AHI - Good, Awakenings - Bad, Sleep Doc #5 Tomorrow

[JQLewis]

I've made a number of adjustments to my PAP therapy, and the results look good. Leaks seem reasonably well managed, and my AHI is consistently below 1. I still wake up constantly, though, and can't manage more than 6 hours of broken sleep. I'm still waking up tired and frequently zoning out during the day. Last might was typical. Four awakenings, with one bathroom trip.



A few questions:

1- Can I be reasonably sure I've got mouth breathing under control? Would mouth breathing show up as large leaks? I've trained myself to keep my tongue on top of my mouth, so even if my lips part there shouldn't be any major leak of therapy air.

2- I switched to APAP mode a while back, as I'd noted that large leaks and higher AHI only occurred with higher pressure settings, and I wanted to see what the machine could tell me about my best top pressure need. My initial pressure of 13 now seems like it was much too high. Is a range of 9-11.4 reasonable?

3- What's the best approach to figuring out my frequent awakenings? I've got a few "suspects".

A- BP meds: Atenolol and Nifedipine are both associated with awakenings, and both also contribute to daytime sleepiness.

B- PLMD: Listed as severe on my sleep study, although the arousal index was WNL. Could they symptoms have been masked by my apneas? Once the apneas were well managed, might the PLMD become more of a problem?

C- Damage caused by twenty plus years of untreated OSA.

4- I want to get a new prescription for a mask. I'm due for a new one on my replacement schedule. I bought my current mask out of pocket. What's the best way to get a choice of masks? I want to try something different. I'm not sure about nasal pillows. Should I get a specific make and model on the script? I don't want to be locked into a single choice. My preference would be to have a script on file without an expiration date, so I don't have to keep bothering with doctors, but to have the option to try something different each time.

[Pugsy]

Yes...if you are losing a lot of air via mouth breathing it would show up on the leak graph.
While your leak line isn't real pretty...it is below 24 L/min so the machine can compensate.
Now that's not saying that whatever those leaks might be (either just ordinary mask movement leaks or mouth breathing) couldn't be a factor in your wake ups...they might be. Like maybe just annoying to cause some sort of arousal.
I routinely sleep through a lot worse but some people are simply more sensitive to the least little thing.
Even the slight changes are are seeing in the narrow apap range might be a factor...and yes...that 13 cm initial RX for pressure was obviously overkill. Maybe it was a worst case scenario pressure from maybe a brief period of time where they spotted a need for that pressure.

When getting a new RX for a mask...get one that says "Mask of patient's choice" so that you aren't tied to a specific type or brand. That way you can choose what you want.

[tan]

The pressure max is 11.4 and you hit that pressure at some point because of, I guess, the flow limitations. Why is the initial 13cm overkill? I think the higher pressure limit may be too low. But I would address your leaks first.

[JQLewis]

Yes...if you are losing a lot of air via mouth breathing it would show up on the leak graph.
While your leak line isn't real pretty...it is below 24 L/min so the machine can compensate.
Now that's not saying that whatever those leaks might be (either just ordinary mask movement leaks or mouth breathing) couldn't be a factor in your wake ups...they might be. Like maybe just annoying to cause some sort of arousal.
I routinely sleep through a lot worse but some people are simply more sensitive to the least little thing.
Even the slight changes are are seeing in the narrow apap range might be a factor...and yes...that 13 cm initial RX for pressure was obviously overkill. Maybe it was a worst case scenario pressure from maybe a brief period of time where they spotted a need for that pressure.

When getting a new RX for a mask...get one that says "Mask of patient's choice" so that you aren't tied to a specific type or brand. That way you can choose what you want.

Thanks. Hopefully I can get a "generic" prescription, so I can see what benefit there is from different designs. Time to try something other than Resmed. I'm curious whether a gel seal would be more effective for me, and I guess I should give pillows a go at some point.

As far as my awakenings go I don't want to make any assumptions, but I would put leaks towards the bottom of the list since I see no data correlation between leaks and my awakenings. When I wake up leaks are usually at their lowest, not their highest. There's also a very regular pattern to my awakenings. The first awakening is between 2-4 hours after I fall asleep, but I'd say it's two hours about 90+% of the time. After that, it's about every hour.

Why is the initial 13cm overkill?

Because at 13 I had terrible aerophagia, and my leaks and AHI were both much worse. The question for me is why the figure arrived at during an initial sleep study should be regarded as having been written in stone from up high? It should be seen as a starting point imo, not a perfect prescription, never to be questioned or altered. If you have high blood pressure the doctor will monitor your pressure and adjust your meds until the desired effect is achieved. Why should sleep medicine be any different?

