No luck with cpap but want to try again

intemperance · Post by **intemperance** » Fri May 29, 2020 8:59 pm

Hello,

I've been having serious sleep issues for years and it's making my life unbearable. Two years ago I did a sleep study and they told me I had "mild to moderate" sleep apnea with a AHI of 9 i think. I can find the study if it's helpful. But basically during the study I felt like I slept zero but they said I slept 6 hours. I had the EEG but no one mentioned RERA or UARS.

I have a small lower jaw with a serious overbite. I've also been told by some dentist my tongue is large for the size of my lower pallet. I have a deviated septum but can breath out of that nostril when closing the other one.

I wake up almost every night after a few hours. Most of the time with like stomach anxiety. I'll move beds and sometimes fall asleep for a few more hours. Wake up again and then move again until morning. I used my cpap for over a year and honestly my sleep was worse the whole time on it. The doctor said it looked like the cpap cured my apneas so it must be some other issue. That never made sense to me since the data I pulled off the machine never looked great.

Last night I tried setting my machine to 10 with an EPR of 3. I thought I could mimic a bi-level machine that way. I woke up after 3 hours feeling horrible and apparently had a ton of AHI clear airway events. It looks like I get more and more and then I wake up.

It seems like I have the other classic symptoms of UARS ( although I just learned about this two days ago ).

Low blood pressure
wake up with headaches
wake up during the night with anxiety
fuzzy head and memory
extreme daytime fatigue
i often wake up with a dry mouth and throat. ( i've tried taping and jaw straps )
Smaller recessed lower jaw
Wake up with a stuffed nose
I'm skinny
I don't snore
People that have watched me sleep say I don't gasp for air

It's hard to find a doctor that's knowledgeable and wants to help me. Hopefully this forum has some advice. Thanks !

Solomon

I've attached three days from this week

Pugsy · Post by **Pugsy** » Fri May 29, 2020 9:18 pm

Turn EPR off.
Set the machine to auto mode again
Set the minimum to 5 and max to 10...lets see what happens.

If you just have to use EPR to fall asleep set the machine for EPR during ramp only. It is an available option.

Julie · Post by **Julie** » Sat May 30, 2020 5:17 am

And consider whether local humidity is good enough to allow you to lower that setting or even turn it off if not needed.

Sheriff Buford · Post by **Sheriff Buford** » Sat May 30, 2020 7:22 am

Agree with Pugs, except set the max at 20. Leave the settings alone after that and let the machine do what its suppose to do. Looks as tho' around 3 or 4 am is where you have an awful lot of events. Lets see where the machine goes at that time.

Sheriff

Pugsy · Post by **Pugsy** » Sat May 30, 2020 7:37 am

Sheriff Buford wrote: ↑
Sat May 30, 2020 7:22 am
Agree with Pugs, except set the max at 20. Leave the settings alone after that and let the machine do what its suppose to do. Looks as tho' around 3 or 4 am is where you have an awful lot of events. Lets see where the machine goes at that time.

Sheriff

The events shown are primarily central apneas. More pressure won't help those and might make them worse.
That's why I wanted to limit the maximum at least until we see where the pressure wants to go. When the pressure could go to 15...it never even made it to 10. The machine didn't want to go higher but I wanted to eliminate the chance just in case all those centrals were indeed related to pressure. When the pressure was set to 10 fixed...the central count was even higher and more dense. More pressure isn't the fix for this problem.

Those events flagged from 3 to 4 AM....central apneas and not obstructive. More pressure isn't the answer.

Miss Emerita · Post by **Miss Emerita** » Sat May 30, 2020 10:39 am

Intemperance, it could be helpful to see your sleep study. Could you post it, first blanking out any personal information? I'm curious about the makeup of your AHI (CA, OA, H).

intemperance · Post by **intemperance** » Sat May 30, 2020 12:03 pm

Thanks for the replies everyone. I really appreciate your help with this thing.

Last night I tried the suggested 5-10 with no EPR. It was hard to get to sleep and then I woke up at my usual 3am time and couldn't get back to sleep for awhile. Woke up again at 5:30 or so and could not get back to sleep at all with the mask on so I took it off. After a bit slept for a few more hours. Feel totally horrible today.

I have a lot of pain a pressure sore on my septum from the mask. I found it hard to breath against the air pressure to get to sleep and then a lot worse when I woke up during the night.

Attaching my results which show an AHI of 1.16 which is the lowest I think I've ever seen it even after wearing this thing for a year.

I found my sleep study but i"ll need to go through it and redact some personal info and then post it for you as well. I also bought a O2 and pulse meter I can wear at night that should come today. Plan on wearing it tonight and see if it has any helpful data.

