Newbie in need of help

[Osiris357]

I’m glad the collar seems to have worked. This thread inspired me to give my pillows a chance with the collar. I’m gonna go back and forth with my full face so I can get a few side by side  comparisons. Both statistically and how I feel afterwards. 

I’m leaning towards full face because I get far fewer leaks with it (backwards from most people’s experiences). For me personally, leaks add to my flow limited breathing that don’t lead to a flow limitation which leave me feeling drained much earlier in the day. The only way you can make accurate judgement calls about that is if you got enough sleep the night before. For example being tired at 1pm after only 4 or 5 hours sleep would be normal but being tired at that time after a full nights sleep would be a clue to look at your flow rate in 2 min windows if your flow limitations chart doesn’t already obviously show it.

[zoraa]

Good job on the zoomed charts.  The first set of charts show a pretty classic moderate inspiratory flow limitation with no evidence of expiratory flow limit.  This just means that your respiratory effort is insufficient to overcome resistance in your upper airway and so the flow rate reaches a peak flow that is less than an unobstructed or free-flowing airway. This is why the peak flattens ahead of expiration. The cause of the airway restriction can be any number of causes from nasal congestion to physical limitations. It can be remedied by assisting the airway through use of decongestants, soft cervical collar, surgery etc. or using more inspiratory pressure support as in bilevel.

The second set of charts looks like arousal or awake breathing.  We are often not aware of or remember periods when we're awake at night, but breathing is not on the autonomic nervous system and this is what it looks like.

This is so helpful and also really interesting, thank you!

I'm on a quest now to narrow down the culprit behind the inspiratory flow limitation. Right now my #1 suspect is my jaw positioning (falling back, etc). Going to continue experimenting with the soft collar and see if it significantly affects my stats, as well as comparing the FFM vs nasal pillows, and trying the nasal spray, etc

Thanks again for your help!

[zoraa]

I’m glad the collar seems to have worked. This thread inspired me to give my pillows a chance with the collar. I’m gonna go back and forth with my full face so I can get a few side by side  comparisons. Both statistically and how I feel afterwards. 

I’m leaning towards full face because I get far fewer leaks with it (backwards from most people’s experiences). For me personally, leaks add to my flow limited breathing that don’t lead to a flow limitation which leave me feeling drained much earlier in the day. The only way you can make accurate judgement calls about that is if you got enough sleep the night before. For example being tired at 1pm after only 4 or 5 hours sleep would be normal but being tired at that time after a full nights sleep would be a clue to look at your flow rate in 2 min windows if your flow limitations chart doesn’t already obviously show it.

Interested to hear how the pillows and soft collar combinationworks for you! It seems to help a lot of people with mouth leaks, hopefully it does for you too. One thing that actually has been going well for me is mouth tape, I think because my skin stays dry and not oily at all, so I have no issue with micropore tape staying put and my mouth staying closed. Though the jury is still out on if Im able to tolerate nasal breathing through the night lol

I am planning to compare the FFM mask vs the nasal pillows as well. Sounds like we are on a similar page with our experiments lol.

In terms of fatigue and feeling drained, unfortunately that is just a constant for me. I can't remember the last time I truly felt rested, even after sleeping for 8, 9, 10+ hours and maintaining great sleep hygiene, etc. I pretty much always get at least 9 hours, and it's not uncommon for me to sleep 12 hours, and still end up needing to sleep 2-3 hours during the day

It's been a struggle for several years now... I thought it might have been due to my autoimmune issues but I've had those under control for a while now. At this point I'm hoping addressing the sleep breathing issues will help, but we shall see. The only other big culprit I suspect is my meds. I take Effexor (SNRI) along with a small dose of Buspar. If I address the sleep breathing issues and am still struggling with extreme fatigue, at that point I might have to consider the meds. That's just really difficult because they have just helped me so much with my anxiety disorder (along with self care, counseling, etc). I honestly tried everything before going on meds, which have been the only thing that's really worked for me, so I'm really hesitant to go off of them.

