Flummoxed and upset, appreciate help (with lots of data)

[ThisIsMyUserName]

All,

I've been posting a lot lately to figure out why I took a significant downturn, but now I know why, but it's really hard for me to understand. I find what's hapening very frustrating, and would appreciate insights. Basically, I started 4 months ago with CPAP after almost a decade of apnea. Over the next three months, I used a Pilairo and got steadily better. I worked through some issues (got a heated hose, for example), and after three months was feeling pretty darn amazing; not quite back to pre-CPAP, but great. I also noticed that I was having lots of dreams, and not getting up in the middle of the night much, whereas I had basically no dreams I remembered for years before. I also tracked my data very closely, which helped with some issues like taking off the mask at night unconciously. Anyway, the Pilairo was great from some perspectives (nearly no leaks, low AHI, reasonably comfortable, etc.) but was causing a lot of nasal pain (inside the nostrils, lasting all day long) and leaving red marks on my face (wherever the cushions made contact). So I got a fitting and switched to an Eson, which was also very comfortable and relatively leak-free and gave me a low AHI. I didn't notice anything different from a direct comfort or sleeping perspective; I wore the mask all night, everything seemed fine. But I started to feel much worse, and I started looking for various reasons why (you can check my other posts musing about whether I need a FFM and other ideas). I would say I was halfway between how I felt on the Pilairo and how I felt without any CPAP. Then, on Friday I realized that I couldn't remember having a dream recently, so I got the idea that maybe the new mask wasn't working. And, indeed, I put on my Pilairo again Friday night (I wore it a couple of nights over the last month, but not more than 2 or 3) and immediately had a couple of dreams, woke up feeling better than I had in weeks. Still not back to normal, but darn good.

Anyway, the near-term solution is obvious; I'll stick to the Pilairo and work with lanolin or face covers to try to make it work. But I'm really distraught by the implication that I could be wearing a mask all night, that I could have data that looks great, and still be not getting good sleep. I find this a very distressing concept, since it means there is something going on that I don't understand, that I could revert to pre-CPAP feeling for some reason, and that I can't change masks without some sgnificant risk of feeling crappy for a while. Somehow I had thought finding a mask was about fit, comfort, leaks, etc. What could possibly be going on?

Anyway, I was hoping folks could tell me what's happening, and I posted a whole bunch of data below to see if it helps. I would also be very interested if there is something you can see that I can look for after. I didn't post pressure, since it's pegged at constant 5 (a couple days at 6, a test my doctor suggested, but it didn't do much, so I went back.) I used the Eson from Nov 21-Dec 19.

Here's my summary:


Here's the first set of overview data (a week of data is missing early on because I lost my sd card):


More overview data:


More:


Here's a random day with the Pilairo:


More of the same day:


Even more:

A random Eson day:


More data, same day:


More:


Two random Pilairo breathing pattern closeup (happens to have a short apnea):



Random Eson breathing closeup:


I noticed that this looked a little like periodic breathing, but I found other cases with Pilairo that looked much the same:


Anyway, I don't see anything that clearly differentiates the Eson days from the Pilairo days, other than the fact that I am clearly having the apnea like sleep with one but not the other (that is, no dreams, feel crappy, but not actually having apneas, which I don't get.)

Help?

[SleepWellCPAP]

Flummoxed, I like that word as it so often describes how people feel about xPAPs.

The nice thing about CPAPtalk is that you have so many different experience levels and inputs to draw from, that practically any difficulty can be overcome.

The post you have made, in my estimation, clearly shows there are two sides to the data downloads and perceived benefit question. As you have indicated, your data doesn't really show anything significant between your Eson days and Pilario days. Your perception of benefit however, is much different.

Since a restful, recuperative night is based so heavily on brain waves, could just the pressure points of the masks or positioning of the headgear be causing arousals that are going unnoticed?

In your case, thought the Pilario seems to be an acceptable near-term solution, I would recommend trying a few more nasal cushion or pillow style masks. In my experience, I have had clients try many many masks before finding the one that works for them. Please don't get discouraged in the meantime. Also, keep in mind cleanliness of the mask cushion is almost as important as the mask itself. ResMed's Nano or Swift Fx or Respironics Wisp may be some good ones to consider.

Good luck. Hope that helps.

[robysue]

ThisIsMyUserName,

You say you like the Pilaro and that you feel pretty decent when you use the Pilaro, but the Pilaro is causing sore nostrils and redmarks where the cushion hits your face. But with the Eson you don't feel as well.

The Eson has some pretty extensive headgear, whereas the Pilaro's is very minimal. Perhaps sleepWellCPAP has hit the nail on the head when he writes:

Since a restful, recuperative night is based so heavily on brain waves, could just the pressure points of the masks or positioning of the headgear be causing arousals that are going unnoticed?

