Need some advice/assistance -- New CPAP user and frustrated.

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
thecodemonk
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Need some advice/assistance -- New CPAP user and frustrated.

Post by thecodemonk » Wed Jul 30, 2014 12:06 pm

I posted this on Reddit too. As an IT guy, I hang out there. But after reading posts there, some people directed others to this place so I decided to post it here too..

So 2 weeks ago I was put on a CPAP machine. They delivered a Icon Auto+. They told me the pressure was set to 5 to 20. I haven't slept since I started using this thing. I wake up 4 or 5 times during the night not breathing. I wake up, noticed I'm not breathing, and then breathe in. Shortly after I fall back asleep and it's back to waking up again.

So I kept up with it, but called my equipment provider a couple of times about still waking up. One thing I notice is that when I stop breathing, the pressure of the machine never changes. The provider confirmed that it's not changing on the reports they get, but they concluded that therefore it must be working fine...

I told them that I don't think it's working and they decided to up my pressure to 7. That night I woke up to some very strange noises every time I took a breathe. I took the mask off slightly and put it back on and the noises stopped.

I tried a couple more nights, but I wake up quite a few times feeling like I can't breathe still.

This last round of this, I woke up and felt like I couldn't breathe in at all. The pressure seemed really really low. I opened my mouth and there was definitely some pressure, but it felt like it was almost less than when I started at the 5.

One thing I noticed is that when I had my study done and they strapped their machine to me, if I stopped breathing, I could feel the machine increase pressure and force me to breathe. This machine is not doing that, at all. Even if I intentionally stop breathing, pressure never changes.

I called the provider and told them all this and they suggested a full face mask and said I'm just opening my mouth at night... I've had to tell them 3 times now that I'm not doing that. When I wake up, my mouth is closed and I'm just not breathing. I started to get a little mad and flat out told them that this thing is not working right. They relented and said they would send me a replacement.

I tried the new machine last night and it's no different. I used the nasal pillow last night, so tonight I'll try the Eson. But I was up at least 5 or 6 times feeling like I just haven't been getting enough air, and it felt like I had to inhale slightly harder than normal in order to breathe.

Maybe it's all in my head? I don't know... I just know I am almost more tired now than when I was not using one of these things.

Any suggestions on what I should do?

tmr
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Re: Need some advice/assistance -- New CPAP user and frustrated.

Post by tmr » Wed Jul 30, 2014 1:18 pm

thecodemonk wrote:it felt like I had to inhale slightly harder than normal in order to breathe.
Could it be that cpap is causing you nasal congestion?

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Janknitz
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Re: Need some advice/assistance -- New CPAP user and frustrated.

Post by Janknitz » Wed Jul 30, 2014 1:25 pm

The APAP machine is NOT a ventilator. It will NOT make you breathe. All it does is create a column of air that keeps your airway splinted open. If you are truly not breathing, then you don't have a "run of the mill" obstructive sleep apnea that can be effectively treated with an APAP or CPAP machine. You need to discuss that with your doctor.

BUT, before you run and call 911, consider that it may be something else. You may feel like you're not getting enough air. There can be a couple of reasons for this:
1. The machine has a "ramp" setting. The purpose of a ramp setting is to keep the pressure low at first, under the theory that it's easier to fall asleep at a lower pressure. Once you are asleep, the pressure can go up as needed. Most of us feel like we are suffocating at a low pressure of 4 or 5 and turn off the ramp. It's really not needed when you have a "wide open" pressure setting of 5 to 20 anyway, since the machine will only go up for apneas in the first place.
2. When there's a wide open pressure setting like 5 to 20, the pressure hangs out at 5 UNTIL you start having apneas. Then it begins to climb, but SLOWLY. There's not an immediate response. It sends some test pressure pulses to see if there's a leak, and if not, it slowly raises the pressure until the apneas stop. But therein lies the problem. It meanders up to deal with the apneas, but your apneas may INCREASE until the pressure gets high enough, making the pressure climb ever higher. With a narrower range of settings, the machine has less "distance" to go to cover the apnea, and it happens faster, with fewer apneas.

Since you're a data driven-guy, do you have access to your data? There is a way on the Icon machines, but not as easily as for ResMed and Philips Respironics autos which both have easily accessible wave form data so you can see for yourself what may be happening. Hopefully one of our resident software experts will weigh in on whether you can get such data from the Icon and how.
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Pugsy
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Re: Need some advice/assistance -- New CPAP user and frustrated.

Post by Pugsy » Wed Jul 30, 2014 1:33 pm

SleepyHead software works well enough with the Icon + Auto to give enough data to start evaluation. It's not perfect but the main important data points are accurate.
Links in my signature line.
InfoSmart software can also be found if you know where to look. Send me a private message if you want to look. Windows only though. No Mac version.

