Data Review Request - CAs replacing OAs despite low pressure

Hi everyone! Thanks in advance for any help. I'll try to give only a brief history, but feel free to ask for more details. Three diagnostic studies total, but no titration study (doctor opted for an APAP). Started this journey due to daytime sleepiness and risk of central apnea due to daily opiate pain medication use. First study was almost two years ago and was undiagnostic. Started on Ritalin for daytime symptoms. Recently I asked for a second study as my daytime symptoms had continued and my pain medication dosage had increased.

Second study showed mild OSA (AHI=6) and severe PLMD. Treated the PLMD (didn't notice any decrease in daytime symptoms). Started Ambien for sleep onset insomnia (had it since my teens), plus it anecdotally seems to help my sleep quality. Third study a few months later to check up on the apnea & PLMD yielded an AHI of 9 (NREM=7 and REM=18), PLMs reduced by 2/3, and arousals reduced by 1/2. APAP prescribed with initial range 4-14 & EPR=3. Note that my doctor only prescribed it to see if it helps my daytime symptoms (as we don't know if its due to meds, apnea, or something else), and said to give it 1-2 months.

I now have 9 nights of data. Main issue is awakening at night (previously no remembered awakenings) and having difficulty falling back asleep with the mask on. I feel I am waking up more due to pressure changes, despite the pressure staying low, not all just adjusting to the CPAP. Often I'm feeling the pressure increase while being wide awake, and that stops me from being able to easily go back to sleep. I turn the machine off & on and it starts increasing the pressure immediately, once three times in a row before I gave up and took the mask off. I guess it doesn't like my awake breathing, although I tried either faster or slower or shallower or deeper. I imagine that is one issue with having only mild apnea...less motivation to make it work. Plus I don't have compliance to worry about. Although all in all I think I'm doing pretty well as 4/9 nights I kept it on all night, and my hours of use have trended upward.

Followed up with my doctor two days ago with a week's worth of data (which I had already reviewed myself). After looking at my data and my request for a constant pressure, she changed it to 7-12 & added a 0-30 minute ramp & kept EPR at 3, saying that there would be much less pressure variation now. She said the amount of centrals wasn't good, especially considering my AHI was low to begin with, but since the centrals were still averaging under 5 (at that time), and we only had a week of data, she wanted to get a month of data and see from there if we needed to try BiLevel or ASV, but I could ask to come in sooner if needed. She didn't mention anything about the possibility of the majority of them being sleep onset/transition. I do tend to have a cluster right after I fall asleep (takes an avg of 5 minutes due to timing the Ambien well), but they definitely continue during times I am asleep. The two nights since the pressure change have been worse then ever, both as far as sleep quality and data (AHI=11.63, of which CA=10.49). Plus even a 30 minute ramp felt like the pressure was increasing too fast while I was falling asleep, and 7 feels too high. I think I'm in the minority here as I'm perfectly comfortable breathing at 4, and above 6 starts to feel like a hurricane, and I have difficulty exhaling.

avg AHI = 6.34 (of which CA=5.46 & OA=0.52 & H=0.35)
avg hours/night = 05:57
avg pressure = 5.8
95% pressure = 9.0
avg leaks = 1.60
95% leaks = 8.40

Typical night, old settings:



With new settings:



Since my doctor was not receptive to setting it at a constant pressure (at least yet), I feel that if I don't tweak things I will stop using the CPAP, and I know that if I stop using it I'm unlikely to try it again, I want to change my own pressure. I've already invested a lot of time & money into this and want to give it a real try. It would take a week or two to get in to see my doctor earlier, and she said she wouldn't change the settings without reviewing the data (but in a pinch I could have my DME download data, send it to her, her fax the change order to the DME, and me see them to change it, which I think would realistically take a week). I am thinking of starting at a pressure of 4 or 5, increasing it by 0.5 every few days, and see how the data does for OA vs. CA (and of course sleep comfort). Since my AHI is now worse than pre-CPAP, the proposed pressure is within my original settings, and I'd monitor the data, I can't seem to find any reasons not to.

