Sleep apnea without the apnea.

[peajay]

I have a CPAP machine I bought on Craigslist several months ago. At the time, I took it apart and wired it to my computer so that I could monitor my breathing while asleep, and I noticed that I'll breathe normally at first, then over several minutes my breathing will become weaker and weaker until it is almost nothing, and then I'll wake up. I wasn't sure what to make of that, but since the machine didn't seem to be helping with anything, I gave up after a trip to the hospital diagnosed me with an anxiety attack, and I subsequently wondered if all of my sleeping problems weren't simply anxiety.

Then yesteray, after several days of sleeping 12 to 14 hours a day, I was incredibly tired, sitting in a chair, staring at the floor, with my head leaning on my sholder, hardly thinking at all, pondering the vague and smudgy appearance everything had, and wondering what the problem could be. Being so tired certainly didn't seem like anxiety. I was so tired I couldn't hardly think, let alone worry about things. I thought again of sleep apnea and decided that must be the problem, since rather than being mentally disturbed, I instead seemed almost dead, or perhaps almost catatonic. Not anxiety, for sure.

So I tried the CPAP machine again last night. I was having a lot of problems making it comfortable enough to wear. At first air leaked a lot, so I shaved, and the mask made better contact with my face. Then my mouth was drying out, and it was kind of cold, so I covered some of the holes in the mask with tape to reduce the air flow. Then I found it was really difficult to breathe, but I was really tired, so I didn't care to fuck with it if it wasn't a major problem. Instead I just put extra effort into inhaling and exhaling for one breath, and then I felt better for a moment, only to soon feel as if I wasn't getting enough air again, and so I tried another deep and difficult breath. Finally I decided I had to remove the mask and figure out what the fuck the problem was, and at that point I woke up! I was asleep, dreaming about the mask preventing me from breathing, but as soon as I woke up I could breathe just fine, and so it wasn't the mask at all.

Unfortunately I don't still have the machine connected to the computer, so I have no record of the event, but I'd be surprised if it wasn't exactly as I experienced it in my dream.

With that I'm rather convinced that I do have sleep apnea, just without the apnea. That dream matches exactly what I was seeing on the computer data, which is that my breathing just becomes more difficult until I finally wake up, at which point it returns to normal.

I don't think it's entirely impossible that my $1200 sleep study missed this.

Long before my sleep study, I had already considered that I might have sleep apnea, and so to find out for myself, I used a temperature sensor to record the temperature of air traveling through a tube that I taped to a plastic bag that I taped to my face. I looked at the data on my computer the next day, and it looked almost entirely normal. Most of the data showed regular breathing, and the only interruptions were two second periods where I would stop breathing, followed by a deep breath. I figured that might just be normal, and the internet seems to indicate that sleep apnea is when people stop breathing for at least ten seconds, and so I decided I didn't have sleep apnea.

Years later, when I finally scored some health insurance and could see a real doctor, he looked in my mouth and immediately decided I must have sleep apnea because something was the most swolen he had ever seen. When the sleep study was performed, they too used temperature sensors to monitor airflow. So it's little surprise they came to the same conclusion that I did, particularly since during preperation, the technician told me about how sleep study technicians are so in-demand that she didn't have to go to college or anything, they just trained her on the job. I can easily imagine she didn't notice something that the computer didn't record, let alone pop up a box that read "sleep apnea detected." ...and given the "ten second" definition, I imagine it's possible that it isn't even standard pratice to consider that people might simply have difficulty breathing that awakens them, rather than a complete apnea.

So I'm curious what other people think of this. Do I have sleep apnea, or something related? Is it treatable with CPAP? (Last night's dream was with it set to 12 cm of water. The machine will only go up to 20, and I'm having enough trouble adjusting to 16.) On the other hand, maybe the event that led to that dream was simply the result of treatment almost working, and it was just dumb luck that real apneas didn't show up during the test, and so I only need to try a pressure that is a little higher. I don't know.

Also, after successful CPAP treatment, how long does it take to begin feeling normal again? I think I only slept with it for about four hours last night, and then I slept without it for another eight. I feel a little better than yesterday, but not enough that it couldn't just be random chance. I also don't recall ever feeling better when I was trying it when I first got the machine, but then a lot of that was with lower pressure settings, since I was trying different settings to see what effect they had on the data recorded overnight. If I do find a way to make this correct my problem, how soon can I expect to know?

One other thing I just noticed is that, in my dream, I think I was having difficulty with both inhaling and exhaling. Is that consistant with the type of breathing obstruction created by the cause of sleep apnea? I seem to recall having once read something that indicated that was how it works (and that CPAP forces open the airway to help with the flow of air in both directions), but if it isn't, then maybe I need a different pressure setting, or perhaps I should try the CFLEX setting.

(I tried the CFLEX once, but it's mostly just annoying. It only lowers the pressure for a moment, meaning that while exhaling you suddenly find that you have to put much more force into it, which makes you tempted to just stop right there and begin inhaling again, which leads to really short breaths, which doesn't work. Normal CPAP seems to be harder at first, but after an hour it seems preferable.)

[john_dozer]

A few comments.

Some of your language may be off-putting to some folks here, at least as a introductory post.

A CPAP machine with too high a pressure can induce a central apnea event where neurologically you don't command your body to breath. And what you describe you recorded may fall under that category. So its possible your machine is causing your problem there.

There are also other sleep disturbance issues other than Apnea that will give you similar symptoms. Restless leg syndrome comes to mind. So I'm wondering if you have one of those and CPAP is not the right treatment or its less severe than you think and smaller part of an overall issue. Just a thought.

[jweeks]

So I'm curious what other people think of this. Do I have sleep apnea, or something related? Is it treatable with CPAP? (Last night's dream was with it set to 12 cm of water. The machine will only go up to 20, and I'm having enough trouble adjusting to 16.) On the other hand, maybe the event that led to that dream was simply the result of treatment almost working, and it was just dumb luck that real apneas didn't show up during the test, and so I only need to try a pressure that is a little higher. I don't know.