Thanks again for any ideas you think that could help me.

Solomon

intemperance · Post by **intemperance** » Sat May 30, 2020 12:41 pm

I've attached my sleep study raw data and here's the conclusion from the doctor

Subjective: He did not estimate his sleep latency, and his estimated total sleep time was 0 hours. He characterized his sleep as did not sleep and much worse than usual.

FINDINGS: Please refer to the attached summary for additional quantitative information.

Study details: Lights off was at 23:34 (usually: Weekday: 00:00 Weekend: 00:00) and lights on 06:29 (6.9 hours in bed).

Sleep and EEG: He slept for 6.1 hours with a normal sleep efficiency of 88%. Sleep latency (5 min) was short and REM sleep latency (101 min) was normal. There was a moderate increase in the percentage of stage N1 sleep (22.4%). The number of arousals and awakenings was within normal limits (15.6/hr). REM sleep was reduced (12.7%).

Respiration: He had 9 obstructive apneas, 1 mixed apnea, 1 central apnea, and 44 hypopneas (apnea-hypopnea index 9.0 overall; 10.8 when supine and 9.0 in REM sleep). Including respiratory events associated with arousals, the respiratory event index was 17.5. Respiratory events were associated with mild oxyhemoglobin desaturations (nadir 89%) from a normal baseline (mean 93.2%). He slept in supine (77%) and lateral (23%) positions. Frequent, mild snoring occurred supine.

Cardiac: Rare ventricular couplets were present. The mean heart rate during sleep was 51 bpm.
Limb movement: There were no periodic limb movements of sleep.

Parasomnia behavior: No parasomnias were noted.

INTERPRETATION: Mild to moderate obstructive sleep apnea, worse in REM sleep, associated with mild oxyhemoglobin desaturations and sleep fragmentation. Paradoxical insomnia was present with the patient reporting no sleep but achieving 6.1 hours of it.

Miss Emerita · Post by **Miss Emerita** » Sat May 30, 2020 4:00 pm

Thanks for posting the sleep study, Solomon. That tells us that you didn't start out with mixed or central apnea; all the CAs you're having are almost certainly treatment-emergent,* especially given the big drop-off after you took Pugsy's advice and turned off the EPR.

The night of your sleep study, you had very few apnea events but an overall respiratory disturbance index of 17.5, due mostly to hypopneas and events in which you had an arousal preceded by either 10 or more seconds of 30-70% drop in flow or a respiratory effort. Setting EPR to 3 was the right general idea: that often helps people resolve hypopneas and flow limitations (though even without EPR, your FLs as scored by ResMed are not that bad). But you paid a price in central apneas.

Your pressure changes during the night in response to flow limitations. Because you have trouble staying asleep, I wonder whether you might like to experiment with eliminating pressure changes. That would be one less thing to potentially kick you out of your sleep cycle.

So if you are in the mood to experiment, and always supposing someone with more knowledge than I have doesn't step in with a caution, I would suggest that you set your min at 6 and your max at 6. I would suggest that you turn off the ramp. That effortful feeling when you were trying to fall asleep was probably due to the ramp pressure being so low.

When you post next, I wonder whether you could clarify this: " I'll move beds and sometimes fall asleep for a few more hours. Wake up again and then move again until morning." Is there a typo somewhere, or are the different beds that you move between?

* What can happen with PAP treatment is that the pressure winds up causing you to wash out more CO2 than usual, especially if you take a few breaths that are deeper than usual. We need CO2 to signal our brains that it is time to breathe. If there isn't enough CO2 to do that, we stop breathing until the CO2 accumulates again and gets us back to taking breaths. If those breaths are deep ones, though, then the whole business starts over again, which is why there can be those nasty patches of one CA after another.

RogerSC · Post by **RogerSC** » Sat May 30, 2020 4:15 pm

On the septum pain, if you're going to use a nasal pillows mask, I'd suggest a mask designed for that, like the ResMed AirFit P10 or Swift FX. Those two masks appear to be currently on sale at cpap.com, with free return insurance.

Also, since you have a low leak level, you could also try loosening the Dreamwear mask up some. You might see a little more leaking, but might get a lot more comfort. But the Dreamwear gets it's best reviews as a nasal mask, less so as a nasal pillow mask.

intemperance · Post by **intemperance** » Sat May 30, 2020 5:01 pm

Thank you both ~

Miss Emerita wrote: ↑
Sat May 30, 2020 4:00 pm
I would suggest that you set your min at 6 and your max at 6. I would suggest that you turn off the ramp.

