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Using Cpap for 8 months and exhausted
#1
Using Cpap for 8 months and exhausted
I have really been struggling. I was diagnosed with mild obstructive sleep apnea last year (7 events/night).  The test results said I had central sleep apnea episodes but they were not included in the diagnosis. This seems strange to me. 

After tomorrow when visiting my medical supplier (who swears I just need a new mask to suit my sleeping positions) I will be on mask #3 in 8 months. I am highly claustrophobic and can't use a full face mask or the one that sits on the nose. 

I had the mask that sits underneath the nose and it would just fall off. If I made it tighter I would feel like I can't breathe. I then got the one with the nasal pillows. It is worse. It constantly rubs under my nose and I have gotten 2 sores from it. I have a noticeably asymmetrical face (issues from Birth) and the strap hits me in the eye. My machine has a humidifier but I still have a really dry nose that bleeds and irritates my seasonal Allergies. 

I suffer from really horrible Nightmares every single night (the doctor told Me it was because I was having these episodes during R.E.M. sleep). However I have had nightmares right when I fall asleep and they will wake me up. I do not snore nor do I wake up gasping for air. I also suffer from horrible day time sleepiness. I do get sinus headaches often or if I have slept too long but not right when I wake up. 

I have consistently worn my mask every night. However I have been taking it off every night around the 4 hour mark. I do not remember waking up and taking it off ever. I just wake up and it's Off. 

My events range from 0-1 every night according to the app that collects the data (usually 0 or .02).  Lately I have been more tired than when I started treatment. 

The nightmares are worse and I have a hard time getting out of bed most mornings. I would probably sleep all day if allowed. The brain fog is worse (I can barely remember what day it is) and I feel like a slow motion zombie. I will feel really depressed and hopeless in the morning. I usually am unable to hold a thought in my head for longer than 3 seconds.

 Fiancé says I am giving excuses but I will randomly fall asleep while he is driving us to run errands or at home when sitting. I will be exhausted all day but when it is time to go to sleep, I have trouble sleeping (i think subconsciously I do not want to sleep). 

Has anyone else had this problem? I would be very grateful for some information. I fee this is a lot of symptoms for just mild obstructive sleep apnea. 

Thanks for your help!
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#2
RE: Using Cpap for 8 months and exhausted
I have also had my thyroid checked 4 times. Normal every time. I have a ramp feature on my machine and am not allowed to change it without doctors orders who has not contacted me since the second sleep study with the mask on.
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#3
RE: Using Cpap for 8 months and exhausted
I would ring up about the second sleep study, you may have fell through the cracks.
After not dreaming for years, REM sleep can evoke some pretty vivid dreaming/nightmares. The lab sleep study should have flagged any other of the common problems, like PLMD that disturb sleep. If you are randomly falling asleep during the day, you need to be further evaluated. It shouldn't happen from treated apnea and may indeed be something else.

I would make sure your machine has a SD card in it, the same as used in cameras and such. Then download the sleepyhead program at the top of the page and post some charts. This will show whether the cpap therapy is working well enough for you and forum members will give their opinions. You don't have to adjust your own pressures and can go back to your doctor to do this.
mask fit http://www.apneaboard.com/wiki/index.php...ask_Primer
For auto-cpap, from machine data or software. You can set the min pressure 1 or 2cm below 95%. Or clinicians commonly use the maximum or 95% pressure for fixed pressure CPAP, this can also be used for min pressure.
https://aasm.org/resources/practiceparam...rating.pdf
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#4
RE: Using Cpap for 8 months and exhausted
I originally went in thinking it was narcolepsy because I was falling asleep. I was set to do a study the next day after the sleep study. However the doctor canceled it because I went over the allowed 5 events per night and had 7 events. This is how it was explained to me. This is the second opinion. Before that I went to another doctor who called it just central sleep apnea but could not show me the report from my sleep study and was an all around horrible doctor. 