Hi,

I know exactly what you need. You need a different doctor. If you are talking about 12 hours of sleep and breathing difficulties, you need a sleep specialist who can measure your problem and come up with a treatment. There are all kinds of sleep issues, and all kinds of treatments. Picking something at random like CPAP, then applying it in a random manner is likely to cause far more harm that good. You need someone who really knows what they are doing and does this professionally on a daily basis. If you can let folks know where you are at, perhaps you can get some good suggestions for a competent sleep doctor.

-john-

[kteague]

Hello and welcome to the forum. I'm not really understanding about the data you are getting, but that's ok. Just wondering if you have AHI and leak info, which would be key to dialing in a therapeutic treatment. About plugging up holes in the mask - if those are the vents, they are intended to expel exhaled air which you DON'T want to rebreathe. Even without the presence of apneas, hypopneas (reduced air flow) can be a source of daytime symptoms the same as apneas. I would think starting at a moderate pressure like 10, and increasing the pressure a little at a time after observing a few nights of data would most likely help you to reach your goal of treating any disordered breathing. As far as the prior study goes, one night in a clinic is not likely to be fully representative of the nights you sleep at home, so it would be no surprise if something was missed. Fortunately you seem to be creative, adventurous, and not at all intimidated by this process. Unfortunately, doing this on your own, while doable, takes the right equipment and a methodical approach. Or another sleep study. By the way, it was probably your uvula that was enlarged. Some have surgery to reduce or remove (God forbid) them, but there's no guarantee it will resolve the problems. Your symptoms do sound classic for one with sleep disorders of some sort.
Kathy

[ozij]

I'm glad you've come here, because you have a chance to hear that covering the mask vents is a terrible idea they are there for a purpose.
You also have a chance to hear the following:
Dry mouth could be the result of treatment air gushing out through your mouth.
Heating the cold air gushing in at you can by done with a heated hose (available for instance at http://www.sleepzone.co.au).

I'm more that a bit surprised at the following:
You do not share your AHI with us, and don't seem to think its important info - you don't even mention it.
You don't mention the type of machine you bought, nor how you connected it to the computer. Nor how your marvel machine could function after being take apart.
You don't even show the data you gathered when you were sleeping - how did you manage to gather all that data while sleeping?
Nor what made you put your machine at 12.

Very little real data for any responsible rational person to see.

Can extreme exhaustion be the result of sleep apnea? It can. Could it be for other reasons? Yes it could.
Could a sleep study have missed it? It could (By the way the PSG report is something else you decided not to share with us).
Are sleep disordered breathing problems treatable with cpap? Yes they are.
Would it be a good idea to repeat a sleep study? Yes it would.

O.

[BleepingBeauty]

Then my mouth was drying out, and it was kind of cold, so I covered some of the holes in the mask with tape to reduce the air flow.

Yikes! Those holes are there for a reason - to allow you to expel CO2 that can collect in the mask. Every mask has carefully designed vents to ensure proper airflow. Please, remove the tape.

Then I found it was really difficult to breathe[/quote]

That's not surprising! Stop covering the holes on the mask.

Those two statements really jumped out at me when I read your post. But considering everything else you wrote in your post, you're attempting to treat yourself, without the guidance of anyone with experience. That's not easy to do, and you need a good education on the subject before you begin. Don't just start "wingin' the dials" (to borrow a phrase from a cherished forum member) willy-nilly.

You're in a great starting place. Click on the yellow lightbulb at the top of the page and start reading. Welcome to the forum, and good luck.

[Wulfman]

I have a CPAP machine I bought on Craigslist several months ago. Which machine? At the time, I took it apart and wired it to my computer so that I could monitor my breathing while asleep,Bad idea and I noticed that I'll breathe normally at first, then over several minutes my breathing will become weaker and weaker until it is almost nothing, and then I'll wake up. I wasn't sure what to make of that, but since the machine didn't seem to be helping with anything, I gave up after a trip to the hospital diagnosed me with an anxiety attack, and I subsequently wondered if all of my sleeping problems weren't simply anxiety.

Then yesteray, after several days of sleeping 12 to 14 hours a day, I was incredibly tired, sitting in a chair, staring at the floor, with my head leaning on my sholder, hardly thinking at all, pondering the vague and smudgy appearance everything had, and wondering what the problem could be. Being so tired certainly didn't seem like anxiety. I was so tired I couldn't hardly think, let alone worry about things. I thought again of sleep apnea and decided that must be the problem, since rather than being mentally disturbed, I instead seemed almost dead, or perhaps almost catatonic. Not anxiety, for sure.

So I tried the CPAP machine again last night. I was having a lot of problems making it comfortable enough to wear. At first air leaked a lot, so I shaved, and the mask made better contact with my face. Then my mouth was drying out, and it was kind of cold, so I covered some of the holes in the mask with tape to reduce the air flow. Another bad idea Then I found it was really difficult to breathe, but I was really tired, so I didn't care to fuck with it if it wasn't a major problem. Instead I just put extra effort into inhaling and exhaling for one breath, and then I felt better for a moment, only to soon feel as if I wasn't getting enough air again, and so I tried another deep and difficult breath. Finally I decided I had to remove the mask and figure out what the fuck the problem was, and at that point I woke up! I was asleep, dreaming about the mask preventing me from breathing, but as soon as I woke up I could breathe just fine, and so it wasn't the mask at all.

Unfortunately I don't still have the machine connected to the computer, so I have no record of the event, but I'd be surprised if it wasn't exactly as I experienced it in my dream.

With that I'm rather convinced that I do have sleep apnea, just without the apnea. That dream matches exactly what I was seeing on the computer data, What "data"? I thought you said you didn't have it connected to the computer which is that my breathing just becomes more difficult until I finally wake up, at which point it returns to normal.

