Where do I go from here?

[dylan91]

February of 2014 I was diagnosed with Sleep Apnea. My test results were

~ 7 hours of sleep
50 minutes of REM
AHI of 11
Arousal index of 30 per hour
Snoring
Mild desaturations

I am a male, 23 years old, 200lbs, 5' 10". Exercise frequently. Take 20mg of Lexapro (SSRI) for mild to moderate anxiety.

My reason for initially getting a sleep study was my snoring. My wife never noticed me gasping for air, however she had to sleep on the opposite end of the house because my snoring was so bad/loud. On a typical day, I would be sleepy, lethargic, and irritable.

Post-sleep study I did a titration (I believe this is what it is called) where I slept at the clinic with a mask. I then received my equipment and was given a pressure setting of "7".

Although it took awhile to get used to, my AHI, measured by machine, eventually leveled out at about 5.5. 3 Months later, in May, I went to a follow up meeting with my pulmonologist who decided to up my pressure to a setting of "8", his goal being to get my AHI down to a 2 or below.

After about 3 weeks, my AHI averaged about 4.5. Still not satisfied with this number and impatient with the process of setting up appointment with pulmonologist, going to appointment with pulmonologist, setting up appointment with medical tech, going to appointment with medical tech, I "expedited" it by adjusting the pressure myself to a "9". For the next 3-4 weeks, I saw marked improvements in my mood despite my AHI only going down to a 3.5.

Feeling greedy wondering how great I might potentially feel if my AHI is down to a 2, I once again upped the pressure to a "10". Unfortunately, the next few nights with my new high pressure, my AHI sky rocketed to all the way up to ~8. I woke up each night with a very dry mouth even though I use a humidifier.


So my question is, what strategy/next steps should I take? Should I be satisfied with an AHI of 3.5 despite my doctor having a goal of 2 and seeing that many of you have AHI's down to even 1? Should I continue to move my pressure up and bite the bullet of wearing a chin strap or using a full face mask? Should I maybe give it a couple more months at a pressure of "9" then test the waters of higher pressure? Should I go back to my pulmonologist and tell him "I've been bad"?

All input is very much appreciated! Thanks for taking the time to read this!

[DoninOrlando]

Are you using a full data machine and software?
Or are the AHI you report coming from the machine's screen?
Do you have any leaks or mouth breathing at pressure of 9?
If you are not having any problems at 9, I would think you could slowly transition to 10.
Not saying you need to. But if you think it helps your therapy, I would try, but more slowly.
Does your machine adjust at .2 or .5 amounts? Increase by the lowest increment your machine allows, and leave it 2 weeks before changing.
You may need to go to a Full face if it causes mouth breathing. But I wouldn't think it would.
If you get small leaks I would try a liner.
It would be helpful if you have full data to watch all the numbers and detailed results as you increase pressure.
It would have been even easier with an Apap to help determine best pressure.
I'm assuming you have a Cpap only machine. If it were Apap I would set it 8-10 or 8-11.
Just my 2 cents. Others will offer more help soon.

[Bill44133]

What is your exact machine? Are you looking at software to tell you what is going on?

[BlackSpinner]

I woke up each night with a very dry mouth even though I use a humidifier.

That means you are mouth breathing and if you use a nasal mask a lot of therapy air is just going out of your mouth.

If you felt better at the lower pressure go back there. Besides AHI there is how you feel.

[robysue]

dylan91,

It would be very useful if you could post some graphical data from a couple of nights of data. We need to see one of your better days and the night where the AHI zoomed up to 8+.

Here's the thing about pressure increases: About 15% of PAPers tend to have some problems with pressure induced central apneas. And when this happens, there's often a pretty sharp line between "pressure low enough to NOT trigger the pressure induced centrals" and "pressure high enough to trigger the pressure induced centrals." And the main "symptom" that this is happening is a sudden spike in the AHI right after a pressure increase, typically with an increase in the number of centrals.

