Introductions - help with breathing - arrousal

[startanew]

Hello all:
I’ve been lurking and learning for the past month. Appreciate all the wisdom and experience being shared. First some background.
After a couple of years of being very tired - had a home sleep study done this summer. Had an RHI of 11 (mild) while sleeping on my side and 84 (severe) while supine. More centals than obstuctives. Sleep doc prescribed APAP therapy. Got my machine in Sept and a ResMed FFM from the DME and very limited help. First effort at therapy was pretty much a disaster and I abandoned after a week.

Attempted to “cope” with the situation by side sleeping on the couch, exercise, and diet and better sleep hygiene (anything but the hose). Side sleeping didn’t work as I was constantly worried about going from side to supine which ended up really messing up my sleep. The good news is that I’ve dropped 20 lbs though diet and exercise but sleep had deteriorated so I was getting 3-5 hours of broken sleep . And I come to realize SA is deadly serious and I needed to start anew with therapy with more information, better support, nasal pillows and a willingness to “endure” a difficult transition.

I started APAP therapy 12/21 with the rule that if I am in bed I need to be on therapy. And so far I’ve kept to that. Two days after I started up therapy I got a good wake up call … I blanked out while driving and ran into a light pole - luckily I wasn’t driving fast – though I did manage to total the vehicle (doesn’t take much with 12 year old van).

So how am I doing..wish I could say great – but it looks like I’m one of those folks who will take awhile to adjust since I have a pretty low arousal threshold – so while I am getting 6-7 hours night on the APAP - I’m getting 4-6 hours of sleep. Ironically I am getting good AHI numbers 1- 3 but some of that may be because I may not be getting to deep sleep. Still I am doing better than the fall – getting enough sleep to function most days– but not yet enough to thrive. Occasional signs of hope. Actually had a dream the other night – the first I remembered in a couple of years. Of course it was followed by a couple of “bad nights” -


Biggest issue for me is getting to sleep (and then staying asleep) - combination of comfort with the mask and the breathing pattern does not seem natural – and tends to wind me up rather than down. I will often start the night so tired – I can’t read without nodding off -- but as soon as I am in bed and hooked up – the combination of mask discomfort and breathing patterns gets me wired. Per robysue great recommendations on addressing insomnia I will get up after 30-60 minutes settle down (and go back to sleep again) will do that for 1-2 cycles and before finally falling asleep for 3-4 hours. Other pattern is having a couple of bad sleep interrupted nights before I get to a state where I will have a better night. Still looking to put two good nights together.

So here are the details and my stats..

• Philips Respironics System One RemStar Auto with A-Flex (560P) == pressure 5 to 20. Originally set to 4 to 20 – until I asked the sleep doc to increase since I was feeling I wasn’t getting enough air. Humidity is at 1 -- pressure relief currently at x1
• Opus 360 -- large pillows with a resmed chinstrap



Slowly working through the issues

• OPUS 360 is better than a full face mask works and reasonably well since I have mustache – but still have some comfort issues and it does tend to move a bit and the velcro tends to give way and some soreness / redness on the cheeks. I am looking at trying some of the newer np masks when I can replace next month. Will probably invest in pad a cheek once I get settled into a mask.

• Leaks seem to be OK -- though I may have the mask on a little tight.

• Still searching for the right combo of pillows etc to work with side sleeping and gear. Have a pap pillow so that helps.

• Sleep hygiene is fairly good – no naps regular times to start and stop bed time (11 – 6), exercise most days, no caffeine after noon – eventually hope to phase out.

• Still experimenting with comfort ER settings don’t have a clear sense of which is best.

Other than a new mask – I am not quite sure what to try next

I do wonder if I could come up with better settings that would more natural for breathing. I also wonder if the mask setting on the APAP (x1) is the right one for an OPUS 360 --- causing any issues

Here are two examples of a not so good night..
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and a better night…[Note the cluster of events after 5 am was sleeping on my back]

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Suggestions on next steps always welcome..

[packer]

when I had bottom number low as you have it I felt like I was starving for air- very uncomfortable

I just bumped up bottom number to 9 or so if I remember-- made a huge difference

have used same machine for years with good results--

[Pugsy]

Welcome to the forum.

Biggest issue for me is getting to sleep (and then staying asleep) - combination of comfort with the mask and the breathing pattern does not seem natural – and tends to wind me up rather than down. I will often start the night so tired – I can’t read without nodding off -- but as soon as I am in bed and hooked up – the combination of mask discomfort and breathing patterns gets me wired.

This is actually quite common and should improve with time. You are already familiar with Robysue's hints on dealing with sleep onset insomnia and sleep maintenance insomnia.

You might talk to your doctor about the minimum pressure again if you find that you continually are rolling over on to your back to where you see those clusters of OAs...the machine isn't able to respond quite quickly enough at 5 cm.
Other parts of the night you seem to do well...and I assume you are most likely on your side. If you aren't normally going to be sleeping on your back (it's common to need more pressure when sleeping supine) it may not matter much.
Sometimes we can't stay off our backs though..no matter how much we want to and when that happens sometimes we need a little more minimum pressure (probably 1 cm or so) so that the machine can do a better job holding the airway open when supine sleeping.

Your leak line looks great. Part of that up and down that looks kinda big is just SleepyHead making mountains out of molehills due to the scale involved.

Regarding the exhale relief settings....just choose the one that feels more natural to you and don't worry about what number it is.

The Resistance setting for the mask...that's not something that is a critical issue one way or the other and really shouldn't have any impact on what you actually sense or feel.

[startanew]

Thanks for the welcome and thoughts.

I was hoping for a magic bullet -- other than patience, perseverance, and continued experimentation ...

Will keep folks posted on the journey

[Pugsy]

I was hoping for a magic bullet

Join the long list of others who also were hoping for the miracle and it didn't come immediately.
Actually those that do get lucky enough to feel marked improvement pretty much immediately are in a minority.
Most of us (uncluding myself) found that it took

patience, perseverance, and continued experimentation

Plus...a lot of time people have other issues that are unrelated to sleep apnea and the machine doesn't do much for non sleep apnea stuff...as much as we would like for it too. Not every problem we have is related to sleep apnea.

[jweeks]

Actually those that do get lucky enough to feel marked improvement pretty much immediately are in a minority.

Hi,

I was lucky enough to feel dramatic improvement day one. However, that only took me from "near death" up to "pretty awful". I then had to work my way up through "terrible", "yucky", "icky", "bad", "not so good", and "nearly OK" before I got to "pretty good". That took about a year. Another year later, I felt "reasonably nice" and today feel "pretty great". The journey can take longer than we hope for, but the results are well worth it. I am hoping that "startanew" is starting higher up on the scale than I did, and maybe that is why it feels like progress is slow.

-john-