Felt Suffocated with Full Mask & APAP Years Ago -- Recommendations for Second Try?

Had a headache yesterday. Still trying to figure out how to get to the info requested without sending too much from yesterday's sleep. Reading through the link was too hard yesterday with the headache, and I ended up napping without the machine. I didn't sleep with the machine at all last night because of face pain. I am going to read again today and see if I can figure out the imgur and other stuff that is discussed so I don't spam ya'll.

My face hurts in my cheek area around where the nasal mask sits and the strap hurts my face. I've tried loosening it but it leaks if I loosen too much, so I went online to search for answers. I purchased some disposable mask liners as well as some strap covers to see if it can help as I don't need anything else to cause me any pain. Between today & tomorrow, they are supposed to arrive. Once they do, I shall try again.

I had it on the nasal mask setting since it only had the 3 settings on the APAP. I had used a sizing gauge before I even got my mask to make sure it was the right size. It felt comfortable at first but over time it hurt. I have alot of pain issues. I have fibromyalgia, peripheral neuropathy, trigeminal neuralgia...nerve pain issues and TN is in my face though not usually where the pain from the nasal mask is -- that is a new place for me to have pain. I am used to my skin and the muscles beneath it hurting to a certain extent all the time, but I can cause flare-ups with hurting myself or causing other pain so I'm trying to figure out how to get the mask right on my face without causing me more pain that can trigger my other pain. I had the mask's instructions, and I used their tool for verifying sizing.

https://www.youtube.com/watch?v=xaXnq-UqRzk

CLC

I had to resize the boxes to get these in one image so I hope this is okay:

Good job on the chart. It's not uncommon to see centrals occurring while we're falling asleep. There's a "hand-off" from waking to sleeping bodily functions, and sometimes centrals crop up as a result. Is that a common pattern for you?

If yes, I think I'd focus less on the centrals and more on the flow limitations, which are not horrible but might make it a little more difficult for you to get restful sleep. You could try increasing your EPR from 1 to 2 to see what happens. That could help to reduce the FLs. But if you usually have a lot of centrals distributed throughout the night, I'd recommend holding off on any changes to EPR.

Have you tried any treatments for the periodic limb movement? That was a prominent feature in your sleep study. There's a lot of good information here, from a trusted web site:

https://www.sleepfoundation.org/periodi ... t-disorder

Take a look and see whether there is some testing or treatment you might want to discuss with your doctor.

**Treatment for limb movement disorder

Yes, I've tried various treatments & followed a long list of recommendations over the years for my various conditions including sleep apnea, limb movements, etc trying to figure this out so I could work and be there for my family, which I felt was a real struggle for me. In that period of time where I had the sleep study and found out about the apnea & limb movement disorder, I also found out about other pain disorders like my fibromyalgia, neuropathies and trigeminal neuralgia. I was told by my neurology office at the time that my limb movement disorder was restless leg which the article you reference says is a completely different thing.

I have tried gabapentin, ropinrole, anti-seizure medications like clonazepam & another one which I can't remember at the moment for my nerve conditions & that, muscle relaxers, low level amitriptyline to try to help me fall asleep, I even tried melatonin. I tried lyrica but it made me rage. I think the ropinrole was the one that gave me high anxiety that I had to call my husband home from work.

I feel pretty jaded about medical care and its ability to help me.

I know with the medications I was on that I was falling so I hurt my knee and back. I fell alot. Enough that my falls were being tracked. I was sleeping almost 24/7 except when I forced myself to be awake, I almost lost my drivers license....so years ago when I reached my breaking point I stopped pretty much all my medications except for asthma related as it wasn't improving anything. If it was stopping my movements, it was because it over-sedated me and made it impossible for me to move. I was SO fatigued that I couldn't function and I felt I wasn't there for my kids let alone to have any quality of life. It was at this time with all these challenges and my health that I left work. I also left medical care at that time, and did not see doctors unless I absolutely had to do so.

I felt like a test dummy and like they threw medication at me to try to fix it. But, I was so hoping to find something that worked that I did it. I'll be 100% honest here and say I just went back to doctors this year after taking several years where I didn't go to them unless I was sick and needed medication to breathe. I do not have much hope with all the tests and doctor appointments and consults I've had over the years that I am going to find something that works. My eye is on that lower number of my blood pressure and hoping I can find a way to make using APAP therapy not painful and something I can do to see if it helps with that.