I'll do this tonight and report back

Miss Emerita wrote: ↑
Sat May 30, 2020 4:00 pm
When you post next, I wonder whether you could clarify this: " I'll move beds and sometimes fall asleep for a few more hours. Wake up again and then move again until morning." Is there a typo somewhere, or are the different beds that you move between?

Ah yea, sorry. I have two bedrooms. It's common for me to awake in the middle of the night with this anxious feeing and I can't get back to sleep. I'll get up, sometimes pee, and then try to go to sleep in another bedroom. That usually helps me get back to sleep. I'll then wake up again and move back to my main bedroom typically.

RogerSC wrote: ↑
Sat May 30, 2020 4:15 pm
On the septum pain, if you're going to use a nasal pillows mask, I'd suggest a mask designed for that, like the ResMed AirFit P10 or Swift FX. Those two masks appear to be currently on sale at cpap.com, with free return insurance.

I think I picked the wrong mask because mine is not in there. I'm using the "Philips Respironics DreamWear Nasal Cushion". I went through about 5 different masks and this was the only one I was able to tolerate. My skin is super sensitive and I need to put a piece of cloth under it where it touches my upper lip, but it still rubs against my septum and leaves a sore

I was very paranoid about leak so I'll try to let out some tension on it.

RogerSC · Post by **RogerSC** » Sat May 30, 2020 5:17 pm

intemperance wrote: ↑
Sat May 30, 2020 5:01 pm

RogerSC wrote: ↑
Sat May 30, 2020 4:15 pm
On the septum pain, if you're going to use a nasal pillows mask, I'd suggest a mask designed for that, like the ResMed AirFit P10 or Swift FX. Those two masks appear to be currently on sale at cpap.com, with free return insurance.
I think I picked the wrong mask because mine is not in there. I'm using the "Philips Respironics DreamWear Nasal Cushion". I went through about 5 different masks and this was the only one I was able to tolerate. My skin is super sensitive and I need to put a piece of cloth under it where it touches my upper lip, but it still rubs against my septum and leaves a sore :( I was very paranoid about leak so I'll try to let out some tension on it.

Yes, your actual mask is listed there, you can see that I selected below *smile*. I'm also a Dreamwear nasal mask user at the moment, although I'm thinking about trying the Bleep mask. I have to have the Dreamwear tighter than I'd like to get the leak level down...I'm working up to the Bleep mentally *smile*, don't like the idea of $2.00 a day, but I've been reading about it and it's calling out to me. Just need a few more days, and I'll be there.

intemperance · Post by **intemperance** » Sat May 30, 2020 5:27 pm

RogerSC wrote: ↑
Sat May 30, 2020 5:17 pm
although I'm thinking about trying the Bleep mask

Thanks ! I hadn't heard of that mask. I ordered it to try it out. Maybe it can let me sleep on my side. We'll see if my skin is ok with whatever adhesive they use.

intemperance · Post by **intemperance** » Sun May 31, 2020 1:08 pm

I messed up last night and didn't put my card in. Here are the results of the o2 meter and general results.

I woke up after around 4 hours of sleep. But the cpap machine didn't bother me as much. Went back to sleep for another two hours but then couldn't sleep anymore with the machine. Took it off and slept for another 3 hours.

I still feel like a zombie today and know it's going to be another horrible day. I'll make sure I put the card in tonight. It looks like I saw an AHI of 12.7. A bunch of clear airway events. And my o2 dropped below 90 a few times.

Maybe it's interesting or maybe not but my second sleep without the cpap from 7 - 10 my O2 averaged 96 with a min of 92. I think I sleep on my side/stomach then. I can't sleep that way with my mask.

intemperance · Post by **intemperance** » Mon Jun 01, 2020 10:50 am

Heya, here's my attached Monday night with trying 6-6 with no ramp or EPR.

I woke up around 6:20 after around 5:30 hours of sleep. Couldn't get back to sleep so I took the mask off and then slept until 9. Pretty hazy this morning.

Looks like it thought I had 1 rera event. Hadn't seen that before. O2 had a couple dips below 80 and one to 84.

Thoughts on anything else I can try?

Thanks so much for all the help,

Solomon

No luck with cpap but want to try again

No luck with cpap but want to try again

Re: No luck with cpap but want to try again

Re: No luck with cpap but want to try again

Re: No luck with cpap but want to try again

Re: No luck with cpap but want to try again

Re: No luck with cpap but want to try again

Re: No luck with cpap but want to try again

Re: No luck with cpap but want to try again

Re: No luck with cpap but want to try again

Re: No luck with cpap but want to try again

Re: No luck with cpap but want to try again

Re: No luck with cpap but want to try again

Re: No luck with cpap but want to try again

Re: No luck with cpap but want to try again

Re: No luck with cpap but want to try again