I'm not saying that this is what's happening; I am saying that this is one of many things that MIGHT be happening. And so at this point, I'd be very reluctant to increase the pressure any further and if I were in this situation, I'd lower the pressure back down to 9.0 and leave it there for a week or more. And then I'd start looking at the AHI data for the entire data period as well as the AHI on individual nights ...

[dylan91]

Are you using a full data machine and software?
Or are the AHI you report coming from the machine's screen?
Do you have any leaks or mouth breathing at pressure of 9?
If you are not having any problems at 9, I would think you could slowly transition to 10.
Not saying you need to. But if you think it helps your therapy, I would try, but more slowly.
Does your machine adjust at .2 or .5 amounts? Increase by the lowest increment your machine allows, and leave it 2 weeks before changing.
You may need to go to a Full face if it causes mouth breathing. But I wouldn't think it would.
If you get small leaks I would try a liner.
It would be helpful if you have full data to watch all the numbers and detailed results as you increase pressure.
It would have been even easier with an Apap to help determine best pressure.
I'm assuming you have a Cpap only machine. If it were Apap I would set it 8-10 or 8-11.
Just my 2 cents. Others will offer more help soon.

I am using the information provided by my machine (the screen).
My machine says I have 0 large leaks
I can increase by .5

I am not sure why my machine type is not showing up in my signature. It is a "REMstar Pro C-Flex +".
Right now it is on mode "CPAP", it has a mode named "A Trial". Maybe that is an Apap mode?

What is your exact machine? Are you looking at software to tell you what is going on?

I am not sure why my machine type is not showing up in my signature. It is a "REMstar Pro C-Flex +". The only software I have is "sleepmapper", which simply states my AHI, mask fitting, and hours of use. It doesn't tell me how many apneas/hypopneas I have each individual hour, just an average for the whole night.

That means you are mouth breathing and if you use a nasal mask a lot of therapy air is just going out of your mouth.

If you felt better at the lower pressure go back there. Besides AHI there is how you feel.

What would cause mouth breathing? And should I still shoot for a lower AHI?

[Bill44133]

The SleepyHead software is available for free depending on your machine it will work. Sounds like you just need to optimize your settings and with the software you should
be able to do that.

I wish you well.

[dylan91]

dylan91,

It would be very useful if you could post some graphical data from a couple of nights of data. We need to see one of your better days and the night where the AHI zoomed up to 8+.

Here's the thing about pressure increases: About 15% of PAPers tend to have some problems with pressure induced central apneas. And when this happens, there's often a pretty sharp line between "pressure low enough to NOT trigger the pressure induced centrals" and "pressure high enough to trigger the pressure induced centrals." And the main "symptom" that this is happening is a sudden spike in the AHI right after a pressure increase, typically with an increase in the number of centrals.

I'm not saying that this is what's happening; I am saying that this is one of many things that MIGHT be happening. And so at this point, I'd be very reluctant to increase the pressure any further and if I were in this situation, I'd lower the pressure back down to 9.0 and leave it there for a week or more. And then I'd start looking at the AHI data for the entire data period as well as the AHI on individual nights ...

Where might I get software that would produce graphical data?

[Bill44133]

Depending the type of machine you have whether it will work or not..

here is where the sleepyhead is at: http://sourceforge.net/projects/sleepyhead/files/

[Nick Danger]

A chinstrap has worked well to cut down on my mouth breathing. Dry mouth suggests you are mouth breathing, but the detailed graphs showing leaks will give you more information.

[robysue]

I am using the information provided by my machine (the screen).
My machine says I have 0 large leaks
I can increase by .5

I am not sure why my machine type is not showing up in my signature. It is a "REMstar Pro C-Flex +".
Right now it is on mode "CPAP", it has a mode named "A Trial". Maybe that is an Apap mode?

It sounds like you most likely have a PR System One REMStar 60 Series Pro CPAP Machine machine that has a limited 30-day APAP trial mode. It is not a full time APAP. But the PR System One Pro does record full efficacy data.

You should be able to find your equipment in the pull down list if you look under PR instead of Respironics.

