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I feel horrible even while using APAP - advice?
#1
I feel horrible even while using APAP - advice?
37 year old male. Not overweight and never have been, no known health issues, fit body, 15" neck size and not a typical candidate for sleep apnea.

Since my early teenage years, I've felt exhausted. In-lab sleep study in March 2018 showed 4.7 AHI and 18.1 RDI. I only slept 2.75 hours for that whole sleep study and I honestly don't even remember sleeping at all. Buried in the back of the paperwork are my arousal indexes that nobody talked with me about:

REM: 2 total spontaneous. Arousal index of 18.5.
NREM: 44 respiratory, 10 snore and 77 spontaneous for a total of 131. Arousal index of 49.4.
Arousals: 45 Respiratory, 11 snore, 80 spontaneous for a total of 136. Arousal index: 49.3.
Awakenings: 2 snore, 2 spontaneous for a total of 30. Arousal index: 10.9.
Ar + Aw: 45 Respiratory, 13 snore and 108 spontaneous for a total of 166 arousals and awakenings combined over 2.75 hours. Arousal index: 60.2. No leg movements. No PLMS. No PLMS arousals. Something like 50 RERAs throughout the whole study.

Sleep doc said I didn't have sleep apnea because I was 0.3 AHI away from the required 5.0 AHI to diagnose it. Regarding the 18 RDI, he joked, "Good thing you have an active job or you'd be asleep in your chair if you had a desk job!" It wasn't funny. Yes, when I get off from work and take the bus home (I don't feel alert enough to drive and never have), I pop awake with hynogogic jerks like every minute because I'm dead tired. I also fall asleep in my computer chair at home and even in the car as a passenger. I have a person SPO2 monitor and have reviewed my pulse rate and oxygen levels throughout various nights. My oxygen levels never drop below the lower 90's, usually around 93 or so. My heart rate usually jumps to 90+ at various times throughout the night and sometimes goes as low as 42bpm.

After the in-lab sleep study, my ENT doc had a brain MRI done because I was having odd tremors that nobody could locate. I also had a CT scan of the sinuses. Deviated septum was noted and I also had enlarged turbinates. Had turbinate reduction surgery and septoplasty. Both were a complete success and my breaths are quick to inhale and exhale now. It used to take 2-3 seconds to inhale and exhale a breath. But it didn't help my sleep issues. Those tremors went away after a short time. Never figured out what they were. I went to a local clinic, they did blood work and I fainted for 15 minutes when they got half of a vial of blood. I had never done that in my life and I've had lots of blood tests. Woke up with everyone freaking out and I saw 60/60 blood pressure on the machine in front of me and my pulse rate was 52bpm. I've had people online suggest that I have UARS with the high RDI and low AHI, so they said that was likely something called vasovagal syncope somehow attributed to UARS.

I requested my own mail-order home sleep study (no doc referral required). 5.2AHI. Mild to moderate sleep apnea with a warning that it could be even worse than that because their home study isn't as accurate as in-lab. Longest apnea was 85 seconds. Hypopneas and apneas averaged about 20-30 seconds. Pulse rate shoots up to 90+ and drops down to lower 40's. Oxygen levels did not drop below the lower 90's, even with that 85 second apnea. No central sleep apnea was noted in the lab or in the home sleep study and both could detect it.

I used the home sleep study to go to my ENT doc because the sleep doc wanted me to keep coming back for visits and wasn't helping. They wouldn't give me a CPAP. The ENT doc wrote me a prescription to get the Air Sense 10 Autoset APAP that I had been researching and they wrote a general 4-20 pressure setting.

