Mild apnea; terrible sleep quality; how do these data look?

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
PJ1S
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Mild apnea; terrible sleep quality; how do these data look?

Post by PJ1S » Fri Nov 13, 2020 11:37 am

Hi, new here. Apologies in advance if I missed any important rules or did anything wrong.

Long background: 50 yo male, 5'10", 150 lbs, mild persistent asthma all my life, seasonal allergies, but both under control and needing minimal treatment. Also chronic back pain due to degenerative thoracic & lumber discs but generally well-controlled without meds. Always been a light sleeper but things got dramatically worse in 2010 and have pretty much stayed that way (no trigger event; just started having terribly fragmented sleep out of the blue as far as I can tell). I usually have no trouble at all falling asleep; my sleep hygiene is great. But I do wake 3-4 times a night, and almost always after waking, and particularly in the morning, I feel a combination of being simultaneously sick with flu, hit by a truck and electrocuted: whole-body ache/malaise, feeling like I'm in Jupiter's gravity, heart pounding, shakiness, intense PTSD-like startle reflex. This sometimes resolves after a few hours, sometimes lasts all day, completely wrecking my day. Almost always feel like I have gotten no sleep at all, every day. Have been on intermittent FMLA for years due to this.

I've had several sleep studies, all showing mild apnea, with AHIs ranging 7-13, higher on my back, lower on my side. Half of the docs say "not significant, you don't need CPAP, sounds more like anxiety, try an SSRI" and half say "OMG you need to be on CPAP immediately" (I have tried SSRIs but they make my sleep so much worse I can't tolerate them. Currently on lunesta 3mg nightly for years and gabapentin 300mg 2x/day).

I have a ResMed AutoSense 10 and have tried this over the years but can't endure it for long. Invariably I can tolerate it for several weeks but then my sleep quality gets worse and worse while on it and I eventually have to stop. After stopping I actually do seem to have better sleep, for a while. My AHIs while using the ResMed are generally <5. I use the DreamWear full face mask. While I am able to breathe through my nose and have tried using nasal pillows, I have a large open bite and despite many attempts including chin straps and mouth tape cannot seem to keep my mouth closed; I wonder if decreased lung function due to long-term asthma (typical concave FEV1 curve) may also be a factor there, if mouth-breathing provides greater intake.

I have currently been using my ResMed for about 6 weeks, with the most success I've had so far, by restricting pressures between 6 to 8, lying on my side. But the nights have been getting worse and worse over the past couple weeks, with daily symptoms as described above. Typical night according to OSCAR below. My average AHI is about 1.0. Sleep doc says the results he sees look great, apnea is "fixed", no change in treatment. This does not comport with my daytime symptoms and inability to function. I asked him about my flow rate curve, frequent flow limitations, flipped I/E ratio, etc. and he said "doesn't matter, your AHI is <5, nothing to worry about".

I have perused the forums quite a bit but have a tough time understanding all the parameters and whether anything my data's showing could be contributing to my utterly wrecked state. Wondered about UARS. Wondered if due to my being such a light sleeper that using CPAP is just causing lots of microarousals during the night. I thought that restricting the pressure range to 6-8 would help answer that (originally my doc had me at 4-15, which was a disaster). I really thought that was the answer, but as noted have cycled downward hard again.

Would love to hear any thoughts about the data below and if you think there is anything here that suggests something further to be tweaked/optimized in my CPAP treatment, or if it looks all within the bounds of normal and I should look elsewhere for solutions. Happy to provide other info if helpful. Thanks so much!
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Last edited by PJ1S on Fri Nov 13, 2020 12:33 pm, edited 1 time in total.

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Julie
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Re: Mild apnea; terrible sleep quality; how do these data look?

Post by Julie » Fri Nov 13, 2020 12:00 pm

Try raising your min. to 7-8 and your max to 15 for a few nights to see how things go and come back to this thread.

Why was your max set so low?

PJ1S
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Re: Mild apnea; terrible sleep quality; how do these data look?

Post by PJ1S » Fri Nov 13, 2020 12:08 pm

Lunesta 3mg nightly for years. Currently also gabapentin 300mg 2x/day and tizanidine 2mg PRN, both for pudendal neuropathy, but these sleep issues preceded that. Albuterol PRN but rarely. Ibuprofen PRN for back pain, maybe a 2-3 times a week.

I had been at higher max pressure before (15) but would often be consciously awakened by the pressure increases. When I restricted to 6-8 I thought that was helping, as those conscious awakenings have subsided (still get up to pee though).

PJ1S
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Re: Mild apnea; terrible sleep quality; how do these data look?

Post by PJ1S » Fri Nov 13, 2020 12:09 pm

So sorry I'm semi-comatose - I thought you said "meds" in your reply. Please ignore the first paragraph. LOL

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Re: Mild apnea; terrible sleep quality; how do these data look?

