Any ideas on how I can sleep and feel better?

[lee_leses]

My situation is I lost my job last year. I'm working part-time and collecting unemployment, but money is VERY tight.

My old Remstar is still working, but I'm having issues, I feel terrible a lot, and I also want to know what I will be dealing with if I need to repair or replace my machine. There is a whole different post on all the issues I'm having, this post is just about machines.

Dealing with Aetna and these doctors is NOT a good thing! It seems to me that all they do is try to make their money at the expense of people who are suffering. All they want is their insurance premiums, their co-pays, or their $8000 for a new study!

*****************************

So, my pressure setting is 12 and I use the breeze headgear with nasal pillows. There are a number of issues I will explain.

Someone was telling me today that they got their machine adjusted because it was felt that her carbon dioxide levels were too high.

For quite some time, I wake up groggy and fatigued almost every day. I dream a lot during the night, but still wake up feeling bad.

If the pressure is turned up higher than 12, I find it too distracting to sleep, and there is a greater tendancy for air to blow down into my stomach, which causes an unpleasant feeling so you can't sleep, and also belching so you can't sleep.

A lot of the time, but not all the time, at a setting of 12, air blows down into my stomach if I sleep on my right side, but not if I sleep on my left side. This is a HUGE problem.

Also, I'm wondering if at this lower pressure setting or 12, if that forces less air circulation and coud make your carbon dioxide levels higher than the setting of 18 that they want for me based on the studies i've had.

I was wondering if a cpap with c-flex, or a bi-pap, would allow me to exhale without as much air blowing at me and therefore let me get rid of more carbon dioxide.

If I remember from school correctly, it is when you have a certain level of carbon dioxide in your lungs that it signals your brain to take a breath. This is why people can become ventilator dependant.

So, does anyone know anything about this? Is it likely that the reason I feel so bad is because I'm getting a mild case of carbon dioxide poisoning every night when I sleep? It seems like I wake up sicker, the longer I sleep in one night.

How do they determine like they did with the lady who's machine got adjusted that she's getting too much carbon dioxide?

Do a lot of other people get all these issues with the air blowing down into your stomach?

Would a c-flex machine or a bi-pap machine help because it would be easier to exhale the carbon dioxide without as much air blowing at you while you are trying to exhale?

Another thing I am wondering is if I am staying in REM sleep too long, and not getting into delta (deep) sleep enough. Because some nights I remember dreaming quite a bit. This issue could be a legitamate reason for a new study, but I wondered if anyone had any thoughts on this?

I don't do well in sleep studies. I have a lot of trouble falling asleep, and I have to keep getting up to go to the bathroom because of a prostate problem I have.

On my other post, someone said I might be able to find useful information on why I feel so bad if my machine collects data. I'm going to find out if it does. Does anyone have any thoughts on this?

If I try asking doctors these questions, they poo poo me and say more sleep studies and more co-pays. In the meantime I am SICK all the time.

I also have asthma, just an FYI, I think that makes this problem worse, my lungs don't work great to begin with.

I exercise regularly and I am 6'3", 275. I'm trying to lost weight, but it's unclear if that will help or not. I know skinny people with bad sleep apnea, but I still think weight is a factor. I carry more extra weight in my neck and face than some people who are overweight do, and I think the weight is a factor in my case.

Any input will be GREATLY appreciated. I'm 45 and SO sick of being sick all the time and trying to get a new job at the same time...

Lee

[Pugsy]

These Auto machines do NOT sense CO2O changes, needs or levels. So they do NOT make pressure changes based on carbon dioxide levels.

[lee_leses]

So if my machine does collect data, what kinds of data does it collect, and how does that data help with figuring out what adjustments need to be made so I could hopefully feel at least somewhat better?

[Pugsy]

So if my machine does collect data, what kinds of data does it collect, and how does that data help with figuring out what adjustments need to be made so I could hopefully feel at least somewhat better?

Depends on the machine.

Take a look at some software options and reports. See if you think any of it would be useful.

viewtopic.php?f=1&t=64906&st=0&sk=t&sd=a

Older Respironics machines Encore Pro and Viewer reports don't have wave form or centrals scored. Otherwise pretty much the same. I started therapy with the M series APAP so I have those reports as well.

[HoseCrusher]

Check to see if there is an AWAKE chapter in your area. Often they can direct you to someone that can check your machine, for free.

If your mask has vent holes that are not plugged, it is doubtful that you are picking up excess exhaust. You may be able to borrow an oximeter for a night to check just to make sure.