I've tried a few different masks. Best results were with the Dreamwear gel nasal pillows. One night I achieved a literal flat 0 AHI with 0L/Min leak rate and 0 centrals. I mouth tape using a couple of strips of paper tape because I'm prone to puffing air out of pursed lips if I don't. Don't want to try a mouth guard or dental appliance due to previous dental work. Over a period of weeks, I noticed that my max pressure always stopped at 8.9 on APAP. Starting and minimum pressure are 6.2. On bad nights, it can jump up to 10 max pressure. On regular nights, it always stops at 8.9. I typically average 0.5 to 1+ AHI. A "bad" night might be 1 to 1.5.  I see Clear Airway events showing up in Oscar software, but I think it misdiagnoses them as central apneas when they're likely RERAs that it can't properly detect.

I'm popping awake a lot throughout the night (I record myself with a house security camera while sleeping) even with my APAP machine and numbers lower than most successful people tend to have. I have been a very "jumpy" person since I was a kid and still now at 37. Didn't get sleep study until the age of 36. High school was a big struggle. To this day, I still can't focus enough to drive a vehicle (scared I'll have a wreck - I feel that tired and unfocused even after a full night of sleep with the machine).

At this point, what steps should I take? Machine is lowering my AHI. Unknown if it is working on REM-related RERA's and/or UARS if I have it.

In-lab study and home study both said I don't have central sleep apnea, so I feel reasonably sure that I don't even though my machine shows centrals if the pressure goes up higher or if I have a bad night with a little higher AHI like 1-2.No odd limb movements noted on the in-lab study. Central apneas do show up on my sleep numbers in Oscar sometimes if I have a bad/unrestful night while using the machine. Even then, they're like 0.5 and happen only when I'm extremely tired from days before when I didn't rest well. When fully rested, I don't get them. They also seem to kick in when my machine kicks up the pressure, so I'm not convinced that I have central sleep apnea. Yet at the same time, there are times when I feel like my body just stops breathing for seemingly no reason at night and it doesn't seem like an apnea. It is like I turn over and "remember" to breathe or something. It seems like central, but I don't think it is central and results from the in-lab and home sleep study are not agreeing with that assumption either. Is there anything else other than central sleep apnea that can make you have pauses in your breathing that aren't obstructive?

I've noticed from my APAP results in the Oscar sleep software that my hypopneas/apneas happen after usually an hour or two of sleeping and start the most when I'm in deeper sleep after 2-3 hours. Since I only slept 2.75 hours for the in-lab study, they didn't see what may have been a bulk of them for the later half of the night in deeper sleep. Yet they did puck up the large amount of RERAs over that time.

Among that time for the in-lab study, I got 44 minutes of N1 sleep, 86.5 minutes of N2 sleep, 28.5 minutes of N3 and 6.5 minutes of REM sleep.

Latency results from in-lab study:  N1: 4.1 minutes. N2: 20.1 minutes. N3: 116.6 minutes. REM: 228.6 minutes.

On my Air Sense 10, my obstructive apneas and hypopneas seem to be treated beautifully. 1 AHI or below every single night if I keep good sleep hygiene, very low leak rate typically between 4L/Min to 0L/Min with my Dreamwear mask. However, I feel that I am still exhausted and I have no idea why. Should I be adjusting pressure UP to treat those RERAs? Current minimum settings are 6.2 starting and minimum (for consistency) and max pressure set at 9.0 because my auto settings always go up to 8.9, so I simply set it for 9 as the bar to reach. If I let it go over that, I start getting central apneas, which I think may be possible misinterpreted RERA's. 

Should I up my max pressure to a higher setting? I'm starting to think that the central apneas that show up do not matter and that's UARS after my obstructives are taken care of.

I wake up after 8+ hours feeling like I just went to bed, my heart is racing, my face feels flush and looks red, my eyes look red and tired, etc. Yet I do have days when I feel a bit energetic once I'm up. Right after work, once I board the bus to go home, I literally fall asleep on the bus. After 10-15 minutes, I wake up and I'm okay for the rest of the day, just tired.

