3 1/2 Months In & Could Use Some Help

[KayakKid]

I’m brand new to this board and would greatly appreciate any help that can be given. I’ve been on therapy since Jan 2016 and unfortunately have not woken up one morning yet feeling “refreshed” since I’ve been on the machine. I’m a numbers guy, but am having some trouble getting a handle on some of the terminology and what it all means so please forgive me if I am not crystal clear in my explanation. Some of this information seems so overwhelming. I know this post is long and I can post SleepyHead screenshots subsequently if someone thinks it will help.

I have had trouble getting to sleep and staying asleep for the past 3 years. Originally thought it was due to a divorce I was going through but it didn’t correct itself after the divorce was over. I have been on and off Ambien (10mg) during that time and lately cannot get to sleep and stay asleep without it. I’ve tried Melatonin or taking nothing at all and end up staring at the ceiling til about 4AM when I finally pass out from exhaustion. Now I am at the point, for the past week or so, where I am wide awake at night and am completely exhausted in the morning, even after 8-9 hours of Ambien induced sleep. For the first time in a long time I took a nap a few days ago during the day because I could not keep my eyes open any longer. I slept almost 3 hours with the mask on. I am currently averaging about 2 hours a night with the mask, which I know is not good. I either wake up during the night feeling upset/angry and take the mask off or I am subconsciously taking it off during the night. Sometimes when I do wakeup to go to the bathroom I don’t put it on again feeling that if I did I would not be able to fall back asleep. There have been nights where I have not used the machine at all (I know, not good) because I have needed to get somewhat of a good night’s sleep to be awake and alert for work the next day.

My sleep study came back with a diagnosis of OSA and an AHI of 81. Due to insurance issues I could not go back for the titration study and was put on the ResMed AirSense 10 AutoSet with an original range of 4cm-20cm with a Mirage Quattro FFM (size Large). I am and always have been a mouth breather and the DME thought this was the best starting point. I experienced frequent wakeups during the night along with rainout and claustrophobic feelings with the mask and ended up taking advantage of my DME’s 30 day mask replacement policy and exchanging it for an F&P Eson Nasal Mask along with raising the starting pressure from 4cm to 7cm thinking the pressure was too low.

I tried the Eson for almost a month and experienced major leaks that my DME concluded to be caused by opening my mouth. Before the 30 days were up we were on to mask #3, which was the Mirage Quattro FFM again only this time in a size Medium. At this time, after a lengthy discussion with my DME, who felt that the pressure fluctuations throughout the night could be causing my wakeups, we switched to a straight 11cm with a ramp of 15 minutes at 4cm. The DME looked at my historicals and concluded that 11cm was where I was at for the majority of the time when I had the mask on.

Unfortunately I experienced many of the same occurences with the smaller Mirage and switched out once again. I am now using the ResMed Airfit F10 (size large) This mask seems to be the best fit and most comfortable, but I still can’t get anywhere near 4 hours a night. I’ve only hit that mark a handful of times.

I am trying to be persistent and continue on, but nothing seems to be working. My next step is I’m going to see a pulmonologist/sleep medicine doctor next week to try to pull everything together and make sense of this all. Any advice anyone on here may have would be greatly appreciated. Thank you.

[ChicagoGranny]

The DME looked at my historicals and concluded that 11cm was where I was at for the majority of the time when I had the mask on.

Most of the regulars here manage their own machine settings. I will never let a sleep doctor touch my machine, let alone a DME.

Post a Sleepyhead screenshot of a typical night and let's see if your machine settings appear to be optimized.

[ChicagoGranny]

Here are some instruction for posting screenshots of SH.

On the left side turn off the calendar by clicking on the triangle by the date.
Also the pie chart doesn't give us very much info so you can turn it off by going to File - Preferences -Appearance - Uncheck Show event break down pie chart
That allows us to see the machine details on the left.