Is it likely I'm having a significant amount of real centrals? Could these go down in time? Anyone have any suggestions? Anything pop out from my data? Any other graphs anyone wants to see? Thanks!

tortoisegirl wrote:I am thinking of starting at a pressure of 4 or 5, increasing it by 0.5 every few days, and see how the data does for OA vs. CA (and of course sleep comfort). Since my AHI is now worse than pre-CPAP, the proposed pressure is within my original settings, and I'd monitor the data, I can't seem to find any reasons not to.

Sounds like a good plan to me. Start low and work your way up.
Since the machine won't go any lower than 4 cm your EPR isn't going to do much so I would reduce it to 1 or turn it off if you are comfortable doing so.

Oh...what pain meds are you on? Anything that suppresses respiration? Opiates or similar?

Thanks Pugsy! I was already thinking to try the EPR off as I think I'd like that better anyways.

Yeah unfortunately I'm on Methadone (opiate), which is definitely known to cause centrals & decrease respiration (more than other opiates). And I might as well answer the likely follow up question: No its not an option to get off of pain meds at this time, or to switch to a different one (nothing else was helpful). Also on many other meds but that one is the only one that could affect breathing. I have lots of quality of life health problems like the chronic pain, especially for my age (late 20s), but nothing major. I didn't have any significant amount of centrals in any of my three diagnostic studies though. Mostly hypopneas and a few apneas.

My sleep doctor had told me before starting CPAP that we needed to watch out for centrals (why she wanted to review my data soon after starting), and warned me of the possibility of needing to try BiLevel or ASV in that event. Not sure if my risk of secondary (pressure induced) centrals is actually any higher than other folks or not though. I assume she could have said that just because we didn't have titration data for me. In case anyone is curious, my sleep doctor mentioned that once (if) I'm stable on CPAP then would be a good time to do a titration study, mostly to get data on the PLMD with the CPAP.

I've tried to find out online if my risk of pressure induced centrals was actually any higher, without luck. Maybe I should ask my sleep doctor that specific question though now that I think of it. More out of curiosity as it seems funny that we were concerned about centrals from the pain meds, but I end up having them from the CPAP instead, when its supposedly only a 10-15% chance thing (assuming they are when I am asleep and stick around). I was referred to her by my pain doctor who said he referred all his patients who were on Methadone or who had daytime symptoms to a sleep specialist, so I assume she sees a lot of pain folks. Best wishes.

I don't know if those centrals are related to the pressure or the meds or maybe the meds increase your chance of developing CompSA when maybe otherwise you wouldn't.
http://maskarrayed.wordpress.com/

Bears watching though for sure.. If those centrals are related to the pressure (and/or pressure and meds combo) apap mode with much of a range probably isn't the way to go if more pressure makes it worse.
Either cpap mode or apap mode with a tiny range to lessen the change that the pressure increases are part of the problem.

Sometime people who do develop CompSA can be successful with a cpap/apap/bilevel machine if a happy medium can be found in terms of pressure that will adequately prevent the airway collapse (obstructive) and not trigger the breathing instability of CompSA...so no need to go to that high dollar ASV type of machine for centrals....
This is all assuming that this is CompSA we are seeing here and it might not be that at all but we have to keep an eye it because of the meds and the central increase you see.

Meds that suppress respiration can increase the chance of the breathing instability that happens with CompSA and those centrals.

tortoisegirl wrote:
Is it likely I'm having a significant amount of real centrals?

Well since you have data lets look.

The top chart always shows the whole night. In any other chart you can “zoom in” by dragging across that time slot. All charts except the top one will change to look at that specific time slot. The top chart will show the time highlighted. To re-set to show the whole night simply drag across the top chart.