I don't think it's entirely impossible that my $1200 sleep study missed this.

Long before my sleep study, I had already considered that I might have sleep apnea, and so to find out for myself, I used a temperature sensor to record the temperature of air traveling through a tube that I taped to a plastic bag that I taped to my face. I looked at the data on my computer the next day, and it looked almost entirely normal. Most of the data showed regular breathing, and the only interruptions were two second periods where I would stop breathing, followed by a deep breath. I figured that might just be normal, and the internet seems to indicate that sleep apnea is when people stop breathing for at least ten seconds, and so I decided I didn't have sleep apnea.

Years later, when I finally scored some health insurance and could see a real doctor, he looked in my mouth and immediately decided I must have sleep apnea because something was the most swolen he had ever seen. When the sleep study was performed, they too used temperature sensors to monitor airflow. So it's little surprise they came to the same conclusion that I did, particularly since during preperation, the technician told me about how sleep study technicians are so in-demand that she didn't have to go to college or anything, they just trained her on the job. I can easily imagine she didn't notice something that the computer didn't record, let alone pop up a box that read "sleep apnea detected." ...and given the "ten second" definition, I imagine it's possible that it isn't even standard pratice to consider that people might simply have difficulty breathing that awakens them, rather than a complete apnea.

So I'm curious what other people think of this. I'm confused as to what you're doing Do I have sleep apnea, or something related? Is it treatable with CPAP? (Last night's dream was with it set to 12 cm of water. The machine will only go up to 20, and I'm having enough trouble adjusting to 16.) On the other hand, maybe the event that led to that dream was simply the result of treatment almost working, and it was just dumb luck that real apneas didn't show up during the test, and so I only need to try a pressure that is a little higher. I don't know.

Also, after successful CPAP treatment, how long does it take to begin feeling normal again? Typically, MONTHS I think I only slept with it for about four hours last night, and then I slept without it for another eight. I feel a little better than yesterday, but not enough that it couldn't just be random chance. I also don't recall ever feeling better when I was trying it when I first got the machine, but then a lot of that was with lower pressure settings, since I was trying different settings to see what effect they had on the data recorded overnight. If I do find a way to make this correct my problem, how soon can I expect to know?

One other thing I just noticed is that, in my dream, I think I was having difficulty with both inhaling and exhaling. Is that consistant with the type of breathing obstruction created by the cause of sleep apnea? I seem to recall having once read something that indicated that was how it works (and that CPAP forces open the airway to help with the flow of air in both directions), but if it isn't, then maybe I need a different pressure setting, or perhaps I should try the CFLEX setting.

(I tried the CFLEX once, but it's mostly just annoying. It only lowers the pressure for a moment, meaning that while exhaling you suddenly find that you have to put much more force into it, which makes you tempted to just stop right there and begin inhaling again, which leads to really short breaths, which doesn't work. Normal CPAP seems to be harder at first, but after an hour it seems preferable.)

What machine do you have? Apparently it's a Respironics machine......but which model?
What mask are you using?
If it's a data-capable machine and there's a smart card in it to gather the data, you need the software and a card reader to really see what is happening. Just "wiring" it to your computer won't show anything meaningful.

In my opinion, you're going about this all wrong.

Den

[peajay]

Sorry for the lack of information. I actually typed my whole life story at first, but then I decided that was more than anyone would care to read, so I started over, figuring people would ask for details if they were important.

...but first, since it seems to have concerned everyone: Don't worry, I know what the vent holes are for. There are three in the mask, and when I bought it, one of them was still sealed, sort of like "if you need it, then punch it out." Once I tried the machine set to 4, at which point I definately did need that hole, since over a few minutes I'd continuously take deeper and deeper breaths, which indicated to me that I was rebreathing a lot of the same air with each breath, so I punched it out. Since I was now using it at 12, I decided I didn't need them all, and covered that one back up and sort of mostly covered another. (I meant to cover two, but that's how the tape ended up, and it was close enough.) There's definately still a lot of air coming out of that one hole, and I know what lack of air flow does since I've experienced it before, so I think I'm good.

You need a different doctor. If you are talking about 12 hours of sleep and breathing difficulties, you need a sleep specialist who can measure your problem and come up with a treatment.

Actually, it was a sleep specialist I was talking about. I was referred to him by my regular doctor, after he had done a lot of other stuff, like blood tests, x-rays, EKG, and an MRI. He had also sent me to a neurologist, but the neurologist wasn't too excited about anything. I think I might have overconcerned my doctor with my list of every little symptom I could think of.

There are all kinds of sleep issues, and all kinds of treatments.

Really? In all of my research I could never come up with more than four to consider: Sleep apnea, restless leg syndrome, something similar to restless leg syndrome yet somehow different in ways people can't seem to adequately describe, and narcolepsy. If there are more, I'd certainly like to hear what they are so that I can take them into consideration as well.

Picking something at random like CPAP, then applying it in a random manner

It actually wasn't chosen at random.

Throughout my life, I've suspected two possible problems, both before I actually knew that they were common sleep disorders: Sleep apnea, and whatever that limb movement thing is I can't remember the name of, the one that isn't restless leg syndrome...or maybe the one that is restless leg syndrome. They're both so similar.

It started when I was a teenager and I realized that whenever I was having difficulty going to sleep, I was constantly moving my feet, usually in rhythm with whatever music might be stuck in my head. So I tried to simply stop, but it wasn't that easy. That made me wonder if I might continue to move my feet while asleep. To find out, I took the finger sensor from a Nintendo PowerGlove and connected it to the joystick port on my computer, and wrote a little program to record data overnight. However, due to noise in the signal, the data was rather inconclusive. Either I wasn't moving my feet much, or I wasn't moving them at all. I couldn't tell which, and I didn't know how to reduce the noise.

