My First Night on the CPAP: impressions, challenges, and questions

[overshoot]

First off, I'm so glad that this forum and community is here as I go down this path. I've been really tired the last couple of years, and a sleep study was recommended. The results I got back were shocking to me, after doing a home study test (I still debate if the results are as bad as they seem, and want to do a 2nd study). I got back a diagnosis of severe obstructive sleep apnea, with an AHI or something like 55, and over 500 events in the night. I'm 35 years old, and not overweight, and this all came as a bit of a shock. They recommended immediately that I get on CPAP therapy, and scared me for the risks I was taking by even waiting, given the severity. I hope maybe this will be helpful to others newly diagnosed, and encourage them to try it.

Over the next few weeks, I think I bargained and denied the reality, trying to mitigate my sleep apnea with everything but CPAP: Expensive Wedge Pillow, forcing myself to sleep on my side, a dental device to move my jaw/tongue forward, a humidifier, a oximeter with alarm, etc. At the end of the day, as my doctor finally convinced me - these weren't going to do it for me, so I finally accepted that I'd need to try CPAP therapy. I'm really glad I did my research before the fitting, so that I knew what to ask for, and tried many different masks and combinations.

Fitting / Setup : I ended up getting a F&P Icon Auto CPAP Machine, with built in humidifier, ramp, sense awake, etc. Interestingly on the mask, what worked best for me was a hybrid mask that was made of silicone from Respironics Dreamwear full-face mask, that covers the whole face, but has a pillow for the nose instead of fully covering it (which I really liked), and the hose connects at the top instead of the bottom, which once I laid down in bed I appreciated. My prescription for pressure called for a range of 8-20, and the tech set it to this, as well as a 3/6 heat humidity level.

My First Night: As expected, it took a lot for me to fall asleep and get used to the machine. When i finally fell asleep, I was awoken quickly by a burst to 20 that didn't feel right. It was hard to believe I would already been needing the max pressure (I could be wrong obviously), and that was a LOT of air, and very tough to get used to. I also was a little scared that once I woke up it didn't start dialing back down, but after researching, I guess this is because it can't tell the difference between an event/episode, and just being awake and not needing it, so it takes a while to wind back down, but I just figured that I needed to get used to it first before going all-in, and that having a lower pressure setting was obviously better than not using it at all, so I changed the settings to have a minimum of 8, and a max of 12. 8 actually felt good breathing in, and while it felt a little strange to have it occasionally "blow up" my cheeks with air, I got used to it.

Finally, at around 2:30 I was able to go in and out of sleep, and was starting to get used to different positions and my pillow setup. At around 3:30 or 4:00 I fell asleep fully, and woke up on my own around 6:15, looking at the pressure monitor and having it still say 8 (which was great, since every other time it was maxing). I dozed a bit more, but then got up for the day. What is very odd to me is that while I certainly didn't get enough sleep or rest (maybe 3 total hours) I feel differently. I can't quite put my finger on it, but more "clear", and in a better mood. I walked in today to work, and the guard said unprompted, "well, you seem in a good mood and enthusiastic to be here". I've worked here for 7 years and so that was strange to hear, as I was feeling a bit more positive. Perhaps it is just a bit of relief that I can make it through sleeping with the mask, but maybe not.

I look forward almost to giving it another shot tonight (Friday) without work waiting for me the next morning, and get a full night's rest to see what that feel's like. I'm encouraged that I could sit fall fully asleep with it on in the first night, but I'm not going to lie - it is depressing to think that I'll have to use this or something very like it to sleep every night, the rest of my life. I'll try and take that one day at a time, and hopefully I'll feel good enough that I'll feel its clearly worth it - but its still very early.

Questions: There are so many questions I have, and I've taken a lot of time to research them on this board (I'm sure they've been asked before somewhere), but I thought it could help the newbies like me, as I didn't find them specific to my issues. Anyone who could help or offer their opinion, I would really appreciate.

• Is it dangerous to have my MAX setting at 12 instead of the prescribed 20 as I get more used to my machine, with the thought that something is better than nothing, and work my way up?

• I felt some leaking going on where my mask hose met with the hose, and I couldn't find a leak-free way to connect it to the mask. It wasn't a lot, but it made me start wondering if that was the reason for the bursts to 20 when it detected an apnea event?

• How in the world do I get started with this sleepyhead software? I have a SD Card of sorts in my machine that I can take out and plug into my computer, but it seems to just send a report to my tech's office, that she can email me later. I would like to have a more hands on approach, and wonder if my auto cpap icon machine is capable of using the sleepyhead software. Is there a steep learning curve to at least get to the point where it spits out a report (interpreting I'm sure is a whole different thing). I would really like to know what my AHI is, and how many events I've had, etc. if that's possible.

• Should I try and incorporate my oximeter I bought from Amazon into this to see if I drop my saturated O2 level below 90, or at least below 85? Or give it more time before I do that?