APAP therapy was one of the things that they tried that didn't work, but my current doctor said she thinks it might help my lower number of my blood pressure if I could use it regularly. I do not hold much hope that it'll do anything for my fatigue since I tried it for 9 months the last attempt, and there was no change to my fatigue. I would like not to have a stroke or heart attack like I have in my family history though, hence back to trying the APAP.


**As to your question about central apnea & if its a pattern for me

I only know the original sleep study and have no idea if centrals are prominent or a common pattern. I was never shown or educated about the data. For that matter, I have no idea what the OSCAR data is saying. It looks just like a bunch of squiggles and that is about all I get out of it. I read the list of definitions off the forum trying to educate myself, but really no clue what the data is saying. My degrees are a B.S. in Psychology & M.S. Ed. in Counseling. I'm educated but I don't understand this, and haven't been educated in this.

My iron level has been tested and is fine. I drink a cup or 2 of coffee, and occasionally some soda but we don't buy it regularly. Coffee is routine for the morning, and I need it to function. I have a sleep routine and bedtime, though its altered some with trying the APAP again. The more my routine changes the more I'm stressed. I don't exercise. I have chronic pain and breathing issues, and limit going outside to avoid my asthma triggers most of the time. I tried weight loss, I tried walking, I tried water exercise for a while but doing that just drained every bit of energy out of me, and I was useless the rest of the time to myself or my family let alone work. I even ended up in the hospital once when I tried to exercise and lose weight because it just used every bit of energy out of me and I didn't have anything left for work, or my family.


**EPR

I know when I felt suffocated I wondered if it was because of the pressure I feel when I exhale. I have no idea about the number of centrals I have through the night. Should I hold off changing that until I know about the centrals?

I need to be able to actually use the APAP regularly so I know if the central issue is common, and right now I'm struggling to use it because it hurts my face.


**Got the mask liners

I got the mask liners today and tried it during a nap, and it really didn't make a difference in how the mask felt. My cheeks still hurt. They did not provide any real cushioning or anything so I'm not certain what they are supposed to achieve. That was not a winner for me. I am not certain what I'm doing wrong, but I know my husband struggles too as he actually has red marks on his face where the straps from the mask are -- I don't have any visible marks, not even when I first get up, but it hurts. I hope that when the strap covers come that they help. They are set to be delivered tomorrow by my tracking info.


The nasal mask I got did not make me feel suffocated though when I increased the lower pressure like this group said to do, so I'm making baby steps in the right direction.


Thanks for the input,

CLC

Miss Emerita wrote: ↑

Wed Apr 14, 2021 10:39 am

Good job on the chart. It's not uncommon to see centrals occurring while we're falling asleep. There's a "hand-off" from waking to sleeping bodily functions, and sometimes centrals crop up as a result. Is that a common pattern for you?

If yes, I think I'd focus less on the centrals and more on the flow limitations, which are not horrible but might make it a little more difficult for you to get restful sleep. You could try increasing your EPR from 1 to 2 to see what happens. That could help to reduce the FLs. But if you usually have a lot of centrals distributed throughout the night, I'd recommend holding off on any changes to EPR.

Have you tried any treatments for the periodic limb movement? That was a prominent feature in your sleep study. There's a lot of good information here, from a trusted web site:

https://www.sleepfoundation.org/periodi ... t-disorder

Take a look and see whether there is some testing or treatment you might want to discuss with your doctor.

If straps keep hurting your face in the future, you might look at the TapPap or the bleep/dreamports system. They are both strapless.

viewtopic/t174784/Looking-for-info-on-the-tap-pap.html

https://www.cpap.com/productpage/tap-pa ... k-improved

viewtopic/t174807/BleepDreamPort-nasal- ... hread.html

https://www.cpap.com/productpage/bleep- ... -cpap-mask

These data are with the first set of liners with a nap & sleep. Today's nap with a different liner & strap covers was a bust. All it said was large leak, so no data from my nap. So this is yesterday's with the first set of liners which I took out at one point during the regular sleep period.


I'll try to put the straps tighter tonight and see if I can get rid of that large leak for tonight.

CLC

[quote=ccompton post_id=1382056 time=1618515470 user_id=97967


I'll try to put the straps tighter tonight and see if I can get rid of that large leak for tonight.

