Newbie - 9 days in - So Sleepy - Send help

[allama]

Hello,

To make a long story short, I am on day 9 of using my shiny new cpap and mask. I am so tired I can not function. Just typing this post out is hard. My brain is not functioning well at all. I am waking up just shy of 4 hours of sleep and I am unable to get back to sleep. Sleeping with the cpap is hard and sleeping without it is hard now too.

I am on the struggle bus. You have all been here. Help me by giving me your answers and suggestions, please...please.

I am using a ReMed AirSense 10 Respond, a Fisher & Paykel Simplus Full Face Mask Medium (deviated septum & non-allergic rhinitis & severe allergies & Hayfeaver), EPAP Min 6cm to Max 16cm, Auto humidity (4) and tube temp of 78.

I'm not sure what to do. Just keep swimming? or should I be contacting Dr.'s for additional support?

I slept ok the first 3 nights, not bad and not great, but as the week has gone on, the sleeps have gotten worse. Went from almost a full nights sleep on the first 3 nights, to waking up after 4 hours and being awake for a couple hours and then sleeping again for 4 or so hours., to now. I am sleeping for about 2.5 hours and waking up, and unable to get back to sleep. After I wake up it feels so hard to breathe I can't fall back to sleep. 


Breathing: The issue is the feeling of it being really hard to breathe when the pressure is up higher. I do not mean exhaling, I mean inhaling. It feels very hard to breathe in, like I am fighting to take a deep breath. When I lay on my side, the opposite side nasal passage swells shut (it has done this for ages and I have seen an ENT who never really solved the problem). So I am already at a disadvantage with only 1 working nostril. Plus my septum is deviated to the left, so when laying on my right side, the right side swells shut and my left side nostril is slightly obstructed, so it feels like breathing through a straw sometimes.

Mask Fit: I do NOT have an issue with wearing the mask or feeling claustrophobic. The mask fit does feel of though. I have fat round cheeks that feel squished when the mask is tight enough to prevent leaks. (I did all the fit problem solving I could find. Bothj videos and advice posts. I adjusted while laying in sleeping position and started using liners to prevent leaks.) In order to prevent leaks at the bridge of the nose, the mask has to come way down on my face, so it is almost pinching my nose shut. OSCAR and MyAir say I have very few leaks though. I am going to shop for another mask, but right now my sleepy brain reading comprehension is crap. So feel free to suggest masks for me to check out.

I'm trying to do lots of reading about OSCAR so I can better analyze what is causing issues, and newbie posts for questions already answered, but I am so tired just reading is hard to do.

I can add more info if it helps, just say what info you need. I am new to using OSCAR but I can do the thing with the screen shots and stuff.

Thanks for any advice or suggestions. I just wanna sleep better, and breath ok.

[PeaceLoveAndPizza]

Please post some OSCAR charts, but read the link in my signature “Organising your OSCAR Charts” to get the formatting correct. It makes it easier on us as we try to help.


Given your current description it sounds like the pressure is too low, but I need to see OSCAR charts to be sure. Also, you have similar nasal challenges as I, but you can still use nasal pillows with proper preparation e.g. nasal rinse, allergy meds, generic Flonase and/or Azelastine, etc. 

FYI, the Respond model is basically a ResMed Airsense 10 Autoset that was originally destined for India or Japan, but was sold in the US.

https://www.apneaboard.com/forums/Thread...-Questions

[allama]

Thanks for the reply PeaceLoveAndPizza,

I got almost 1.5 hour nap and my sleep brain was able to read the suggested post with some level of comprehension. I tried to follow all the directions for making the screen shots of my charts. Here are the last 3 sleeps. If I missed anything or you want zoom in's let me know. I am still learning how to read them and what it all means, so any observations are appreciated.

As for nasal challenges, I take a 12 hour antihistamine, I use generic Flonase, and I use arm & hammer simple saline spray. I have seen very noticeable improvement of my sinuses with using the auto setting for the humidifier. I even have a hygrometer (humidity thermometer) in my room, so I know the ambient humidity. The swelling shut issue is positional, as it changes sides in minutes depending on what side I am laying on, and having the deviated septum (left leaning) makes it like breathing through a straw when I am laying on my right side. I am going to go back and see the ENT again. I am afraid the only option may be corrective surgery. Currently I only sleep on my left side (it does get sore sometimes)

FYI, the Respond model is basically a ResMed Airsense 10 Autoset that was originally destined for India or Japan, but was sold in the US.