• The cleaning and maintenance seems overwhelming to me... is the SoClean device a real time-saver and worth the money if you have it to spend? And, are you all really cleaning your tubes every night in vinegar water or mild detergent? and soaking the mask, etc.?

Thanks!

[D.H.]

Setting a ceiling of 12 is better than not using it (which is effectively 0). This machine is compatible with Sleepyhead, so I suggest that you download your data and analyze your sleep. If there's no SD card in your machine, you can get one quite inexpensively (you don't need a fancy one).

[Pugsy]

Welcome to the forum.

I will take your questions as I have time and/or others chime in.

The cleaning and maintenance seems overwhelming to me... is the SoClean device a real time-saver and worth the money if you have it to spend? And, are you all really cleaning your tubes every night in vinegar water or mild detergent? and soaking the mask, etc.?

Don't waste your money on the SoClean. You still have to manually remove any facial oils, snot, slobber, dirt, grime before you would use the SoClean device because all it does (assuming it kills anything) is nuke things so it kills any germs/bacteria/whatever.
They even sell a product (big surprise) for the normal cleaning.
To me there is a difference between cleaning and sanitizing something. Cleaning is removing the crud...sanitizing is killing something.

And no....most of us don't do all that cleaning stuff daily...if we do much at all.
I don't even bother cleaning/washing the hose because I don't think it gets dirty. All it has going through it is filtered air.
At most for daily cleaning since you are using a full face mask is wipe it down with some of those little baby wipe kind of things in the morning to remove facial oils and save the full washing routine for maybe once a week.
Me...I use a nasal pillow mask so not much is ever touching my face to accumulate any facial oils and I wash it whenever I think about it which isn't very often...maybe once a month.
A lot is going to depend on how oily your skin is and if you slobber much in your mask. Do whatever you feel good doing.

Search the forum for "SoClean" and you can get an idea how most of us think it is a waste of money.
Now when it actually can wash something for me...but the I don't do much washing...maybe then I would consider it.
I got better things to do with my money.
Now if someone has situation where their immune system is compromised for some reason...I might think more about adding sanitizing into my routine but if I was going to do that I wouldn't do the Ozone thing but instead would maybe do the UV light thing.
The ozone will prematurely age the silicone in the mask. Turns it yellow from what I have read and makes it less flexible.

If you are a die hard germaphobe and have buckets of money and just have to nuke everything so you can sleep with your equipment...then get something to nuke it if it gives you peace of mind. It's your equipment, your life and your money.

[Pugsy]

Is it dangerous to have my MAX setting at 12 instead of the prescribed 20 as I get more used to my machine, with the thought that something is better than nothing, and work my way up?

No, not dangerous and you may not need the 20 cm as much as you think you do.
Use SleepyHead and see exactly what the pressure wanted to do before worrying about the maximum.
The worst thing that might happen if you end up using a pressure that can't hold your airway open is some apnea events might slip past the defenses and some might not.

You gotta get the sleep first and foremost and wide variations in pressure can sure be a problem for some people especially when first starting therapy both in terms of comfort and mask seal.

Do whatever it takes for you to get the sleep first and then we worry about pressure settings being optimal or not.

[OkyDoky]

Learning about your machine and its response to events by using Sleepyhead is one of the best thing you can do for your therapy.
Here is a link where you can get the Clinical Manual. It has more information than the User Manual that's given to you. Scroll down to section three and follow instructions for them to email you one. https://www.apneaboard.com/adjust-cpap- ... tup-manual

Here is a link to a member's site that explains how to download Sleepyhead. https://sleep.tnet.com/resources/sleepyhead
Check out the other links on his site. He has a lot of good information.

[Pugsy]

Should I try and incorporate my oximeter I bought from Amazon into this to see if I drop my saturated O2 level below 90, or at least below 85? Or give it more time before I do that?

I wouldn't be in a big rush to add more stuff to be attached to your body and maybe make going to sleep or staying asleep more problematic.

Get a copy of your sleep study results and see exactly how low the oxygen went without cpap. It won't go any lower with cpap and might not drop much at all (it's normal for there to be a little drop during sleep).

SleepyHead is compatible with some pulse oximeters as well as your machine.
Which one did you get?
https://sleep.tnet.com/equipment

Using the SD card and the software doesn't stop the machine from doing whatever it does to transmit the data to your provider or doctor. No one knows unless you tell them.

The Icon is compatible with SleepyHead but it doesn't record all the graphs/data you might see on one of the other machine brand reports. It is what it is in terms of data but decent enough to help you evaluate your therapy.
We can also get you InfoSmart by F & P but it's a big PITA to work with and Sleepyhead will show the same stuff that InfoSmart shows without all the headaches.

[Pugsy]

I felt some leaking going on where my mask hose met with the hose, and I couldn't find a leak-free way to connect it to the mask. It wasn't a lot, but it made me start wondering if that was the reason for the bursts to 20 when it detected an apnea event?

