Struggling but NOT Giving Up

MimiLou · Post by **MimiLou** » Mon Jul 02, 2018 9:35 am

First off, thanks to everyone...some are ever so nice, some are a bit snarky and everyone seems to care a lot, for which I thank you! I do have to laugh when some snarky comments are made because auto-correct by fellow members usually follows!
So, I am older and it has taken me all this time since joining to figure out Sleepyhead downloading and getting a card reader (WTF?) and finally it all came together a few minutes ago...what JOY it was to "see" more than the "oh your numbers are great" crap from the DME who don't want to know anything about my difficulties!!! I have been riding Sluggish's (?) coat tails learning along with him, and indeed I did not use my device for 2 nights to clear my head...so to speak. What I have found is that a whole lot of my events can be prevented by NEVER sleeping on my back, which is quite difficult because I can't sleep on one of my shoulders because of impingement and rotator cuff problems. That being said I have put a large knotted rope dog pull toy (slightly used) into a tube sock and pinned it to the middle of my pillow to force me to get off my back and my events went down dramatically.
I will keep searching for answers before posting but thank you so much for being here.

jnk... · Post by **jnk...** » Mon Jul 02, 2018 9:48 am

MimiLou wrote: ↑
Mon Jul 02, 2018 9:35 am
I did not use my device for 2 nights to clear my head...so to speak.

PAP therapy brings the most benefits to users who use it all night every night and who never sleep without it. So that is the goal to achieve, eventually.

MimiLou wrote: ↑
Mon Jul 02, 2018 9:35 am
What I have found is that a whole lot of my events can be prevented by NEVER sleeping on my back,

The idea of PAP therapy is for you to use a pressure that will allow you to sleep in any position, if at all possible. Injuries or hospital stays often end up putting us on our back one day, and we will need the right pressure for that.

MimiLou wrote: ↑
Mon Jul 02, 2018 9:35 am
I have put a large knotted rope dog pull toy (slightly used) into a tube sock and pinned it to the middle of my pillow to force me to get off my back and my events went down dramatically.

Do not rely on any approach that may cause arousals. You might win the battle of preventing breathing events but lose the war of improving sleep--which is, after all, the primary goal--since arousals disturb sleep architecture, even when we don't remember them occurring.

chunkyfrog · Post by **chunkyfrog** » Mon Jul 02, 2018 9:53 am

I have had both shoulder problems myself, and found physical therapy to be effective for both.
I have also recognized the damage done by even moderately heavy shoulder bags.
I now carry the bare essentials in a fanny pack (unstylish as heck--but priorities . . .),
and leave the heavy stuff in a small backpack in the car.
Side sleeping works, but pain does not.
Good luck with your sleep.

zonker · Post by **zonker** » Mon Jul 02, 2018 11:14 am

MimiLou wrote: ↑
Mon Jul 02, 2018 9:35 am
First off, thanks to everyone...some are ever so nice, some are a bit snarky and everyone seems to care a lot, for which I thank you! I do have to laugh when some snarky comments are made because auto-correct by fellow members usually follows!
So, I am older and it has taken me all this time since joining to figure out Sleepyhead downloading and getting a card reader (WTF?) and finally it all came together a few minutes ago...what JOY it was to "see" more than the "oh your numbers are great" crap from the DME who don't want to know anything about my difficulties!!! I have been riding Sluggish's (?) coat tails learning along with him, and indeed I did not use my device for 2 nights to clear my head...so to speak. What I have found is that a whole lot of my events can be prevented by NEVER sleeping on my back, which is quite difficult because I can't sleep on one of my shoulders because of impingement and rotator cuff problems. That being said I have put a large knotted rope dog pull toy (slightly used) into a tube sock and pinned it to the middle of my pillow to force me to get off my back and my events went down dramatically.
I will keep searching for answers before posting but thank you so much for being here.

good job, mimilou! you are finding how just how complicated it can be to get a good nights sleep. i, too, have trouble with the back sleeping. i can go from an ahi of 0.77 to 2.77 just from back sleeping.

but, like you, i can sometimes get shoulder pain from side sleeping. also, i have a tendency towards lower back pain which can be relieved by sleeping on my back with my knees slightly elevated with a pillow.

after three years of this therapy, i've just decided that this is what it is. i'd rather sleep pain free than have the lower numbers.

hope everything goes well for you!

oh! and when you get the time, could you fill out your equipment profile?

BobHale · Post by **BobHale** » Mon Jul 02, 2018 4:50 pm

I've been on CPAP for 8 years at this point.
My shoulders will only let me sleep on my back. My AHI is generally 5 to 6 which my doctor indicates is fine.