SleepyHead will work with your machine. You can download it (for free) from https://sourceforge.net/projects/sleepyhead/. SleepyHead will show you a lot of very detailed daily data the machine's LCD does NOT show you. With SleepyHead you will be able to see when each event happened, what kind of an event it was, and how long the event lasted. You'll also be able to see exactly what your leak line is doing. The System One's LCD is only going to report a non-negative number if both the following criteria are met:

• At some point or points in the night you have some official Large Leaks. On a PR Series 60, that usually means the total leak rate must be up around 80 L/min for pressures around 10cm
• The total amount of time spent in large leaks is large enough to show up. The LCD reports the percentage of time in Large Leak. If you are using the machine for 7 hours (i.e. 420 minutes) each night, you must have an official Large Leak that lasts at least 1% of the night (4.2 minutes) before it's likely to show up in the 1-day Leak data.

That means you are mouth breathing and if you use a nasal mask a lot of therapy air is just going out of your mouth.

If you felt better at the lower pressure go back there. Besides AHI there is how you feel.

What would cause mouth breathing? And should I still shoot for a lower AHI?

Mouth breathing can be caused by too much pressure. Or it can be caused by things like congestion. Or it can simply be a long standing habit.

The overall goal of PAP therapy is to get the AHI below 5 and keep it there consistently AND to sleep well enough with the machine to actually feel better in the daytime. If the work involved in reducing an acceptable AHI = 3.5 down to an AHI = 1.0 makes it more difficult to sleep comfortably with the machine, you're better off with the slightly higher AHI and better sleep.

[dylan91]

Alright so I got the program and I have uploaded the data. What is the best way for me to convey the necessary information to you guys to make meaning of it? Or do I make sense of it?

[Pugsy]

Screen shot thread viewtopic.php?f=1&t=81072&p=737779#p737779

How to post images of your detailed reports explained in the above thread. Also some examples of what we like to see. Mainly the detailed daily graphs and not so much the plain statistical data.

[library lady]

I am a mouth breather, and I use a full face mask. Most mouth breathers use a full face, as it prevents loss of air that needs to go down your airway... nasal mask won't do that. I started cpap in Feb. '04, and since about mid-April my AHI has, with one exception, consistently been <3, usually registering <2. I rarely spend much time, if any, in large leak territory. You may find it helpful to switch to a FF mask, if you do you may also want to start using mask liners (RemZzzzs or Pad-A-Cheek) as there is greater potential for excess leakage due to the larger footprint of FF masks. I had a hard time controlling leaks until I discovered liners.

While some leakage is intentionally built into each mask to allow for the escape of CO2, excess leakage, especially if in large leak territory, can have a negative impact on therapy. With Sleepyhead, you will be able to discern how much time you spend in LL territory, and you may be able to identify trends.

Good luck, and welcome to the forum!

[dylan91]

Okay so I am having trouble identifying which graph is which - the y axis title isn't showing up.

However, an example:

at a pressure of 9:
Hypopnea ~1
Obstructive ~2.5
Clear airway ~1.3

At a pressure of 10:
Hypopnea ~1.7
Obstructive ~4
Clear Airway ~1.7

I am a mouth breather, and I use a full face mask. Most mouth breathers use a full face, as it prevents loss of air that needs to go down your airway... nasal mask won't do that. I started cpap in Feb. '04, and since about mid-April my AHI has, with one exception, consistently been <3, usually registering <2. I rarely spend much time, if any, in large leak territory. You may find it helpful to switch to a FF mask, if you do you may also want to start using mask liners (RemZzzzs or Pad-A-Cheek) as there is greater potential for excess leakage due to the larger footprint of FF masks. I had a hard time controlling leaks until I discovered liners.

While some leakage is intentionally built into each mask to allow for the escape of CO2, excess leakage, especially if in large leak territory, can have a negative impact on therapy. With Sleepyhead, you will be able to discern how much time you spend in LL territory, and you may be able to identify trends.

Good luck, and welcome to the forum!

Yikes, I hope I don't have to use a full face mask