You have to understand that jobs are hard to come by right now. Keep trying and eventually you will find one. This is a big pressure and may be the underlying cause of many of your issues. Make a plan and keep trying.

[Wulfman...]

From reading your post, I suspect you're leaking air out your mouth during the night (since you use a nasal mask instead of a full face mask). That would result in ineffective therapy and leave you feeling unrested.

It's very easy to check the output of your machine.
Go up to the Search function and do a forum search on "manometer AND Tomjax" and you'll be able to read how to easily check your machine's pressure.


Den

[Emilia]

PLEASE... take a moment to go up to the User Control Panel (top left under search) then Profile and then Edit Equipment. Choose your gear from the pull down menus and then choose to show them in TEXT not pics. This puts your equipment in blue at the bottom of each post you write automatically and draws those with the same equipment to answer your questions based on their expertise.

Be sure you choose the correct model for your machine.. there are several levels of models so be sure!!

You are having a lot of issues, but I suspect that once you can, hopefully, read some data and troubleshoot leaks or other issues, you will begin to receive better therapy. This is a learning process, and right now, you are seriously sleep deprived and have a lot of brain fog. Your writing suggests you are a little on edge or maybe paranoid about the quality of your therapy. Not to fear!! You probably just have to adjust pressure settings and work to get any leaks under control to start feeling better.

Help us help you.... get your profile filled in and then read, read, read and ask questions!

[RoxanneY]

What type of mask are your using? If you are not using a full face mask, that might be your gas problem. I had horrible gas everyday . I switched to a full face and that symptom is gone. Gas is a side effect of the CPAP not many patients get.
Tackle one issue at a time and you will eventually conquer all of them.

[archangle]

We need to know more about your machine. Does it say "Plus, Pro, or Auto"? Does it say M series, Philips Respironics or simply REMstar? Does it have a smartcard? (looks like a credit card, slides into the machine.)

[lee_leses]

I really appreciate all of the input!

When I get home tonight, I will fill in ALL of the details about the equipment.

To the one poster, I had these issues before I lost my job, and the issues actually were somewhat better before I started working part-time. I suspect that was because I could sleep more if my sleep quality was poor, but not sure.

I don't know if I would call this gas or not. To me, gas comes out of the *other* end - LOL. My problem is air in my stomach and belching as a result.

I am definately foggy and groggy, but I can't say I cannot stay awake. I DO have this feeling in my eyes I can't quite explain. I guess it feels like fatigue maybe, but I'm not having trouble staying awake. I just don't feel like doing anything except sitting in my recliner. But I don't think this is all depression. Yes, I'm depressed because my life is so affected and I feel so sick, but I keep looking for work, and fixing things when I can, and doing all sorts or stuff for other people. It's not like I have no interest in doing anything, I just feel too sick to do it! I should also add I had LOTS of tests and mostly everything looked good. I'm very concerned because my blood pressure is up some, although it seems to have come right down with a small amount of blood pressure medication (which I never had to tak until now). Also, to function enough to get ready for work, I've been drinking one AMP energy drink when I get up. I also drink one glass of Coke when I get to work. I'm trying as hard as I can to not take stimulents unless I cannot function and limit them as much as I can, But this is all why I am trying to stay on this and figure out if what is wrong is the sleep apnea.

I've wondered if I need to go to a full face mask and sleeping on my back instead of my side, but the problem is my body does not want to sleep on my back, and if I have straps on my face or not on my side I can't fall asleep. I initally thought if I was exhausted enough I would pass out even with the mask on and on my back, but so far that does not seem to be the case.

Do the symptoms I describe above, especially the eye fatigue but can stay awake just don't feel well, does that sound familiar to anyone? The best way I can describe the eye feeling is almost like a pressure behind my eyes and I feel like rubbing them like I have been awake all night without sleep! Also, in the last 2-3 years my eyes seem so much more sensitive to bright light than they used to be, and it's much harder to see without reading glasses than it used to be. I have to struggle more when I get tired to focus my eyes than I used to. I'm wondering if that's extreme fatigue from poor sleep night after night? I've been to the eye doctor twice and he says my eyes are fine!

Again, I am trying to eat very carefully good food and I do an hour 3-4 times a week at the gym swimming for an hour, or eliptical machine and weights. If I don't start losing again, next is going to be a strict 2000 calorie a day diet.

Lee

[Emilia]

OSA and lack of O2 has a deleterious effect on many body systems. Your eyes may be reacting due to any number of things, but lack of sleep and higher BP can contribute to it, I am sure.