I think we need to see some flow data!!! I would like to see that section of original centrals at the beginning of the night. At least one central event with a few minutes before and after to get context. And then four minutes of a time when the flow waveform is narrow and one if you can find it where it is wider.

tortoisegirl wrote: Could these go down in time?

With the normal centrals (pressure induced hypocapnic central apneas) it is indeed expected that they will go away with time on the machine.

With the use of opiates I have no idea. You may be dealing with the other kind of central. The hypercapnic central apnea. It may be that opiates reduce your respiratory control loop gain so it may be too low rather than the too high we see in such things as CompSAS.

tortoisegirl wrote: Anyone have any suggestions?

The one most pressing in my head right now is spending time on the machine during the day. Time in bed checking mask fit, leaks, hose management and all as you move to all the usual sleeping positions.

And then time with mild distraction. Listening to music, reading a book, some light TV. The hope is that with the waking brain involved the breathing reflexes to use with the machine will develop faster so you can begin to enjoy it more.

tortoisegirl wrote: Anything pop out from my data?

Not so much.

Need more detail and the flow data, minute volume, and respiratory rate charts included.

tortoisegirl wrote: Any other graphs anyone wants to see? Thanks!

Mentioned above.

Thanks everyone! Last night using a pressure of 5 I kept the mask on for the entire night and had pre-CPAP sleep quality...no remembered awakenings. Based on this one night it looks like the pressure changes and/or higher pressure were bothering me, not the CPAP. Awesome. Data much improved too. My husband also slept better, as there wasn't the machine noise from it changing pressure. Current plan is to stay at 5 for a few days, then decide to go up or down a little.

I haven't had any issues with mask fit or hose management or such...I lie down and go right to sleep and don't move all night (I can only sleep on my back). The prior issue was only waking up in the middle of the night, which I'm hoping was only due to pressure changes and/or high pressure.

Last night's data:



# hypopnea events = 8 (14, 12, 10, 14, 11, 12, 25, and 10 seconds each)
# clear airway events = 8 (18, 12, 15, 19, 20, 11, 20, and 18 seconds each)
# obstructive apnea events = 2 (10 and 12 seconds each)

Requested additional charts from last night's data:



Requested additional charts from 1st set of data:



Requested additional charts from 2nd set of data:



Zoomed in centrals from last night's data:



Zoomed in centrals from 1st set of data:



Zoomed in centrals from 2nd set of data:



Zoomed in flow data without events (can't really find long periods of narrower or wider):

Just looking at the data some of those do appear to be potentially hypocapnic centrals. At the same time the minute volume line and respiration line becomes unstable in BOTH directions (high and low!).

Simply respiratory control is unstable.

Perhaps the doctor has to “prove” that this and that machine do not work for you to get to the machine that does. I wish they were much better at doing what they are supposed to be doing.

Likely you will end up with an ASV.

I believe that those who become assigned to the ASV class of machines are dealing with some of the nonanatomic causes of sleep apnea[2,3]. Low arousal threshold and high (but in your case apparently also low) respiratory control loop gain are likely to be part of the mix. I think that both arousal threshold and loop gain could be related to a too low or too high vitamin D3 level. Where I live we get no UVB from the Sun from about August to April. Vitamin D levels drop all that time.

Those who are working with the D3 hormone (A.K.A. Vitamin D3) (e.g. Dr. Stasha Gominak, Michael F. Holick, Ph.D., M.D., Vitamin D Council) seem to be finding that the very low side of the “normal” range of 30-100 ng/L produces a range of symptoms including OSA, pain, and infection. All believe that a level lower than 50 ng/mL is not good and Dr. Stasha Gominak recommends 60-80 ng/mL for good health.

It would probably be wise to check your vitamin D3 levels. See “The Vitamin D Council” for assay details.

I believe that anything you can do to reduce your life stress is likely to be helpful

I think that all with any kind of OSA would do well to use a personal trainer to help facilitate the pursuit of an active lifestyle for at least three years. As well I believe that a dietitian used for at least the same period can help one learn to eat well which should be a life long pursuit. If eating well and moving well become part of the lifestyle a more healthy body is a predictable result. Sleep apnea is likely to be helped by many aspects of this pursuit of metabolic health.