I only put the respond as my model because that is what the MyAir app says it is. That is an interesting factoid though. Other than it being a neat bit of info about my machine's origins, does it have any other importance to the working of my machine?

[SarcasticDave94]

My humble opinion, there's a Ramp that's on probably way too long that's robbing you of therapy time. It's seen in that long gradual ramping up pressure every startup within the sessions. Best answer is to turn it off, second best is Auto timing and at least at 6 pressure.

Second, I'd increase min pressure to 7 and make EPR 3 full time.

There may be more edits needed, but this is where I'd start.

Most cases your doctor will be fairly hopeless for help. Yours might be helpful, but most of us have to travel CPAP land unaided by medicals.

[Deborah K.]

I agree with Dave on the initial setting changes.  Also, with the poor mask fit I think you might do better with a nasal pillows mask, as this type of mask does not contact your cheeks.  The P30i is nice, or you might like one of the Bleep maskless masks.  I too started with a full face mask, but liked the P30i  much better and the Bleep system even better. Good luck with your new therapy!

[allama]

Thanks for the reply SarcasticDave94 ,

The last 3 sleeps (the ones I posted charts for above) are the only nights I have used the Ramp feature. Prior to the last 3 sleeps, I was starting at my full min pressure. The first 3 or 4 nights I was sitting up for about an hour just wearing the mask to acclimate. After 3 days I started having issues falling asleep after my acclimation period, so I decided to try the ramp feature. I do agree, the 45 mins I set the ramp up to was WAY too long., but I was sitting up for almost 20 mins of that. I set it to 20 mins for the most recent sleep (nap) and it seemed to be better. Here are the charts for the 3 sleeps prior to the ones I posted above.

Second, I'd increase min pressure to 7 and make EPR 3 full time.

I will look into adjusting the pressure settings myself. What is FPR please? 
Also, the higher min of 7 makes sense. I have only had 1 titration done and it was not done by the DR who set my min and max at 6 and 16. That titration (that was poorly done and was not long enough for a proper titration really), the technician had me set at an 8 (constant pressure).

I have zero expectations that any Dr. will help with any issue. I have yet to find a good pulmonologist. The self advocating I have had to do, just to get my cpap properly diagnosed is disgusting. It is rare to find a Dr. that listens and actively helps. I will harass my ENT to help me fix my sinus issues though. Self advocate until someone listens to me.

I know it takes time and trial and error to find my sweet spot, my happy place in cpap land. I'm thankful forums like this exist and that I can reap the wisdom of those who have had hard journeys through cpap land.

[allama]

Thanks for the reply Deborah K.,

Thanks for the welcome as well, happy to be here!

I will look into upping my base min setting. Unfortunately, I need a full face mask or at the least a partial. I am a mouth breather sometimes, especially if I am on my back. I tried the chin strap, but with this Simplus it actually causes my jaw to push back and down, and that makes my mask leak more and my TMJ aggravated. I do not want to tape my mouth shut like I have read some people do. I do want to look into a partial mask with nasal pillows though. I think I would be happier with that, than something that has to seal at the bridge of my nose.

I did order a mask liner from padacheek, and I think I may order or make the stabilizing strap for the bottom straps too. I am going to shop for masks online too.

[PeaceLoveAndPizza]

You can try a soft cervical collar as well. It allows the weight of your head to help keep your mouth closed. I use the Caldera Releaf, which has worked well for me. Others like the Velpeau or Core. All are available on Amazon. 

https://www.apneaboard.com/wiki/index.ph...cal_Collar

See the attached to come up with the proper size, in the event you decide to give it a go.

[SarcasticDave94]

OK, a follow-up. You can change your therapy settings yourself. Here's the thumbnail sketch: on your ResMed click and hold both Dial and Home for 5 seconds. Your CPAP screen changes to the setup clinician menu. Dial to the item you want to edit, click, dial to change value, click to lock it. After done you may use the Home button to exit.

Second and better is getting the machine clinical manual HERE.

[allama]

I don’t think I would be happy in a collar, but I will keep it in the back of my sleepy brain as an option if all else fails. I have big issues with stuff being tight around my neck.

---

sweet! Thank you! Changing the setting makes me nervous, but at least I know I can if things don’t improve with any other changes.