Okie bipap · Post by **Okie bipap** » Mon Jul 02, 2018 7:29 pm

I can not sleep on my back due to medical problems. I use an adjustable bed with my head and feet raised. It is similar to sleeping in a recliner. My AHI is normally under 1 every night. When we travel, I take two foam wedge pillows I purchased at Bed Bath and Beyond several years ago. I use them at the head of the bed and place a pillow under my knees. My AHI stays the same with this set up.

MimiLou · Post by **MimiLou** » Tue Jul 03, 2018 5:17 am

Thank you all. I appreciate all of the suggestions, chunkyfrog, BobHale, jnk and zonker, if sleeping on my back to prevent increased shoulder pain means sticking with a PAP device then that is what, like you all, I will do. Finding a mask I can live with was a struggle...in the end with my round face (not much chin!) and aged skin composition the AirTouch F20 with memory foam seal was the "winner" over the 4 I tried with silicone. I so wanted the Amara View and/or the new Dreamwear FFM to work but every movement I made shifted the seal and I lost sleep repeatedly trying to re-seat them no matter how tightly I cinched them down. Jnk your point was well taken about the arousal from the rope on my pillow...because of its length I not only had to turn off my back I had to reach around and flip it over into the space I had been in.
The 2 nights I skipped ended last night (before that I had 100% compliance because I was determined to get better sleep!) after reading reading reading here. I have gotten in to the clinical settings portion and am so happy I don't have to keep calling the DME to beg for new settings...they didn't even want me to control my own air temp and humidity and tried to refuse to give me the sd card that hadn't been put into the machine! Because of this forum I realized I do better with CPAP rather than APAP and minimal if any ramp. I have tried with and without pressure relief to see what works, and I have found a good CPAP number that controls most all events, now I am going to back off a little to see if less works as well or acceptably. Reading the posts about the reality of centrals possibly being machine misreads or even caused by un-tweaked pressures was enlightening and I quit fretting about them, especially as they were consistently below 3 and I take (GASP!!) opiates for pain.
Chunkyfrog I have to tell you my closet and life revolve around finding an efficient toting arrangement..it finally broke down into a "purse" that holds just about everything I need away from the house but it stays in the car and I remove what I need for each errand!! I deliberately chose the iPhone ES for its very small size and I have a wallet for it that holds 3 credit card equivalents...AND a fanny pack for the longer away from car events...so yes, I get it!!
I am mortified, zonker, about my equipment listing not being saved as I had been quite smug every time I read a post reminding the OP to fill that in...I actually had done it first thing when I joined but didn't realize I had overlooked the final "submit" entry!
I had read about trying a pillow wedge and borrowed one...however, I also added a pillow and in the first hour my events were 56 so the wedge went back home...Okie bipap I am glad you have found the right combo, I am kind of dreading the trip I am taking in the fall.
What a trip this journey is!
I find it very interesting that when I enter a question into my usual search engine (chrome) every single time it brought me back here!!!! Says a lot about you all!

Sheriff Buford · Post by **Sheriff Buford** » Tue Jul 03, 2018 5:30 am

Unless I missed it.... what are your numbers when you sleep on your back? Are they significantly higher than the numbers you'd get sleeping on your side. Like many others, I have bad shoulders. I can sleep a little while on my side, but after a while, I end up on my back. If it's not a lot of difference, I say screw it. Sometimes we cpaper's chase numbers. To me, at the end of the day, it's how we feel that counts. I would give up AHI results to feel better.

Blessings, Sheriff

MimiLou · Post by **MimiLou** » Tue Jul 03, 2018 6:24 am

Sheriff Buford I have only mild sleep apnea but out of 8 hours sleep study I had a total of less than 50 minutes in "restful" sleep with AH's and centrals so the provider is starting me on PAP to control what can be controlled and then I hope she moves on to find out why despite every sleep hygiene measure I have implemented I am perpetually exhausted.
All that being said and just yesterday using the sd card info for 1 night info I have no good captures but my running notes from day 1 (including mask fit and settings problems) have taken my events from 8-15 to 0.6 last night with no back sleeping, CPAP 14.6, EPR 2, and the F20 mask...I actually wondered if I needed a PAP at all but the 2 nights without it I had quite a few remembered arousals and my hot sweaty wake ups returned. I haven't quite gotten the hang of understanding the sd card info but I am learning while getting real data now that I have settled into the mask and sleeping with the changes.
I am going to back off a bit on my CPAP pressure and when that is relatively stable I will go back to sleeping in whatever position my body chooses...as jnk so elegantly stated that that is the purpose of all this!!! Or gosh, maybe start sleeping on my back immediately and tinker with the pressures later??...OY!!!! And yes, I am a numbers chaser for sure, lol!!!! So far I haven't felt less tired but that is why I took 2 nights off to settle my brain and kind of start anew with a more clear frame of mind, and maybe, just maybe, I feel a bit perkier today!!!