I don't fit any of the symptoms of Narcolepsy. I'm going to get blood work in the near future. Does this sound like UARS or maybe something on top of sleep apnea?
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#2
RE: I feel horrible even while using APAP - advice?
Set your minimum to 9, and your maximum up to 11 or then 12, and give it some time. Weeks if not months.
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#3
RE: I feel horrible even while using APAP - advice?
(10-30-2019, 10:49 PM)jmr106 Wrote: 37 year old male. Not overweight and never have been, no known health issues, fit body, 15" neck size and not a typical candidate for sleep apnea.

Since my early teenage years, I've felt exhausted. In-lab sleep study in March 2018 showed 4.7 AHI and 18.1 RDI. I only slept 2.75 hours for that whole sleep study and I honestly don't even remember sleeping at all. Buried in the back of the paperwork are my arousal indexes that nobody talked with me about:

REM: 2 total spontaneous. Arousal index of 18.5.
NREM: 44 respiratory, 10 snore and 77 spontaneous for a total of 131. Arousal index of 49.4.
Arousals: 45 Respiratory, 11 snore, 80 spontaneous for a total of 136. Arousal index: 49.3.
Awakenings: 2 snore, 2 spontaneous for a total of 30. Arousal index: 10.9.
Ar + Aw: 45 Respiratory, 13 snore and 108 spontaneous for a total of 166 arousals and awakenings combined over 2.75 hours. Arousal index: 60.2. No leg movements. No PLMS. No PLMS arousals. Something like 50 RERAs throughout the whole study.

Sleep doc said I didn't have sleep apnea because I was 0.3 AHI away from the required 5.0 AHI to diagnose it. Regarding the 18 RDI, he joked, "Good thing you have an active job or you'd be asleep in your chair if you had a desk job!" It wasn't funny. Yes, when I get off from work and take the bus home (I don't feel alert enough to drive and never have), I pop awake with hynogogic jerks like every minute because I'm dead tired. I also fall asleep in my computer chair at home and even in the car as a passenger. I have a person SPO2 monitor and have reviewed my pulse rate and oxygen levels throughout various nights. My oxygen levels never drop below the lower 90's, usually around 93 or so. My heart rate usually jumps to 90+ at various times throughout the night and sometimes goes as low as 42bpm.

After the in-lab sleep study, my ENT doc had a brain MRI done because I was having odd tremors that nobody could locate. I also had a CT scan of the sinuses. Deviated septum was noted and I also had enlarged turbinates. Had turbinate reduction surgery and septoplasty. Both were a complete success and my breaths are quick to inhale and exhale now. It used to take 2-3 seconds to inhale and exhale a breath. But it didn't help my sleep issues. Those tremors went away after a short time. Never figured out what they were. I went to a local clinic, they did blood work and I fainted for 15 minutes when they got half of a vial of blood. I had never done that in my life and I've had lots of blood tests. Woke up with everyone freaking out and I saw 60/60 blood pressure on the machine in front of me and my pulse rate was 52bpm. I've had people online suggest that I have UARS with the high RDI and low AHI, so they said that was likely something called vasovagal syncope somehow attributed to UARS.

I requested my own mail-order home sleep study (no doc referral required). 5.2AHI. Mild to moderate sleep apnea with a warning that it could be even worse than that because their home study isn't as accurate as in-lab. Longest apnea was 85 seconds. Hypopneas and apneas averaged about 20-30 seconds. Pulse rate shoots up to 90+ and drops down to lower 40's. Oxygen levels did not drop below the lower 90's, even with that 85 second apnea. No central sleep apnea was noted in the lab or in the home sleep study and both could detect it.

I used the home sleep study to go to my ENT doc because the sleep doc wanted me to keep coming back for visits and wasn't helping. They wouldn't give me a CPAP. The ENT doc wrote me a prescription to get the Air Sense 10 Autoset APAP that I had been researching and they wrote a general 4-20 pressure setting.