The graphs that are usually helpful are:
1. Event Flags
2. Flow Rate
3. Pressure (not mask pressure)
4. Leak
5. Flow Limit (only with Resmed machine)
Put your graph in that order by grabbing, by the labels, with your mouse and dragging it where you want it.
Now grab the line between the graphs and resize them until you get them in one screenshot.

Take a screen shot after you organize your graphs.
F10 will close the right sidebar ( or click file - view - uncheck right side bar).
F11 ( or click file - view - check fullscreen toggle) on your keyboard before you take your screenshot and it makes it full screen with no ID info.
Take a screenshot by pushing F12 or under View - click on Screenshot
Screenshots are found on my computer under Documents - SleepyHeadData-Testing - Screenshots

Then at Imgur you have to sign up for an account then sign in. upload your pic.
Click on the triangle by your ID in the upper right corner and a menu will drop down.
Choose Images this will take you to a screen with your uploaded images on it. Click on the image you want.
Click on Large thumbnail then copy the Linked BB code into your reply. Here is an uploaded screenshot for example.

[KayakKid]

ChicagoGranny,

Thanks for the advice and the screenshot instructions.

I have the instructions from my DME on how to change my CPAP settings. No more waiting for my doctor to write me a script.

Here are my last 3 night's screenshots. Any advice would be greatly appreciated.

[Julie]

I personally would switch back to Apap and experiment a bit, allowing a slightly higher 'high' pressure setting (eg 15?)to see what occurs. There are many factors that can contribute to waking up overnight, and while the DME's idea was not invalid, I would want to look into other things before consigning myself this soon to only Cpap, esp. as your results consistently show the pressure at or (wanting to go) beyond 11.

[Cardsfan]

Can you post a sleepyhead data shot from when you had it set at 7-20 apap? I would try setting it at apap 9-13 for a few nights and see where the pressure goes. Finding the perfect pressure is educated trial and error.
And BTW, going from AHI 81 to below 5 is a huge improvement in your sleep quality. Stick with it.

[KayakKid]

I personally would switch back to Apap and experiment a bit, allowing a slightly higher 'high' pressure setting (eg 15?)to see what occurs. There are many factors that can contribute to waking up overnight, and while the DME's idea was not invalid, I would want to look into other things before consigning myself this soon to only Cpap, esp. as your results consistently show the pressure at or (wanting to go) beyond 11.

Thanks Julie. I could try going back to a 4cm-15cm and see what happens. You said that results show that my pressure "wants" to go go beyond 11. What part of the data would show that?

[KayakKid]

Can you post a sleepyhead data shot from when you had it set at 7-20 apap? I would try setting it at apap 9-13 for a few nights and see where the pressure goes. Finding the perfect pressure is educated trial and error.
And BTW, going from AHI 81 to below 5 is a huge improvement in your sleep quality. Stick with it.

Thanks Cardsfan. Believe me, I realize the AHI improvement is huge. I just want to feel those results in the morning when I wake up.

Here is one of the last ones on APap

[Julie]

Hi - the green lines of pressure that move up to 11 and because they can't go higher on the graph, sit parallel to the top.

I would, however, move the low setting of 4 to at least 6 or 8 for an Apap retest... 4 is hard to breathe at and if events occur higher, cannot catch up to intercede or prepare for new ones at that level. Really not much use!

[KayakKid]

Hi - the green lines of pressure that move up to 11 and because they can't go higher on the graph, sit parallel to the top.

I would, however, move the low setting of 4 to at least 6 or 8 for an Apap retest... 4 is hard to breathe at and if events occur higher, cannot catch up to intercede or prepare for new ones at that level. Really not much use!

Thanks again Julie. I'll give a 7cm-15cm a try for a couple nights and see how I do.

[Cardsfan]

What we are looking at is the pressure graph compared to the events (top) graph. What is the pressure at when you have obstructive events. The minimum apap setting pressure needs to be high enough to prevent hypopnea and apneas.
Also, where it says STATiSTICS, look at the pressure numbers. It shows where the machine (in apap mode) wants to operate at. That helps you adjust your settings.

