I'm Genuinely Lost - Any Advice Welcome

[Punisher868]

Hi,

I have tried to be respectful and read through these forums as thoroughly as I can and yet I still find myself at a loss trying to figure out where to go from here. Long Story Short - After years of troubleshooting they finally determined that I have severe Apnea (Sleep Study showed 96 AHI). After the study was complete the company completely dropped the ball and took MONTHS to get me the results. After receiving the study that same company was responsible to get me my equipment and they are impossible. So, using the study information, which recommended a setting of 10, heated humidification and a Dreamware nasal pillow - M (but they used a dreamwisp in the study). I purchased the Dreamstation, with the humidifer, heated hose, Dreamware Full Face Mask & Dreamware Nasal Pillow.

In spite of my efforts I couldn't find anyone to set up my machine for me so I set up the machine myself. I set up the ramp originally at 30 minutes starting at 5 and max of 12, humidifer at 2. The first few nights I used the full face mask and I slept for 7 to 8 hours and then something changed and I don't know what. On the third or fourth night I started to struggle exhaling and felt like I was suffocating. It felt like I couldn't evacuate my lungs enough NOR could I get enough oxygen in. It took me several "ramp" presses before I could fall asleep and then 60 to 90 minutes later I would wake up struggling to breathe. After this first wake up I couldn't get back to sleep and was painfully aware of the difficulty breathing. After doing some research I turned on the A-Flex Setting and tried settings 1 thru 3 over a couple days - same problem. Then I did some research and thought maybe C-Flex was the ticket so I did that and tried settings 1 thru 3 over a couple days - no relief. Then I read about the humidity maybe being a factor so I tried that on various levels over multiple days - no relief. Then I thought maybe the full face mask was the problem as it was such a small place for me to breathe in and out of so I switched to the nasal pillows (M) and repeated altering the settings to see what might work. (Cflex @ 3, Aflex @3, Humidity adjustments as well). Then I thought maybe, since I don't love breathing out of my nose, I started taking hot showers before bed and using a nasal spray to open my airways.

Now I am wondering if I should try the Dreamwisp like they used in the study or if maybe I should just reset the machine and start back from square one. Maybe I am missing a setting or have somehow screwed up a key setting somewhere. AT this point I am getting 3 to 4 hours of sleep on the machine and equal that time fidgeting with the mask and not sleeping. I am so frustrated that I am borderline wanting to just abandon the CPAP but I know better. If anyone has any suggestions on where to go from here I am willing to try anything to figure this out. Note -If I missed some important setting details you need to know please let me know and I updated my profile to list my equipment) .

[Julie]

Hi - I suggest raising your min. pressure (the one that does the job vs the max which you could leave anywhere north of 15) by a couple of cms to see if that helps. I'd also try not using (or using only at a low setting) the humidifier in case it's causing congestion if you already live in a relatively humid environment and don't need it. I would scrap the ramp altogether as your setting is (or will be) so low as to not matter and you're depriving yourself for 30 mins of full therapy so far.

[LSAT]

Turn the ramp off...Set Minimum to 8 and maximum to 20

[Punisher868]

Interesting. I thought the ramp was designed to ease you into the higher pressure so that while you were falling asleep, exhaling came up against less resistance. I assumed that because I was waking up in the middle of the night, post ramp, that my issues would be more around the higher pressure as opposed to the lower.

I will make both the suggested changes in regards to the humidity and the ramp.

[LSAT]

Interesting. I thought the ramp was designed to ease you into the higher pressure so that while you were falling asleep, exhaling came up against less resistance. I assumed that because I was waking up in the middle of the night, post ramp, that my issues would be more around the higher pressure as opposed to the lower.

I will make both the suggested changes in regards to the humidity and the ramp.

That's right...but..you said your ramp starts at 5 with max of 12...I think you mean that your minimum pressure is 5 with a max of 12. With ramp starting at 4 you don't have to "ease" into the minimum pressure of 5.......(Unless you have your numbers messed up). If the sleep study recommended 10, then you should be at a minimum of 8 and the maximum wide open at 20.