But, don't need to worry about that yet, right now Im focusing on the sleep breathing side of things and hoping it helps. Really thankful for all the guidance and insight you've all shared to help me on this journey

[Osiris357]

I need tape also but without the collar I guess my mouth drops and along with the air pressure the tape lifts off in random spots and air leaks out at a fairly high rate. I had one very small large leak last night and can’t put my finger on why. But I’m not going to put too much energy into finding out since it was a very short duration.

I also have dealt with anxiety as you’ve probably already read in my threads. Try to have patience while getting your therapy under control and see how you feel once your Flow limitations drop to almost nothing or at least not almost constant at a low level. I think your very sensitive to even low levels of flow limitations. Some of us are, myself included. Before I got therapy under control for the most part and for over the last 20 some years I would feel jittery to some degree sometimes all day. To the point where I didn’t know any different so it became normal. Until one day I woke and went to work and I realized I felt calm for the first time in decades without Xanax. Then my apneas and FL’s started to pop up again and back came the anxiety. It took about a week but they went away and so did my anxiety. I should’ve listened to people years ago when they suggested I go to the doctor about my snoring.

Give it a couple weeks once you get settled and honestly assess yourself about how you’re feeling as far as anxiety is concerned. Hope this helps.

[trish6hundred]

Hi zoraa,
WELCOME! to the forum.!
Good luck with CPAP therapy and getting your settings dialed in.

[zoraa]

I need tape also but without the collar I guess my mouth drops and along with the air pressure the tape lifts off in random spots and air leaks out at a fairly high rate. I had one very small large leak last night and can’t put my finger on why. But I’m not going to put too much energy into finding out since it was a very short duration.

I also have dealt with anxiety as you’ve probably already read in my threads. Try to have patience while getting your therapy under control and see how you feel once your Flow limitations drop to almost nothing or at least not almost constant at a low level. I think your very sensitive to even low levels of flow limitations. Some of us are, myself included. Before I got therapy under control for the most part and for over the last 20 some years I would feel jittery to some degree sometimes all day. To the point where I didn’t know any different so it became normal. Until one day I woke and went to work and I realized I felt calm for the first time in decades without Xanax. Then my apneas and FL’s started to pop up again and back came the anxiety. It took about a week but they went away and so did my anxiety. I should’ve listened to people years ago when they suggested I go to the doctor about my snoring.

Give it a couple weeks once you get settled and honestly assess yourself about how you’re feeling as far as anxiety is concerned. Hope this helps.

It is so encouraging to hear that addressing your sleep breathing issues helped with your anxiety. I always suspected that it was very connected for me as well. My anxiety was pretty severe before meds, like full on panic/anxiety attacks, hyperventilating, etc, but it's definitely much more managed now, of course with meds but also a lot of life changes and self care. I really do think that addressing the sleep issues will help a lot, and honestly I would love to reduce or go off the meds if I can. They have helped me SO much but, as I'm sure you know, there are definite downsides. Thank you so much for your insight on this, it really is very helpful and encouraging

On a different note, I decided to take some scissors to my soft collar   but it actually is so much more comfortable now! I trimmed about an inch off the bottom on the back/sides, and probably less than a centimeter off the front. Basically kind of trying to replicate the Dr. Dakota pillow... I am impatient and did not want to wait lol. I haven't worn it yet to sleep (I wanted to get some data with the FFM w/o collar so I could compare and contrast) but am planning to wear it tonight. We shall see how it goes. But thought I'd share since you are in waiting mode for your Dr. Dakota pillow, in case you wanted to try something in the meantime

About to post some updates as well... I am a statistician, so I nerd out pretty hard when it comes to data... decided to put together a visual comparison of my flow rate, with nasal pillows vs. full face mask lol

[zoraa]

Hi zoraa,
WELCOME! to the forum.!
Good luck with CPAP therapy and getting your settings dialed in.

Thank you so much! I am so happy I found this place, it has honestly been life changing. I've learned so much and feel like I am finally making some progress!