Later as an adult, one night while having difficulty falling asleep, I noticed that I would frequently fall asleep only to wake up only seconds later, and that every time I was in the point of my breathing cycle where I needed to inhale, never where I needed to exhale. This made me suspect that I stopped breathing when going to sleep. I eventually figured out that it only happened when I was trying to go to sleep on my back, and so from then on I always made it a point to go to sleep on my side or on my stomach.

Some time later when I learned of the existance of sleep apnea, the fact that my body position made a difference made me pretty sure that I didn't have central apena, since I would expect that to be a problem regardless of sleeping position.

Even later as an adult, again while having great difficulty sleeping, I began to believe it was because of limb movements while I slept, and as time went on, it only became more obvious that that was the problem.

That was the point where I went to see the sleep doctor.

Naturally I was confused that he seemed to think I must have sleep apnea, especially since my own test with my computer and a temperature sensor indicated that I don't stop breathing while asleep. I bought a tape recorder since he seemed almost certain that I must snore, even though no one had ever told me that I did, but I didn't record any snoring, just something that sounded like a dying animal. I took the recording to his office on my next visit, he told me it was simply snoring.

However, then the sleep study was done, and it concluded that I don't have sleep apnea, and the worst thing he could find was what he called an "increase" of leg movements, something like 20 per hour. He didn't seem to think it meant anything, though. I was just annoyed that, with all the emphasis I put on the fact that most of the movements that were disturbing me were in my arms and hands, that the only limb movement detection they wired up for the test was for my legs.

He gave me some medication for it, which only made things worse, then he gave me some different medication which went at the problem from the same angle, and it didn't do any better. Then he gave up and suggested I return to the psychologist. (Never tell a doctor you've seen a psychologist, otherwise that's where they go whenever they can't figure something out.)

Some months later I discovered that the limb movements and a few other symptoms were the result of magnesium deficicency. I just take some magnesium supplements every day and it hasn't been a problem since.

However, the magnesium wasn't my only problem. I still sleep way too much, and I'm still way too tired. I'm just no longer tourmented by blatently obvious random limb movements.

So I kind of forgot about it all for a while until one night when I had a dream where for some reason all of my neices and nephews decided to gang up on me and suffocate me. After one of them had held their hands over my mouth and nose for about a minute, I felt as if I was about to pass out, and then another comes along only to kick me in the chest. At that point I woke up. I was sleeping on my stomach, and strangely I actually came up of the bed as if a result of being kicked in the chest. ...and I was really out of breath. I thought maybe I should look into the sleep apnea thing again, and so that's when I bought the CPAP machine.

I could have tried building more testing devices, but doing that sort of stuff requires mental skills like memory and concentration which I simply don't have most of the time. It was far easier to simply pay for the treatment and see what happens.

As I said, I did manage to connect it to the computer, and from there record more ambiguous data, and I eventually gave up after a diagnosis of an anxiety attack made me wonder if it wasn't all just in my head. Anxiety sure explained a lot of other things in my life.

...and that brings us to my previous post where, while sitting and staring at the floor, feeling nearly dead, I decided it couldn't possibly just be anxiety.

If you can let folks know where you are at, perhaps you can get some good suggestions for a competent sleep doctor.

New Paris, Ohio -- I'm just curious if anyone recommends the same guy I went to. If not, I may actually need to go see someone else.

I was rather convinced the first guy was incompetent after my first five minutes with him, and the rest of my experience did nothing to help. In particular, one thing I remember was they had a questionaire they wanted me to fill out, where I was supposed to just check off the symptoms that I had, but the problem was that a lot of them were really ambiguous and so I couldn't just check or not check them. Interested in correct results, I sat down at the computer and typed out my answers, explaining the different things I thought each one might mean and whether or not it applied to me. I don't think he even read it, as he asked me a bunch of questions that's I'd answered in detail in my response, but he'd apparently seen it since when he sent me home with a "sleep diary" he specifically told me not to retype it.

Now the thing was, he sent me home with this thing because he wanted to do a sleep study, but he couldn't get an answer out of me about what time of day was best to do the sleep study, because there just wasn't a good time: my sleeping was really random at that point, and so I told him the best thing to do would be to simply schedule a time and I'd just not sleep for a while before the study. He insisted that just wouldn't do, and so sent me home with this form with a little box in which to write what time I went to sleep, and another box in which to write what time I woke up.

Realizing that wouldn't do, I drew a nicer chart when I got home on graph paper, where I could simply color in the squares where I was sleeping, and that's what I did for two weeks, and it was every bit the incomprehesible mess I expected. Since he didn't want it rewritten, I then sat down and did my best to take those four random times I slept one day and decide on a time I woke up and a time I went to sleep.

When I returned for my next appointment, he took the sleep diary, looked at it in confusion for a few minutes, then started graphing all of the times out on a piece of paper, continued to look at it in confusion, and then said "well, I guess we could try in the morning." I just said "it doesn't matter, I'll just make sure I don't sleep for a while before I come in." Assuming he might have actually cured my problem, it was just two additional weeks of unnecessary suffering with a sleeping disorder, just because I couldn't give him an easy answer to "what time of day do you usually sleep?"

Everything about the guy was like that. The whole time I felt as if he could barely comprehend what he was doing. I think I had to suggest a limb movement disorder because he was so stuck on sleep apnea that my list of symptoms wasn't enough to put the idea in his head.

wondering if you have AHI and leak info, which would be key to dialing in a therapeutic treatment.

Nope, don't even know what those things are, really. The only data I've seen is the data I've collected. I never saw a thing from my sleep study (although I'm thinking I should call over there and tell them I want a copy). All I got from it was what my doctor told me which was "no sleep apnea, but a small increase in leg movements, 20 per hour."

Unfortunately, doing this on your own, while doable, takes the right equipment and a methodical approach.