[SDBud]

Interesting. I thought the ramp was designed to ease you into the higher pressure so that while you were falling asleep, exhaling came up against less resistance. I assumed that because I was waking up in the middle of the night, post ramp, that my issues would be more around the higher pressure as opposed to the lower.

I will make both the suggested changes in regards to the humidity and the ramp.

Yes, ramp CAN be helpful for some, but it is also not fun for others, who feel better getting to the therapy pressure right away. I used the ramp function for about 8 months, then decided to skip it, and had no problem at all that way. When I DID use it, I felt slightly stifled at 5 as a start, and went to 6, which felt better. But no ramp has been the best for me. Worth a try at least for you. You can always go back very easily.

Same with the therapy level. You can make small changes, then reverse them if they aren't helping, but DON'T expect perfect results after a single night, give things a chance to get settled, a week or even a bit longer will be best.

[Miss Emerita]

It’s great you are taking the reins in your own hands and treating your apnea, and you have an experimental spirit that I’m sure will serve you well.

In order to see whether they could help figure out the problem you’re having, it’d be very helpful if you would download the Oscar software and then post a daily chart or two—maybe one from the beginning, when it seemed to be going pretty well, and one recent one.

Oscar is here: https://www.sleepfiles.com/OSCAR/

Before you take a screenshot, best to turn off the calendar and the pie chart on the left so that important information will be visible. And please stack the graphs this way:

Events
Flow rate
Pressure
Leaks
Snores.

Let us know if you have any questions about how to do this.

[zoocrewphoto]

Interesting. I thought the ramp was designed to ease you into the higher pressure so that while you were falling asleep, exhaling came up against less resistance. I assumed that because I was waking up in the middle of the night, post ramp, that my issues would be more around the higher pressure as opposed to the lower.

I will make both the suggested changes in regards to the humidity and the ramp.

We can help you more once you have Oscar and can upload some graphs from a current night. Right now, we are doing a lot of guessing.

But, a couple things that stand out to me, You mentioned " and then 60 to 90 minutes later I would wake up struggling to breathe." That sounds like apnea events are waking you up. You noticed the higher pressure because the machine went up to try to prevent the events. But it probably needs to go past 12 to prevent events. When you are new to cpap, it is easy to assume the higher pressure woke you up when it was actually the apnea events that woke you up. Most sleep cycles are about 90 minutes, and many people are worse during REM sleep, so I suspect your pressure needs go up when you get into REM sleep.

As far as feeling like you are suffocating. Is it when you first start up the machine? A lot of people get used to the lower pressure pretty fast and then it doesn't feel like enough.

Please get Oscar and post some graphs. I suspect your minimum isn't low enough to prevent most events, and your machine may need to go higher than the 12 to prevent events when you are in REM or on your back (or both). CPAP takes some getting used to, but it will all feel more comfortable with some practice. By the second week, I was waking up wondering if my machine was even on. I still check the exhaust sometimes to make sure it is on. (And my pressure is 11-17).

[Wulfman...]

Hi,

I have tried to be respectful and read through these forums as thoroughly as I can and yet I still find myself at a loss trying to figure out where to go from here. Long Story Short - After years of troubleshooting they finally determined that I have severe Apnea (Sleep Study showed 96 AHI). After the study was complete the company completely dropped the ball and took MONTHS to get me the results. After receiving the study that same company was responsible to get me my equipment and they are impossible. So, using the study information, which recommended a setting of 10, heated humidification and a Dreamware nasal pillow - M (but they used a dreamwisp in the study). I purchased the Dreamstation, with the humidifer, heated hose, Dreamware Full Face Mask & Dreamware Nasal Pillow.