No auto adjusting pressure machine will increase the pressure as a response to your holding your breath on purpose.
They are designed to respond to obstruction of airflow caused by airway tissues and that can't be faked while awake.

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robysue
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Re: Need some advice/assistance -- New CPAP user and frustrated.

Post by robysue » Wed Jul 30, 2014 1:52 pm

thecodemonk wrote: So I kept up with it, but called my equipment provider a couple of times about still waking up. One thing I notice is that when I stop breathing, the pressure of the machine never changes. The provider confirmed that it's not changing on the reports they get, but they concluded that therefore it must be working fine...
You need to learn how to get into the clinician's menu and check the therapeutic settings. If the machine is set to CPAP mode, then it will not change pressure. Even if the machine is set to APAP mode, it will only change pressure under certain circumstances. And it will typically not respond to an isolated event. And if it decides to increase the pressure, it will wait until the current event is over before it increases the pressure. That is how the machine is designed to work.
One thing I noticed is that when I had my study done and they strapped their machine to me, if I stopped breathing, I could feel the machine increase pressure and force me to breathe. This machine is not doing that, at all. Even if I intentionally stop breathing, pressure never changes.
During the titration study, there was a human being watching the wave flow data. And that human being made manual adjustments to the pressure when it was warranted.
I told them that I don't think it's working and they decided to up my pressure to 7. That night I woke up to some very strange noises every time I took a breathe. I took the mask off slightly and put it back on and the noises stopped.
It sounds like you woke up to so-called "face farts"---i.e. the seal around the mask cushion developed a small leak which was making noises when you were inhaling. Pulling the mask off and letting it settle back onto your face resealed the mask and fixed the small leak. Hence no more noises.
I tried a couple more nights, but I wake up quite a few times feeling like I can't breathe still.
People say "I can't breathe" when they mean one of two things:

1) They feel air hungry when trying to take a (deep) inhalation: In other words, it feels as though there's not enough air coming through the mask to breathe properly.

2) They feel as though they cannot fully exhale against the pressure: In other wores, it feels as though there is too much air coming through the mask to breathe properly.

So which of these two better describes your particular situation?
This last round of this, I woke up and felt like I couldn't breathe in at all. The pressure seemed really really low. I opened my mouth and there was definitely some pressure, but it felt like it was almost less than when I started at the 5.
We do get used to the pressure during the night, and when we wake up, it's not uncommon to feel as though there's no pressure or air. Many people routinely do open their mouth or feel around the exhalation vents simply to reassure themselves that the power didn't go off.
I called the provider and told them all this and they suggested a full face mask and said I'm just opening my mouth at night... I've had to tell them 3 times now that I'm not doing that. When I wake up, my mouth is closed and I'm just not breathing. I started to get a little mad and flat out told them that this thing is not working right. They relented and said they would send me a replacement.
First, the DME's response is a common response: Lots of DMEs blame lots of newbie problems on mouth breathing and suggest a full face mask.

But: Lots of folks do indeed have serious mouth breathing problems that they are unaware of when they're sound asleep.

So it's worth asking: What do your leak numbers look like and have you downloaded the data into SleepyHead (which does work with the Icon+ now)? Unless you know what your leak data looks like, you can't immediately dismiss mouth breathing. However, quickly looking at the leak data will quickly either confirm that you have no mouth breathing problem OR indicate that you do.
I tried the new machine last night and it's no different. I used the nasal pillow last night, so tonight I'll try the Eson. But I was up at least 5 or 6 times feeling like I just haven't been getting enough air, and it felt like I had to inhale slightly harder than normal in order to breathe.
This does suggest that you are uncomfortable when the pressure is extremely low. There are three things to consider doing:

1) If Sensawake is turned ON, you may be more comfortable turning Sensawake OFF. Sensawake immediately lowers the pressure (all the way to 4 or 5 if I recall correctly) whenever the machine thinks you might be awake. The idea is to allow the user to get back to sleep without being bothered by a hurricane wind caused by their full pressure setting. But if the Sensawake pressure is really, really low AND you're not bothered by your full pressure, then Sensawake can indeed trigger feelings of "there's not enough air coming in through the mask to breathe comfortably."

2) If you are using the ramp feature, you may be more comfortable turning the ramp OFF.

3) You may be more comfortable with a slightly higher pressure setting if you are using CPAP mode or a slightly higher minimum pressure setting if you are using APAP mode.

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Zeecat
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Re: Need some advice/assistance -- New CPAP user and frustrated.