Do NOT sleep on your back...this is when most events will occur due to the tongue falling back into the throat and closing off the windpipe. It is advisable to sleep on your side to facilitate better breathing.

You need to be patient and keep working to find your sweet spot with this therapy. Once you do that, the other things in your life will fall into place. Better rest and a clearer head will give you the energy to do work and exercise more. That, in turn, will bring down the weight and lower the BP. One thing at a time, though!

Once we know your machine model and mask name those who use the same can offer you their expertise to get them working better for you.

Good luck!

[robysue]

lee_leses,

Welcome to the forum. I'm sorry that you are having problems with sleeping. In addition to all the tips others have given you, I'd also suggest carefully evaluating your sleep hygiene. Sometimes that can adversely affect the quality of sleep, which in turn makes us feel lousy.

My old Remstar is still working, but I'm having issues, I feel terrible a lot, and I also want to know what I will be dealing with if I need to repair or replace my machine. There is a whole different post on all the issues I'm having, this post is just about machines.

We need to know the EXACT model of the CPAP you are using. Resprionics has slapped the name Remstar on every xPAP machine they've made for at least a decade---from the barest bones compliance only machines, through the efficacy data CPAPs, and onto the APAPs and BiPAPs and other more sophisticated machines. Saying you're using a Remstar CPAP is rather like saying you drive a Ford. We know who made the machine, but absolutely nothing useful about the machine.

Someone was telling me today that they got their machine adjusted because it was felt that her carbon dioxide levels were too high.

Without knowing more about why someone suspected CO2 problems and what testing (if any) was done to verify potential problems, it's hard to say whether there's anything in this anecdotal problem with CO2 problems that is applicable to your situation.

CPAP machines and masks are designed to prevent rebreathing of CO2 under normal working conditions. So---if your machine is working correctly and if your mask is in good shape and the exhaust vents are NOT BLOCKED, rebreathing CO2 should not be a problem.

Since the owners manuals of many machines recommend an annual service/inspection appointment with the DME, it's worth taking your machine to the DME to have it tested and serviced. It's also worth carefully inspecting your mask for wear and tear to see if it needs to be replaced. Pay extra careful attention to inspecting the exhaust holes to make sure they are not clogged for some reason.

For quite some time, I wake up groggy and fatigued almost every day. I dream a lot during the night, but still wake up feeling bad.

There are lots of things that can cause waking up groggy and feeling fatigued in the daytime. It might be that you need a pressure adjustment because at your current level too many apneas/hypopneas are still occuring. Or it could be that you've got a different medical condition that's causing the problems. Or it could be the stress that you are under due to the job situation.

If the pressure is turned up higher than 12, I find it too distracting to sleep, and there is a greater tendancy for air to blow down into my stomach, which causes an unpleasant feeling so you can't sleep, and also belching so you can't sleep.

A lot of the time, but not all the time, at a setting of 12, air blows down into my stomach if I sleep on my right side, but not if I sleep on my left side. This is a HUGE problem.

It's called aerophagia and it's a common side effect of xPAP therapy. Search for aerophagia and you'll get plenty of tips on fighting it.

There is apparently a strong correlation between aerophagia and GERD-type problems in CPAPers. And many folks with GERD do have more trouble sleeping on their RIGHT side than sleeping on their left side. Our insides are NOT symmetric and the location of the bottom of the esophagus and its sphincter are such that lying on the left side makes it harder for the sphincter to open and harder for the acid to back up into the esophagus. Using a wedge pillow or elevating the head of the bed by about 4 inches may be enough to allow you to lie comfortably on both sides. Following other self-help GERD guidelines can also help with aerophagia. So try limiting the spicy foods and limiting the amount of food you eat within four hours or so of bedtime.

Other things about the aerophagia:

• For many people learning to sleep with the tongue firmly planted against the roof of the mouth with the tip of the tongue on or near the back of the gumline of your front TOP teeth makes a big difference. When the tongue is in this position, it blocks off the mouth from the rest of the upper airway and that forces the cpap air down into the WINDPIPE (where it belongs) instead of allowing it to enter the esophagus and the stomach.
• Opening your mouth or lips while wearing a nasal mask or a nasal pillows mask allows a rush of air into your mouth. And there's a tendency to swallow all that extra air as soon as you close the mouth. So mouth leaks can aggravate aerophagia directly. And the CPAP compensates for additional unintentional leaking in the semi-closed system by increasing the amount of air being blown down your airway so as to maintain the correct pressure in the system. And so that increases the amount of air available for swallowing. So mouth leaks can aggravate aerophagia indirectly as well. Fixing mouth leaks then is critical for dealing with aerophagia.
• A BiPAP may help with aerophagia. Or not. Like so much else with xPAP, how people with aerophagia problems react to BiPAP is highly individual. For me, switching to BiPAP was critical in bringing the aerophagia down to something I can tolerate on a nightly basis. For others? It made the problem worse.

