HELP diagnosed w/ apnea; still very tired; CPAP doesn't work

[Janknitz]

So you can't ignore the GERD, but you need to be aware that conventional medical treatment for GERD usually makes things worse, not better.

I'm highly skeptical of your blanket dismissal of the current theory and treatment of GERD. Let's not forget that GERD has some long term side effects, including cancer risk.

I have also seen a lot of articles saying that the conventional treatment of GERD by acid reducers actually hurts.

I've seen a lot of articles saying that vaccines cause autism, and that this or that miracle food is the cure for all your ills. I remember when the Pillar procedure was going to be the new cure for apnea that would eliminate CPAP. There are even articles on UPPP as the miracle cure for apnea.

It's possible that the current theory and treatment for GERD is all wrong, but it's foolish to assume it is based on a few articles challenging the currently accepted medical theory.

I will agree that there are significant problems with the drugs used to treat GERD. However, there are also problems with untreated GERD as well.

Here we have someone on the current treatment for GERD, omeperazol--the "gold standard" STILL having GERD, which may be a big factor in all the sleep issues.

[palerider]

(Having looked at in preview mode, I can see that it's not very clear. To create the image, I created a pdf from the report in the software, and then posted it directly. If someone has some tips on generating a clearer image, please let me know.)

post a screenshot, not the printed 'report'
how to is in the following three links...

https://sleep.tnet.com/resources/sleepyhead/shorganize
https://sleep.tnet.com/resources/sleepy ... screenshot
https://sleep.tnet.com/reference/tips/imgur

[tan]

as tan suggested, I've put up my sleepyhead results below. Any comments are welcome.

The night represented in the report was a somewhat atypical one, in that I used nasal plugs, not a nasal mask, but it is typical in the sense that, despite a low AHI and low leakage, I felt pretty bad afterward. I used some Resmed P10 nasal pillows; taped my mouth. I used CPAP for about five hours. Afterward, I was very tired, lots of aches, actually more than usual.

Why CPAP mode and 6cm??

[tigerbear]

Thanks for the tips. Here is another report, hopefully more clear and better formatted:



This is a different report than from before. It represents maybe my best night with CPAP -- but as I noted before, my best night with CPAP isn't better than not using it at all. I still felt tired and not so clear headed after this night, but there have been many other worse nights.

As you can see, the AHI is very low and I think the leakage is low too. I was using a nasal mask and taped my mouth. I probably woke up sometime in the middle of the night and thus was using the CPAP while awake and drifting in and out of sleep (after 2/3 am or so), so that may throw the results of a bit.

tan: To answer your question, the reason I used a CPAP pressure of 6 in the other session (the one shown in the previous, unclear report) was because people in this forum had suggested using a constant, CPAP pressure, rather than an automatically set pressure. I picked a pressure level of 6 just to start low and slow (the median pressure on the above report was 7, so I decided to begin at 6 and work my way up using CPAP.)

By the way, tan, I think it was you who noted that you use a full face mask, but you take your mouth. I was wondering, why do you do that? Is it perhaps because nasal masks or nasal pillow didn't work for you? Or do you have some nasal obstruction? I'd be curious to hear your experiences, since they might be similar to mine. Thanks!

Any thoughts on the report would be welcome. It's puzzling to me because 1) I have a low AHI but am not feeling well afterward 2) because I have a low AHI and the leakage alarm didn't go off, it's not clear to me where I go from here or how I should adjust my settings for future nights.

[archangle]

ResMed S9 machines only show the "unintentional" leak, so in theory, it should be zero. I'm assuming the A10 machines do the same.

You can't tell on an S9 if your unintentional leak rate is too low because the machine throws away anything below "zero."

I'm confused by your leak graph, though. Either they've changed how it works, or something about your leak is confusing the machine.

[tan]

Thanks for the tips. Here is another report, hopefully more clear and better formatted:

This is a different report than from before. It represents maybe my best night with CPAP -- but as I noted before, my best night with CPAP isn't better than not using it at all. I still felt tired and not so clear headed after this night, but there have been many other worse nights.