[KayakKid]

What we are looking at is the pressure graph compared to the events (top) graph. What is the pressure at when you have obstructive events. The minimum apap setting pressure needs to be high enough to prevent hypopnea and apneas.
Also, where it says STATiSTICS, look at the pressure numbers. It shows where the machine (in apap mode) wants to operate at. That helps you adjust your settings.

Got it. Thank you. Hopefully all this data will become less Greek once I get further along into it.

[ChicagoGranny]

At a pressure of 11 (EPR 3) you are getting reasonably good results - low AHI, low FLs, minimal leak.

If I understand you correctly, your big problem is:

I still can’t get anywhere near 4 hours a night. I’ve only hit that mark a handful of times.

So, CPAP is working but you can't sleep? Or you can sleep, just not when wearing the mask?

Here are some questions:

- Are you getting dry mouth at night?

- EPR 3 is the maximum exhalation relief. The machine drops the pressure on exhale. Some people like this, and others find it unsettling. Does the change in pressure on each breath (due to EPR) bother you?

- Please go over this list carefully and think about how well you do with the items on the list:

- Practice good sleep hygiene (Google it and read several sources)
- Eat a good diet
- Have a regular, moderate exercise program
- Try to avoid daytime naps.
- Practice total abstinence of caffeine including sources like chocolate (sigh)
- Review all medicines, vitamins and supplements you are taking to make sure none are interfering with sleep
- Use the bedroom for sleeping (and sex) only, and make sure the bedroom and bed are comfortable.
- Optimize emotional stress in your life
- Use CPAP software, such as the free SleepyHead, to make sure your therapy is optimized
- If you still don't feel or sleep well, make sure you have regular medical checkups to confirm there are no other medical problems.

CG

[KayakKid]

At a pressure of 11 (EPR 3) you are getting reasonably good results - low AHI, low FLs, minimal leak.

If I understand you correctly, your big problem is:

I still can’t get anywhere near 4 hours a night. I’ve only hit that mark a handful of times.

So, CPAP is working but you can't sleep? Or you can sleep, just not when wearing the mask?

I can not sleep with the mask or without the mask without taking Ambien, which I so desperately want to get off of. I have gone without it in the past for as long as six months but now I can not sleep at all without it.

Here are some questions:

- Are you getting dry mouth at night?

No. I think I have the humidity dialed in pretty good at 3.

- EPR 3 is the maximum exhalation relief. The machine drops the pressure on exhale. Some people like this, and others find it unsettling. Does the change in pressure on each breath due to EPR bother you?

I honestly am not sure.

- Please go over this list carefully and think about how well you do with the items on the list:

- Practice good sleep hygiene (Google it and read several sources)
- Eat a good diet
- Have a regular, moderate exercise program
- Try to avoid daytime naps.
- Practice total abstinence of caffeine including sources like chocolate (sigh)
- Review all medicines, vitamins and supplements you are taking to make sure none are interfering with sleep
- Use the bedroom for sleeping (and sex) only, and make sure the bedroom and bed are comfortable.
- Optimize emotional stress in your life
- Use CPAP software, such as the free SleepyHead, to make sure your therapy is optimized
- If you still don't feel or sleep well, make sure you have regular medical checkups to confirm there are no other medical problems.

I have made several of the lifestyle adjustments listed above.
Have recently changed my diet to whole food, plant based.
Exercise has been tough lately with no energy or motivation.
I never nap during the day except for two days ago.
No caffeine after breakfast. If I don't have it then I feel like I have zero energy to try to get through the day.
Will be discussing my meds and supplements with sleep doctor next week. I am on two blood pressure meds (I think as a result of the sleep apnea) that I am guessing may have something to do with my sleeplessness


CG

[ChicagoGranny]

No caffeine after breakfast. If I don't have it then I feel like I have zero energy to try to get through the day.

How much caffeine?

Have recently changed my diet to whole food, plant based.

What do you eat on a typical day?