Also, I'm wondering if at this lower pressure setting or 12, if that forces less air circulation and coud make your carbon dioxide levels higher than the setting of 18 that they want for me based on the studies i've had.

Masks are designed so that even at pressures as low as 4cm, the problems with rebreathing CO2 should be minimized and should be a non-issue. As long as the exhaust holes are NOT blocked.

But---since you've been titrated at 18cm and you are only using 12cm, the pressure setting very likely IS A PROBLEM for managing your APNEA: My guess is that at 12cm you are still having too many apneas and too many hypopneas. And that would explain low O2 levels because you are still having too many O2 desats each night. And that would go a very long way in explaining why you still feel so bad.

In other words, by using the machine at 12cm you are only PARTIALLY treating the OSA. Sure, the machine is likely preventing SOME of the apneas and hypopneas from occurring. But the pressure is too low to prevent the vast majority of them from occurring. And so enough of them continue to happen for you to effectively still have mild or moderate apnea and so you are still experiencing the symptoms of OSA---waking up groggy, daytime fatigue, morning headaches, etc. The symptoms are around because you are still experiencing too many O2 desats every night, not because of any CO2 problems per se.

I was wondering if a cpap with c-flex, or a bi-pap, would allow me to exhale without as much air blowing at me and therefore let me get rid of more carbon dioxide.

C-Flex, A-flex, a Bi-PAP with or without Bi-Flex might all increase your comfort level with exhaling against the pressure. They may also help with the sensation of how much air is blowing at you. But even at high pressures, we can effectively exhale the CO2 we need to get rid of even when we feel as though we can't properly exhale against the pressure.

So yes, you should be using a machine with some form of exhalation relief. Will that be enough to provide you the comfort you need in order to be able to sleep well with the machine? Maybe, maybe not. Given your high titrated pressure needs of 18cm, it could well be that a BiPAP might provide you with some significant relief because the IPAP (inhalation pressure) and EPAP (exhalation pressure) can be set very far apart. And the lower the EPAP can be set, the more likely your stomach will find some relief from the aerophagia issues.

But---a BiPAP requires a different prescription AND the doctors are likely to NOT prescribe a BiPAP without a bi-level titration study. And you've said that you are not able to afford another sleep study ....

If I remember from school correctly, it is when you have a certain level of carbon dioxide in your lungs that it signals your brain to take a breath. This is why people can become ventilator dependant.

Yes, the level of CO2 relative to the O2 level is what triggers the automatic breathing for our bodies---particularly when we are asleep. Too much CO2 is what triggers the initiation for a breath. If an invasive vent (usually with supplemental O2) is adding too much O2, then that ratio of CO2 to O2 can remain low enough for the breathing response to not be triggered automatically.

But for a person with ordinary OSA, this is NOT an issue. The CPAP does NOT effectively alter the CO2/O2 ratios in our blood and does NOT alter the automatic breathing response. The problem in UNTREATED OSA is that our upper airway collapses and even though we are TRYING to breathe in, no fresh air gets into our lungs. The CPAP prevents the upper airway from collapsing and so we breathe much more normally with the CPAP than without it.

Now for the people who have Central Sleep Apnea, there are problems with the body either not maintaining or not responding correctly to the CO2/O2 ratio needed for triggering regular breathing. For some of these people, the CPAP can become a problem and increase the number of central apneas. But you've said nothing about whether you've been diagnosed with Central Sleep Apnea (CSA) or whether central apneas began to emerge with CPAP treatment of your OSA---i.e. whether you've ever been diagnosed with Complex Sleep Apnea. If you have CSA or Complex Sleep Apnea, then you probably do need a more sophisticated PAP machine and that requires another titration study to identify both the type of machine and the pressure settings for the machine.

So, does anyone know anything about this? Is it likely that the reason I feel so bad is because I'm getting a mild case of carbon dioxide poisoning every night when I sleep? It seems like I wake up sicker, the longer I sleep in one night.

If your CPAP is working correctly and your mask's exhaust vents are NOT blocked, then in my humble opinion, you are NOT getting a mild case of CO2 poisoning from using the CPAP equipment every night.