I have suffered from nightmares since I can remember. I remember all of them (some From when I was little). That's what I thought was causing the restless nights but according to the doctor it's just because I was having the events when I hit R.E.M. sleep which is why I was remembering them. I absolutely hate naps because they cause me to have sleep paralysis. But sometimes I can't keep my eyes open. Both the nightmares and sleep paralysis I have had for at least 15-20 years (I am 32). The day time sleepiness started more around 5 years ago. Well at least this severity of it.
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#5
RE: Using Cpap for 8 months and exhausted
Hey CarEY! Welcome.

there is something comforting about being able to relax and fade off, in a car (as a passenger), on the playground, in a hammock, listening to someone.  you can incorporate these things into a sleep pattern that fits for you.  think of things you can set up to hear or remind yourself of when you have your sleep paralysis.  look into REM behavior disorder (RBD) which has terrors and waking with no ability to move.  this is a real thing, and not an issue of having/not having sleep apnea.  team up with a support person that can provide assurances, start a music tape, carress the forehead, and help you through.  this may even be having specific things to see when you wake, a poster, a light, a particular color of wall, that tell you it is alright.

Good luck with both the terror and the apnea treatment.  help us help you see the data and what it means, so you can go and talk intelligently to the doctor about next moves.

QAL
Dedicated to QALity sleep.
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#6
RE: Using Cpap for 8 months and exhausted
Hi CarEY,
WELCOME! to the forum.!
Hopefully, you can get your sleep problems straightened out.
I wish you good luck with CPAP therapy, hang in there for more responses to your post.
trish6hundred
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#7
RE: Using Cpap for 8 months and exhausted
Thank you for the suggestions but they are not night terrors. Just nightmares. I never get up and act out the dream or sleep walk. I just wake up remembering the dream and thinking it was real. I have never been able to tell when I am dreaming. I have tried many times. I am able to tel when I have sleep paralysis though. The sleep paralysis is more annoying than anything. It's the nightmares I'm concerned about because I wake up restless and dont know I am dreaming.
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#8
RE: Using Cpap for 8 months and exhausted
reading through a couple of internet articles, I see your point that there is actually a common attribute to narcolepsy of having sleep paralysis, and seems to be tied to how well you transition to and from REM sleep.  of interest was the role of blood and brain CO2 levels during NREM and REM sleep.  the body seems to want less CO2 in the blood during some states and actively regulates to more CO2 in the blood for other states.

CPAP treatment can help to eliminate one of the shocks to oxygen and CO2 blood gas regulation.  The brain and body do need to get used to the new reality.  I hope your symptoms dull once the sleep apnea is reduced or eliminated from the equation.

QAL
Dedicated to QALity sleep.
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#9
RE: Using Cpap for 8 months and exhausted
*update*
I received a new under the nose mask but with nasal pillows to keep it in place. Medical supplier told me I need extra small nasal pillows and not a small. The hose attaches in the back! Thank God! I guess medical supplier got very concerned when he saw the red sores under my nose and on the nostril from the previous mask. He said this should help more with sensitive skin. After reviewing my data, I woke up around the hour and a half mark last night and took the thing off (shorter time than normal). I don't remember doing that. Despite upping the humidity and temp of the hose, my nose is unbearably sore this morning. There were water droplets in the hose this morning. The nightmares did not go away and the dry, sore nose is causing my head to hurt. I still feel like a zombie and it took 2 extra hours for me to get out of bed to walk my dog. The foggy feeling is still there and I have no motivation to move.

This is going to be a long day....hope this new mask works. Not sure what else to do...
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#10
RE: Using Cpap for 8 months and exhausted
I am not a doc, but my doc said that everything you mention is classic narcolepsy. There are two types- and having regular sleep paralysis is hallmark of narcolepsy. If you look up the user manual for the clinician for your machine, it should tell you how to get into the settings. However, if it is narcolepsy, you will need something else to treat that. (I have had similar symptoms for years but mine are not as prevalent or I would have been diagnosed with narcolepsy). Having sleep apnea does not rule out narcolepsy, they can be co-morbid, but it is very difficult to isolate them for diagnosis sometimes. Be persistent and relentless with the docs- sometimes they wait until everything is ruled out- or try others if you can. Also, keep a sleep diary, as detailed as possible, with the way you feel and the events you have.
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