XPAP is far from your only hope. Begin to branch out in your pursuit of health.



[1] Morgenthaler TI, Kuzniar TJ, Wolfe LF, Willes L, McLain WC, Goldberg R. The complex sleep apnea resolution study: a prospective randomized controlled trial of continuous positive airway pressure versus adaptive servoventilation therapy. SLEEP 2014;37(5):927-934 Related article (commentary):833

[2] Danny J. Eckert, David P. White, Amy S. Jordan, Atul Malhotra, and Andrew Wellman "Defining Phenotypic Causes of Obstructive Sleep Apnea. Identification of Novel Therapeutic Targets", American Journal of Respiratory and Critical Care Medicine, Vol. 188, No. 8 (2013), pp. 996-1004. doi: 10.1164/rccm.201303-0448OC

[3] Sairam Parthasarathy M.D., Emergence of Obstructive Sleep Apnea Phenotyping. From Weak to Strong! American Journal of Respitory and Critical Care Medicine VOL 188 2013
-- critical closing pressure [Pcrit] - Arousal Threshold - ventilatory control Loop gain - and genioglossal Muscle responsiveness. Pcrit, Loop, Arousal, Muscle (PALM)--

Thanks for your detailed data review and response, Todzo. I appreciate your input. Do you think that if I find a pressure that minimizes obstructive & central events and the data looks like last night or better (AHI=1.79) that this machine would give sufficient therapy? Based on my experience with APAP I don't think I'd like BiLevel or ASV! What is your response that you think I'll end up on ASV based on? Is there more to it than AHI? I also thought I'd add that thankfully none of my diagnostic studies showed a drop in oxygen below 89%.

I was quite pleased in the immediate drastic change from switching to a low constant pressure (better sleep quality & data). Yes the doctor would have to prove that a fancier machine would be needed...she said centrals consistently averaging at least 5/hour. When I saw her my average with CPAP after one week was 4/hour. She said if it was 20/hour or something that immediate action would be needed, but since it wasn't too bad we should collect more data.

I really hope my doctor won't be pissed at me for changing the settings, but I think I have some good reasons, and the data appears to support my change. I'm thinking I'll tell her I had just wanted to try a constant pressure for one night to see how much of my comfort issue was pressure-related vs. just the CPAP thing, and that since the data was so much better I stuck with it and tweaked it. She didn't really say anything when I said I had been looking at the data already. Maybe she thought on-screen?

I actually did have my D levels checked recently and they were in the teens, so I started 5,000 IU a day upon my primary doctor's advice. I plan to finish that bottle, then get re-tested to see if I need to stay on that dose, less, or none. I also live in WA, plus I don't tolerate being out in the sun, so I wasn't surprised at all that mine was so low. I've definitely spent a lot of effort on my health since only so much is under our control, although I can't tolerate aerobic exercise with my chronic pain. Stress levels are very low, although I think the pain puts my body on edge. Its under better control than it has been since it started 8 years ago though. Thanks again! Best wishes.

tortoisegirl wrote:Thanks for your detailed data review and response, Todzo. I appreciate your input. Do you think that if I find a pressure that minimizes obstructive & central events and the data looks like last night or better (AHI=1.79) that this machine would give sufficient therapy?

Frankly I do not know.

tortoisegirl wrote: Based on my experience with APAP I don't think I'd like BiLevel or ASV!

APAP is almost an anti-design when it comes to dealing with centrals. BiLevel and ASV are known for dealing with them better.

tortoisegirl wrote: What is your response that you think I'll end up on ASV based on?

Research shows that it does to well in terms of not showing so many central events during use. As well if you are dealing with hypercapnic centrals I guess I kind of hope ASV can help you breath more with these but I do not know.

tortoisegirl wrote: Is there more to it than AHI?

