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[Diagnosis] Negative sleep study, still ordered a CPAP
#11
RE: Negative sleep study, still ordered a CPAP
(11-14-2020, 04:33 PM)Dormeo Wrote: Oh, I just realized your pressure chart's minimum is at 6, so it isn't showing anything less than that.  Could you rescale it so the minimum is 4?  Just right-click on the graph label to access those settings.

In general, you can see the EPR under machine settings in the panel on the left.  That line isn't visible in your screenshots, but you should be able to see it yourself.


I changed the pressure chart graph so it shows 4 as minimum. I couldn't get it cleaner than that as I had to change the graph style to default instead of autofit to atleast show 4 as minimum. OSCAR itself says EPR is on fulltime and set at 2. I hope you can do something with this information.

(11-14-2020, 06:25 PM)marasmus Wrote: I have been suffering from the exact symptoms you have mentioned in your first post. I am a psychiatrist and can tell you that the line between PTSD and Breathing Related Sleep Disorder have been blurred significantly in the last decade. However, nightmare is far from being only symptom of PTSD. What you may have been suffering from is significant flow limitations accompanied by arousals during your rem sleep ( your muscles are most relaxed during rem and your airway shrinks). As you experience these brief arousals during REM most of which do not reach to complete wakefulness yet enough to activate your memory retention, you end up remembering wild and crazy dreams. We remember the dreams from which we are awaken.

This is how I explain it. PTSD or any type of significant anxiety disorder leads to hyper-vigilance, which in turn leads to exacerbated response to external stimuli. Your brain believes that you are under constant threat. Thus, a flow limitation that would not cause any arousal for most of the population, may be enough to disrupt your sleep.

Now, this is where the tricky part comes. 99% of sleep specialists will not diagnose you with breathing related sleep disorders because most labs do not count flow limitations. I am not a sleep expert. However, I am not convinced that the machine you have is specifically good at addressing flow limitations while not causing further vigilance in your highly hyper vigilant state of mind.

That explains the low percentage of REM sleep for me. I also recognize the hyper-vigilance, during daytime and nighttime. I'm forwarding this to my GP during my appointment tuesday. I already feared it wasn't sleep apnea, but the symptons like heartburn at night, choking, restlesness - it all seemed so logical to be apneas. Maybe I was just looking for an easy cure. Have you managed to treat your sleep problems? And if so, how'd you do it? Was your conclusion for yourself at first also sleep apnea?

(11-14-2020, 07:19 PM)sheepless Wrote: "PLMnr_I 4,72 & 1.98 arousal"

I'm not quite sure what this means, presumably 72 periodic leg movements averaged to 1.98 plm arousals/hr?  

if so, not a lot of plm, but in my experience it doesn't take a lot of it to disturb sleep. plm is also quite variable so your test results may or may not reflect your typical night.  at any rate, plm is rarely addressed so I'm mentioning it here for you to keep in mind as a possible factor contributing to fragmented sleep, daytime sleepiness, possibly choking, maybe nightmares, etc.  respiratory response to plm includes flow limitations. be aware that resmed machines raise pressure ineffectively and disturbingly against plm induced flow limitations. this can be as or more disturbing than the plm itself. if you experience this, keep your pressure range to a minimum & limit max ipap to avoid swinging and runaway pressure.

I had no clue at first either, but it seems to mean periodic leg movements yes. I do move a lot in my sleep as heard from audio recordings of me at night. What would you suggest as pressure settings? I have 7 to 10 now, but I don't exactly know what to do with your advice regarding IPAP, I thought only BiPaP machines help with positive and negative air pressure. I have a CPAP, so could you elaborate?


This was last night with the new settings. The clear airway events are from adjusting my mask as I couldn't fall asleep yet. I fell asleep after an hour or so, but woke up 2 hours later unable to fall asleep again. I took off my mask and fell asleep normally. I'll try again tonight, but I find the lower EPR and the APAP settings more difficult to fall asleep with.


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#12
RE: Negative sleep study, still ordered a CPAP
I have not yet found a good solution to my sleep problems unfortunately. It seems to me that treatment of upper airway resistance syndrome is a little bit of science and a lot more about trial and error. Bilevel seems promising but unless you find a sleep specialist that titrates the machine for you, which is probably harder than finding a psychiatrist who performs tonsillectomy, the chances of finding the right pressures is slim and may take months if not years.

Some studies show mandibular advancement device helps but again no good data there to generalize. Sleep surgery is hit or miss and again the data is mixed. I would start from the least invasive methods such as decreasing BMI and MAD and walk my way through XPAP and surgery.

Good Luck
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#13
RE: Negative sleep study, still ordered a CPAP
(11-15-2020, 07:34 AM)marasmus Wrote: I have not yet found a good solution to my sleep problems unfortunately. It seems to me that treatment of upper airway resistance syndrome is a little bit of science and a lot more about trial and error. Bilevel seems promising but unless you find a sleep specialist that titrates the machine for you, which is probably harder than finding a psychiatrist who performs tonsillectomy, the chances of finding the right pressures is slim and may take months if not years.

