The eyes again

I could be wrong about this. But it seems to me like if the machine hangs out at the highest apap number for most of the night, that that's an indication that more pressure is needed, because I know it's possible, from other stories I've read, to have a good AHI and still feel like hell. I have wondered how I would feel if I had the lower pressure set high enough that it could prevent some of the jumps, and the higher setting high enough that the graph never touched the highest setting. I don't know if that's possible, I don't know if I had it set at 9-12 if the graph would just sit at 12 all night and I would just keep setting it higher and higher into unsustainable (for me) levels of pressure. I don't care about living longer; I just want to get up some morning and not feel like hell, to not have to sit down and rest after taking a shower or doing the dishes.

I hear what you are saying about continuing my experiments at a pressure of 8. I tried that for one night because I wanted to see if my eyes would be better (lousier graphs aside) and they weren't; they were just as inflamed as they'd been at 7-10. But if that was because of the ointment or other variables, yeah, not sure. I don't think I would keep the pressure at 8 for a week without the blessings of the sleep nurse. I think I would like to give her a chance to respond to the information I have been gathering. I will ask her what she thinks about going back down to 8 to see how my eyes do. Thanks for giving me that idea.

AMK wrote:I could be wrong about this. But it seems to me like if the machine hangs out at the highest apap number for most of the night, that that's an indication that more pressure is needed,

That ain't necessarily so.

Sometime the pressure increase is due to the machine scoring flow limitations that are NOT actually disruptive of the patient's sleep. And in that case, the additional pressure OR the pressure increases themselves can lead to more problems than benefits.

Here's the thing about flow limitations: While some of them may indicate that events might start happening, some of them are NOT associated with additional events. There's a reason that "flow limitation" is NOT scored as it's own event on an in-lab NPSG: They're not all created equally. Some of them are indicative of problems that can be fixed by added pressure and some aren't. I wish Morbius would stop by; he explains this stuff far better than I can. If I have a chance, I'll try to look for one of his posts that says something about this.

At any rate, if your flow limitations are the kind that don't readily respond to additional pressure, there's no point in trying to use additional pressure to smooth out the Flow Limitation curve and there are two important reasons, called your eyeballs, for NOT increasing the pressure in an effort to "improve the OSA data numbers."

because I know it's possible, from other stories I've read, to have a good AHI and still feel like hell.

Yes. But the $64,000 question in those cases is Why does the person still feel like hell?. As Morbius put it back in his/her Muffy/NotMuffy days: CPAP doesn't fix bad sleep. It fixes sleep disordered breathing and nothing else. If the sleep remains bad for reasons other than sleep disordered breathing, tweaking the CPAP/APAP settings after the OSA has been adequately addressed is not likely to fix the remaining bad sleep problems.

I have wondered how I would feel if I had the lower pressure set high enough that it could prevent some of the jumps, and the higher setting high enough that the graph never touched the highest setting. I don't know if that's possible, I don't know if I had it set at 9-12 if the graph would just sit at 12 all night and I would just keep setting it higher and higher into unsustainable (for me) levels of pressure.

It's just as likely that no matter where you set the max pressure, flow limitations may continue to cause your pressure to max out. A year or so ago I did a brief experiment with increasing my max IPAP to allow it to go much higher than my normal max IPAP = 8. There was no decrease in FL and there was a huge increase in aerophagia as well as more problems with air-in-the-eyes. And more night time awakenings as I recall.

I don't care about living longer; I just want to get up some morning and not feel like hell, to not have to sit down and rest after taking a shower or doing the dishes.

Then let's attack the problem holistically: Now that CPAP at 8cm or APAP at 7-10cm controls the OSA, what else can you think of that may be adversely affecting the quality of your sleep? And what else contributes to you feeling like hell during the day?