There is very very much more than AHI. Arousal index, for example, is very much involved. Respiratory gain, in your case, is very very much involved.

tortoisegirl wrote: I also thought I'd add that thankfully none of my diagnostic studies showed a drop in oxygen below 89%.

I was quite pleased in the immediate drastic change from switching to a low constant pressure (better sleep quality & data). Yes the doctor would have to prove that a fancier machine would be needed...she said centrals consistently averaging at least 5/hour. When I saw her my average with CPAP after one week was 4/hour. She said if it was 20/hour or something that immediate action would be needed, but since it wasn't too bad we should collect more data.

I really hope my doctor won't be pissed at me for changing the settings, but I think I have some good reasons, and the data appears to support my change.

I would think that any doctor worth their salt would be looking at the data!!

tortoisegirl wrote: I'm thinking I'll tell her I had just wanted to try a constant pressure for one night to see how much of my comfort issue was pressure-related vs. just the CPAP thing, and that since the data was so much better I stuck with it and tweaked it. She didn't really say anything when I said I had been looking at the data already. Maybe she thought on-screen?

tortoisegirl wrote:I actually did have my D levels checked recently and they were in the teens

What!! Teens!!! Oh yes, this could be part of the problem!!!

tortoisegirl wrote:, so I started 5,000 IU a day upon my primary doctor's advice.

If I were you I would be talking with my doctor about obtaining one of those amazing 350,000 IU vitamin D3 booster shots.

tortoisegirl wrote: I plan to finish that bottle, then get re-tested

That little vitamin D3 (I hope it is really D3) over so short a time will be unlikely to move things much. We need to move from “teens” to at least 60!

tortoisegirl wrote: to see if I need to stay on that dose, less, or none. I also live in WA, plus I don't tolerate being out in the sun, so I wasn't surprised at all that mine was so low.

I grew up at a mile high and learned during the summer swimming months that my skin tans very well. I have also come to understand that the skin is a bit like the gut, it needs a healthy microbial population to do well.

So I do not use anti-microbial (anti-bacterial) soap or other products. I am amazed how well simple plain non-growth hormone yogurt works to heal bug bites or scrapes very very fast!

Work related sun exposure does not appear to result in the cancers our medical experts show concern about. I think that if you control your exposure starting very conservative as I did this year (UV index 5 – ten minutes every other day (less for skin that does not tan well) and make sure that you are not pinking noticeably as you go the sun might well become a good source of D and the other things like D that the sun can provide.

But diet likely also plays a part in this (how the skin can repair itself from the damage of the sun light) as well as other factors in the immune system. So if you decide to go with trying some more sun do be careful. And always know the UV index.

tortoisegirl wrote: I've definitely spent a lot of effort on my health since only so much is under our control, although I can't tolerate aerobic exercise with my chronic pain. Stress levels are very low, although I think the pain puts my body on edge. Its under better control than it has been since it started 8 years ago though. Thanks again! Best wishes.

When I first started using pedometers it was 2000 steps a day, a far cry from the 10,000 to meet the active lifestyle definition. And it was on pretty much even ground. Now I average somewhere near 80% of the active lifestyle definition with some days about 30,000 steps (about 12 miles for me) and the crazy hills in my new little town do not bother me so much at all anymore (2 years here).

It is not that I will do a lot this month. It is that it will be a bit more than last year at this time this month. Just a bit more.

Tonight I will start some classic North Indian Moong Dal and even add some of the classic ghee, cumin seed, hing based drizzle. One more dish with some healthy stuff to eat. One more dish.

Simply I try to learn to take a bit better care of myself each day.

Best wishes to you as well!

Todzo

tortoisegirl wrote:I actually did have my D levels checked recently and they were in the teens

Todzo - What!! Teens!!! Oh yes, this could be part of the problem!!!

tortoisegirl wrote:, so I started 5,000 IU a day upon my primary doctor's advice.