Post by Pugsy » Fri Nov 13, 2020 12:22 pm

PJ1S wrote:
Fri Nov 13, 2020 12:09 pm
So sorry I'm semi-comatose - I thought you said "meds" in your reply. Please ignore the first paragraph. LOL
You aren't crazy. She did mention meds and then went back and edited her response because she saw you mentioned meds in your first post. It was a bit lost in the block wall of text. If you have time you might go back and edit that big block to make for an easier read.

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PJ1S
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Re: Mild apnea; terrible sleep quality; how do these data look?

Post by PJ1S » Fri Nov 13, 2020 12:34 pm

Thanks. Edited and split it up a bit - hope that's better.

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Julie
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Re: Mild apnea; terrible sleep quality; how do these data look?

Post by Julie » Fri Nov 13, 2020 1:39 pm

Thank you - I tend to get impatient and scan stuff, only look back afterward and realize I missed stuff.

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Re: Mild apnea; terrible sleep quality; how do these data look?

Post by Doce » Fri Nov 13, 2020 8:06 pm

Hello and welcome,

You're in the right place. There are lots of many helpful and intelligent folks on this forum. I'm not an expert, but I've done my homework on sleep issues for 8+ years now. I can relate to a lot of the things you mentioned in regards to the way you feel when waking up, being a light sleeper, cpap keeping you in a light sleep stage/causing arousal. When I have a night of really bad/poor quality sleep, those symptoms the next day are worse. Part of me wonders if those symptoms you're having could be anxiety related. Sleep disordered breathing can contribute to anxiety and depression from what I've read. In you're case, if it were anxiety, I wouldn't know which came first. Definitely bring that up to your doctor and if they dismiss you, find a doctor that will listen and take you seriously.

I'd say that the doctors that tell you your apnea needs to be treated are correct. You don't want to be waking up every 4-9 minuets every hour form apena events.

You minimum pressure definitely needs to be raised. Almost looks like your minimum should be at least 8 (likely more) but I'll let the experts chime in. The machine maxed out at 8 for quite awhile, and wanted to go higher and you have quite a bit of flow limitations. Definitely look further into raising your pressure.

I too had a very hard time adjusting to cpap and gave up on it. Tried it again several months later. Gave up on it and now back for my third time which seems to be the best go at it thus far. Looking back, the biggest issue for me and cpap was finding a mask that was comfortable and dialing in the temperature and humidity levels. Make sure the mask that you're wearing is comfortable, and fits well. You don't wan the added sensations of an uncomfortable mask and leaks to create even more havoc on your already light sleep.

Another thing that has helped me a lot with the sensitivity to stimuli was to wear ear plugs. It helped me to not hear the machine and each breath, keeping me in this stage half asleep, half awake stage.

Hope this gives you some food for thought. This is very similar to me, so I will be watching your thread.

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Miss Emerita
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Re: Mild apnea; terrible sleep quality; how do these data look?

Post by Miss Emerita » Fri Nov 13, 2020 9:23 pm

Hello, PJ1S. Your chart shows a pretty fair amount of flow limitation, and the best way to address that is with EPR (expiratory pressure relief). This creates a pressure difference between exhalation and inhalation, and sometimes that little boost in pressure when you breathe in will help you complete your inhalation more successfully. EPR is also a good way to try to reduce hypopneas and RERAs (respiratory effort related arousals).

So I strongly recommend that you set your EPR to 3 (the maximum on your machine). To be sure you get the full benefit of the EPR, reset your minimum to 7. I myself would leave the maximum at 8. The machine certainly wants to go higher, but that's in response to the FLs, and higher pressure is less likely to help you with those than EPR is. Also, it sounds as though pressure swings may bother you, so let's keep those out of the mix for now.

If you'd like to try these changes, please post another chart so we can see what effects they had. That may suggest additional tweaks.

The zoomed in view shows that you have a cardioballistic artifact. This is nothing to worry about; it just means your heartbeat telegraphs itself a little to your airway and causes oscillations in your flow rate. This is very plain to see between breaths, where you see the little squiggles above and below the zero line. The crossing and recrossing of the zero line messes up your I:E ratio, so don't worry about that either. In the zoom we can see that your inhalations last longer than your exhalations. The artifacts may also distort your respiratory rate numbers, but I'm not sure about that. I'm also not sure whether the dented tops of your inhalation flow trace are also cardioballistic artifacts or whether they are FLs.

The EPR will probably feel different to you. For many people, it's considerably more comfortable than straight pressure, but even if that's true for you too, the different feel may get your attention for a night or two. You might try it out in the evening while you're watching TV or reading, just to get used to it.
Oscar software is available at https://www.sleepfiles.com/OSCAR/

PJ1S
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Re: Mild apnea; terrible sleep quality; how do these data look?

