The eyes again

[BlackSpinner]

The problem is that AMK has seen an opthalmologist who just doesn't get it:

Yes they have to get a referral from their sleep doctor or sit down with the "telephone book" and call every single ophthalmologist with driving distance and ask them if they have experience dealing with people on xpap therapy. It is not like this is something new - there was a link on this site to an ophthalmologist site describing the issues when I first came here over 5 years ago.

[robysue]

The problem is that AMK has seen an opthalmologist who just doesn't get it:

Yes they have to get a referral from their sleep doctor or sit down with the "telephone book" and call every single ophthalmologist with driving distance and ask them if they have experience dealing with people on xpap therapy. It is not like this is something new - there was a link on this site to an ophthalmologist site describing the issues when I first came here over 5 years ago.

You've got a reasonable idea there: It's not a bad idea to either ask the sleep doc for a referral to an opthamologist who understands the connections between CPAP therapy and eye problems in the (very) small percentage of patients who experience the kinds of problems AMK is having.

Sitting down with the phone book and calling is worth a shot as well.

[herefishy]

I googled chemosis, and there was one report of it resolving with a change from medication from Atorvastatin to another statin. Are you by chance taking this for high cholesterol?

[robysue]

Robysue, during my titration study I spent very little time in REM which is where I stop breathing the most, so I've gotten the impression that the choice of 8 as my pressure was a bit of a shot in the dark. When I looked at my data in Sleepyhead, I saw a lot of flow limitations even though my AHI looked good.

Outside of the swollen eye problem, how are you feeling? It may be that trying to eliminate the flow limitations is not going to really improve your sleep any. Or it may be that if you could eliminate them you might feel better---provided, of course, the swollen eyes problem was addressed.

I asked if I could try apap and the sleep nurse chose 5-9. Since my pressure some nights went to 9 and stayed there, I asked about 7-10. But all this raising the pressure isn't making my flow limitation graph look any calmer. I'm not sure anymore that the goal of a good flow limitation graph is a good goal for me. You can see last night that 7-10 isn't dampening the flow limitations

It looks to me that the only reason your pressure is sitting at close to your max setting all night is the flow limitations. Flow limitations are not problems for everybody. But they can be major problems for some people. So two major questions you need to be asking yourself:

1) When you were at 8cm, were you having eye problems triggered by air leaking into your eyes via the tear ducts?

2) How was your daytime functioning when you were at 8cm? Were you waking up rested? Did you have enough energy to get through your day? How much brain fog were you still experiencing?

If the *only* reason you asked the sleep nurse about switching you to APAP and upping the pressures was that your data showed a ragged flow limitation graph and there were no problems with air leaking into your eyes at 8cm, then you may very well be better off using a fixed 8cm rather than the APAP range you are currently using.

You might also want to read through the entire thread Flow limitation: when are they considered significant? started by tan. There's also several links in that thread that may be of interest to you as well.

and in fact my AHI is worsening (and what is up with that hour o' doom around 2-3AM).

As hours o'doom go, yours is actually pretty tame: There are only 9 events between 1:50AM and 3:10AM.

The end of your hour o'doom may be a REM-related cluster based on the time it happens. How often do you have hours that look this bad? And keep in mind that most of us have hours o'doom in our data at times. If the hours o'doom are isolated---as in a bad hour here and there on a few nights a week, they may not be worth worrying about.

[Lukie]

You can get special soft silicone eye covers made specifically for dry eye from CPAP. I have them and they work quite well. They are not tight against your orbits so you won't get marks or soreness. They should not be used if you corneal ulcers.

[Lukie]

You get these eye covers online from the Dry Eye Shop.

[archangle]

Yes, there is a mouth only mask but your nose has to be useless (or physically blocked with clips) and I would have such a problem with that. I am such a nose breather that switching to mouth only would be a huge change and a change that I don't know that I could make.

What do you mean by "your nose has to be useless?"