Here's a possible short list of things that may need to be considered:

• Length of time on PAP. It takes some people several months before their energy levels start to return to normal. And the improvement in daytime functioning can be very incremental. Most of us do NOT simply wake up one morning singing "Glory Hallelujah! I feel fantastic this morning!" Rather, most of us start to notice small, but persistent improvements over time. In my case, the first improvement was not waking up with hand and foot pain, which happened about 5 months after I started PAPing. Getting back to having a lot of daytime energy took me a lot longer than normal---as in about 8-9 months or so.
• Other sleep disorders. While PLMD data is usually collected during a sleep test, it can start to manifest itself after CPAP is started. Or there can be other sleep problems, including plain old insomnia, that can cause problems, but may not have been looked for at the time the sleep test was done.
• Medicines and other medical problems. Many medicines can cause fatigue as a side effect. If you are taking daily medication, it's worth talking to the pharmacist as well as the prescribing doctor about whether the medicine may be making you tired during the day. Or whether the medicine can cause problems with sleep. Thyroid conditions are often diagnosed after the patient complains of severe daytime exhaustion. It's worth having a complete physical exam with all the standard blood work, including thyroid and vitamin levels done if you haven't seen much improvement in terms of daytime fatigue after you've been successfully PAPing for several months.
• Chronic pain. Living with even mild, but chronic pain can be exhausting. Sometimes the cause of the pain can be treated and the pain thus minimized or eliminated. Sometimes it can't, but the pain can itself can be treated and managed by a good pain specialist. (In my case I was unaware of just how exhausting my chronic daily headaches were making me until after I got them under control.)
• Lifestyle issues. Lack of exercise and a poor diet can lead to fatigue even before they might lead to weight gain.
• Lifestyle issues part 2: Over consumption of caffeine and alcohol can both lead to some pretty nasty sleep problems.
• Lifestyle issues part 3: A lot of us have pretty bad sleep hygiene. We do a lot of things that inadvertently leads to poor sleep quality. Too much blue screen stuff too late in the night. Wildly varying bedtimes and wake up times. Doing too many nonsleep related things (reading, watching tv, web browsing, eating) in bed.

I hear what you are saying about continuing my experiments at a pressure of 8. I tried that for one night because I wanted to see if my eyes would be better (lousier graphs aside) and they weren't; they were just as inflamed as they'd been at 7-10. But if that was because of the ointment or other variables, yeah, not sure. I don't think I would keep the pressure at 8 for a week without the blessings of the sleep nurse. I think I would like to give her a chance to respond to the information I have been gathering. I will ask her what she thinks about going back down to 8 to see how my eyes do. Thanks for giving me that idea.

Yes, do ask her what she thinks about going back to 8cm. It sounds as though she changed you to APAP 7-10 at your request rather than because she saw something of a concern in your data. My guess is she'll say, sure let's go back to 8 if that's what you want.

Actually I'm slowly getting my vitamin D and iron levels up where they should be after blood work showed they were too low. I have RLS and was once diagnosed with PLMS but it didn't come out in the sleep studies. The low iron could account for the RLS. The only med I'm on is Trazodone for sleep, and I take a tiny dose, just 1/4 a pill a day. Yet oddly if I don't take that 1/4, I wake up after 2-3 hours of sleep. I was hoping cpap would fix that since I now think what was waking me up was all the apneas during REM sleep.

You make some good points and I do have issues that cause a lot of stress in my life, some that I have more potential control over than others. I know a guy here in town who had really off-the-charts severe apnea, and he was one of the lucky ones...got handed a machine and a mask and it was all rainbows and unicorns from the first night. He's just delighted. So much new energy. So I got it in my head that if I could get even just a little more energy from cpap then I might be able to address some of the larger issues in my life rather than being spent after the day's most basic chores. I saw it in my head: cpap gets me on course by the end of the winter, I spend spring getting some major issues taken care of, and go from there. And yet here I sit, still spent. Lack of exercise is a big one, and I thought that might come more naturally once cpap gave me just a hair more energy. Apparently that may all take much longer. OK. I'm grateful to have been shown that I was operating under a set of flawed assumptions.

AMK wrote:I know a guy here in town who had really off-the-charts severe apnea, and he was one of the lucky ones...got handed a machine and a mask and it was all rainbows and unicorns from the first night. He's just delighted. So much new energy.