In spite of my efforts I couldn't find anyone to set up my machine for me so I set up the machine myself. I set up the ramp originally at 30 minutes starting at 5 and max of 12, humidifer at 2. The first few nights I used the full face mask and I slept for 7 to 8 hours and then something changed and I don't know what. On the third or fourth night I started to struggle exhaling and felt like I was suffocating. It felt like I couldn't evacuate my lungs enough NOR could I get enough oxygen in. It took me several "ramp" presses before I could fall asleep and then 60 to 90 minutes later I would wake up struggling to breathe. After this first wake up I couldn't get back to sleep and was painfully aware of the difficulty breathing. After doing some research I turned on the A-Flex Setting and tried settings 1 thru 3 over a couple days - same problem. Then I did some research and thought maybe C-Flex was the ticket so I did that and tried settings 1 thru 3 over a couple days - no relief. Then I read about the humidity maybe being a factor so I tried that on various levels over multiple days - no relief. Then I thought maybe the full face mask was the problem as it was such a small place for me to breathe in and out of so I switched to the nasal pillows (M) and repeated altering the settings to see what might work. (Cflex @ 3, Aflex @3, Humidity adjustments as well). Then I thought maybe, since I don't love breathing out of my nose, I started taking hot showers before bed and using a nasal spray to open my airways.

Now I am wondering if I should try the Dreamwisp like they used in the study or if maybe I should just reset the machine and start back from square one. Maybe I am missing a setting or have somehow screwed up a key setting somewhere. AT this point I am getting 3 to 4 hours of sleep on the machine and equal that time fidgeting with the mask and not sleeping. I am so frustrated that I am borderline wanting to just abandon the CPAP but I know better. If anyone has any suggestions on where to go from here I am willing to try anything to figure this out. Note -If I missed some important setting details you need to know please let me know and I updated my profile to list my equipment) .

Have you tried a straight pressure setting of 10? It doesn't sound like it........so if not, why not?
A pressure of 10 cm is low enough that you probably don't need to use Ramp pressures. Same with the Flex settings.
Humidity settings are pretty individual to the users......some folks do better with very low humidity settings or even "Off" ("Passover") mode.

Are you using software to monitor your therapy? If not, get it.


Den

.

[Punisher868]

I am deeply appreciative of all the replies! Last night wasn't a good sample because apparently I took my mask off at some point and dont recall doing it... twice. Still getting used to the feel of the nasal pillow verse the full mask that I started with. I did turn off the ramp and set the start at 8 (Max 20) which wasn't too bad as a fell asleep. There is a constant stream of air coming out of the port hole the nasal pillow which is sort of distracting - I assume this is ok since is just a wide open hole (Image of the mask I am talking about.)

- I downloaded Oscar so I will pull that data tonight and share.

- I can try turning off the Flex settings but my immediate concern is that the discomfort I feel is on the exhale. Using the nasal pillows the past two nights I find myself having to exhale from my mouth a few times to be able get relief. So I had hoped the Flex settings would make the exhale easier.

BTW - I don't know if I was just so very exhausted during the sleep study but I was only mildly uncomfortable to have the mask when they put it on. No idea why it's so significantly worse at home. I swear there must be a setting I am missing or something.

Thanks again for all your help. I will upload some data next.

[Pugsy]

Flex is there if you feel like you need it.
Try all the settings including off and just choose the one that simply feels more natural to you no matter what the number.

What size nasal pillow are you using?

Yes...all masks have either one or two vent holes depending on the mask. It's normal and needed so that the excess carbon dioxide that we exhale get blown out of the mask and into the room so that we don't rebreathe it.

[Punisher868]

I am using using Medium size.

[Pugsy]

If you have the large size nasal pillow you might give it a try and see if it makes any difference in terms of comfort when exhaling.
Sometimes people find if they go up a size that it moves more air and is more comfortable.

[chunkyfrog]

If you have the large size nasal pillow you might give it a try and see if it makes any difference in terms of comfort when exhaling.
Sometimes people find if they go up a size that it moves more air and is more comfortable.

Maybe that is why dogs love sticking their faces out the car window.
It feels good.

[Punisher868]

Well I am cautiously optimistic and deeply grateful to everyone here. I changed the mask (4th mask) to one that was not a Dreamwear style. Instead it covers my nose and the tube connects right to the nose piece. I went up a size to the L to see if that made a difference and I turned off the ramp and let it start at 8 with a cap at 20. Last night I got 7.5 hours of sleep! The mask took some getting used to and I don't love the hose being in the front BUT at no point was my breathing difficult and I never felt like I was suffocating. I know its only one night but its double the amount of sleep I was getting before and it feels like there is light at the end of the tunnel.

I will still upload the data you guys requested but I wanted to give a grateful update.