As you can see, the AHI is very low and I think the leakage is low too. I was using a nasal mask and taped my mouth. I probably woke up sometime in the middle of the night and thus was using the CPAP while awake and drifting in and out of sleep (after 2/3 am or so), so that may throw the results of a bit.

tan: To answer your question, the reason I used a CPAP pressure of 6 in the other session (the one shown in the previous, unclear report) was because people in this forum had suggested using a constant, CPAP pressure, rather than an automatically set pressure. I picked a pressure level of 6 just to start low and slow (the median pressure on the above report was 7, so I decided to begin at 6 and work my way up using CPAP.)

By the way, tan, I think it was you who noted that you use a full face mask, but you take your mouth. I was wondering, why do you do that? Is it perhaps because nasal masks or nasal pillow didn't work for you? Or do you have some nasal obstruction? I'd be curious to hear your experiences, since they might be similar to mine. Thanks!

Any thoughts on the report would be welcome. It's puzzling to me because 1) I have a low AHI but am not feeling well afterward 2) because I have a low AHI and the leakage alarm didn't go off, it's not clear to me where I go from here or how I should adjust my settings for future nights.

Thanks for the report. I have to retract my earlier statement that your situation is similar to mine. Our pre-treatment situations were quite the same. But when while treatment, we have differences. First of all, you have virtually no FLs. Your CPAP therapy is almost perfect. In one of my posts on this thread, I already addressed your questions on taping with FFM. Please see viewtopic.php?p=978455#p978455

I rather agree with others indicating that GERD could be the major problem here. However, if that is your best night, can you please also share your "average" night, just to rule out untreated UARS.

As far as GERD is concerned, my amateur understanding is that the existing approach with medication treats consequences, not the cause, which usually is low production of gastric acid.

Suggestion, I would turn off the ramp off.

[Julie]

Not sure if it's come up somewhere here, but when's the last time you had a full physical, with labs, thyroid check, possible hormonal or other issues being looked at (along with your allergies)? Sometimes when something's new (like Cpap) everything wrong seems like it should be related, but maybe it isn't.

[palerider]

Thanks for the tips. Here is another report, hopefully more clear and better formatted:

VERY nice presentation!

[tan]

And what do you mean by eating "healthy", Tigerbear? The great American food pyramid by chance? Or some other low fat abomination like Michelle Obama's Plate?

[grapeshly]

Let me tell you about my journey, and maybe something will resonate with you.

Unlike you, I was able to take to the CPAP immediately. However, while my sleep improved somewhat, and my worse symptoms went away (frequent urination, drowsiness during the daytime, and my incipient GERD), what puzzled me was that I still didn't sleep very well. I would nearly always wake up after 4 to 5 hours of sleep, and then I would toss and turn, unable to fall asleep again. Many nights I had trouble getting drowsy and falling asleep. Believe me, I am convinced that the CPAP saved my life, but sleep was still not very satisfying.

FIrst thing I did was to try going gluten free. Yes, I know it sounds like a hippy-dippy thing. I really did this to try to "recalibrate" my bowels, which didn't seem to be doing their job very well. It was part of what they call an elimination diet, to see if I had any food sensitivities. Well, to my utter astonishment, my chronic allergy symptoms -- drippy nose, slightly inflamed nasal tissue -- completely disappeared!! For the first time ever, my nasal passages were clear. WTF!! But the connection to gluten was too obvious to deny. Whenever I eat bread, the nasal drip returns! So, I just go with it. (oh, and my bowels began to perform their job better, too. Win!!)

While this fixed my "allergy", I still slept like crap. I began to look into other things that could cause this. One obvious one is some sort of hormonal imbalance. Or maybe it was something called "Adrenal fatigue". THis is not a recognized medical condition, FYI, but I seemed to have some of the symptoms, such as chronic stress and chronic anxiety. My thoughts never quite calm down, and I'm always stressing about something. But then, maybe my problems were due to a thyroid problem.

