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Day 3 - Intro & Initial Concerns - DivaBreather - 09-12-2023
Hi everyone, good to e-meet you all!
I'm on Day 3 of treatment (tonight will be Night 4 using the CPAP) and have lots of different questions and concerns, as I'm sure most newbies do - it's great to see there's an active, experienced community here... I was hoping I could introduce myself and list a few initial observations I have in case anyone has any tips!
So, I'm 35, male, overweight (around 320lbs) and have likely had sleep apnea a long time. I basically ignored it, but then my new(ish) partner asked me if I'm aware I stop breathing in my sleep - of course I am aware of it, I'd just forgotten all about it! Anyway, with that partner moving in with me soon, I decided to finally see a doctor about it... mainly because I wanted to treat my snoring before my partner moves in.
I attended a sleep clinic - found it incredibly difficult to sleep during the clinic with all the the wires and attachments - and was shocked to be told that my AHI for the assessment was 92.50 with oxygen saturation dropping to 81%. Did other people have numbers this bad? 92.5 seems exceptionally high to me so... I guess it's good that I finally saw a doctor!
On the doctors advice, I purchased the ResMed AirSense 11, the ClimateLineAir™ 11 Heated Tube and the Philips Respironics DreamWear Nasal Pillow Mask. I also ordered a hose lift system but didn't realize it was a fairly small/flimsy travel system and my bed is very tall, so I haven't been able to use the lift and have spent the first three nights with the hose behind my pillow (as much as I've been able to, at least).
I still feel a little embarrassed about the treatment in honesty. I doubt my partner had envisioned moving in with their new boyfriend to find them sleeping in what looks like ICU equipment! But I guess health comes first and.. "if they love me, they won't care" and all that :-p
I didn't realize the device uses cellular networks to transmit data so unfortunately, being in South America, it won't connect for me - though after my first night, having researched this problem, I went to buy an SD card and have installed OSCAR, so I think I'm still getting the data I will need.
Initial results look pretty good! Night 1 was 4.60 AHI, Night 2 was 4.07 and Night 3 was 6.89. Could be better but certainly beats the 92.50 from the sleep clinic! I have attached OSCAR graphs for Night 2 and Night 3 (didn't have the SD card for Night 1 so only have very limited data for that first night).
Regrettably I feel like I have every possible issue that could make treatment more complicated. I sleep on my sides and stomach, I move and switch position a lot in the night, I usually breathe through my mouth... and I'm claustrophobic. I really want the nasal pillow to work (due to claustrophobia), so I am doing my best to keep my mouth closed and, while I'm awake, that appears to be going okay (who knows what is happening when I'm asleep). Unfortunately chin straps, tape, and any physical solution to encourage me to keep my mouth closed would also not play well with my claustrophobia so I'm just hoping that my conscious effort to keep my mouth closed as I fall asleep is continuing unconsciously into my sleep.
Anyway, a few concerns / questions that I hope you may have some tips for!
- I think I am being a little pedantic with the cleaning as I am following the mask manufacturer instructions which advise to clean, with soapy water, the nasal pillow, frame, elbow and release every day (and the head straps, tube, water container, etc weekly). So every day I am cleaning the mask stuff with soapy (dish soap) warm water in potable tap water, rinsing with tap water and then I rinse again with demineralized water (distilled would be too expensive here for daily cleaning - but I use distilled in the water tank). I leave it on a towel in the kitchen to dry but it never dries completely in time for bed, there's always still water droplets inside the mask frame for example that I can't access to towel dry... does this matter? Should I just use it with a few water droplets still inside? Am I cleaning it too much in your view?
- I am noticing a leak at the top, where the elbow & release connect to the hose. I feel like this might be an unpreventable leak, like the one at the front of the pillow that's actually meant to be there - does that sound right, or should it be possible to seal the hose to the mask tightly enough for there to be no leak at all at that connection?
- I am currently being woken very, very regularly with leaks (I'm exhausted because of it - I almost napped today but convinced myself not to). I feel like my mask fit is actually good, but when I change position in my sleep, the mask pulls and it causes the pillow to slightly change position so that there's a leak and it wakes me up. Do you think buying a decent hose lift will solve this outright, or is this an ongoing issue for many?
- In addition to the long list of other issues I have that make this treatment difficult, I also have sensitive teeth. I am noticing on those occasions where I'm regularly woken up that there is pain in my teeth (perhaps also contributing to being woken) - the same type of pain I have experienced in the past due to sensitivity when I have whitened them. I know it's from the flow of air (my teeth have experienced sensitivity from exposure to airflow / wind when in the past). Is this common? Do you think this means that maybe I'm sleeping with my mouth open in my sleep? (hoping attached OSCAR charts might give clues about whether that's the case for someone more experience interpreting the data).
Thanks in advance for your thoughts, I genuinely appreciate any advice a great deal!
Joe
RE: Day 3 - Intro & Initial Concerns - Millstone50 - 09-12-2023
Hello,
Couple things that stand out: One is you are using ramp, with an initial pressure of 4 and EPR of 1. This to me looks like it wasn't configured correctly, or at all, but what you want to try is disabling ramp altogether if you can tolerate going to sleep with your normal minimum pressure and not ramping with inadequate pressure. Second is you are effectively not using EPR at all, which may help with your flow limits and central apneas. If you turn EPR to Full Time and level 3, it may make a difference. I would also raise your minimum pressure to about 5 or 6 at least. 7 if you can handle it, as it will help you take advantage of EPR of 3 at your baseline.
I don't have experience with DreamWear, but on the ResMed version, there are intentional leak points at the elbow at the top and in front of the cushion piece.
RE: Day 3 - Intro & Initial Concerns - DivaBreather - 09-13-2023
(09-12-2023, 09:12 PM)Millstone50 Wrote: This to me looks like it wasn't configured correctly, or at all
Thanks for your reply!
Right now I've literally just taken it out the box, plugged it in and started using it - my doctor didn't really provide any instructions concerning configuration and I understood that the mentions were meant to be moreorless completely automated... I assumed all the 'Auto' settings would adjust to whatever is optimal for me based on what it detects.
Is that wrong? Is no one using the Auto settings?
RE: Day 3 - Intro & Initial Concerns - Millstone50 - 09-13-2023
(09-13-2023, 04:17 PM)DivaBreather Wrote: Thanks for your reply!
Right now I've literally just taken it out the box, plugged it in and started using it - my doctor didn't really provide any instructions concerning configuration and I understood that the mentions were meant to be moreorless completely automated... I assumed all the 'Auto' settings would adjust to whatever is optimal for me based on what it detects.
Is that wrong? Is no one using the Auto settings?
Unfortunately the "auto" part of APAP only goes so far. These are reactive devices and not proactive. So for a pressure-raising event to happen, you'll already have to be having flow limitations or obstructive apneas. It helps to adjust pressure to the point where the machine doesn't have to reach too far to get to an optimum level of therapy.
As far as ramp, it's best to disable it, as during your ramp time, you're not getting therapy. I would change EPR to full time level 3 and see how that works.