Some studies show mandibular advancement device helps but again no good data there to generalize. Sleep surgery is hit or miss and again the data is mixed. I would start from the least invasive methods such as decreasing BMI and MAD and walk my way through XPAP and surgery.

Good Luck

That's a shame. Have you had sleep studies done? Does you BiPap offer any degree of comfort? And thank you, sadly humans are full of diseases, disorders, defects, whatever. Life is not perfect, were it only so easy.
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#14
RE: Negative sleep study, still ordered a CPAP
"This was last night with the new settings. The clear airway events are from adjusting my mask as I couldn't fall asleep yet. I fell asleep after an hour or so, but woke up 2 hours later unable to fall asleep again. I took off my mask and fell asleep normally. I'll try again tonight, but I find the lower EPR and the APAP settings more difficult to fall asleep with."

That was a useful night as far as providing information for further adjustments. Ordinarily, it'd be best to wait a few night before changing anything, since sleep is naturally variable, but I would suggest you can now increase EPR back to 3. It will be good to get you to a point where you can sleep longer with the machine.

I'm not sure what it is about the pressure settings that felt more difficult to you. Was it the variation during the night? Or the higher pressure, when it went up? You could try min = max = 8 and see whether that's any better.

You might benefit from doing some acclimation during the day or evening. Set up your machine outside your bedroom and use it for an hour or two while you read or watch TV -- something mildly diverting. This helps your brain understand that it's OK to have this strange experience.
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#15
RE: Negative sleep study, still ordered a CPAP
Bilevel seems promising but unless you find a sleep specialist that titrates the machine for you, which is probably harder than finding a psychiatrist who performs tonsillectomy, the chances of finding the right pressures is slim and may take months if not years.

That's a very pessimistic statement.  From the help on this forum, I have been able to get pretty good results for my UARS in under 3 weeks using a ResMed Aircurve 10 VAuto.  Your results may differ, but it is possible with perseverance and guidance from AB.  Just a counterpoint.
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#16
RE: Negative sleep study, still ordered a CPAP
Happy for you that you found a relief. I do not want to sound like relief is not possible. It is just a rough path and odds are not in your favor especially if you want to follow the conventional sleep medicine as it is practiced in the USA. I'm new to this forum I can not comment on the success rates here. However as a clinician, I can assure you all that as a medical community we fail our UARS patients big time.
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#17
RE: Negative sleep study, still ordered a CPAP
(11-15-2020, 04:42 PM)marasmus Wrote: Happy for you that you found a relief. I do not want to sound like relief is not possible. It is just a rough path and odds are not in your favor especially if you want to follow the conventional sleep medicine as it is practiced in the USA. I'm new to this forum I can not comment on the success rates here. However as a clinician, I can assure you all that as a medical community we fail our UARS patients big time.

You and I are going to get along just fine, as we are in complete agreement.  It has to be tough to be associated with such a group of losers. Just the recognition that the profession fails its clients in anything but "plain vanilla" OSA, is something we deal with a lot here.  On this forum, we strategically apply pressure support and even trigger sensitivity and advanced adaptive pressure support to deal with very complex problems. Something we see a lot of is positional apnea that is not solely treated with pressure.  I hope you will invest some time to look at the diversity of problems that have been successfully addressed here, as well as negotiating advice we offer to members to deal with Doctor Duck.
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#18
RE: Negative sleep study, still ordered a CPAP
based on this last chart, you're doing well from an apnea treatment standpoint. maybe you're particularly sensitive to flow limitations but you didn't have a lot, barely making an entry in the 95%tile column, so I question whether uars is a problem. the flow rate isn't terribly ragged (which I'd expect with plm and arousals in general) except maybe in the beginning when you were probably not quite asleep. the cluster of ca is probably waking/dozing and not 'real' since you had no others during that 3+ hour session.

your fragmentation and other problems you mentioned are probably unrelated to sleep disordered breathing. it's hard to tell from your chart if plm is a factor; I kind of doubt it but search sheepless and plm on this site to find some screenshot examples of what it looks like in the flow rate. movement can cause breathing disturbances and breathing (and other) disturbances can cause movement so you have to make some educated guesses based on the oscar charts and your assessment of your experiences to try to figure it out. a video camera might shed some light on what's going on; even a sound triggered audio recorder like in a snore or sleep app can be informative.

your range of 7-10 is reasonably tight and 10 cmw is pretty low and doesn't bother most people so I can't suggest any changes related to what I said above. just keep plm in the back of your mind. if it turns out to be a factor, about all you can do is ask your doc about it. some only need supplements (like iron), others need to try various prescription meds for it.