In order to help with nasolacrimal duct leaks, you have to learn to use an oral mask without the nose plugs. In theory, you can learn to use it that way. It's the same thing you do when you blow up a balloon. You have pressure in your mouth and lungs, but no air comes out of your nose.

I tried an oral mask and was able to use it without the nose plugs. I found the mask uncomfortable to use because it dried my mouth and throat out and not breathing through my nose bothered me. If I had eye or ear problems, I could probably make myself live with it.

There is some info on the Oracle oral mask in the Useful Links in my signature line below.

You can't use a total face mask if you have glaucoma according to the manufacturer. Be sure to ask your eye doctor about your eye pressure.

[AMK]

Thank you all for the responses.

Herefishy - I don't take statins. I don't have high cholesterol. Thanks for looking it up.

Robysue - One reason I asked about going to apap was because I didn't feel rested at a pressure of 8 and I wanted to find out if there was a better pressure for me. But my lack of response could be because of being new to cpap. The nurse says that in patients with severe REM apnea oftentimes they get worse before they get better. So far I've had one night where in the morning I felt better than usual, and that seems to have been random. Probably the smart thing to do would have been to make no changes for three months, but I get so envious when I read the overnight success stories, people bounding out of bed after their first night with cpap feeling reborn and energized while I'm still crawling through the day. But I would have to say, looking over my notes in Sleepyhead, that I have deteriorated since going to apap.

At 8cm I don't think I was having the eye problems. But I still had a lot of brain fog, lack of energy, etc. It's weird because at my titration study I only slept 5 hours and I was physically tired but I had a mental clarity that was new. I've wanted to recapture that and so far it's not happening.

I've been following tan's thread. Sometimes it all goes over my head.

That hour o' doom was a first for me. I'm not overly worried about it, but I did think wtf when I saw it. That was my first night with a new mask, the Pico, and I don't sleep well the first night with a new mask. Also a new chinstrap.

Lukie, I own the soft silicone eye covers. "Onyix." They are tight and I get marks. I don't like how they are not easily adjustable. It seems like either they fit your head or they don't. It would not have been difficult to design them so they could be adjusted, especially at the price. But even the night I wore them I still got eye inflammation, so I'm not going to worry about them at this point.

Archangle - my eye pressure is good. I will try a total face mask before I will try an oral mask. I am just not a mouth breather. I'm going to be five kinds of pissed if it comes to that.

Tonight I will try cpap at 8cm. It would be cool if it were as simple as that. And if I still feel pretty tired and foggy I can just give it some time. I really appreciate all offered ideas....it helps me think.

[robysue]

So far I've had one night where in the morning I felt better than usual, and that seems to have been random. Probably the smart thing to do would have been to make no changes for three months, but I get so envious when I read the overnight success stories, people bounding out of bed after their first night with cpap feeling reborn and energized while I'm still crawling through the day.

The people who bound out of bed after their first night with cpap feeling reborn and engergized are actually pretty rare.

And if you've already had one night where you felt better than usual in the morning, you're doing far, far better than I was at this point in my therapy. It took me a good six months or more before I had even a single day where I could say I felt as good as I felt pre-cpap.

But I would have to say, looking over my notes in Sleepyhead, that I have deteriorated since going to apap.

So it's probably worth saying the apap experiment hasn't worked out. If going back to 8cm for a week or so doesn't help the eye problem OR if you wind up feeling substantially worse , you can always do more experimenting with apap in the future.

At 8cm I don't think I was having the eye problems. But I still had a lot of brain fog, lack of energy, etc. It's weird because at my titration study I only slept 5 hours and I was physically tired but I had a mental clarity that was new. I've wanted to recapture that and so far it's not happening.

The lab is not the same as your own bedroom. For some people (like you), that's a shame since titration night was a success. For some people (like me), the titration night study is one of the worst nights of sleep in their life.

