Frusrated, need help understanding why I can't sleep soundly

[jagzoo]

Hi All,

I don't know what is going on but after a honeymoon I just can't get a good night sleep with this machine and am feeling terrible, tired, achy and frustrated (almost 4 month into it). I wake up so much that my actual sleep hours are only about half of total sleep hours, and that is mostly waking up, rolling over, checking mask, back to sleep and repeating the process over and over again. My leaks on the Swift FX for Her are not a problem, so that isn't waking me up. Last night my husband said" why don't you not use the CPAP tonight, wear the Oximeter, and see if you can catch up on some sleep as well and see how you do off CPAP.

I will post last night's Oximeter reports from SpO2. The last combination CPAP and Oximetry report I have is from 4/19 and it is a short one. But I will post it as well as the SleepyHead and SpO2 reports from 3/20.

I am particularly interested in finding out what people think of last night's SpO2 report. Are the desats real? If they arn't, I may just give up. Same on the night that I have Sleepyhead and SpO2 data for. Are those desats real? Sorry, I can't seem to match the times even though I have followed all the suggestions. If they are - then what changes should I make?

[/URL]

[/URL]

From 4/20/13
[/URL]



From 4/19/13

[/URL]

Hear is a report from Zeo with accompanied SleepyHead report. I haven't used ZEO since because it is so depressing and because I think it is scoring some of my light stage 1 as Awake. This isn't an anomaly, it always looks like this.

4/16/13
[/URL]
[/URL]

I think I did sleep better last night off CPAP.

Any help, ideas would be really appreciated. I am so tired.

[jencat824]

I'm not familiar with the SpO2 so I can't comment there or with ZEO, the Sleepyhead data has great AHI's but I do see some leaks as well. Now I sometimes get the leak data a little messed up in translation, so I hope Pugsy comes along to correct me if I'm wrong, but with the great AHI's you should be feeling better, not worse.

I'm sure someone else will comment as well, sorry if I wasn't much help, but I did want to comment on the AHI's.

Jen

[jagzoo]

Thanks corresponding g jencat824', I appreciate it.

I know that my AHIs are good, that's why it is so frustrating to be feeling worse.

[kteague]

What did your sleep study reports say, if anything, about limb movements? What does your husband say about how much, if any, your legs move at night? When CPAP therapy appears to be therapeutic and one is rulling out other possible contributors to poor sleep, PLMD is one to be ruled out (or in).

[jagzoo]

Kteagu, On my 1st Sleep Study I had PLMS index of 24.7 events/ hr with arousal index of 4.4/ hr. On my Titration, my PMLS was 47.6 events/ hr with arousal index of 1.7/hr. I had 78 other arousals, mostly in NREM sleep.

On my 1st study ( no CPAP) my desats we're down to 71 for almost 30 sec., < 90 for 5.6 min. On the titration study, dsats fell to <85 x 1.but were only < 95 for 40 sec.

I am concerned. About 2 things: 1. My poor sleep 2 . Am I continuing to have significant desatsurations?

My Rheumatologist initially recommended for me to be tested for sleep apnea because she was concerned that the 2 years of fairly high dose prednisone together with my recent onset of snoring ( after I had been on the prednisone) and tiredness, might mean that I had developed sleep apnea. I had always been a great sleeper! As I am now only on a very small dose of prednisone, I was hoping that the sleep apnea would resolve. Instead, I am feeling worse.

[DoriC]

What is your prednisone dosage? Are you taking it in the morning or at night? Any other meds?

[Pugsy]

I wake up so much that my actual sleep hours are only about half of total sleep hours, and that is mostly waking up, rolling over, checking mask, back to sleep and repeating the process over and over again.

It's hard to evaluate the software cpap reports because you say a good chunk of it is likely awake time...so we don't know if the few flagged items on the report are real or not because we don't know if you were awake or not when some of the flagged events were during awake time.

You admit that your sleep quality is awful...frequent awakenings will totally leave a person feeling like crap.
You could have the most perfect looking reports and if your sleep hours are short and highly fragmented...you are going to feel like crap.

Your leaks are within acceptable limits as far as not negatively impacting therapy pressures but if the leaks are waking you up then they are disturbing sleep.

Whatever is causing you to wake up often and not be able to get to sleep and stay asleep...that's what needs to be tried to fix first.

Meds? Mask related? Insomnia?

I can't see the pulse ox reports all that clearly and I am not the greatest with those...hopefully someone who uses the pulse ox a lot will come by and comment. I don't use one routinely.
Though those large sudden spikes downward...I suspect those are movement artifacts. If you can zoom in real close on those you might find a gray line which means probably movement artifact and loss of sensor contact.
The human body doesn't desat that quickly. It goes down slowly and comes up slowly...not anywhere nearly as rapid as those massive drops. I don't think those are real.