I initially started trying to test myself due to lack of medical insurance. Some time later I qualified for disability, which enabled me to see doctors. Since then I've had blood tests, x-rays, EKGs, an MRI, and I've seen a neurologist and a sleep specialist, yet still most of the information I have about what is wrong with me is stuff I've figured out on my own. ...but at least I now know that I don't have a brain tumor.

The only problem is that I'm usually too tired to figure anything out on my own, and on the rare occasions when I'm feeling well, I'm often of the opinion that something else entirely was the problem all along. I guess next time I'm feeling well, I need to simply prepare my own elaborate sleep study, regardless of whether or not I think there's any reason to.

By the way, it was probably your uvula that was enlarged. Some have surgery to reduce or remove (God forbid) them, but there's no guarantee it will resolve the problems.

I rather doubt it is my problem. Since I first suspected sleep apnea, I've been able to simply let everything in my throat relax, and subsequently find it difficult to breathe. I can't really say for sure since I can't exactly relax my throat and simultaneously hold my mouth open to look at it, but I don't think that thing is involved at all, although it does feel like the problem is in that area somewhere.

Dry mouth could be the result of treatment air gushing out through your mouth

I have a full face mask. The machine came with a nasal mask, but I couldn't understand how it was supposed to work. My problem seems to be that when I go to sleep, some muscles in my throat relax and my airway becomes blocked, yet somehow I'm supposed to continue to use other muscles to prevent air from escaping through my mouth? It makes no sense if you ask me.

I gave it a try, but every time I'd fall asleep, air immediately began coming out of of my mouth. I tried taping my mouth shut, but like I expected, my cheeks swelled up like a baloon, and I couldn't possibly sleep like that. I then tried wrapping up my head so that my cheeks couldn't swell up, and that kind of worked, but I wasn't too happy with my mouth taped shut and then wrapped over with a bunch of bandages, since if I awoke with a stuffed up nose, that could be a major problem. So I tried to build a full face mask, but being too tired to do such things, I couldn't make one that worked well (despite having done so before, when I first built my own CPAP machine, which is something else that was in that life story I didn't post), and so I just ordered one online. I found a store selling random junk which apparently just happened to have some CPAP masks and no idea that they were supposed to be prescription items.

You do not share your AHI with us, and don't seem to think its important info - you don't even mention it.

I don't even know what it is.

You don't mention the type of machine you bought, nor how you connected it to the computer. Nor how your marvel machine could function after being take apart.

It's a RemStar Pro 2.

I first took it apart, to look for a suitable point with a voltage that indicated some useful information. I first thought I might have to connect to the wires which drive the motor, but then I noticed a lot of "test points" on the board. ("test points" are points in the circuit which are intended to be used when manufacturing or repairing the device in order to calibrate it or to determine which parts of the circuit aren't functioning correctly) One of the test points turned out to be incredibly useful. It was normally a constant voltage, but inhaling through the hose made the voltage go up, and exhaling made the voltage go down. It even worked when the machine was turned off (although still plugged in, obviously). So I connected a wire to that test point, and another to the ground of the circuit, and ran both wires out the back of a small hole I drilled in the back of the machine, and then I reassembled it.

I then ran those wires across the room to my electronics workbench, where I fed the signal into an analog-to-digital converter, an ADC0804, which takes analog voltage levels and converts them into a number for a computer. That was then connected to a general-purpose Z80 microcontroller I had built, which I loaded with a program that continuously read the analog-to-digital converter and wrote the value to a UM245R USB chip, which was connected to my PC. From there I used a Perl script to read the values and plot them into a postscript document, which I later viewed with ghostscript, and also printed using cupsdoprint.

You don't even show the data you gathered when you were sleeping

Unfortunately I don't have any of it. Some was just so long ago that I would still have it even if I'd intended to keep it, whereas the most recent (from the CPAP machine) was apparently deleted for some unknown reason. I'm not sure why, since my usual policy is that if I put effort into collecting a small amount of data (and the files couldn't have been very large) then I keep it no matter how worthless it seems, but the files aren't where they should be and they don't seem to be anywhere else either. ...and I shreaded the hard copies just a month ago, thinking that I still had the electronic copies.

how did you manage to gather all that data while sleeping?

My computer recorded it. I was asleep.

Nor what made you put your machine at 12.

Back when I built my own CPAP machine, I experimented by lying down and relaxing my throat, and seeing what pressure seemed to allow me to breathe again, and 12 was the number, but then it's an old number so maybe I should just try that again.

Very little real data for any responsible rational person to see.

I'll have to see what I can do to correct that. It shouldn't be too difficult to reconnect the CPAP machine. The last time I connected it, I realized that the circuits I was having such a difficult time building were the same ones I'd built many times before, and so I decided to solder together more permanent Z80 microcontrollers so that in such situations (when I want to do something but I'm just too tired) there'd be less work involved. So unless I wake up a total mess tomorrow, I should be able to collect some data the next night, since there's little that I have to do to get it working again. I still have all of the software I wrote, just not the data.

By the way the PSG report is something else you decided not to share with us

Again, I don't know what it is, and so I almost certainly don't have it.

Would it be a good idea to repeat a sleep study? Yes it would.

Probably so, but the last one was such a hassle, I'm definately not repeating it with the same doctor. ...and I'm not sure what choices I have, since my normal doctor spent some time trying to think of who he could send me to who would do it for what medicare/medicade would pay and who he thought he could trust to do it correctly (he actually said that). If that guy was the best he could think of, then I don't know what hope I have with any other sleep doctor, short of traveling a hundred miles to have a completely different selection to choose from.

Then I found it was really difficult to breathe

That's not surprising! Stop covering the holes on the mask.

It was only difficult to breathe in that dream, though. Once I woke up I had no problem. In fact I didn't even take the mask off at first. I waited a few minutes, until I decided that that dream probably meant that I needed to increase the pressure. There was no problem at all while I was awake.

A CPAP machine with too high a pressure can induce a central apnea event where neurologically you don't command your body to breath. And what you describe you recorded may fall under that category. So its possible your machine is causing your problem there.