Todzo -If I were you I would be talking with my doctor about obtaining one of those amazing 350,000 IU vitamin D3 booster shots.

tortoisegirl wrote: I plan to finish that bottle, then get re-tested

Todzo -That little vitamin D3 (I hope it is really D3) over so short a time will be unlikely to move things much. We need to move from “teens” to at least 60!

tortoisegirl wrote: to see if I need to stay on that dose, less, or none. I also live in WA, plus I don't tolerate being out in the sun, so I wasn't surprised at all that mine was so low.

Todzo,

That is extremely irresponsible advice and you need to stop doing that. The major rule with any supplement is to start low and go slow. It sounds like tortoisgirl's doctor is being very responsible by starting with a daily 5000 dose. Getting the vitamin D level up to the right level doesn't happen overnight and is a gradual process.

Sorry for the off topic response tortoisegirl but I couldn't let this go by.

49er

49er wrote: Todzo,

That is extremely irresponsible advice and you need to stop doing that. The major rule with any supplement is to start low and go slow. It sounds like tortoisgirl's doctor is being very responsible by starting with a daily 5000 dose. Getting the vitamin D level up to the right level doesn't happen overnight and is a gradual process.

Sorry for the off topic response tortoisegirl but I couldn't let this go by.

49er

the doctor would make the decision on the megadose

In her case the levels are proven seriously low, we know they have a long way to move!!!

your right about one thing - vitamin D levels move very slowly

In the mean time those centrals are killing her.

What would be irresponsible is to continue to let her die like that!

Todzo wrote:

49er wrote: Todzo,

That is extremely irresponsible advice and you need to stop doing that. The major rule with any supplement is to start low and go slow. It sounds like tortoisgirl's doctor is being very responsible by starting with a daily 5000 dose. Getting the vitamin D level up to the right level doesn't happen overnight and is a gradual process.

Sorry for the off topic response tortoisegirl but I couldn't let this go by.

49er

the doctor would make the decision on the megadose

In her case the levels are proven seriously low, we know they have a long way to move!!!

your right about one thing - vitamin D levels move very slowly

In the mean time those centrals are killing her.

What would be irresponsible is to continue to let her die like that!

Man, you're such an asshole.

amazing

+100!

Don't tell people they're going to die (from central apnea) because their Vit. D is low!! That's the nastiest and most pointless thing you have done so far... Take your broom and fly out of here with your nonsense!

Todzo wrote:

49er wrote: Todzo,

That is extremely irresponsible advice and you need to stop doing that. The major rule with any supplement is to start low and go slow. It sounds like tortoisgirl's doctor is being very responsible by starting with a daily 5000 dose. Getting the vitamin D level up to the right level doesn't happen overnight and is a gradual process.

Sorry for the off topic response tortoisegirl but I couldn't let this go by.

49er

the doctor would make the decision on the megadose

In her case the levels are proven seriously low, we know they have a long way to move!!!

your right about one thing - vitamin D levels move very slowly

In the mean time those centrals are killing her.

What would be irresponsible is to continue to let her die like that!

Todzo,

With all due respect, there are no double binded studies that have proven that a low vitamin D level causes central sleep apnea. Dr. Gorminik whom you keep referencing regarding vitamin D levels and sleep apnea has consistently said that there are no long term studies that prove that it cures obstructive sleep apnea. And she has said nothing about vitamin D and central sleep apnea.

Of course, the centrals need to be addressed. No one disagrees with that. But to infer that if she doesn't take a megadose of vitamin D to address this which will lead to her death is outrageous. I agree with Julie that this one of the worst comments you have made.

Also, if the trend from last night continues, the issues of addressing the centrals may no longer be relevant. Thankfully, Pusgy, who tortoisegirl should listen to, is monitoring this thread and will provide her usual excellent guidance as far as solving this problem. The great thing about Pugsy is she knows when to offer advice vs. referring someone to a doctor.

49er