[kteague]

Kteagu, On my 1st Sleep Study I had PLMS index of 24.7 events/ hr with arousal index of 4.4/ hr. On my Titration, my PMLS was 47.6 events/ hr with arousal index of 1.7/hr. I had 78 other arousals, mostly in NREM sleep.

I would be highly suspect of limb movements being a contributor to your problems. Have you had your ferritin, magnesium, vit D, etc checked? If not, I'd put that at the top of the list. And it isn't enough for the ferritin to be in the normal range. It's usually recommended it stay at least above 50 or 60 for people with limb movement issues. Also, having had a normal CBC does not mean the ferritin will be normal.

[jagzoo]

I changed the title.

Kteagu, thanks for the thought about ferritin and magnesium. I know my vitamin D is high but haven't been tested for the others. My daily vits do include magnesium but not ferritin, so Ill look into that. I am one whose feet are always jiggling and moving while I sit. Not aware of it while I sleep but would make sense. Also, my Prednisone is down to 3mg which i take at 7 am. i was on 25 mg. Thanks.

Pugsy, when I say that I am awake most of the night as the ZEO reports, I don't mean that I am consciously awake. I think I am sleeping except for, maybe 1x/ hr, when I awake and need to roll over, or roll over and then wake. It isn't that I am lying there awake. I have read that sometimes it is difficult to distinguish the line between (barely) awake and (barely) in light stage 1. This is what I think is happening with the ZEO. But, whatever, I'm not getting enough deep sleep.

2 years ago, before CPAP, before Prednisone, I slept like a baby. Never had sleep problems. This is all very recent. I guess that is why I wonder if I should just give up the CPAP and hope that getting off the prednisone, which is known to Occasionally cause sleep apnea, will make it all go away! I know I am delusional!

That is why I am trying to understand the SpO2 report, especially from the night when I wasn't using CPAP. It was the desaturations that scared me. I don't want to further damage my brain since I have some slight effects from a scuba drowning with survival incident 3 years ago. Actually, all my problems, PMR and sleep apnea happened after that! Maybe CPAP is forever.

Last night, on CPAP, seemed better. I haven't looked at the readings in SleepyHead yet, but will post later.

Thanks for all the help and thoughts, Gail

[Mary Z]

I used to think all you had to do was strap on your mask, use the machine 100% of sleep time and all will be well. Then I learned that compliance with the machine does not guarantee quality sleep. I would start with simple, but not easy, sleep hygiene. I'm not good at reading graphs so I won't comment on those. I think a review and some hard work on sleep hygiene would help. I no it seems so simple we assume our sleep habits are fine. I won't go into the particulars of sleep hygiene, but I will wish you the best of luck. Sometimes the simple things are the answer.
Mary

[jagzoo]

Changed title from Frustrated etc

First, Thanks Mary for your thoughts on Sleep Hygiene. I do think I am careful with that, but not perfect. In particular I am careful to not use any digital things (iPhone, iPad, TV etc) for 1-2 hrs before bedtime. All the digital light emitting things in the bedroom are covered and I wear a sleep mask to block out all remaining light. I am not about to give up book or magazine reading before sleep as it helps me quiet down from the day. Usually I don't have any trouble falling asleep, it is just that seem to have so many arousals and mini wake ups that sleep is fragmented.



I am including my SleepyHead and Encore results from last night's CPAP. Would the FLs and REs cause arousals; even though my AHI is "fine" can the Obstructions and Hyponeas still be causing arousals that would fragment sleep? If so, then what changes might I make in settings to lessen them?

[/URL]

[/URL]

Thanks for any thoughts.

[Pugsy]

Yes, it's very possible that the RERAs and FLs are causing some minor arousals (and you may or may not remember them) and thus messing with the overall quality of sleep which then of course messes with how you feel.

Normally...just a wee bit more pressure to better hold the airway open to limit those low level reductions in air flow that might be a disturbing factor to sleep quality.

Your reports aren't horrible number wise but they have what I call "clutter" FLs, RERAs...that indicate some reduction in air flow. Not enough reduction to warrant a specific flag but might impact sleep quality.
Maybe as little as 0.5 more pressure.

[jagzoo]

Thanks Pugsy,I'll try 10/10 starting tonight or do you think I should give it a little range like 10/ 11?

[Pugsy]

I think if it were me I would try the tiny range 10/11...just to see what the machine wanted to do.

[jagzoo]

Sounds good; I'll try it for a few days. Thanks