I suppose that's possible. It kind of felt that way at first when I turned the pressure up to 16, but then after half an hour, I kind of just forgot about it, and eventually found myself breathing normally again, so I figured I was used to it at that point. That would also fit the data I saw where my respiration depth slowly declined over time, but if the experience in that dream is to believe, I was forcing air through my throat, not simply failing to even try to breathe. Having experienced that while asleep and dreaming, I'm not sure it's a reliable data point, so I'll keep this suggestion in mind.

There are also other sleep disturbance issues other than Apnea that will give you similar symptoms. Restless leg syndrome comes to mind. So I'm wondering if you have one of those and CPAP is not the right treatment or its less severe than you think and smaller part of an overall issue. Just a thought.

...and a perfectly valid one. I could probably list a dozen things that might be a problem with me, if I really tried. I've spent the last 17 years trying to solve this mystery, and I've had a lot of ideas. Currently the best fitting ideas seem to be anxiety-induced sleep disturbances and sleep-disturbance-induced anxiety. I was thinking the latter until a few days ago when feeling almost dead made me decide I needed to look at it from the other angle again.

I took it apart and wired it to my computer so that I could monitor my breathing while asleep,Bad idea

No, I take stuff apart all the time. I was reasonably sure that I wouldn't break it, and as certain as one could be that I wouldn't kill myself. Look at my web site ( http://www.ecstaticlyrics.com/ ) if you doubt my technical abilities. (most interesting stuff is under the "whatever this is an excuse for" link)

What "data"? I thought you said you didn't have it connected to the computer

I didn't. It was connected months ago when I first bought it, but when I decided I wasn't getting anywhere, I disconencted it, and so it wasn't connected last night. So it didn't match data from last night (and I really wish it had been connected last night) but it did make sense with what data I had seen months earlier.

Also, after successful CPAP treatment, how long does it take to begin feeling normal again? Typically, MONTHS

Well, I seriously didn't give it enough of a chance then. I think I only collected data for three or four nights, and at least one of them was at a pressure I was pretty sure wouldn't do anything. (I wanted to see what things looked like without treatment, or ineffective treatment as it actually was.)

What machine do you have? Apparently it's a Respironics machine......but which model?
What mask are you using?

It's a respironics pro 2. The mask looks exactly like this: http://www.myrespiratorysupply.com/imag ... 20mask.jpg That particular web site (not the one I bought it from) doesn't say what brand or anything it is. The packaging seemed rather generic as well, so I assume it's some no-name thing, though I'm pretty sure it had a name, it just wasn't a "made by our super awesome company" type name.

If it's a data-capable machine and there's a smart card in it to gather the data, you need the software and a card reader to really see what is happening. Just "wiring" it to your computer won't show anything meaningful.

I trashed the smart card just as soon as I realized it wasn't some sort of digital key required to make the thing operate. I later found out they're some sort of standard data storage and so maybe I could have used that, but I would have had to buy a card reader, and the documentation led me to believe the machine doesn't write anything to the card other than how many hours it's been used and other really generic data like that.

The data I collected came from a test point inside the machine where a voltage reflected the air flow in and out of the machine. I just recorded that voltage into my computer, since it was the only uniquely useful data point I could find. Everything else was also just an indication of airflow but not in such an easy to interpret voltage reading.

In my opinion, you're going about this all wrong.

I don't know about that. If the right way doesn't work, is there a wrong way?

Anyway, thanks for all of the replies, everyone. I really didn't expect so many responses.

[Liddelbrook]

Why don't you record yourself on video while you sleep?

I use a Sanyo HD1000 camera in low res, and I can record 17hrs of video on a 8gb card while connected to mains.

After I done that, I knew what I had, no doubts anymore....

[Julie]

I think you should ask yourself something... and that is "How much time and energy (that "I" don't have) have I spent trying to get answers to my problems but doing so in random, and guessed-at ways when simply rescheduling a PSG, or at least following a known and proven protocol to self-test would have probably helped?" You're all over the place with your version of how to help yourself, and apparently unaware of various aspects of things to either carry out or not to do, how to set up a valid test, what procedures to follow and not, etc. and, based on such "testing" are short-changing yourself by giving up, or coming to all kinds of very likely erroneous conclusions based on that testing. You shouldn't be giving up, but should get proper help to do it right - stop trying to DIY, stop coming to conclusions based on wrong premises and then wondering why it's all not working out, and let professionals, or at least very experienced people here help you through the mess (because that's what I believe it all adds up to at this point).

[kteague]

Ok, back to the drawing board here...

Dreams about suffocation were common for me before cpap. Even have a journal of them. One doc told me that is common in those with OSA. In the last couple years, I may have had a couple, but I chalk that up to even with cpap treatment, there can still be occasional apneas that sneak thru. Our minds often make up stories related to physical sensations - like dreaming we're at the park going to an outbuilding and wake up in crisis and run to the potty. So it's not hard for me to believe that the dreams can be related to OSA.

PLMD, or Periodic Limb Movement Disorder, is likely the movement disorder you mentioned. Here's a brief shot at differentiating PLMD from RLS. Oh, a person can have just one or both disorders. They are considered neurologic. A common thread often reported is a low ferritin level, as the brain uses iron in the processing of movement. Some cases of PLMD are attributed to nerve injury. But it seems much is yet unknown. Magnesium, calcium, and zinc supplements are reported by some to help.

RLS presents with random uncomfortable sensations (usually in the legs) that are relieved by voluntary movements. They are most prominent when awake, but can disturb sleep.

PLMD is exhibited by involuntary rythmic movements almost always during sleep. They primarily affect the legs, but are known to also affect the trunk, arms, and head.

Persons with both OSA and PLMD can present a diagnostic dilemma. The two can vie for prominence (the strongest one causes the arousal) and this can mean neither the OSA nor the PLMD fully manifests during a sleep study. Successfully treating either usually then allows the other to fully express to a level that may then be more diagnostically significant than when they shared the night.

