Back at after a year off

Hi there,

Mostly just wanted to say hi and ask for a little advice.

Some background: I was diagnosed with sleep apnea in March of 2017 at the age of 31. 6'1", 220lbs which I think makes my technically obese by BMI standards, but I have a 35" waist... weightlifting.

Complained to primary care doc and eventually convinced him to let me go in for a sleep study. After an initial study and a secondary titration study, I was given a Philips CPAP Pro set at a pressure of 8.0 along with a Wisp nose mask (despite using nasal pillows during the study), and that was it.

What followed was a little over a year of struggling with the CPAP. I definitely felt better when using it and eventually got to the point where I hated sleeping without it since I felt so terrible upon waking, but I have always had a hard time breathing through my nose and often had to sleep without it. I wore BreatheRite strips every night which helped a bit, but it was a huge pain. No follow-up from primary care doc or anyone else.

I was diagnosed with testicular cancer in April of 2018 at age 32. I only mention this because I eventually stopped using the CPAP at some point during chemo because I was actually worried about getting an infection from my poor CPAP cleaning habits (I've been in remission since August 2018!)

Now that things have calmed down a bit, I want to get back on the CPAP train.

Requested and finally actually got to read the results of the sleep studies. AHI 17.7 on the initial study... 2.2 during REM sleep during the titration study. I just found out about OSCAR and loaded in a bunch of old data... AHI usually in the 3-4 range with some better and worse nights here and there.

Ordered some new supplies from the medical supply co (deductible is shot already - thanks CT scans!) and will be trying the DreamWear pillows that I used during the study.

I would appreciate any tips on dealing with nasal congestion... I sleep on my side/stomach and breathe through my mouth without the CPAP. Is there a mask type that works well for stomach sleepers?

Is an AHI around 3-4 good enough, or should I be looking at adjusting settings to get that into the 1-2 range?

Thank you!

"They" say that anything under five is OK. However, I know I fell rotten if I'm over 2.

The standard advice is to wash your face in the evening immediately before putting the mask on and also blow your nose immediately before putting the mask on. You might also want to consider using saline nose drops at that time (or gettings a prescription medicine from your doctor).

If none of that works, you might want to consider a full face mask. It won't fix nasal congestion, but it will allow mouth breathing without compromising the seal.

He machine you have listed is wrong, since the CPAP model does not produce any data.

What machine do you really have?

jcs wrote: ↑

Mon Jul 29, 2019 3:08 pm

I was given a Philips CPAP Pro

You have the wrong machine chosen in your equipment profile. Go back and look for the DreamStation Pro model and change it.
Will avoid confusion later.

About reducing the AHI....let's see what it is made up of first then we can decide on the best plan of attack.
Some stuff needs more pressure and some stuff doesn't.
Let's get some recent software reports if you have any from starting again.
What happened a year ago really doesn't have much bearing on now.

I use a generic Flonase when I have nasal congestion. Costco's kirkland brand has the best price I've seen for it.

Thanks for the replies. Didn't realize I had picked the wrong machine... fixed! The new supplies I ordered last week came today, so I can start with the Dreamwear tonight.

I'll see if I can steal some of my son's saline nose spray for tonight and hope I can breathe!

Good to hear you’re starting back up with apnea treatment after your cancer treatment! I have nasal congestion but do fine with the ResMed P 10 nasal pillows. I went to an allergist and have a prescription spray (Azelastine) as well as Flonase, plus she has me taking Singulair and cetirizine. I hope to cut a lot of that out once my allergy shots kick in.

The allergist also recommended NeilMed nasal rinse—weird experience at first but OK.

I like to be sure my squirting and rinsing are done a few hours before bedtime so I can get over any drips or irritation.

You might play around with your humidity options. Some people do best with none, and others stay clearer with a lot.

I am sure the experts here can help you get your AHI down once you can post some charts.

Well my first night back went pretty well. I woke up several times during the night, but I didn't rip off the mask in anger (at not being able to breathe) like I used to... the nasal pillows work so much better for me than the Wisp mask! I wish I had been given this way back in 2017.

The overall AHI of 1.34 is much better than I used to see! Pretty happy with that.

The numbers on the leak rate graph look a bit large. Maybe the mask needs some adjustment?

When I woke up during the night I was worried that I had been mouth breathing. Does anything in the charts indicate that?

jcs wrote: ↑

Tue Jul 30, 2019 7:24 am

Well my first night back went pretty well. I woke up several times during the night, but I didn't rip off the mask in anger (at not being able to breathe) like I used to... the nasal pillows work so much better for me than the Wisp mask! I wish I had been given this way back in 2017.