Post by Zeecat » Wed Jul 30, 2014 3:46 pm

Which nasal pillows are you using? I also have the Icon and have experienced the feeling of not being able to breathe. For me it's been congestion for the most part. I do wake up feeling like I have to work harder to breathe, for me this feeling was worse with the nasal pillows. I use a nasal mask and insist I don't open my mouth, yet my husband has spotted me with my mouth open twice since I stared this a couple of months ago. Do install Sleepyhead, I've been able to get good information from my data with it. I still wake up often but when I am sleeping, I think I'm sleeping better. Still tired, but it all takes time. I was ready to give up a couple of days ago.

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thecodemonk
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Re: Need some advice/assistance -- New CPAP user and frustrated.

Post by thecodemonk » Wed Jul 30, 2014 7:36 pm

tmr wrote:Could it be that cpap is causing you nasal congestion?
I don't think so. If I take the mask off, I don't find it hard to breathe. It's hard to tell with the mask on, because of the pressure when I exhale, but with the mask off, everything seems normal.
Janknitz wrote: 2. When there's a wide open pressure setting like 5 to 20, the pressure hangs out at 5 UNTIL you start having apneas. Then it begins to climb, but SLOWLY. There's not an immediate response. It sends some test pressure pulses to see if there's a leak, and if not, it slowly raises the pressure until the apneas stop. But therein lies the problem. It meanders up to deal with the apneas, but your apneas may INCREASE until the pressure gets high enough, making the pressure climb ever higher. With a narrower range of settings, the machine has less "distance" to go to cover the apnea, and it happens faster, with fewer apneas.
Well, that makes more sense then. Why wouldn't the DME explain this to me when I asked them what was happening? Not once in 3 of the times of telling them, also very clearly that I had no idea if I was right or not, that I thought it wasn't working right, they never once explained that it DOESN'T really work that way? Now I trust them even less.. lol
Zeecat wrote:Which nasal pillows are you using? I also have the Icon and have experienced the feeling of not being able to breathe. For me it's been congestion for the most part. I do wake up feeling like I have to work harder to breathe, for me this feeling was worse with the nasal pillows. I use a nasal mask and insist I don't open my mouth, yet my husband has spotted me with my mouth open twice since I stared this a couple of months ago. Do install Sleepyhead, I've been able to get good information from my data with it. I still wake up often but when I am sleeping, I think I'm sleeping better. Still tired, but it all takes time. I was ready to give up a couple of days ago.
I am using the F&P ones. I don't really know models or anything yet. I started looking around on Amazon last night at different masks. I'm not shy from buying something there that my DME won't sell me...
robysue wrote:People say "I can't breathe" when they mean one of two things:

1) They feel air hungry when trying to take a (deep) inhalation: In other words, it feels as though there's not enough air coming through the mask to breathe properly.

2) They feel as though they cannot fully exhale against the pressure: In other wores, it feels as though there is too much air coming through the mask to breathe properly.

So which of these two better describes your particular situation?
Definitely #1. I can exhale just fine, every time I wake up I feel as though there isn't enough air coming in. My wife thinks it's the humidity in the air. I increased it to 4 because the DME suggested that to solve the problem of feeling like I can't breathe. My wife knows I hate humid air, so she thinks that's it. I don't want to lower it because my sinus's dry out really, really easy and the last thing I want is bloody noses at work.
robysue wrote:1) If Sensawake is turned ON, you may be more comfortable turning Sensawake OFF. Sensawake immediately lowers the pressure (all the way to 4 or 5 if I recall correctly) whenever the machine thinks you might be awake. The idea is to allow the user to get back to sleep without being bothered by a hurricane wind caused by their full pressure setting. But if the Sensawake pressure is really, really low AND you're not bothered by your full pressure, then Sensawake can indeed trigger feelings of "there's not enough air coming in through the mask to breathe comfortably."

2) If you are using the ramp feature, you may be more comfortable turning the ramp OFF.

3) You may be more comfortable with a slightly higher pressure setting if you are using CPAP mode or a slightly higher minimum pressure setting if you are using APAP mode.
I found out how to get into the clinician's menu. I'm going through the machine renting phase right now, so I'm really leary of changing anything, however if I continue on this road right now it won't matter much because I'm ready to just ship them back the machine anyway.

I downloaded SleepyHead and I'm not really sure what I am looking at just yet. I can print the graphs out in a PDF if anyone is interested in helping me read it.. But the things that kind of stand out to me:

Hypopnea - 3 Events
Obstructive Apnea - 7 events
SensAwake - 14 events

It says PAP Mode is APAP.

As I'm sitting here looking.. I see a Flow Limitation, then shortly after that a OA event and my mask pressure went from 7 to 8.

During the Hypopnea events it got as high as 9.

Maybe I need to just ditch the nasal pillow and try the Eson..

How do I check the data to tell if I am breathing through my mouth?

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Zeecat
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Re: Need some advice/assistance -- New CPAP user and frustrated.