The folks with the most severe OSA are often the ones that benefit the most and benefit the quickest from XPAP therapy: Many of their other problems are directly caused by the extremely severe OSA, and getting the OSA under control makes a huge difference.

Many (but not all) of us with more moderate OSA may take longer to see real improvement: While we may be miserable pre-CPAP, it is more likely that some of our misery is not directly caused by the OSA, and hence the CPAP doesn't make as big or as immediate of an impact.

So I got it in my head that if I could get even just a little more energy from cpap then I might be able to address some of the larger issues in my life rather than being spent after the day's most basic chores. I saw it in my head: cpap gets me on course by the end of the winter, I spend spring getting some major issues taken care of, and go from there. And yet here I sit, still spent. Lack of exercise is a big one, and I thought that might come more naturally once cpap gave me just a hair more energy.

There's nothing wrong with hoping that this will happen (eventually). But remember: You've hit a real snag in making this therapy work that your friend never faced---your eyeballs are screaming at you. Even if your energy levels are beginning to very slowly improve, the angst of dealing with the air-in-eyes problem is going to suck some energy out of you. So concentrate on figuring out how to PAP without the eyes getting swollen and sore and inflamed each night. After you get over that very significant "bump", it's possible that you will start to notice some small improvement in your daytime functioning.

Keeping a log may help you identify the first signs that PAP is doing something positive for you in terms of how you feel and function each day. I would never have noticed the lack of hand and foot pain if I'd not been busy keeping a sleep log as part of the First War on Insomnia: There was too much other negative stuff going on at the time, including my struggles with CPAP and chronic migraines, for me to have noticed the lack of pain if I hadn't started writing "Woke up with no hand/foot pain" in the sleep log every morning in a cold and dark February.

Best of luck. I do think if you can figure out how to keep the eyes from getting unhappy every night due to the PAP, it will be much easier for you to start noticing CPAP-caused improvements in terms of your energy levels.

AMK wrote:You make some good points and I do have issues that cause a lot of stress in my life.

which is quite detrimental to your sleep's quality. if you wish to keep your money, you may want to research the topic of CBT for insomnia. Or a sleep psychiatrist, if you can afford, which is a much more expensive variation of the option from my previous sentence plus some meds.

My sources of stress are situational, not psychological. A therapist would have nothing to say to me except, for instance, "Yeah, you need to move." But given all that I actually don't feel like I struggle with insomnia. I fall asleep fast and hard because I am so exhausted. Nothing to use CBT on.

I consider all my eye experiments a failure and will be contacting the sleep nurse today. I took a nice hideous picture of my eye this morning to help get my point across. Getting the wrong RemZzz mask liners because of a faulty chart on cpap.com didn't help but I'm pretty sure those aren't going to help me. I went ahead and opened the ones I got because I was so desperate to try them and I really didn't like them, plus the irony was that in trying to adjust them the edge of one raked across my eye. I didn't attempt to sleep with it in place, just used the cushion against skin and eye gel this time and the eyes were as bad as ever in the AM. I have seen that the Fit Life actually makes some people's eyes worse, which makes sense because you would have the air and pressure on the eyes, and I've decided I'm not going to try it unless an ophthalmologist tells me to.

Keeping a log is a good idea. I'm in the habit of putting some notes into the note section of Sleepyhead but I could write more than I do.

AMK wrote:My sources of stress are situational, not psychological.

Been there, done that. There are, however, good, less good, somewhat bad and (very) bad ways of dealing with situational stress. Try to opt for the good ways instead of the bad ways. I know from long experience that's easier said than done.

But given all that I actually don't feel like I struggle with insomnia. I fall asleep fast and hard because I am so exhausted. Nothing to use CBT on.

The time it takes to fall asleep is only one way insomnia can manifest itself. And I'm glad to hear you don't have a problem with bedtime/sleep onset insomnia.

But do you stay asleep throughout the night? Or do you find yourself waking up a lot? And if you do wake up a lot, do you ever find it hard to get back to sleep?

