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Help preparing for first doc visit in 4 years
#1
Help preparing for first doc visit in 4 years
Hi Everyone,

I've got an appointment with my sleep doc later in September to discuss where to go next with my treatment.  I've been on CPAP since 2018 and have had very low AHI from the moment I put a CPAP on.  I feel 100x better than without treatment but I'm still tired most days and feel like my work is impacted. I'm still tired during the day without ample caffeine.


Here's my original sleep study showing mostly Hypopneas.

   


I've tried around a dozen different masks and just about every pressure range between 5-14 as well as EPR=0,1,2,3.  Nasal cushion seems to be the best option for me as bigger nasal masks or pillows leak from pushing against my pillow.

I have to use EPR=2 or EPR=3 to get rid of flow limitations and help with aerophagia.  I have some aerophagia no matter what I do if my min is over 7.6 or so.  Aerophagia is worse when I have heartburn which I take a bunch of medicine for.

My main issues that I want to talk to my doctor about are
  1. Waking during the night.  I used a webcam to film myself sleeping several nights and notice that I toss and turn a few times an hour and the webcam often shows me momentarily opening my eyes before rolling over to fall back asleep.
  2. Pulse spikes throughout the night
  3. Aerophagia
  4. Potentially unregistered flow limitations?
Here's a recent night where my pulse spikes several times from 60 to 100 or higher

   


Here's a zoom on some of the breathing I think might still be flow limited despite not being flagged?  Or is this just cardioballistic effect?

   


Most nights I have very few legit events flagged.  Mostly just arousal that register as CAs or OAs, but are preceded by a spike in flow rate.  Often worse around REM sleep.


I've tried higher pressures to see if that made my breathing less bumpy but then aerophagia is intolerable and wakes me up.


Is there anything else you would specifically want me to call out with my doctor in a few weeks, or anything I should try in the meantime?



My old original treatment thread from a few years ago can be found here where very kind people helped me realize I needed higher pressure and EPR to get my flow limits down. http://www.apneaboard.com/forums/Thread-...imitations
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#2
RE: Help preparing for first doc visit in 4 years
And here's another night with somewhat lower minimum pressure.  The OAs were arousals. Most of the CAs were also arousals.


   

   

   
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#3
RE: Help preparing for first doc visit in 4 years
Hi.  Pretty much everyone, especially over the age of 50, is going to wake up at least once during the night, and that is often to void.  But, we toss and turn much more frequently, up to three times each hour...typically, with variance.  This is concurrent with arousals.  If one falls asleep again in seconds, which 90% of us do, then one needn't worry unduly.

Your pulse will spike for at least two reasons unrelated to arrhythmias, treated or untreated, diagnosed or not. They will spike during REM and dreaming, and they'll spike when you encounter prolonged hypopneas/obstructive/central events.  They'll spike if those events happen in a short length of time, or when any one of them goes much longer than about 15 seconds.

By virtue of our physiology, we swallow several times each hour.  Our position doesn't matter, but it's much worse on our backs, both for flow limitations and obstructive events and for swallowing air.  If you can train yourself to minimize time spent supine, you'll have much better therapy and less aerophagia...generally, again with variance from person-to-person.

The body's normal behaviors, empirically, are repetitive and varied.  The duration, duration of onset, refractory periods, and frequency, all vary considerably as one's ECG will clearly show.  Heart rhythm, for example, is not the oft-quoted lub-dub, lub-dub, but more like lub-dub....lub-dub, lub-dub...lub-dub...lub-dub, which you can appreciate renders it useless as a time-piece. If the machines, which are rather refined by this point in their evolution and engineering, decline to record an event, it is very likely to be completely innocuous. That is to say, if there is no record of a flow limitation, it probably doesn't matter.  If they are exceedingly frequent, say three or four a minute, and go on for much of the night, about the only thing one could do is to detect it empirically using SPO2 as a metric, with a time metric that would let you associate it with your PAP record.  That would mean an additional cost to you, another machine to replace in time, and having to accommodate another sensor during your rest.   But your SPO2 over the length of your sleep would pinpoint if you are becoming hypoxic.
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#4
RE: Help preparing for first doc visit in 4 years
Thank you very much for the reply mesenteria.  I'm in my 30s and the brief arousals and tossing and turning could fall within the range of what is normal. I'm mostly grasping at straws to try to explain my lingering tiredness and difficulty focusing.  The fact that my flow rate exhibits frequent M and slanted top shapes even at 13cmH20 has me hoping that there is something I can change about my therapy that would help but I could be trying to optimize beyond the point of diminishing returns.

I have an o2ring and while it does show 3% desaturations happen a fair bit I don't get to 4% very often and the lowest it's detecting most nights is 91-93% Sp02.  The heart rate variation in my graphs looks more spiky than what I've seen other people post but you are correct that the spikes are more often than not during REM or after a brief arousal corresponding to a reduction in flow or "M" shaped tops on my breathing.