Post by Zeecat » Wed Jul 30, 2014 7:49 pm

I'm really new at this as well, but I think the leak data can tell you some about whether you breathe through your mouth?

Can you post a screenshot of your SleepyHead data? I've seen the guru's here pick data apart and translate it into English a few times.

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thecodemonk
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Re: Need some advice/assistance -- New CPAP user and frustrated.

Post by thecodemonk » Wed Jul 30, 2014 8:06 pm

I uploaded a PDF to google drive here.

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Zeecat
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Re: Need some advice/assistance -- New CPAP user and frustrated.

Post by Zeecat » Wed Jul 30, 2014 8:34 pm

Likely not much help, but your leak data looks similar to mine (seen in another post viewtopic/t99512/SleepyHead-Question.html). If it were me I'd try the nasal mask for a few nights (I hate the headgear but I've at least been able to continue using it with a nasal mask). I find it lessens the feeling of not being able to breathe, but that could just be me. The whole process is so personalized yet they make masks as though an entire population will fit into a few sizes!

I started using saline spray to help avoid drying out when I turned my humidity down. Many here recommend sinus rinses as well.

I wish I could be more help. Don't give up and send it back. I hear it's worth it once you find your stride

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Pugsy
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Re: Need some advice/assistance -- New CPAP user and frustrated.

Post by Pugsy » Wed Jul 30, 2014 8:37 pm

If you are breathing through your mouth it sure isn't much and below large leak territory where any leaking (no matter what the cause) could negatively impact therapy. Large leak territory is 60 L/min on the F & P Icons.
Look at the leak line at 6 AM. See that plateau increased leak? That may be a mouth leak but it's not huge and still well within the machine's ability to compensate.
There's no way to tell with 100% certainty though. The machine just reports leaks but it can't tell from where.

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thecodemonk
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Re: Need some advice/assistance -- New CPAP user and frustrated.

Post by thecodemonk » Wed Jul 30, 2014 8:44 pm

Zeecat wrote:I started using saline spray to help avoid drying out when I turned my humidity down. Many here recommend sinus rinses as well.
I just saw someone saying they tried saline rinses before bed. I stopped doing those a few months back. I think I will start doing it again and see if that helps. I always breathe better after doing that.
Zeecat wrote:I wish I could be more help. Don't give up and send it back. I hear it's worth it once you find your stride
Don't worry, this advice is helpful enough.
Pugsy wrote:If you are breathing through your mouth it sure isn't much and below large leak territory where any leaking (no matter what the cause) could negatively impact therapy. Large leak territory is 60 L/min on the F & P Icons.
Look at the leak line at 6 AM. See that plateau increased leak? That may be a mouth leak but it's not huge and still well within the machine's ability to compensate.
There's no way to tell with 100% certainty though. The machine just reports leaks but it can't tell from where.
Thank you for taking a look. I was pretty sure it wasn't happening. That 6am time was one. I woke up at that time and tried to yawn.

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Re: Need some advice/assistance -- New CPAP user and frustrated.

Post by robysue » Wed Jul 30, 2014 10:04 pm

thecodemonk wrote:
robysue wrote:1) If Sensawake is turned ON, you may be more comfortable turning Sensawake OFF. Sensawake immediately lowers the pressure (all the way to 4 or 5 if I recall correctly) whenever the machine thinks you might be awake. The idea is to allow the user to get back to sleep without being bothered by a hurricane wind caused by their full pressure setting. But if the Sensawake pressure is really, really low AND you're not bothered by your full pressure, then Sensawake can indeed trigger feelings of "there's not enough air coming in through the mask to breathe comfortably."

2) If you are using the ramp feature, you may be more comfortable turning the ramp OFF.

3) You may be more comfortable with a slightly higher pressure setting if you are using CPAP mode or a slightly higher minimum pressure setting if you are using APAP mode.
I found out how to get into the clinician's menu. I'm going through the machine renting phase right now, so I'm really leary of changing anything, however if I continue on this road right now it won't matter much because I'm ready to just ship them back the machine anyway.

I downloaded SleepyHead and I'm not really sure what I am looking at just yet. I can print the graphs out in a PDF if anyone is interested in helping me read it.. But the things that kind of stand out to me:

Hypopnea - 3 Events
Obstructive Apnea - 7 events
SensAwake - 14 events

It says PAP Mode is APAP.
If you are reluctant to change the Sensawake settings during the rental period, I'd suggest calling the DME and tell them that the Sensawake is bothering you because when the Sensawake lowers the pressure you feel like you can't inhale comfortably because it feels like there's not enough air coming through the mask.
Maybe I need to just ditch the nasal pillow and try the Eson..
Nasal pillows are not for everybody. My hubby hates them, but loves his Eson nasal mask. On the other hand I prefer my nasal pillows over a nasal mask any night.

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