I've tried a few different masks. Best results were with the Dreamwear gel nasal pillows. One night I achieved a literal flat 0 AHI with 0L/Min leak rate and 0 centrals. I mouth tape using a couple of strips of paper tape because I'm prone to puffing air out of pursed lips if I don't. Don't want to try a mouth guard or dental appliance due to previous dental work. Over a period of weeks, I noticed that my max pressure always stopped at 8.9 on APAP. Starting and minimum pressure are 6.2. On bad nights, it can jump up to 10 max pressure. On regular nights, it always stops at 8.9. I typically average 0.5 to 1+ AHI. A "bad" night might be 1 to 1.5.  I see Clear Airway events showing up in Oscar software, but I think it misdiagnoses them as central apneas when they're likely RERAs that it can't properly detect.

I'm popping awake a lot throughout the night (I record myself with a house security camera while sleeping) even with my APAP machine and numbers lower than most successful people tend to have. I have been a very "jumpy" person since I was a kid and still now at 37. Didn't get sleep study until the age of 36. High school was a big struggle. To this day, I still can't focus enough to drive a vehicle (scared I'll have a wreck - I feel that tired and unfocused even after a full night of sleep with the machine).

At this point, what steps should I take? Machine is lowering my AHI. Unknown if it is working on REM-related RERA's and/or UARS if I have it.

In-lab study and home study both said I don't have central sleep apnea, so I feel reasonably sure that I don't even though my machine shows centrals if the pressure goes up higher or if I have a bad night with a little higher AHI like 1-2.No odd limb movements noted on the in-lab study. Central apneas do show up on my sleep numbers in Oscar sometimes if I have a bad/unrestful night while using the machine. Even then, they're like 0.5 and happen only when I'm extremely tired from days before when I didn't rest well. When fully rested, I don't get them. They also seem to kick in when my machine kicks up the pressure, so I'm not convinced that I have central sleep apnea. Yet at the same time, there are times when I feel like my body just stops breathing for seemingly no reason at night and it doesn't seem like an apnea. It is like I turn over and "remember" to breathe or something. It seems like central, but I don't think it is central and results from the in-lab and home sleep study are not agreeing with that assumption either. Is there anything else other than central sleep apnea that can make you have pauses in your breathing that aren't obstructive?

I've noticed from my APAP results in the Oscar sleep software that my hypopneas/apneas happen after usually an hour or two of sleeping and start the most when I'm in deeper sleep after 2-3 hours. Since I only slept 2.75 hours for the in-lab study, they didn't see what may have been a bulk of them for the later half of the night in deeper sleep. Yet they did puck up the large amount of RERAs over that time.

Among that time for the in-lab study, I got 44 minutes of N1 sleep, 86.5 minutes of N2 sleep, 28.5 minutes of N3 and 6.5 minutes of REM sleep.

Latency results from in-lab study:  N1: 4.1 minutes. N2: 20.1 minutes. N3: 116.6 minutes. REM: 228.6 minutes.

On my Air Sense 10, my obstructive apneas and hypopneas seem to be treated beautifully. 1 AHI or below every single night if I keep good sleep hygiene, very low leak rate typically between 4L/Min to 0L/Min with my Dreamwear mask. However, I feel that I am still exhausted and I have no idea why. Should I be adjusting pressure UP to treat those RERAs? Current minimum settings are 6.2 starting and minimum (for consistency) and max pressure set at 9.0 because my auto settings always go up to 8.9, so I simply set it for 9 as the bar to reach. If I let it go over that, I start getting central apneas, which I think may be possible misinterpreted RERA's. 

Should I up my max pressure to a higher setting? I'm starting to think that the central apneas that show up do not matter and that's UARS after my obstructives are taken care of.

I wake up after 8+ hours feeling like I just went to bed, my heart is racing, my face feels flush and looks red, my eyes look red and tired, etc. Yet I do have days when I feel a bit energetic once I'm up. Right after work, once I board the bus to go home, I literally fall asleep on the bus. After 10-15 minutes, I wake up and I'm okay for the rest of the day, just tired.

