on this forum that share their experiences and the batteries that work for them.

[BlackSpinner]

I am actually pretty angry that I have fallen into this scenario, and am having trouble dealing with it. I really can't imagine having to deal with this every night for the rest of my life. I love camping, I love spontaneity, and I'm only 33. In all likelihood, I have been suffering from OSA for 10+ years, but just knowing that it is real is really upsetting me. I pretty much believe it is my fault.I am overweight. I also like to drink (I'm a brewer and go to lots of events, tons of friends in the industry,etc), and obviously that contributes. I am really optimistic that I can lose 50lbs (go from 225 to 175, i'm 5'10") and reduce or eliminate dependency on a machine. I don't really know how realistic that is, but it is helping me to feel a bit of hope.

With the new lithium batteries you can go off grid for 2 -3 days. People are experimenting with solar chargers. As of right now I wouldn't look at a 6 week canoe trip in the NWT as a realistic goal but 3 day trips from a base camp with power is is doable.

Losing weight is a very good idea and will help you over all. (and some of us got pregnant on a 2% chance)

[kteague]

Sounds like you're doing a pretty good job of keeping it positive. I doubt many fell in love with the idea of using CPAP and were just glad to have an excuse to use it. It can be an inconvenience, but I figure that's a pretty fair trade-off for being a noninvasive life saving treatment. Had some frustrating times early on. Been known to hurl a mask at the wall in the middle of the night. But things settled in and have been routine for years. When I had a sore nose, it helped to change pillow sizes until the sore healed rather than have it rubbing the exact same spot while trying to heal. Good luck going forward.

[Janknitz]

Hugs for you. You are grieving.

Anger is the first stage of grief, and it's perfectly understandable to be mourning the loss of your image as a person who didn't have to sleep with a CPAP every night. I hear denial ("maybe the sleep study was wrong since I didn't really sleep"--know that we ALL told ourselves in the beginning that there must be some mistake and we could probably get away without using the machine) and bargaining ("If I just lose weight, then I won't have to do this any more"), too.

Eventually, acceptance comes, and then you get on with your life. So be kind to yourself during this process.

You are just where you are supposed to be at this stage. So hang in there and remember we are hear to help.

Be sure to look at my Swift FX fitting tips in my blog below. Even if you are using a different nasal pillow mask, these tips will help.

[yaconsult]

I'm new too and just wanted to say that I too had a very sore nose in the beginning. (I'm now about 3 weeks in.) I didn't have the cream you mention, but I did use just a tad of K-Y that someone here suggested. It worked great. I ALSO switched to a size medium nasal pillow. I was using a small and the larger size seemed to do the trick. I also loosened up the headgear, so that the nasal pillow is not so tight on my nostrils. It's now comfortable and my nose is NOT sore anymore.

I was told to hang in there and they were right. I'm sleeping great now and the cpap is not nearly as bad as I thought. In fact, I'm able to focus better and I do feel more rested. It's not a huge change, but I can feel it. I try not to look at it as a life long burden. Who knows what new devices they will invent to treat this and even if I have to use it after I lose more weight, that's okay too.

Thanks for letting us know! You did the hard work and now you are reaping the benefits. It's amazing how big a difference these little tips can make. And giving back by encouraging other is a wonderful thing to do.

You might consider adding a post to the end of the success stories thread here: viewtopic/t14494/Newbie-would-like-to-h ... lease.html

And, DavidSimon - believe or not, now, this machine is going to become your best friend and companion! It's going to allow you to do the things you want and need to do when you're awake. When I put on my mask, it relaxes me and I know I'm going to have a good night. You will get there too - just give it some time.

Don't worry about the future and weight loss. If you lose weight, you can always have another sleep test in the future to determine if you still need it. But don't make that your primary goal. Just enjoy getting some restful sleep at night for a change.

[DavidSimon]

Thanks so much for all the encouraging words and help.

2. What are your pressure settings, min and max? If your min pressure is 4 or 5, that "couldn't breathe" feeling might be when the pressure is at min -- many people describe this feeling and quickly decide to increase the min pressure.
3. Your AHI suggests you're not yet at the optimal pressure settings.

They set me up at 5-20 . I'll post some sleepy head stuff soon. I don't think I'm having any leaks (based on my look at the stats on machine and in sleepyhead)

With the new lithium batteries you can go off grid for 2 -3 days. People are experimenting with solar chargers. As of right now I wouldn't look at a 6 week canoe trip in the NWT as a realistic goal but 3 day trips from a base camp with power is is doable.

I have seen a lot of talk about this, and in fact I have a 400WH solar generator/battery setup, for my computer. That being said, are most people so improved/happy with CPAP that they must take it when traveling? Until I saw all the chatter about batteries and travel sizes etc, I just assumed most people went without when traveling. Especially given that I have probably been living with this for years, it doesn't seem like a few nights without could hurt - is this a dangerous thought process?

Been known to hurl a mask at the wall in the middle of the night. (...) When I had a sore nose, it helped to change pillow sizes until the sore healed rather than have it rubbing the exact same spot while trying to heal.

The throwing the mask is a (darkly) fun visual. I have felt like that but haven't thrown it yet The different pillows is what I am trying now, did the small last night and it didn't hurt as bad (after taking a day off) , but had some other issues like kind of felt like apnea gasp events where I was freaking out a bit. Maybe the min pressure, I dunno. Mouth was also getting kind of dry.

Hugs for you. You are grieving. (...)
Even if you are using a different nasal pillow mask, these tips will help.

Thanks for the encouragement. I didn't really think the sleep study was wrong, just perhaps that it represented a worst case scenario wrt the AHI, but who knows (only one night of data). Regarding the mask fitting, the P10 mask I have doesn't have adjustable straps, I guess you just have to move where you put them on your head, kind of weird. Not sure what I can do with it.


Thanks everyone!

[Janknitz]

Regarding the mask fitting, the P10 mask I have doesn't have adjustable straps, I guess you just have to move where you put them on your head, kind of weird. Not sure what I can do with it.

I don't have experience with that mask, but it looks like you can control the tension by widening or narrowing the gap between the two straps on the back of your head.