[tan]

Why is the initial 13cm overkill?

Because at 13 I had terrible aerophagia, and my leaks and AHI were both much worse. The question for me is why the figure arrived at during an initial sleep study should be regarded as having been written in stone from up high? It should be seen as a starting point imo, not a perfect prescription, never to be questioned or altered. If you have high blood pressure the doctor will monitor your pressure and adjust your meds until the desired effect is achieved. Why should sleep medicine be any different?

I am not here to argue with you, just didn't know that you had aerophagia. It is just when I limited my upper limit below a certain value, I felt even crappier. Hence was my question.

[JQLewis]

Why is the initial 13cm overkill?

Because at 13 I had terrible aerophagia, and my leaks and AHI were both much worse. The question for me is why the figure arrived at during an initial sleep study should be regarded as having been written in stone from up high? It should be seen as a starting point imo, not a perfect prescription, never to be questioned or altered. If you have high blood pressure the doctor will monitor your pressure and adjust your meds until the desired effect is achieved. Why should sleep medicine be any different?

I am not here to argue with you, just didn't know that you had aerophagia. It is just when I limited my upper limit below a certain value, I felt even crappier. Hence was my question.

I didn't find your question argumentative, and I hope you didn't take my reply that way. Unfortunately, too many people are treated by their doctors as annoying and foolish for questioning their initial prescribed pressure settings. Doctors should work with their patients to optimize their therapy, not fight them.

[Pugsy]

If you are wanting to try a gel nasal mask...I might have one you can just have.
Which one interests you? I can check to see if I have one and maybe in your size.

[palerider]

Doctors should work with their patients to optimize their therapy, not fight them.

shut up and pay me, you source of revenue, my golf club membership is due.

[JQLewis]

If you are wanting to try a gel nasal mask...I might have one you can just have.
Which one interests you? I can check to see if I have one and maybe in your size.

Thanks. As far as a specific brand/model goes, I really hadn't gotten that far in my thinking. I figured I'd talk about it with the doctor tomorrow and see whether he has anything worthwhile to say. I should be able to get a new mask with no out-of-pocket cost, and I have no objection to having my insurance company pay for it. Those idiots have cost me a lot so far, with their incompetence.

[Day_Dreamer]

Who did you see?

Did they look at any data other than usage ?

Are you already looking for #6

I sent you a PM as I am from NYC as well and can't seem to find a good sleep doctor

[tan]

Just throwing some ideas:
- Vitamin D level?
- have you consulted with ENT whether you might have potential issue there?
- Flow limitation values are not completely horrible, but just one thing to check: can you play with custom user flagging as on the picture?

[JQLewis]

A follow-up:

Yes, sleep doc #6 is on the way (I guess so, anyway. As with all such encounters, I find a certain period of decompression is necessary between attempts). The details:

1- This doc (#5) was a pulmonologist, and after examining me he said there appeared to be nothing wrong with my lungs and therefore he didn't think he was going to be able to do anything for me. He proclaimed himself "not a sleep specialist" despite being listed and practicing at NYU's sleep center. He did give me a blood test for iron levels, since I mentioned PLMDs as a possible cause of my awakenings, and he was of the opinion that iron levels could contribute to that condition. My test results showed my iron levels are completely normal. He referred me do a different sleep lab which he said might be better for me. He claimed that others he'd referred there had been helped. I did at least get a generic "patient's choice" script for a mask, so I can get that taken care of. At least I've eliminated iron deficiency as a possible culprit.

2- My vitamin D levels are fine. I did have a deficiency several months ago, due I believe to eliminating milk from my diet. I've resumed drinking milk and my vitamin D levels are back to normal. My flow limit is a little higher than usual on this report, due to some slight congestion. Usually it's pretty flat and I can't see it being a major factor, though I'm not going to assume anything. An ENT is definitely a possibility. I have never had any doctor offer the slightest explanation for why I have such severe OSA in the first place. I do want to know why.

3- I've seen too many pulmonologists. I consider my OSA to be well managed now, and I don't think that specialty has anything more to offer me. If PLMDs are the problem, that falls within the province of a neurologist.

4- The principal difference between my situation now and prior to starting PAP therapy, from a subjective POV, is that I dream a lot more and I feel a greater degree of "mental fog" than I did before. If my OSA prevented me from getting too deep into REM sleep, that might account for my never getting terribly "sleep drunk" before treatment. Now that I'm sleeping more deeply that may be responsible for the fog. At the same time, perhaps the dreams I'm experiencing now are to blame for my awakenings? Anyway, it's a theory. A theory that's more in the territory of a neurologist or psychologist than a pulmonologist.