I don't fit any of the symptoms of Narcolepsy. I'm going to get blood work in the near future. Does this sound like UARS or maybe something on top of sleep apnea?

hi, wellcome

It looks one more textbook UARS case. Let us make sure when your OSCAR charts come in.

good luck
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#4
RE: I feel horrible even while using APAP - advice?
Hi jmr106 and welcome to Apnea Board. Get OSCAR from the link at the top banner, and using an SD card in your CPAP to save and import sleep data into OSCAR on your PC, you'll be able to post info. This helps us here at AB suggest what needs adjusting. Also if you could post redacted for privacy screenshots of the sleep study it adds to the info if that's available.
Dave

I'm not a doctor in real or fictional life. My posts include opinions based upon user experience regarding CPAP therapy and should not be considered medically professional direction or advice.


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#5
RE: I feel horrible even while using APAP - advice?
(10-30-2019, 10:49 PM)jmr106 Wrote: Does this sound like UARS ...?

At first blush, yes. And there are a number of us here with current and active threads on how we've dealt with UARS that may give you some ideas.
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#6
RE: I feel horrible even while using APAP - advice?
(10-31-2019, 04:02 AM)Sheepish Wrote: Set your minimum to 9, and your maximum up to 11 or then 12, and give it some time. Weeks if not months.

Not saying there is anything wrong with that, but what is the general reasoning behind this method? Is it simply that the max that the APAP has determined that is needed on most night is just under 9 and setting the minimum to 9 might reduce all (or most) of the apneas/RERAs for the entire night theoretically? Would that also (hopefully) eliminate UARS, as well?  My understanding from research is that UARS is like a lesser form of sleep apnea that is more than a snore but less than actual apnea. More of a narrowing of the airway and slowing of breathing than actually stopping breathing. So I would assume that it should theoretically take a little less pressure to clear the UARS issues than it would to clear an actual apnea event.

Should I hold off on bloodwork? My last medical tests about 1.5 years ago didn't show anything wrong and we did a lot of blood work including thyroid and such. Nothing was wrong with it and they couldn't figure out why I fainted or had any of my symptoms. My reflexes are over-reactive. Even a tap of the knee by docs results a lot stronger kick than normal reflexes. I get "core jumps" and odd reflexes where if something brushes my hair, I get a full-body jerk that seems to start somewhere in my lower to mid back. I have heavy jumps when doing something like lifting weights or even situps. So lots of odd reactions. When I was at the doctor getting blood work, the doctor noted how when I sat back on the inclined chair and my hair brushed the back of the chair that my body automatically jumped in an unnatural way. A visit to a neurologist resulted in a full check-over and she said I have healthy reflexes for someone my age despite my mild tremors (only visible when holding something like a piece of paper) or when exercising. If I am carrying something and almost drop it, I get a stronger jerk reaction than most people. I find that I'm more jumpy and jerky when I'm more tired than usual. Is that somewhat normal for being really low on sleep? At 37, I suspect this has been going on for a long time.

I also have tibial torsion in my legs (the left is the worst and barely in the right). So basically the tibia bones formed rotated in the legs. I have wondered for a long time if it wasn't from some kind of growth defect when I was younger due to poor sleep when I was developing more as a pre-teen to teenager. I know that I slept horribly back then and my family was too poor for many doctor visits. Nobody knew much about sleep issues back then.
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#7
RE: I feel horrible even while using APAP - advice?
(10-30-2019, 10:49 PM)jmr106 Wrote: The ENT doc wrote me a prescription to get the Air Sense 10 Autoset APAP that I had been researching and they wrote a general 4-20 pressure setting.

That's like the weatherman saying there's a 0% to 100% chance of rain.

(10-30-2019, 10:49 PM)jmr106 Wrote: Current minimum settings are 6.2 starting and minimum (for consistency) and max pressure set at 9.0 because my auto settings always go up to 8.9, so I simply set it for 9 as the bar to reach.

That's still too low to be effective in just about every case.