[AMK]

Oy, 8cm was not a success last night. I'm exhausted, my eyes are still swollen, and the view in Sleepyhead isn't exactly better. I also felt like I wasn't getting enough air at 8. I'm going to set it back to 7-10 and put all this in the hands of the nurse tomorrow. Hopefully she'll have time to respond and refer me to an ophthalmologist.

[tan]

You can see last night that 7-10 isn't dampening the flow limitations and in fact my AHI is worsening (and what is up with that hour o' doom around 2-3AM).

Well, if compared to CPAP==8, your FL chart with APAP 7-10 looks better. So do other events. However, the machine reports a very little RERA (whether it can be trusted I don't know -- I have to be careful with my statements in order not to suffer Morbius' wrath). Though both the modes keep your AHI within "normal". And it looks like in both cases the machine was limited by the upper pressure setting to help you any further. But again, whether you need that "help" is a different question. If I were you, I would try to see what will happen with a higher pressure limit, but I am known for conducting inhumane experiments upon myself.

[robysue]

If I were you, I would try to see what will happen with a higher pressure limit, but I am known for conducting inhumane experiments upon myself.

If AMK were not having serious problems with air leaking into the eyes through the tear ducts, this might be a useful suggestion. But since AMK is having problems with the eyes, it is NOT a good idea to just increase the pressure in an attempt to smooth out the flow limitations.

AMK needs to be working with an opthalmologist that understand how CPAP can affect the eyes as well as a sleep doc.

To AMK: Does the dry eye ointment suggested by the current opthalmologist do any good in addressing how swollen and puffy the eyes are in the morning?

In the end, you and the sleep doc may have to find a reasonable compromise in terms of pressure: Low enough to not bother the eyes (too much) and high enough to prevent most of the apneas/hypopneas from happening. You may just have to live with more flow limitation. Until you manage to get the air-in-eyes issue addressed, however, those swollen, puffy eyes are going to keep you feeling miserable enough to make it hard to assess how well the CPAP is working in terms of addressing the OSA symptoms.

[tan]

If I were you, I would try to see what will happen with a higher pressure limit, but I am known for conducting inhumane experiments upon myself.

If AMK were not having serious problems with air leaking into the eyes through the tear ducts...

well, this is a separate issue that must obviously be fixed.

[AMK]

Hey, thanks for the responses. I was sitting here contemplating the situation. I am actually upset about that screenshot I posted yesterday. When I started CPAP, a pressure of 8 didn't look that bad in sleepyhead aside from the usual busy flow limitation graph. In fact that, in terms of events including RERAs, Saturday night was probably my worst night since starting Cpap and I was so tired all day yesterday. It's got me wondering if I should have just stayed at 8 at the start instead of wanting to make things "better"...because now I can't go back to 8. Last night the machine was set back to 7-10 and tan is right, the pressure really wants to go higher than 10. I would love to try 9-11 or 12. But the eyes.

I've been doing some research and it seems like jumping straight into getting punctal plugs can lead to other unwanted effects such as a dry, runny nose from no longer having drainage from the eye. I already have some trouble because of the old-fashioned turbinectomy I had in '98. I have what's called "empty nose syndrome." I don't have it as bad as some people, but I have to take it into account.

I have not finished at-home experiments. Last night I did not put ointment in my eyes and I did not put any (hypoallergenic) skin cream around them, just plain washed skin and some artificial tears. When I woke up, my lids were half gummed shut which scared me, but the eyeballs themselves weren't quite as inflamed and they recovered more quickly. So: hmm. Maybe the petroleum/mineral oil ointment isn't actually good. I have mask liners coming in today's mail which I have never used before, so tonight I am going to use one with my mask. I feel like the Pico mask is not leaking, but it can have small leaks if moved too much while side sleeping and for all I know while I'm more deeply asleep I may be shoving the mask out of place and just enough air is coming out to hit the eyes (the leak graph supports this hypothesis). I also want to experiment with using the goggles and no eye ointment. I want to have gone down a list of all possible variables I can control before I have a doctor telling me I need some procedure.