[zoraa]

Status update.. tried the FFM last night and I do feel like it was MUCH easier to breathe and fall asleep. I didn't have any trouble breathing out against the exhale pressure (left the EPR at 3 as it was before). I set the min/max levels to 4 and 20 because I was curious to see what pressure the APAP would automatically use with the FFM. I have no trouble breathing with the FFM while I am falling asleep, so don't really need the higher pressure until I am asleep. I previously had it set to a min of 7 and max of 14 for the nasal pillows... is it okay to keep the lower pressure initially with the FFM since I don't need the extra pressure quite yet, or would anyone advise against this?

Unfortunately I took off the FFM right around the 2 hour mark AGAIN (I don't know why it's always around the 2 hour mark lol), but I did manage to get some data. I put together a visual comparison of my FL w/ nasal pillows vs. FFM. Admittedly limited data (only 1.5 to 2 hours each night), but I do think there is a bit of a difference present. 

Quick note: all of the data attached is w/o soft collar. I wanted to get a sense of how the data looked without it so I could compare and contrast. I am planning to wear tonight and see how that goes. I do have a strong suspicion that my issues may be largely positional

It seems to me that w/ nasal pillows, my FL didn't spike as high, but I had moderate FL more consistently throughout the night. But with the FFM, while I had longer periods of time with lower FL, there are a few really high spikes/clusters (higher than it ever got w/ nasal pillows). I did have a couple of events with the FFM, but I think an improvement from the 4 events I had with the nasal pillows last time (though, hard to say for sure due to limited data).

I think it appears my FL improved with the FFM vs. nasal pillows, but I'd be interested to hear any opinions/feedback! I could definitely be off base here lol. It was nice to see longer periods of low FL w/o events, and my suspicion is that positional therapy would help with the spikes/clusters.

I included my Oscar data from last night as well - I didn't include snoring because I can only fit 5 charts - I really only had one recorded snore (0.60) around 1am, which is right about when I woke up... wondering if I woke myself up from that lol

Thanks everyone!!

[Osiris357]

I ordered the Releaf collar because Walmart still has not shipped the Dr. Dakota pillow. I think that’s a lost cause. 

Take a look at your Oscar data right before you take your mask off (I haven’t look yet). If you have FL’s or flow limited breathing right before that may be why it’s coming off. Or it could be your face isn’t used to having something on it all night yet

I’ve decided on the F30 since I get hardly any leaks and if I do they are minuscule and I mainly breathe out of my nose anyway since the collar keeps my mouth shut.

Since I started using the collar my pressure barely varies 1 cmH2O. I stay within 11 and 12cmH2O the entire night with barely a FL.

Just looked at your charts and I think if you bring your minimum up to 7 or 8 that’ll stop FL’s from even starting especially with the collar on

Also I don’t see any reason the mask is coming off except for your face not wanting it there. It might be time to explore several masks to find what you feel comfortable

[zoraa]

Osiris, thanks so much as always for your feedback! Yeah honestly, I just have trouble adjusting to any changes when it comes to sleeping. I think it may just take some time to get used to. Last night was the first night with the FFM and I was glad I was able to fall asleep so quickly, that's good at least (took longer with the nasal pillows). I am going to give it some time and if I still consistently take it off I will explore some different masks

Agh, I'm sorry to hear about the delay on the neck pillow! That is so frustrating... but glad you found another option. I will report back on how my tailored soft collar goes lol. 

As far as my activity before waking up, the only weird thing was the big snore (pretty much my only snore) right around 1am. I am wondering if I knocked myself awake from that or something lol. 

Ahhh yes I hadn't thought about how the min pressure could help prevent the FLs from even occuring in the first place (versus the pressure rising after the first occurrence of FLs). I will definitely play around with that. I did find it more comfortable to fall asleep with the level 4 at first... but maybe if I have difficulty falling asleep with the level 7 I can keep it at 4 while I'm adjusting and then increase after I've adapted a bit? Or maybe just set a short ramp while I'm adjusting... I'll play around with it and see

Planning to wear the collar and FFM tonight, hoping I sleep longer and can get some good data, fingers crossed