CLC
[/quote]

unless the large leak wakes you up, you might even want to bother.

btw, how do feel with the current setup? sleeping better?

"I only know the original sleep study and have no idea if centrals are prominent or a common pattern. I was never shown or educated about the data. For that matter, I have no idea what the OSCAR data is saying. It looks just like a bunch of squiggles and that is about all I get out of it."

What I had in mind is just to look at the Events graph at the top, look at the line labeled CA, and see whether most of the little flags occur during the first half-hour or so of the night. You can move around from one night to another by clicking dates on the calendar.

"I know when I felt suffocated I wondered if it was because of the pressure I feel when I exhale. I have no idea about the number of centrals I have through the night. Should I hold off changing that until I know about the centrals?"

Use the Overview tab in Oscar and look at the row labeled "Clear Airway" and see how often the number there is over 2. If it's usually under 2, then don't hesitate to increase your EPR to 2. If all goes well, you can then go up to 3. I'll be curious to see how things go for you with an increase in EPR.

I thought large leaks would be a problem? When I had the liner on with the leak, it didn't hurt my face. Once I took it off for last night, I didn't make even 3 hours with it on.

CLC

zonker wrote: ↑

Thu Apr 15, 2021 3:46 pm

zonker wrote: ↑

Thu Apr 15, 2021 3:46 pm

[quote=ccompton post_id=1382056 time=1618515470 user_id=97967


I'll try to put the straps tighter tonight and see if I can get rid of that large leak for tonight.

CLC

unless the large leak wakes you up, you might even want to bother.

btw, how do feel with the current setup? sleeping better?

OH. I didn't even know this was a thing. I just had an Ah ha moment thanks to you. I didn't realize that event list corresponded to the chart on the left. I'll check between dates but I don't have many yet. I took off the liner because of the leak even though my face felt better, and last night I didn't last long and my cheeks hurt again. I thought a leak would be a concern considering the unit itself makes a frowny face during mask fit.

How many days should I look at before trying the EPR, if I can wear the thing?

CLC

Miss Emerita wrote: ↑

Thu Apr 15, 2021 4:18 pm

"I only know the original sleep study and have no idea if centrals are prominent or a common pattern. I was never shown or educated about the data. For that matter, I have no idea what the OSCAR data is saying. It looks just like a bunch of squiggles and that is about all I get out of it."

What I had in mind is just to look at the Events graph at the top, look at the line labeled CA, and see whether most of the little flags occur during the first half-hour or so of the night. You can move around from one night to another by clicking dates on the calendar.

"I know when I felt suffocated I wondered if it was because of the pressure I feel when I exhale. I have no idea about the number of centrals I have through the night. Should I hold off changing that until I know about the centrals?"

Use the Overview tab in Oscar and look at the row labeled "Clear Airway" and see how often the number there is over 2. If it's usually under 2, then don't hesitate to increase your EPR to 2. If all goes well, you can then go up to 3. I'll be curious to see how things go for you with an increase in EPR.

Large leaks aren't always a huge problem that people might think they are.
It depends on just how bad the large leak is...as in how deep into large leak territory you go and how long you stay there.

For now though...getting you to keep the mask on and sleep is your primary goal. If using mask liner helps your comfort issues....use the mask liner for now...get the sleep keeping the mask on and THEN we worry just how bad the leaks might be impacting the therapy itself.

Gotta get the sleep using the mask first.

ResMed has a line in the sand of 24 L/min excess leak for large leak territory but they actually can get fairly decent compensation for leaks, response and event recording up to about 35 L/min. If you didn't spend much time above 30 L/min and slept well with the mask on....it's not a horrible result. Much better than no sleep or no mask sleep.

ccompton wrote: ↑

Fri Apr 16, 2021 4:53 am

I thought large leaks would be a problem? When I had the liner on with the leak, it didn't hurt my face. Once I took it off for last night, I didn't make even 3 hours with it on.

CLC

nope. see pugsy's response. got to get you used to sleeping with a mask first and worry about the details after.

"How many days should I look at before trying the EPR, if I can wear the thing?"

Just look at Central Events in the Overview. Down at the bottom left of the page, you can tell it to show all the nights for which Oscar has data. Are there a lot of times when the total index is over 2 (meaning an average of 2 per hour)?