By the way, anxiety can be exacerbated by fractured sleep, and with OSA, stress hormones flood the body repeatedly all night long. You may see some improvement with your anxiety symptoms once this is all sorted out.

One note on your mask issues - many people on here report having trouble breathing at a pressure of 4. I felt as if I was suffocating. And in some masks that isn't enough pressure to properly vent exhaled air. All masks have a minimum pressure for effective use.

Ok, that's all I've got at the moment. Best wishes.

[jweeks]

Hi,

The key question to ask yourself is if all this time and energy trying to do it yourself is working for you? Based on the continued problems that you are having, I'd have to say "no", it isn't working for you. One side effect of breathing problems is that it reduces your oxygen levels in your blood, sometimes to the point where a person is no longer thinking straight. I think you are there. I further think you are getting close to a critical point where you are going to start having seizures or other mental impacts like seeing things. You really do need to get this treated in a professional manner.

If this were me, knowing what others have told you here, you need to get a different sleep doctor, and get scheduled for a polysomnogram at a major cardiac center or some other high functioning sleep center. Don't go to Joe's Discount Sleep Clinic formerly located in a gas station or any voodoo doctors just because they are cheap. If you don't do this, it is going to end up being your next of kin who has to pick up the pieces.

-john-

[Handgunner45]

It's a RemStar Pro 2.

I first took it apart, to look for a suitable point with a voltage that indicated some useful information. I first thought I might have to connect to the wires which drive the motor, but then I noticed a lot of "test points" on the board. ("test points" are points in the circuit which are intended to be used when manufacturing or repairing the device in order to calibrate it or to determine which parts of the circuit aren't functioning correctly) One of the test points turned out to be incredibly useful. It was normally a constant voltage, but inhaling through the hose made the voltage go up, and exhaling made the voltage go down. It even worked when the machine was turned off (although still plugged in, obviously). So I connected a wire to that test point, and another to the ground of the circuit, and ran both wires out the back of a small hole I drilled in the back of the machine, and then I reassembled it.

I then ran those wires across the room to my electronics workbench, where I fed the signal into an analog-to-digital converter, an ADC0804, which takes analog voltage levels and converts them into a number for a computer. That was then connected to a general-purpose Z80 microcontroller I had built, which I loaded with a program that continuously read the analog-to-digital converter and wrote the value to a UM245R USB chip, which was connected to my PC. From there I used a Perl script to read the values and plot them into a postscript document, which I later viewed with ghostscript, and also printed using cupsdoprint.

.

I would be really interested in what points you attached to. There are several points that would exhibit the varying voltage you mentioned, however, on some of them the circuit loading by adding a long wire and an adc to the circuit could effect the operation of the machine as a whole. By wiring in your little circuit, you may have seriously affected the operation of the machine.

[Muse-Inc]

PeaJay, the vent holes are there to allow your exhaled air to vent so you don't re-breathe that air...as another poster mentioned, each mask has a minimum operating pressure to ensure that proper venting occurs; it's pretty low BUT assumes the vent holes are open (these are not the ports for oxygen which have plugs that can be removed or re-inserted as needed). If the blood's gas ratios are deranged, the body has problems.

Hypopneas are not about the cessation of breathing, they are airways so narrowed that oxygen deprivation occurs; oxygenation desaturation is no laughing matter as it causes the body to increase urine prodution to reduce the hypertension that's occurred, cause brain damage, causes deranged sleep architecture, and can be fatal. Apneas (not centrals) are not about cessation of breathing, there are -- sometimes herculean -- efforts to breath BUT the airways are collapsed because of floppy tissue; central apneas occur when the brain 'forgets' to tell the body to breath (the brain says breathe in response to changes in CO2 levels). My sleep doc says that centrals are common when falling asleep just as you noticed.

AHI are the total number of apnea and hyponea events observed during a sleep study (PSG). Titrated pressure is the CPAP pressure that significantly reduced or eliminated those events; it is determined during a sleep study with you wearing a CPAP mask in addition to all the wires and sensors, then while you sleep, they increase the pressure to detemine the ideal, going beyond that might induce central apneas.

Things to be reviewed in your sleep study: apneas, hypopneas, respiratory arousals, spontaneous arousals, sleep architecture, oxygen saturation, limb movements, sleeping positions & their affect on the apneas & hypopneas, EEG findings and comments. All of these identify 'things' that might be contributing to the condition.

Sure sounds like hyponeas are occurring...but I'm no doc, just my $0.02 worth based on my own high number of hypops. Good luck on finding a solution!

[peajay]

Why don't you record yourself on video while you sleep?

I may have to give that a try. I have a camera I can connect to my computer and record the video to my computer. I could even put the time in the corner of the video and almost match it up with any other recorded data.

You shouldn't be giving up, but should get proper help to do it right - stop trying to DIY, stop coming to conclusions based on wrong premises and then wondering why it's all not working out, and let professionals, or at least very experienced people here help you through the mess (because that's what I believe it all adds up to at this point).

If only it were as simple as letting professionals do it. Did you read my accounts of my sleep study? I guess they were professionals, since the definition of professional seems to amount to nothing more than "someone who is paid to do something," but they didn't seem to be very good at what they do.

I was talking to a friend last night, and we were discussing just how poor a source of information the internet can be at times, and I said "but I have to say, it also seems to be as useful as a doctor." My friend couldn't think of a reason to disagree with me. We've both seen the same thing: If your problem is so unusal that typing your symptoms into Google fails to turn up the correct solution, then you're doctor isn't going to turn up the correct solution either.