I learned recently that my family does have a history of thyroid issues so I might see if my doctor wants to run labs to check those levels as a possible explanation for tiredness despite years of CPAP compliance.
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#5
RE: Help preparing for first doc visit in 4 years
I think you're smart to ask your doctor to run some tests to see whether your tiredness has some other source. For you, thyroid would be an obvious test. Others might include testosterone, iron, and autoimmune disease. A sed rate, while non-specific, could be useful too.

It might be helpful in your conversation with him or her to describe your tiredness as fully as possible. Do you often feel as though you want a nap? Do you feel more tired after exertion? Do you feel tired from the time you get up, or only starting later in the day? Do you feel wiped out, as you might with flu? Do you have difficulty concentrating, thinking of the words for things, or understanding a line of thought? Do you just feel blah, with no energy to tackle things you'd like to do? Do you feel glum or pessimistic a lot of the time? -- Answers to questions like that could help.
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#6
RE: Help preparing for first doc visit in 4 years
Had the doc visit.  They didn't look at my CPAP data at all beyond the very high level summary numbers.  They said my events were low and compliance was high so the issue probably was psychological/anxiety. They want me to try some therapy and melatonin to see if either of those help me to have more restorative sleep.  I requested a thyroid test and will see how those labs come back.

It was disconcerting that they didn't look at my sleep data at all beyond the top level summary numbers... but I guess that's the norm from what I've seen in other threads. I'm glad you all helped me to find better settings on my own a while ago.

I'll give the melatonin a try, see how the thyroid test comes back, and pursue sleep therapy for a while to see if that helps.
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#7
RE: Help preparing for first doc visit in 4 years
I'm glad you asked for a thyroid test and got one. Maybe the doctor is right about anxiety/depression -- well worth exploring. Check the meds you're being prescribed to see whether sleep disturbance or day-time sleepiness are potential side-effects. Fingers crossed you're going to be feeling better, one way or another.
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#8
RE: Help preparing for first doc visit in 4 years
If you are in a bit of a loop of anxiety and sleep loss, and then anxiety about the lack of sleep, etc, try meditation.  It's not rocket science.  Before I go to bed, I sit in a darkened room and try to find a quiet space between my ears.  It's a place that requires multiple steps to accomplish something, or it's a favourite walk, or playing a favourite piece of music to yourself (I'm a classical nut, so I can pick something serene).  The idea is to leave "...the cares of life's busy throng,' in the deep background, and to provide your mind with some distraction, calm and eventually sleep.  Ideally, your head will suddenly tilt and you'll realize you just began to sleep.  That's when you get up, get into bed, and begin the process again, except this time your head won't tilt to startle you awake.

I use melatonin and prescribed Zopiclone, but only every other day or every three days, and then only if I am running on fumes...something like 4 hours.  One quarter of the blue breakable tabs (using a pill cutter to break a half into a quarter accurately), provides only 1.7 mg of the substance, and for me it makes all the difference in the world.  I usually take it with melatonin, 5mg, and that buys me another couple of good days, but not always with melatonin.  On those occasions, it still works rather well to get me into the 5.5 hr range.

The body gets used to repeated processes, and that's why one should resist taking sleep aids AT LEAST for one night between repeated doses of either melatonin or another more powerful soporific. Also, the idea with melatonin supplements is to get your internal clock regulated again to sleep at a certain time and for a certain length of time.  Cheating yourself by varying sleep conditions, anything from the time you finally crawl into bed to whether or not you have snacked in the past hour, or even what temperature your room is on any one night, does nobody any good.
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#9
RE: Help preparing for first doc visit in 4 years
I've taken extended re;ease melatonin for about 5 years and it has really helped my sleep. Melatonin levels decline in older adults (I'm over 80) and isn't usually prescribed for younger folks as I understnd since their levels should be higher. Hopefully you will find what works!
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#10
RE: Help preparing for first doc visit in 4 years
I'm noticing that many of my arousals during the night are shortly after REM.  Waking between sleep cycles? Anyone else see a pattern like that in their data. 

For example, here's last night.
  • 11:15 I was on my back
  • 11:26 stirred and pulled blankets closer
  • 11:27:40 I rolled over with eyes open to side facing wife
  • 11:56 REM ENDS stir a few times over the next
  • 12:24 eyes open roll to face bathroom might be on stomach
  • 12:45 moved legs briefly
  • 1:35 REM ENDS roll on to back
  • 1:46 stir a little
  • 1:47 roll to face wife side
  • 3:01 REM ENDS roll to back.  maybe swallowed or coughed
  • 3:02 still on back with head tilted towards bathroom
  • 4:20 stir
  • 4:36 REM ENDS roll to face wife's side. eyes opened
  • 5:17 check time on watch and roll to face bathroom.  Think I had been awake for a few minutes before checking watch
  • 5:41 eyes open roll to stomach facing wife's side

All of the flagged events are preceded by a big inhale and exhale so I think I was just holding my breath while adjusting positions.  I've been trying out a static pressure the last several days, successfully avoiding aerophagia, and using melatonin some nights but it doesn't seem to be making a difference.



   
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