Do you ever wake up earlier than you want to and find yourself unable to get back to sleep?

I consider all my eye experiments a failure and will be contacting the sleep nurse today. I took a nice hideous picture of my eye this morning to help get my point across.

Send that picture to both the sleep nurse AND the opthamalogist. They both need to know what's happening to your poor put-upon eyeballs.

My guess is that the whole unexpected CPAP-related problem with your eyes is a huge contributor to your stress right now. And my guess is that the fact that the eyes are doing so poorly is also contributing to your daily fatigue. In other words, even if the CPAP is giving you a smidge of extra engergy (from fixing the apneas), dealing with the eye problems is taking away every bit of that energy and more. And it doesn't help that what you've been told to do by the eye doc doesn't seem to be doing any good.

Getting the wrong RemZzz mask liners because of a faulty chart on cpap.com didn't help but I'm pretty sure those aren't going to help me. I went ahead and opened the ones I got because I was so desperate to try them and I really didn't like them, plus the irony was that in trying to adjust them the edge of one raked across my eye.

Yikes!

I didn't attempt to sleep with it in place, just used the cushion against skin and eye gel this time and the eyes were as bad as ever in the AM.

At what pressure(s)? Straight CPAP at 8? Or APAP at 7-10 with the pressure hanging out at 10cm for much of the night?

Keeping a log is a good idea. I'm in the habit of putting some notes into the note section of Sleepyhead but I could write more than I do.

My suggestion is to focus on a few very important things that you can track every day regardless of how you feel. Seems to me that the obvious things to track are:

1) How bad the eye(s) feel and look. And roughly how long it takes them to get back to feeling and looking normal.

2) How you feel *other than the eyes* when you first wake up: Like death warmed over? Sort of bad? Sort of ok? Kind of rested? Pretty good? Really great?

3) Daily energy level. (A quick numerical scale might help you keep this one. You don't need to be writing at length about how bad you feel in terms of daily energy.)

4) Daily brain fog level. (Again, a quick numerical scale might help you keep this one. You don't need to be writing at length about how bad you feel in terms of brain fog.)

5) Make a note of any pain issues during the day. Also make a note of any exercise you get during the day, even if all you've done is a 5-10 minute walk. (It's surprising what a short walk can do when you feel too tired to do anything.)

Notes about 3-5 should be done late in the day, but not necessarily right before bedtime.

The machine is still set to 7-10 because I hadn't written a note to the nurse yet. Sure, last night was more of the same, with the machine banging against that 10 in response to flow limitations while the AHI looked great (0.38). I'm going to see if I can get a cervical collar today at the drug store. That's my next big flow limitation experiment. If I can sleep in it.

I wake up sometimes during the night when I flip to the other side and the mask needs to be adjusted because a leak starts. The Pico is the best mask I have tried but still it'll go a little crooked sometimes. When I started cpap I had a lot of trouble with being wide awake and frustrated after four hours of sleep. Now I am waking up after 6.5-7 hours of sleep which doesn't feel like enough sleep. I always see an event around the time I wake up...this morning it was a hypopnea. It wasn't the resultant pressure spike because the pressure was already at 9.75cm when the H happened. This morning I was able to go back to sleep but usually I just get up and slog on through. I have no idea what 8 uninterrupted hours of sleep would feel like.

I have a neighbor situation that can result in me going to bed later than I would like, because there's no use going to bed if I'm going to be frightened awake by noise. This is part of the situational stress I mentioned. I have the best non-custom earplugs on the market but there are still certain sounds that can get through. If I had a choice I would go to bed earlier most days which would probably improve my quality of sleep. I hear you about some ways of dealing with stress being better than others.

Brain fog is bad today. I am very forgetful. I will be in the middle of doing something and wander off. That's a good idea to track specific things so I can look back for progress.

I thought I was pretty clever because I put my big white wide chin strap on over my mask last night, which made it a little more stable. Wow, did I wake up to strap marks! I looked like a cat with whiskers. Thanks again for all the ideas!!