Here's last night which looks so much better than the Saturday night one, but you can see the small leaks and how often the machine had to keep taking me back to 10. It seems like every time the pressure started to go down the flow limitations would kick right up and the pressure would have to jump back up. I'm interested to see how a mask liner affects the leak graph tonight.

[robysue]

Hey, thanks for the responses. I was sitting here contemplating the situation. I am actually upset about that screenshot I posted yesterday. When I started CPAP, a pressure of 8 didn't look that bad in sleepyhead aside from the usual busy flow limitation graph.

It's never a good idea to make a change based on ONE night's data. It's possible that 3/14 was just a BAD night. And strictly speaking, the AHI was acceptable on that night and as ragged as your flow limitation graph is, I've seen worse.

In fact that, in terms of events including RERAs, Saturday night was probably my worst night since starting Cpap and I was so tired all day yesterday. It's got me wondering if I should have just stayed at 8 at the start instead of wanting to make things "better"...because now I can't go back to 8. Last night the machine was set back to 7-10 and tan is right, the pressure really wants to go higher than 10.

As I said before: It could be that Saturday night was a random "bad night". Most of us have them occasionally. (I had one last night myself.) Most of the time there's no particular, identifiable reason for an occasional bad night. They just happen. And if you just leave the settings be, the next night things go back to "normal". I still think given the eye problems it would be useful for you to go back to straight CPAP at 8cm for 5-7 days regardless of what the data looks like the first day or two looks like. That's the only way to see if your sleep can stabilize to what it was looking like before you switched to APAP in an effort to reduce the flow limitations. That's also the only way to see if your eyes do better at a lower pressure than the APAP range you're currently using.

When you are using APAP, what's driving the pressure up is flow limitations and not apneas/hypopneas. In other words, strictly speaking, it's questionable whether adding the additional pressure to smooth out the flow limitation curve is giving you any real benefit----particularly since it comes at a pretty significant "cost" in terms of your eyes.

I would love to try 9-11 or 12. But the eyes.

Why do you want to try 9-11? What do you think you would gain from increasing the pressure range? We know what you lose: The eyes will be even more unhappy at 9-11 than they are now.

I have not finished at-home experiments. Last night I did not put ointment in my eyes and I did not put any (hypoallergenic) skin cream around them, just plain washed skin and some artificial tears. When I woke up, my lids were half gummed shut which scared me, but the eyeballs themselves weren't quite as inflamed and they recovered more quickly. So: hmm. Maybe the petroleum/mineral oil ointment isn't actually good.

The petroleum/mineral oil ointment isn't particularly good for your mask either. But having the eye lids half-gummed shut is not acceptable either.

My advice remains: Go back to straight CPAP at 8cm for a week or so and quit worrying about the dang flow limitations graph OR your AHI as long as it's below 5.0. Get the eyes back to feeling at least "ok" first. Then worry about what you can and cannot do in terms of CPAP settings and how they affect the eyes.

I have mask liners coming in today's mail which I have never used before, so tonight I am going to use one with my mask. I feel like the Pico mask is not leaking, but it can have small leaks if moved too much while side sleeping and for all I know while I'm more deeply asleep I may be shoving the mask out of place and just enough air is coming out to hit the eyes (the leak graph supports this hypothesis). I also want to experiment with using the goggles and no eye ointment. I want to have gone down a list of all possible variables I can control before I have a doctor telling me I need some procedure.

Do all this stuff at your original CPAP prescription of straight 8cm of CPAP pressure.

A long time ago in a galaxy far, far away, NotMuffy (now know as Morbius) wrote this on my one of my threads:

OK, I have a question (or two):

What exactly do you hope to accomplish?

• Live longer
• Sleep better
• Feel better

Do you think AHI 0.0 will accomplish that goal(s)?

I'll ask you the same questions relevant to your efforts to reduce your Flow Limitations.