Thyroid tests showed nothing wrong. (I took some in-depth thyroid tests, not just the one every doctor prescribes.) My cortisol (an indicator of adrenal function) shows up as very low, but not completely off the chart. However the more I thought about it, the more I began to realize just how stressed I was. I was in a state of low-level but constant anxiety. Not knowing how to reverse this, I tried some supplements. I tried several, giving each one time to do what they were supposed to do. Valerian didn't help me sleep. 5HTP was supposed to help create a precursor to Melatonin, but that didn't help. An herb called Withania helped some. (AKA ashwaganda.) Finally, I learned that I had an extreme vitamin D deficiency (pretty common, in turns out, in North America). I took megadoses of vitamin D, which helped my skin, but I did not see any other effects. (VItamin D is a hormone, and some people report better sleep or weight loss when they get the proper amount.) What seemed to help was increasing my Magnesium intake. (Another mineral that some sources say we are chronically short on, and a mineral necessary to aid in calcium absorption.) And finally, I stumbled onto GABA, which I take nightly now. The combination of magnesium and GABA has helped calm my thoughts, and now I can get drowsy enough to fall asleep. I am still working on not waking up after about 5 hours, but more and more I get nights where I can sleep all the way through. I've also started meditating regularly. At first it was hard to figure out what meditating really is, and what technique works for me. IMO, this is different for different people. But now I'm getting into the swing of it, and I do about 20 minutes most nights.

ALL this is to say that your sleep issues may have other rood causes.

[tigerbear]

Let me tell you about my journey, and maybe something will resonate with you.

Unlike you, I was able to take to the CPAP immediately. However, while my sleep improved somewhat, and my worse symptoms went away (frequent urination, drowsiness during the daytime, and my incipient GERD), what puzzled me was that I still didn't sleep very well. I would nearly always wake up after 4 to 5 hours of sleep, and then I would toss and turn, unable to fall asleep again. Many nights I had trouble getting drowsy and falling asleep. Believe me, I am convinced that the CPAP saved my life, but sleep was still not very satisfying.

FIrst thing I did was to try going gluten free. Yes, I know it sounds like a hippy-dippy thing. I really did this to try to "recalibrate" my bowels, which didn't seem to be doing their job very well. It was part of what they call an elimination diet, to see if I had any food sensitivities. Well, to my utter astonishment, my chronic allergy symptoms -- drippy nose, slightly inflamed nasal tissue -- completely disappeared!! For the first time ever, my nasal passages were clear. WTF!! But the connection to gluten was too obvious to deny. Whenever I eat bread, the nasal drip returns! So, I just go with it. (oh, and my bowels began to perform their job better, too. Win!!)

While this fixed my "allergy", I still slept like crap. I began to look into other things that could cause this. One obvious one is some sort of hormonal imbalance. Or maybe it was something called "Adrenal fatigue". THis is not a recognized medical condition, FYI, but I seemed to have some of the symptoms, such as chronic stress and chronic anxiety. My thoughts never quite calm down, and I'm always stressing about something. But then, maybe my problems were due to a thyroid problem.

Thyroid tests showed nothing wrong. (I took some in-depth thyroid tests, not just the one every doctor prescribes.) My cortisol (an indicator of adrenal function) shows up as very low, but not completely off the chart. However the more I thought about it, the more I began to realize just how stressed I was. I was in a state of low-level but constant anxiety. Not knowing how to reverse this, I tried some supplements. I tried several, giving each one time to do what they were supposed to do. Valerian didn't help me sleep. 5HTP was supposed to help create a precursor to Melatonin, but that didn't help. An herb called Withania helped some. (AKA ashwaganda.) Finally, I learned that I had an extreme vitamin D deficiency (pretty common, in turns out, in North America). I took megadoses of vitamin D, which helped my skin, but I did not see any other effects. (VItamin D is a hormone, and some people report better sleep or weight loss when they get the proper amount.) What seemed to help was increasing my Magnesium intake. (Another mineral that some sources say we are chronically short on, and a mineral necessary to aid in calcium absorption.) And finally, I stumbled onto GABA, which I take nightly now. The combination of magnesium and GABA has helped calm my thoughts, and now I can get drowsy enough to fall asleep. I am still working on not waking up after about 5 hours, but more and more I get nights where I can sleep all the way through. I've also started meditating regularly. At first it was hard to figure out what meditating really is, and what technique works for me. IMO, this is different for different people. But now I'm getting into the swing of it, and I do about 20 minutes most nights.

ALL this is to say that your sleep issues may have other rood causes.

grapheshly: thanks for the comments. Like you, I've also gone from doctor to doctor, exploring other concerns. I have tried going off gluten; have tried doses of different vitamins. Some help some, but then suddenly I'll feel not so great; so I've never been able to establish a clear causal connection.