I'm thinking your best bet, while continuing to investigate with your doctors, is to look into cognitive behavioral therapy for insomnia, as suggested by Shadowpup above.
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#19
RE: Negative sleep study, still ordered a CPAP
(11-15-2020, 01:04 PM)Dormeo Wrote: "This was last night with the new settings. The clear airway events are from adjusting my mask as I couldn't fall asleep yet. I fell asleep after an hour or so, but woke up 2 hours later unable to fall asleep again. I took off my mask and fell asleep normally. I'll try again tonight, but I find the lower EPR and the APAP settings more difficult to fall asleep with."

That was a useful night as far as providing information for further adjustments.  Ordinarily, it'd be best to wait a few night before changing anything, since sleep is naturally variable, but I would suggest you can now increase EPR back to 3.  It will be good to get you to a point where you can sleep longer with the machine.

I'm not sure what it is about the pressure settings that felt more difficult to you.  Was it the variation during the night?  Or the higher pressure, when it went up?  You could try min = max = 8 and see whether that's any better.

You might benefit from doing some acclimation during the day or evening.  Set up your machine outside your bedroom and use it for an hour or two while you read or watch TV -- something mildly diverting.  This helps your brain understand that it's OK to have this strange experience.

Changed the EPR back to 3, put pressure minimum 7 to max 8. It did feel much better than 7 to 10. I'm not sure if I can say that EPR is the cause or that the pressure is, but I suspect it's the EPR. I also put on the mask in the evening for 2 hours to get used to it. I was pretty tired at first, but the moment I put on my mask I was wide awake again. After 2 hours on with the mask I was still wide awake so took it off for a while and listened to a podcast and read a book to become tired. Finally at 1:30AM I became tired and went to bed. I slept fairly decent with the mask on, but when I woke up for the first time at 7AM I felt very claustrophobic with the mask one and had to take it off and sleep without it. Still tired as hell, so no improvements on that side.



(11-15-2020, 06:05 PM)sheepless Wrote: based on this last chart, you're doing well from an apnea treatment standpoint. maybe you're particularly sensitive to flow limitations but you didn't have a lot, barely making an entry in the 95%tile column, so I question whether uars is a problem.  the flow rate isn't terribly ragged (which I'd expect with plm and arousals in general) except maybe in the beginning when you were probably not quite asleep. the cluster of ca is probably waking/dozing and not 'real' since you had no others during that 3+ hour session.

your fragmentation and other problems you mentioned are probably unrelated to sleep disordered breathing.  it's hard to tell from your chart if plm is a factor; I kind of doubt it but search sheepless and plm on this site to find some screenshot examples of what it looks like in the flow rate. movement can cause breathing disturbances and breathing (and other) disturbances can cause movement so you have to make some educated guesses based on the oscar charts and your assessment of your experiences to try to figure it out.  a video camera might shed some light on what's going on; even a sound triggered audio recorder like in a snore or sleep app can be informative.

your range of 7-10 is reasonably tight and 10 cmw is pretty low and doesn't bother most people so I can't suggest any changes related to what I said above. just keep plm in the back of your mind. if it turns out to be a factor, about all you can do is ask your doc about it.  some only need supplements (like iron), others need to try various prescription meds for it.

I'm thinking your best bet, while continuing to investigate with your doctors, is to look into cognitive behavioral therapy for insomnia, as suggested by Shadowpup above.

I downloaded snorelab to record my sleep at night, so I'll have results of that tomorrow. I've used the app before but only once and it showed I was moving around a lot in my bed, especially during the later stages of sleep. Think constant turning and adjusting my head. Snoring happened only a few times, so I share your suspicion that it might not be breathing related at all. Still doesn't explain the GERD and cotton dry mouth for me (do you have any treatment ideas for that in the meantime) The GERD and cotton mouth is also why I was very sceptical of PTSD being a factor, I didn't expect that to be of influence in my stomach and mouth.
I'm also going to bring up PLM to my doctor just incase, hope she can do something with it. However, I read that PLM only seems to appear in the first half of sleep and that it's impossible to appear in REM sleep due to muscle atonia?

Thanks all for your detailed replies. I wish the medical field was as interested in my health problems as you are, haha.

I've added the OSCAR for last night below. Doesn't seem very indicative of apnea, if I'm not misstaken.


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#20
RE: Negative sleep study, still ordered a CPAP
Sleeprider , one of the reasons I joined this forum is to give insight to the people who have been suffering quite a long time from a standpoint of an MD and also learn from their experience so that I can improve my own sleep as well as my patients. It just hurts me to see that a lot of patients are unable to receive the appropriate care they need due to tackles in medical system. I have been suffering from UARS and being a physician I find myself struggling significantly navigating in the path through recovery and I probably can only imagine what patients have been going through. 

I would say this is an extremely important forum that gives hope and relief to patients. It needs to be supported and as a physician and a patient myself, I would do my best to contribute.
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