Rather, since your titrated pressure is 18cm and you are using 12cm pressure, it is more likely that you are still experiencing enough apneas and hypopneas that your (treated) OSA is still in the mild to moderate range and that your symptoms are due to the residual OSA instead of any CO2 problems. And the longer you sleep, the more apneas you have, and that's why you feel worse instead of better.

You need to work on a way of building up to the pressure you need to eliminate the vast majority of your apneas and hypopneas. Once they are not happening, the O2 desats will stop. Once the O2 desats stop, the morning grogginess and other symptoms you are ascribing to mild CO2 poisoning should disappear.

On my other post, someone said I might be able to find useful information on why I feel so bad if my machine collects data. I'm going to find out if it does. Does anyone have any thoughts on this?

You NEED to know what your nightly AHI's are. If your machine records AHI data, that will be critical in figuring out if the problem is that you are simply NOT using enough pressure when you have the machine set at 12cm.

I also have asthma, just an FYI, I think that makes this problem worse, my lungs don't work great to begin with.

Asthma complicates everything. Is the asthma under control or not? If not, you need the sleep docs and the asthma docs working TOGETHER. Good luck with that though.

I exercise regularly and I am 6'3", 275. I'm trying to lost weight, but it's unclear if that will help or not. I know skinny people with bad sleep apnea, but I still think weight is a factor. I carry more extra weight in my neck and face than some people who are overweight do, and I think the weight is a factor in my case.

While weight is seldom the ONLY cause of OSA, it definitely complicates everything. For many overweight OSA patients, higher pressure levels are needed to keep the airway open. Losing weight MAY allow a lower pressure to be effective in managing the OSA and in your case, that will help with the aerophagia issues.

Best of luck

[lee_leses]

robysue: I can't thank you enough for the time you took to answer my questions! That is by far the most helpful information I have received in more than 5 years!

In my thinking, I was thinking it's better to partially treat the OSA at 12 than to not treat it at all. But, I think I am severely underestimating how much the pressure of 12 is not enough to treat the problem. Instead of being a "little" less effective, you seem to be saying it's a LOT less effective at treating the OSA!

It is so hard to keep up! Everyone asks me for help with everything and plus my own problems, such as finding medical insurance with all my health conditions when the Cobra ends in November. And everything requires hours of research and reading.

I'm trying to make this a priority since obviously I will be able to get a lot more done if I were to feel better! I will start to read up on the whole air in the stomach thing. It was invaluable for you to confirm that this is in fact a common problem.

Your comments on GERD and left side sleeping were also invaluable!

I forgot to mention not all the time, but often, a large amount of drool is blown out onto my pillow. Now I'm thinking this is because my mouth is open! Duh!

The doctor has told me he thinks it may be a combination of things, apnea, asthma, weight, GERD, and allergies that all are combining so I feel terrible. But breaking the cycle is VERY challenging.

It sounds like I need to work very hard on not eating before bed, something I do all the time.

A few more questions if I may:

What do DME and AHI stand for?

What is sleep hygene?

So you can learn to keep your tongue touching your top teeth, even though you are asleep?

Do you think a good chin strap would help a LOT to keep my mouth shut, or do I need to go to a mask?

Do people sleep successfully on their side with a mask on, or only on their backs, and what masks have people found to be the best or not so good?

Have you ever heard of OSA causing you to be lot more hungry because your brain chemistry is all messed up from the OSA? I think I read that.

And, I put on my reading glasses and looked closely all over this CPAP machine. All I see is "remSTAR." Do you know how I can identify what model or type it is?

I'm wondering in addition to trying to get my pressure settings up and working on my open mouth and other issues, if I could try to get a newer better machine on Craig's List or someplace like Craig's List.

Again, thank you SO much!

Lee B.

PS - Wouldn't it be something if this is the problem and I've been suffering all these years for nothing? I remember I started with the groggyness once in a while in my upper 30's, and it's gotten to the point I wake up like that almost every day...

[Pugsy]

Does the Remstar look like this machine at least overall visually? Might not be same model.
https://www.cpap.com/cpap-machine/respi ... -cpap.html

5 or 6 years old would put it maybe with that one.

Does it have this in the back in a slot?
https://www.cpap.com/productpage/respir ... -card.html

[lee_leses]

My machine looks just like that one, except it does not say "plus" on it.

And, there is no slot for a data card on it, only a small round connector that looks like what a mouse and keyboard used to plug into before they were USB (a PS/2 port).

I'm on a very limited budget, but I'm hopeing some of you can tell me what new machine would be good. Or at least newer with data recording and c-flex.

My first goal is to try to deal with the leak out of my mouth by trying to get used to a full mask.

Lee