Do have those blood tests, however, if nothing else to rule things out.
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#8
RE: I feel horrible even while using APAP - advice?
Here is my Oscar screenshot from last night. It was only about 6 hours. I find that I have more events when I sleep less, which seems to be pretty common. The more tired you are, the more events and worse they can potentially be.

However, I have files from previous days where I slept like 5.5 hours and I had very little events and an AHI of 0.19 with a total apnea time of 13 seconds for that entire time period, so it seems to switch up on me.


Here is my current issue with my mask that I'm also trying to solve:

I started with the ResMed P10 mask. Very quiet and decently comfortable, but that hose in the front is awful. I got tangled in it constantly and pulled it off after usually an hour.

I got the Dreamwear gel nasal pillow mask that also with the full face mask combo as part of a kit. Couldn't wear the full face mask. It rests just under my nose between the nose and upper lip and after just a 3 hour nap one afternoon to try it out, it felt like someone broke my nose when I pulled the mask off. The nasal pillows work well, but they take a few tries to adjust when I'm first going to bed. If they aren't centered properly in my nostrils, then I'll have the issue where one side is breathing well and the other feels like it is partially breathing through that side of the nasal pillow because it might be angled more than it should be. I get it right after a couple of minutes, but if I'm breathing heavily when I first go to bed, I feel like I'm suffocating with that mask even with the starting pressure above 6. It isn't the pressure, it is the way the mask is and it somehow seems to limit air flow. It may be that increase the minimum air pressure might help solve that issue. The mask simply seems to have a slower flow rate for some reason. The gel nasal pillows are comfortable, however. I've achieved 0L/Min leak rate with this mask and a flat 0.0 AHI on one night before. I use a couple of strips of paper tape because I puff air out of my mouth if I don't. I don't really care for mouth guards. I love that the hose swivels on top of the head, so I can sleep on my side or back and there's no house to tangle in because my machine is about 1.5 feet away at the head of my bed on a table.

My tongue is typically scalloped every single day. Some days it is visibly swollen more than others or gets canker sores around the edge, making it frustrating to speak.

My third mask is actually my favorite. P30i. I love this mask and want to stay with it, but I have reverted back to the Dreamwear nasal mask because the silicone nasal pillows on the P30i stab into the side of my nose for some reason. I woke up with my nose bleeding on the right side one time. Small, medium and large pillows came with it, but only the mediums fit properly. The large ones allow instant leaks that I can't get under control and won't even attempt to go to bed using. The medium ones slide into my nose a little bit and my leak rates tend to be in the teens and up to an alarming 31L/Min some nights. I don't hear any actual leaks from the nasal pillows or nostrils, however. I mouth tape, so no leaks there. Not sure why the P30i has big leaks compared to the Dreamwear that I have had very low leak rates with, however. Anybody have any tips to lower that leak rate? I breathe SO much better with the P30i than I do with the Dreamwear mask, but I feel more energetic because of the lower leak rate with the Dreamwear, so catch-22.


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#9
RE: I feel horrible even while using APAP - advice?
Actually, that looks pretty darn good. Give it time. It's not like taking a Shazam pill.
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#10
RE: I feel horrible even while using APAP - advice?
OK,  I'd like you to make some changes.
1. Turn off the Ramp. Your pressures are low, and you shouldn't need it
2. Set EPR= Full Time.  It is currently set to Ramp Only,  Your Sleep Study showed a large number of RERAs and your Flow Limitations are low but they are fairly consistent, and per the thread title, you feel horrible, and this should help with that

At the end of your initial post you asked "is this UARS?" and based on your Sleep Study says that is a real possibility.
Based on your latest daily charts, the answer is that it is less likely.

Setting EPR = Full Time (it is already set to 3) will help with your Flow Limitations and RERAs (only one on your latest daily).

Do that and see how you feel.
Fred Bonjour - Project Manager and Lead Tester for OSCAR - Open Source CPAP Analysis Reporter 
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