Perhaps you'd be better off trying out a nasal mask that has substantially less headgear than the Eson. The Swift FX Nano or the PR Wisp might be more comfortable for the neck and head and forehead, while still being a nasal mask so there's nothing poking up the inside of your nose.

Or you might want to try a different nasal pillows mask. Maybe there's something about the particular angle of the pillows on the Pilaro that's irritating the inside of the nose. And a different nasal pillows mask might not cause as much irritation to the inside of the nose.

[Jeannh]

But the underlying question remains: If good data doesn't necessarily result in good sleep quality, there is an unmeasured dimension to be considered. How do we know when the therapy has achieved the best possible individual results? Even tenacious patients may be giving up prematurely.

Other than data and mask comfort, what do others consider in measuring results? For example, dreaming, feeling on awakening; how I feel in the afternoon, # of awakenings during the night, etc?

Very intriguing - I'd like to know I maximize my therapy. Thanks for bringing up an important topic!

[SleepWellCPAP]

I do believe this thread has quite a bit of potential in revealing what factors people evaluate when considering the effectiveness of their sleep. It will be very interesting to see further postings.

Though the standard answer given by most clinicians has to do with return of symptoms, i.e. daytime somnolence, feeling drowsy etc, it would seem there must be a host of other variables people consider.

There was something I did notice about the first post and forgot to mention it. In the "session times" graph it appears you are a nap taker. Though "power" naps are considered healthy and normal, naps that last longer than 20 to 30 minutes have the potential to alter your body clock. Since timing is so important to restorative sleep, you may consider setting an alarm if your daytime snoozes are lengthy.

[mgaggie]

Medications can have a huge impact on how you feel. I have had a low AHI and low leaks yet I still feel tired in the morning

[kteague]

Just throwing this out there in general in case someone might benefit... If after an adjustment period one has their treatment at an effective level and mask issues have been resolved, yet seeming poor sleep quality or daytime symptoms remain even after ruling out medication side effects and known potential medical contributors, it wouldn't hurt to rule out limb movements. It is not uncommon for PLMD to manifest after getting consistent good CPAP treatment. Prior to that sleep may have been too fragmented for the movements to fully manifest. The irony is that the better you are doing on CPAP, the worse this disorder can get because it needs sleep to thrive. Let me be clear about this one thing - CPAP use does NOT cause PLMD. It merely allows one to sleep, giving the movements opportunity to manifest. While some people have no clue they are moving a lot in their sleep, an observer may mention it. For those whose movements are significant, some unrecognized symptoms can be achy sensations in the legs or feet when waking during the night, waking at the end of a cramp in the feet or legs, daytime discomfort in legs or feet, restless or fitful sleep, and waking with bedding in disarray. PLMD (and RLS) can be a side effect of some meds. It's also thought to have some correlation to low ferritin. Some claim it is helped by taking magnesium and/or Vitamin D and more. With the media and advertising prominence of RLS and the dopamine agonist meds for its treatment, it's always possible one taking those meds could experience augmentation, where the meds make the very thing it is treating worse. (Warning - never stop taking a dopamine med abruptly! Always wean off even if it is causing more problems.)

If anyone thinks they may have PLMD, please do your research before moving forward. There are some systematic steps one can take to avoid the pitfalls some like me have experienced. One reason I mentioned it in this thread is that a user can feel their CPAP and mask are responsible for repeated wakeups and feeling agitated with the mask, when the heightened sensitivity that can come with PLMD may be the culprit. It severely compromised my tolerance for even minor irritations. The better controlled my movements, the less I notice my mask and straps. I thought I was failing CPAP but I wasn't at all.

[ThisIsMyUserName]

Thanks everyone. All interesting, though I don't think it applies to me. It seems naps and medications are definitely things to consider (though in my case, I felt great after naps on pilairo, not on Eson, and I don't take any meds; I also work out five times a week and eat pretty healthy). I'm still flummoxed by my case, though, so more ideas would be appreciated. Otherwise, I guess I'll just make pilairo work as long as possible, and pay careful attention if I try a new mask.

[SleepWellCPAP]

Thanks to Dr Teague for posting that about PLMD. Very interesting indeed.

With such a low AHI, it's hard to justify anything in the way of pressure changes, it does however appear your doctor suggested going from 5 to 6. You tried that for a couple nights and didn't feel as though that was doing anything for you. A couple nights really isn't much time. As a suggestion, maybe try 6 for a week and reevaluate then. If okay with your doctor, maybe even go to 7 cmH2O. These pressures, in the grand scheme of things are considered very low and you may just need a little more air. Almost all of what little AHI you have, is hypopnea. In order to alleviate hypopnea, generally, more pressure is applied.

Hope that helps. Good luck.