What you felt was what we call intentional leak or the mask venting. This is normal and is needed for carbon dioxide that we exhale to get vented out so we don't rebreathe bad air.
There is also a vent hole at the mask level with the DreamWear ...vent hole up where the long hose attaches to the mask frame and another down near the nose/mouth area.

This is normal and needed...and it is NOT the cause of the pressure going to 20. These machines won't increase pressure trying to fix big leaks with more pressure. They just don't work that way.

Be aware that if you use SleepyHead that the default SH red line for large leak threshold is for a ResMed machine which is 24 L/min and the Icon reports leak in a different way than the ResMed machine and SH may tell you that you are having some really big leak issues when you aren't. So don't panic if it does...we can fix it by making a better red line threshold. Your machine will flag large leaks if you have them on a graph...Cross that bridge if we need to.

[overshoot]

Thank you all very much for your replies! Glad to know the leak sound was intentional, and that make sense why you need it.

And I'll quit being so obsessive over the daily cleaning, as it sounds like a massive pain in the ass a good way to demotivate me in the beginning. Web/Baby wipes daily and a weekly clean should be fine for now.

Sounds like I'll just have to take the time to get this software installed, working, and begin interpreting it, as it has been cited as so useful to so many people. Its 1:30 after lunch now, and I still feel like I have more energy than I do on typical days where I get 7 hours of "sleep" with no CPAP. Just have to keep pushing and getting used to this being the new normal (that's really the hardest part). Using it for a night or a few nights, is one thing, but getting your head around being permanent is what I'm finding most challenging psychologically.

[OkyDoky]

Initially it was a DOT job requirement that I get tested and I built up a wall of disbelief when I was told I needed a CPAP. Luckily, it wasn't too hard for me to sleep with the machine and as I used it I began to see the benefits. There are so many health problems that SA and Hypoxia contribute to their development that now I so wished I was DX earlier. Even with the added aggravation sometimes, my machine has become comforting to sleep with at night.

No one likes to give up their so called independence but keep focused on the positive long term benefits and you will have success.

[zonker]

welcome, overshoot!

other more knowledgeable people have spoken up and will continue to speak up. i'm just here to mention couple of things-

1. when you get the chance, go to the control panel and fill out your equipment, please.

2. as you continue your journey, pleas return to this post with any further questions, at least in the near term, until people get to know you.

3. and this is really the most important part. your attitude is tremendous! you are immediately recognizing it's a hard long trip. but i assure you, you can (and will!) do this.

good luck1

[overshoot]

Thank you!

Well, I got my first results downloaded from my machine using sleepyhead. While I feel pretty good (and my AHI seems to have dropped massively from 64 to 7.31, the report summary said it was "not very good" and that my mask is leaking way too much. Glad to know this now instead of having to wait until my Aug appointment.

I've posted my first results - and would love for any help on how to improve. Clearly I have a leak problem, and I'll work on that tonight.

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[LSAT]

In addition to working on the leaks, I would increase your minimum pressure to 9 and your maximum to 15. Your low max is preventing the machine from increasing the pressure to where it can eliminate events.

[Soothest Sleep]

Just have to keep pushing and getting used to this being the new normal (that's really the hardest part). Using it for a night or a few nights, is one thing, but getting your head around being permanent is what I'm finding most challenging psychologically.

Welcome to the forum.

There are a lot of details to take on board at the beginning of CPAP use, so it can feel overwhelming. But everything is do-able. Practise patience as you learn and keep up your positive attitude. Focus each day on what you need to do for this one day only. Acclimating to treatment takes time, differing in duration for each of us. Once you're there, though, the idea of permanent use won't be so threatening; very likely your machine will become a trusted sleep companion; and the routines you establish will become second-nature to you. Take a problem-solving approach as you move forward, read the user and provider manuals for your equipment, and use the forum as needed to help sort out puzzles.

Wishing you restful sleep,
Jean

[palerider]

In addition to working on the leaks, I would increase your minimum pressure to 9 and your maximum to 15. Your low max is preventing the machine from increasing the pressure to where it can eliminate events.

What he said +1

[overshoot]

Well, damn... No real improvement in my scores - and even worse leakage. I started to work my way up to the 9 /15 recommendation with changing it from 8 / 12 to 9 / 13.5.

However, I think the advice was still correct/good, but the problem is maybe the way my mask is fitting. I even heard it escaping more I think this time. I tightened the mast around my face a bit last night before bed, thinking that would help, but I believe a lot of air is escaping from the top of my mask on the sides. I've found the nasal strips help with filling up this space a bit more, but clearly I need to work on my fit for leakage, as it was 2X as bad as yesterday.

I know it is still early (night 3), and this is going to be a long road of adjustments, so I'm not disheartened, but I am anxious to try and get a sub 5 AHI night! Going from 60+ to 7 thought is still improvement.

Any suggestions for better mask fitting with the type of hybrid mask that I have? I have a longer, skinny nose, so its harder to fill up the space to make a tight seal maybe?

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