The overall AHI of 1.34 is much better than I used to see! Pretty happy with that.

The numbers on the leak rate graph look a bit large. Maybe the mask needs some adjustment?

When I woke up during the night I was worried that I had been mouth breathing. Does anything in the charts indicate that?

Leaks could be from mouth breathing

The leak numbers look a bit large because of how the machine reports leaks.
The top leak line is what is called the total leak...total leak is the mask's expected vent rate (all masks have vent rates or another term is intentional leak rates) plus any excess leak going on. Excess being either mask movement or mouth opening if using a nasal interface mask.
The bottom leak line is an approximation of excess leak only.
I can't see the time over red line leak percentage but the software defaults to a ResMed leak number and you aren't using a ResMed machine....so if it is showing very high percentage over the red line I doubt that number is correct. There is a fix for that...make the red line more in tune with the red line for Respironics machines.
Go to Preferences/CPAP tab and change the red line number of 24 to something more appropriate for a Respironics machine.
It's hard to get an exact number because the red line threshold actually varies with a Respironics machine and isn't static. It varies as the pressure varies. At your relatively low pressure...maybe 60 L/min would be more accurate.
Or you can just turn off that statistic and watch the events graph for leak evaluation. The grey areas...that's the machine reporting and the statistic is a software report based on the red line threshold.

You do have 4 very brief periods of large leak flagged. If they didn't wake you up I don't know that I would worry about them.
You spent very little time in large leak. I have often ignored worse because I slept through it.
The ragged nature of the overall leak line....my first thought is mask movement leak.
But it could be a lot of mouth breathing. We can't distinguish what a leak was caused from by looking at the leak line.

It looks more like mask movement to me...but to be sure you could simply tape your mouth closed for one night and see if that eliminates the leak or not.

Thanks for the replies. My DME is sending a Philips chin strap, but I may look into some other methods as well for mouth breathing.

I think I fixed the leak reporting issue in the OSCAR preferences: OSCAR > Preferences > CPAP Tab > Flag Leaks Over Threshold = 60.0 L/min

I don't think I woke up as many times last night, but there seem to be more events and worse leaking. I think I start off sleeping on my stomach/side and eventually wake up on my back. It would be great if there was a pillow for nasal masks and stomach sleeping.

From my titration sleep study:
"The supine AHI was 7.9 and the non-supine AHI was 0.9"

Does this mean that back-sleeping should be avoided?

Also from titration study: What determines the optimal pressure? Do the doctors just shoot for an AHI below a certain threshold and call it good?

jcs wrote: ↑

Wed Jul 31, 2019 8:23 am

From my titration sleep study:
"The supine AHI was 7.9 and the non-supine AHI was 0.9"

Does this mean that back-sleeping should be avoided?

With optimal pressure settings people should be able to sleep in any position they want to sleep in and just let the machine handle it.

It is quite common for OSA to be worse when we sleep on our backs or even in REM stage sleep.
For people with essentially a really low AHI on their side like you....if you could stay on your side all night then you probably don't even need cpap unless you are like me and your OSA is worse in REM and we have no control over REM.
We don't always have control over sleeping position either. We might start out on our sides but during the night we change positions and can end up on our backs despite extra effort to stay on our side.

jcs wrote: ↑

Wed Jul 31, 2019 8:23 am

What determines the optimal pressure? Do the doctors just shoot for an AHI below a certain threshold and call it good?

I don't know...you would need to ask your doctor what criteria they might use but generally it is AHI below 5. They don't always factor in the other stuff that isn't easily measured like how many hours of sleep we get or is there some fragmented sleep messing with us also.

I personally like the AHI to be a little lower PLUS I always factor in sleep quality because without decent sleep quality it doesn't really matter how low that AHI might be in terms of how we might feel the next day.
Numbers by themselves aren't the end all be all goal.

I look at 3 things...
AHI
how many hours I slept
did I wake often during those hours I slept.

For me..the AHI is the least important because if I only get 4 1/2 hours of sleep and those 4 hours are fragmented with a lot of wake ups....I am going to feel like crap even if the AHI is 0.0.

It wouldn’t be surprising to me if the numbers bounced around some. If you had fewer wake-ups last night, that’s definitely a good thing. After a few more nights of data, you might be able to do some fine-tuning.

About leaks: you could try taping your mouth and see whether that reduces the leakage. Somnifix strips are pricey but gentle and effective; many people also have good luck with multiple strips of micropore tape.