Post by PJ1S » Fri Nov 13, 2020 9:38 pm

Bless you all. Will definitely try these suggestions and post progress.

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Re: Mild apnea; terrible sleep quality; how do these data look?

Post by kteague » Sun Nov 15, 2020 5:12 pm

Hi. Any issues with RLS or periodic limb movements?

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PJ1S
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Re: Mild apnea; terrible sleep quality; how do these data look?

Post by PJ1S » Wed Nov 18, 2020 6:54 am

No issues with RLS or PLM. :)

Ok over the past few days I've done a couple gradual tweaks:

1. Set EPR to 2 for the first couple days, then to 3, per Miss Emerita's suggestion that this will reduce flow limitations.
2. Set min and max pressure both to 8.0 for a couple days, then to 8.6, under the assumption that pressure changes cause arousals.

Great news first:

1. For the past couple days on these settings I have NOT woken up with any anxiety/headache/pounding heart/shakiness/startle reflex feelings that have haunted me for months, AT ALL. Praise the Lord.

2. My flow limitations do seem a bit decreased, although still present.

I'm still dog-tired all day, so not getting completely restorative sleep yet, but I can actually function semi-normally and can cope with dog-tired infinitely better than with those hellacious PTSD symptoms.

Curious news next: Since being on min = max = 8.6 pressure and EPR = 3 for the past two days, I have been waking up multiple times a night with what seems to be frank nocturia: peeing a LOT, almost every hour. I've always woken up a few times a night but not with this urgency and amount of pee. I have made no obvious changes to my eating/drinking/meds (I took one 2mg tizanidine last evening for lower nerve pain, later than usual). I did have an MRI with IV contrast Monday morning, but I thought that would have flushed out of my system by now, and at any rate I have not observed increased urination during the day.

I could get another blood lab panel done - last one was fall 2019. They have always been pristine, even the non-standard panel things like TSH, CRP, etc. Glucose levels have always been fine; no indication anywhere of diabetes or pre-diabetes. My diet is largely vegetarian - fruits, nuts, veggies, whole grains, and I do aerobic exercise several times a week when functional.

Last night's data below. You can clearly see the 5 wake events, in each case preceded for several minutes by a change in respiration rate and also looks like maybe increased flow limitation. I did not include a zoom-in of the flow rate because it looks just like the last one I posted - lots of cardioballistic effects and a flattish inspiratory curve.

Thoughts??? I know CPAP is well-known to decrease nocturia; have not seen much about increasing it.
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weiss27md
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Re: Mild apnea; terrible sleep quality; how do these data look?

Post by weiss27md » Thu Nov 19, 2020 9:23 am

I see you got TSH done but have you got a full thyroid panel done including free T3 and free T4? Since you are a vegetarian you might have some B vitamin deficiencies like B-12. Look into info you might have a MTHFR gene mutation.

PJ1S
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Re: Mild apnea; terrible sleep quality; how do these data look?

Post by PJ1S » Fri Nov 20, 2020 7:19 am

I did have free T4 and B12 done in 2017 and 2018, when I changed sleep docs and did all the lab work over. Both spot in the middle of normal range.

Three consecutive days now of same phenomenon... Waking up almost exactly once an hour to pee all night. Oscar charts look almost identical to the ones I posted on Wednesday. I know there could be a myriad other reasons for this. Maybe just a strange coincidence that it started exactly when I changed settings and started EPR.

Guess I'll experiment some more and call my doc again.

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Re: Mild apnea; terrible sleep quality; how do these data look?

Post by PJ1S » Fri Nov 27, 2020 8:41 am

So I've been running a week or so at pressure around 9.0 and EPR of 3. Still minimal events but some flow limitations throughout the night; maybe a smidge less than before (see below). Also still feeling run down most every day.

Had a new patient appt with an ENT this week; he said the nose/throat/palate/etc. all look wide open and shouldn't be causing any obstruction. He recommended an sleep oximetry test and then if that looks suspicious then consider a drug-induced sleep endoscopy.

I had access to a consumer-grade recording finger pulse ox (brand EMAY) so did that last night and tabulated the results in Excel (I took it off every time I woke up to pee, so had to average the sessions).

Anyone have experience with this kind of data? Results seem to suggest mild ODI by the 3% threshold, despite <1 AHI. Never went below 91%. Device specs say margin of error in readings is +/-2%. My daytime readings hang around 94-95%. I do have mild persistent asthma. My wife's daytime readings on the same device hang around 97-99% and she has no lung disease.

Any thoughts about whether this is a worthwhile avenue to investigate further for possible correlation with crappy sleep? This device doesn't sync with OSCAR but just eyeballing the graphs on the app it comes with I don't see an immediate correlation with flow limitations. I know this is just one data point. :)

Thanks so much!
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