Quite honestly, the reason I don't return to the sleep doctor at this point is because I believe I've already done better than he has, even with only the low-quality and ambiguous information I've come up with. After all, I found the solution to my PLMD, what can he say he's done? ...and let's not forget, he had a much nicer budget to work with as well. He received $1200 for that sleep study, plus more for each office visit. I've spent $50 on a CPAP machine, $70 on a full face mask, and otherwise just used stuff I already had for other reasons. He had any medication in the world to choose from. I could only choose from over-the-counter medications. He had years of medical school to rely on for information. I had Wikipedia. I think the best thing I could do would be to pay myself $1200 to perform a sleep study, but since my income is only $720 a month, that just ain't gonna happen.

In the last couple years, I may have had a couple, but I chalk that up to even with cpap treatment, there can still be occasional apneas that sneak thru.

I don't think I've had more than one every six months or so. That's infrequent enough that I'm really not convinced they're symptoms. In fact, the first one (not the one from two days ago), I wondered if I hadn't simply rolled over so that my face was directly into the pillow. Since I was launced upwards via unknown forces at the time of waking up, I have no idea what the position of my head was while I was asleep.

Our minds often make up stories related to physical sensations - like dreaming we're at the park going to an outbuilding and wake up in crisis and run to the potty.

I have all sorts of variants on that theme. Sometimes I successfully use a toilet, only to soon find that I need to use one again. Sometimes I find toilets, but for some reason they lack privacy, and so I continue searching for others. Sometimes the privacy is there, but the toilet is clogged and filled to the top, and I don't want to cause it to flow over.

...but what really surprises me are the dreams which seem almost psychic in their ability to incorporate real-world events. In one dream I was riding a bicycle downhill when I saw that I was heading straight towards a large rock. At the moment I hit it, I awoke to a bedspring snapping within my matress directly under my rear end. In another I was watching a piano fall from a building, and at the moment it hit the ground, I awoke to a very loud outside noise.

One note on your mask issues - many people on here report having trouble breathing at a pressure of 4. I felt as if I was suffocating. And in some masks that isn't enough pressure to properly vent exhaled air. All masks have a minimum pressure for effective use.

I'm sure there's a formula somewhere relating lung volume to CPAP pressure to exhaust hole area. Increasing the size of the hole will increase the air flow. The only problem is that the system only functions well when the size of the hose supplying air to the mask is much larger than the size of the exhaust port, so that the majority of the air resistance exists at the exhaust port. If the resistance of the hose becomes significant, then the pressure at the mask is no longer the same as the pressure at the machine, which is where the machine measures it. Also, with a really large hole the machine won't be able to maintain pressure at all.

When I had my machine disassembled, I noticed that it appeared that one option for the machine was to have a second smaller hose next to the main hose, and I see similar small hose connectors on my mask. I assume the reasoning for this is to support very low pressures. A small hose can connect the mask to that second port, and from that the machine could measure the mask pressure, and since there is no airflow within that smaller hose, it's small diameter won't affect the pressure readings, allowing the machine to know the pressure within the mask rather than simply the pressure at the output of the machine. The absense of that option might be why my machine has a minimum pressure of 4, since that may be the point at which pressure drop over the length of the hose becomes unacceptable.

I further think you are getting close to a critical point where you are going to start having seizures or other mental impacts like seeing things.

Maybe...

You really do need to get this treated in a professional manner.

...and if that happens, it'll be a lot easier to get some professionals to take it as seriously as I do. After all, those strange blind spots in my vision (apparently a migraine symptom, say the professionals, even though I never got a headache at the time) managed to get me an MRI. ...and no nonsense either, just and MRI, and then some neurologists looked at it. If I had some nice fatigue-induced seizures, then I might get the sleep doctor to decide I'm not actually insane. Seeing things, however, I don't think that would help at all.

Don't go to Joe's Discount Sleep Clinic formerly located in a gas station

You have got to tell me where that is. Something tells me that Joe is a lot easier to talk to than my sleep doctor and that he'd actually pay attention to what I had to say, if for no other reason than because he knows he doesn't know what he's doing and he'd like all the help he can get.

I would be really interested in what points you attached to.

One labeled "TP8" which just to the left of the bottom of the LCD display (but only labeled on the reverse side), and another labeled "GND" which is in the middle of the board.

on some of them the circuit loading by adding a long wire and an adc to the circuit could effect the operation of the machine as a whole

I took some measurements to see what effect it might be having:

That particular point appears to have an impendance of about 600 ohms. Within the machine I connected that point to the outside cable via a 1000 ohm resistor, to protect against catastrophic failure due to accidental shorts. The wiring is coaxial audio cable of unknown type, ten feet in length. At the other end, it connects to an analog multiplexer and then to the ADC, and this circuit has an input impendance of one megaohm. Given the time scale of the signal (it reflects air flow and so it's particularly low frequency), the worst-case scenario would seem to be that I am distorting the signal at that point in the circuit by some number of microvolts. The signal itself seems to contain noise on the magnitude of at least 0.01 volts, and so I think it's safe to say that my connection to the machine is entirely inconsequential.

each mask has a minimum operating pressure to ensure that proper venting occurs; it's pretty low BUT assumes the vent holes are open

Well, I decided that closing off 1.9 holes was more than necessary, so I removed the tape, and used some hot glue to seal up just the one hole which was origionally sealed when I purchased the mask. So it is now in it's original state.

Sure sounds like hyponeas are occurring...but I'm no doc, just my $0.02 worth based on my own high number of hypops. Good luck on finding a solution!

Well, I've successfully reconnected my CPAP machine to my computer, so tomorrow I should have some data, albiet non-ideal and likely ambiguous data, for everyone to look at.

To wet everyone's appetite for amateur data, here's an example, recorded as I wrote this reply. It's the second page of the recording, and so I had an hour to forget I was wearing the mask, and so it's relatively normal breathing.

http://www.ecstaticlyrics.com/secret/cpap_example.ps

I also have a button beside my bed which I can press that marks points in the data, which I didn't think to use in that example. I'll use it to mark whenever I wake up and also for anything interesting like dreams about suffocation or being out of breath when awakening.