That said, I might try GABA, just to help me relax, as I relate to that feeling of agitation when you wake up. I have taken magnesium in the past, but not the combination. I'm also trying to now reduce my consumption of starches in general.

[tigerbear]

And what do you mean by eating "healthy", Tigerbear? The great American food pyramid by chance? Or some other low fat abomination like Michelle Obama's Plate?

tan: I've jumped from diet to diet over time, but for the last six weeks or so I've been pursuing an anti-gerd diet: no spicy foods, garlic, onions, acidic foods or very fatty foods.

Lately, a daily diet might consist of: nonfat greek yogurt with some jam as a sweetener, chicken soup, stewed chicken, greens (kale, spinach), some rice, beans of various kinds. Generally, I've been trying to stay low fat, but mix in some greens and beans for variety, nutrition and fiber.

[tigerbear]

Not sure if it's come up somewhere here, but when's the last time you had a full physical, with labs, thyroid check, possible hormonal or other issues being looked at (along with your allergies)? Sometimes when something's new (like Cpap) everything wrong seems like it should be related, but maybe it isn't.

I have had a full physical with my doctor maybe a year ago. Generally, they found nothing (other than a slightly low oxygen saturation reading, which led me to go back to sleep apnea as a possible issue.) I was seeing a thyroid doctor for a while, as there is some debate whether thyroid problems exist, even if your blood tests don't indicate any problems. Experimentally, I was put on a replacement dose of thyroid hormone, but it made my blood levels of thyroid shoot up and I became hyperactive.

I did recently discover that I have substantial allergies to pollen and dust; and my allergist says my nasal passages are very constricted.

I will probably explore soon whether I have GERD. That is something that I am increasingly concerned about -- as I seem to have many of the symptoms, and apparently people on the forum have been saying that it can disrupt sleep quite a bit.

[tigerbear]

Thanks for the report. I have to retract my earlier statement that your situation is similar to mine. Our pre-treatment situations were quite the same. But when while treatment, we have differences. First of all, you have virtually no FLs. Your CPAP therapy is almost perfect. In one of my posts on this thread, I already addressed your questions on taping with FFM. Please see viewtopic.php?p=978455#p978455

I rather agree with others indicating that GERD could be the major problem here. However, if that is your best night, can you please also share your "average" night, just to rule out untreated UARS.

As far as GERD is concerned, my amateur understanding is that the existing approach with medication treats consequences, not the cause, which usually is low production of gastric acid.

tan: thanks again. I am concerned about GERD being a possibility too. Pre-MMA surgery, they did stick a tube down my throat and found substantial evidence of GERD i.e., burn marks on the esophagus. It was much improved after the surgery -- I didn't feel the acid in my mouth any more -- but I am concerned it is disrupting my sleep again, although in a more subtle way.

But can GERD worsen a person's sleep as badly as, say, bad sleep apnea? Are there people out there who have a lot of the symptoms of sleep apnea -- brain fog, depression, etc. -- but have it due to GERD?

I have provided another sleep study below:


This is for a night that was average, even rather bad. According to the CPAP machine, leak was at acceptable levels; I could only handle 4 hours of CPAP, though, before I was forced to tear the mask off. AHI is higher than before -- 1.95.

The flow limitation only spike occasionally, reaching a maximum of 0.22. Is that considered negligible? For people who have mild or moderate apnea, what kind of frequency and magntiudes are they typically seeing?

There are six events are 1:30 am - 2 am , which is often where I wake up and then have trouble getting back to bed. Not sure if that means much.

I was using a full mask during this session, with APAP pressures of 5-10.

Any comments on the report would be appreciated!

[tigerbear]

A fair number of people who have shared comments on this thread have indicated that I might have a GERD problem, and that that is disrupting my sleep.

My thought about attacking that is to be stricter with my diet; further elevate my bed; I also have considered using a Oracle mask as well. My allergy doctor (who has a lot of experience with sleep apnea patients) noted that she feared I had GERD too; and that since my nasal passages are constricted, I was breathing through my mouth, and mouth breathing draws up the stomach acid through a siphon-like effect.

Given that logic, it seems to me that an Oracle, oral breathing-only mask might work. It would force me to get all my air through my mouth, rather than through my constricted nasal passages; and the extra pressure, hopefully, should work against the GERD. If anyone has any thoughts or experience with this, please let me know. Thank you all.