zonker · Post by **zonker** » Tue Jul 03, 2018 5:37 pm

MimiLou wrote: ↑
Tue Jul 03, 2018 5:17 am
Thank you all. I appreciate all of the suggestions, chunkyfrog, BobHale, jnk and zonker, if sleeping on my back to prevent increased shoulder pain means sticking with a PAP device then that is what, like you all, I will do. Finding a mask I can live with was a struggle...in the end with my round face (not much chin!) and aged skin composition the AirTouch F20 with memory foam seal was the "winner" over the 4 I tried with silicone. I so wanted the Amara View and/or the new Dreamwear FFM to work but every movement I made shifted the seal and I lost sleep repeatedly trying to re-seat them no matter how tightly I cinched them down. Jnk your point was well taken about the arousal from the rope on my pillow...because of its length I not only had to turn off my back I had to reach around and flip it over into the space I had been in.
The 2 nights I skipped ended last night (before that I had 100% compliance because I was determined to get better sleep!) after reading reading reading here. I have gotten in to the clinical settings portion and am so happy I don't have to keep calling the DME to beg for new settings...they didn't even want me to control my own air temp and humidity and tried to refuse to give me the sd card that hadn't been put into the machine! Because of this forum I realized I do better with CPAP rather than APAP and minimal if any ramp. I have tried with and without pressure relief to see what works, and I have found a good CPAP number that controls most all events, now I am going to back off a little to see if less works as well or acceptably. Reading the posts about the reality of centrals possibly being machine misreads or even caused by un-tweaked pressures was enlightening and I quit fretting about them, especially as they were consistently below 3 and I take (GASP!!) opiates for pain.
Chunkyfrog I have to tell you my closet and life revolve around finding an efficient toting arrangement..it finally broke down into a "purse" that holds just about everything I need away from the house but it stays in the car and I remove what I need for each errand!! I deliberately chose the iPhone ES for its very small size and I have a wallet for it that holds 3 credit card equivalents...AND a fanny pack for the longer away from car events...so yes, I get it!!
I am mortified, zonker, about my equipment listing not being saved as I had been quite smug every time I read a post reminding the OP to fill that in...I actually had done it first thing when I joined but didn't realize I had overlooked the final "submit" entry!
I had read about trying a pillow wedge and borrowed one...however, I also added a pillow and in the first hour my events were 56 so the wedge went back home...Okie bipap I am glad you have found the right combo, I am kind of dreading the trip I am taking in the fall.
What a trip this journey is!
I find it very interesting that when I enter a question into my usual search engine (chrome) every single time it brought me back here!!!! Says a lot about you all!

mortification uncalled for!

we all start out as new and don't know everything. i mainly suggested it so the experts here could tell at a glance what you are using. we are all different and different advice may be needed for you some day.

as to that search result? i think it's just because we like to talk so much!!

jnk... · Post by **jnk...** » Tue Jul 03, 2018 5:44 pm

zonker wrote: ↑
Tue Jul 03, 2018 5:37 pm
because we like to talk so much!!

Not me.

I only post a very few words when I absolutely have to.

Yep. Strong silent type. That's me.

zonker · Post by **zonker** » Tue Jul 03, 2018 6:07 pm

jnk... wrote: ↑
Tue Jul 03, 2018 5:44 pm

zonker wrote: ↑
Tue Jul 03, 2018 5:37 pm
because we like to talk so much!!
Not me.

I only post a very few words when I absolutely have to.

Yep. Strong silent type. That's me.

my god! how do you stand the pressure?

jnk... · Post by **jnk...** » Tue Jul 03, 2018 6:33 pm

zonker wrote: ↑
Tue Jul 03, 2018 6:07 pm
how do you stand the pressure?

EPR.

zonker · Post by **zonker** » Tue Jul 03, 2018 7:43 pm

jnk... wrote: ↑
Tue Jul 03, 2018 6:33 pm

zonker wrote: ↑
Tue Jul 03, 2018 6:07 pm
how do you stand the pressure?
EPR.

congratulations, good sir. that is at once the shortest AND most atrocious pun i've ever seen!!

jnk... · Post by **jnk...** » Tue Jul 03, 2018 9:49 pm

Thanks. I'll be here all week.

Struggling but NOT Giving Up

Struggling but NOT Giving Up

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