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18 mths of apap: need help optimizing settings to feel better [ASV]
#1
18 mths of apap: need help optimizing settings to feel better [ASV]
please advise

posting for pressure setting advice.  not sure where to begin because I've tried so many settings and the last several nights have been pretty good, numbers-wise.  to start things off I"ve attached 2 sleepyhead pages of my settings history.  on paper, at some settings, it looks like I should be reasonably well treated, apap having reduced my 72.7 sleep study ahi to under 20, mostly hovering around 4 - 8 ahi range. unfortunately, I haven't felt much much better after almost 18 months of this.  Well, I do sense some very incremental improvements (e.g., recently I found I was able to stop taking stimulants ((most days)) and I'm napping less) but I'm still not rested well enough to function normally, still dazed (more than sleepy maybe) and lethargic, still have high blood pressure, still have nasty reflux, still overweight, still very fuzzy headed, still moody, etc., etc.

ahi

one problem has been ahi eventually creeping up at every reasonably good setting tried so far.  note that some of the entries on the statistics pages that look like pretty good ahi's are (obviously) averages hiding the latest days in that time period trending upwards with higher than desirable dailies, and that prompted me to try a different setting.

fragmented sleep

the result of roughly 8 - 20 "mask off's" most nights, fragmented sleep may be the more significant problem now.  sleeping more than 60 minutes at a time is the exception rather than the rule.  roughly half of my awakenings are clearly related to one or a combination of apnea / hypopnea events, leakage and high pressure, implying that roughly half of my awakenings can be avoided with more effective therapy.  staying asleep longer is a priority: I feel noticeably better anytime I can get at least one uninterrupted 3+ hour sleep.

my background

I'm a 62 y/o male, lifelong-suffering apneac.  stuggled all my life to get out of bed in the morning. in my youth people told me they'd never heard anyone make so many strange noises in their sleep.  I think I've had 7 sleep studies since 1987, but little treatment (none effective) until apap, beginning at the end of 2016.  mild to moderate and entirely central in the early studies. 30 years and 40 pounds later it's severe, with the latest sleep study producing 51% obstructive to 49% clear airway apneas.

I also experience symptoms of mild restless legs and periodic leg movement syndromes. in addition, I’ve been hampered by attention deficit disorder all my life.  it's a no-brainer that ADD is worsened if not caused by sleep deprivation.

latest at-home sleep study:  72.7 ahi, 192 ca's, 204 oa's, 15 obstructive hypopneas (I didn't know hypopneas could be central), 75% low SaO2, 24 PLM's/hr.

first and only tritration was said to resolve snoring and apneas at 10cm.  initial prescribed setting: min 10 max 12.  machine came set to epr3 but DME provider failed to set the time and date and some other things so I don't know any of the settings were as directed. I will have to request a copy of my prescription as it must have been faxed directly from doctor to the DME provider. I have only recently experimented a few times with epr settings other than 3 and I can tell you I am pretty thoroughly confused about the topic having read what sounds to me like contradictory statements about the effects of higher or lower epr settings.

I've been struggling all along to get some restful sleep and achieve some decent numbers. I find a good setting only to have the wheels come off after a while.  this last week has been pretty good with lower ahi and a couple of unusually long sleep sessions. even so, I'm only feeling a hint of what being rested must feel like. plus, I'm starting to see rising ahi's and fewer hour+ sleeps.

I've also attached last night's daily screen and overview page.  the latter is so dense it's too hard to read, but a glance at the Session Times graph should give you a sense of how fragmented my sleep is. you might also get a sense of my varied ahi history, and by color codes, where the concentrations of centrals are.

in summary, it sounds like a standard list of issues: need to optimize pressure settings & reduce leaks with special attention to reducing awakenings from apnea, leaks and high or changing pressure.

please comment and advise.  feel free to tell me what other info I can provide.

thanks.
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#2
RE: 18 mths of apap: need help optimizing settings to feel better
The fragmented therapy on the overview graph looks like a scatter-gram.  i don't think I have ever seen so many short sessions patched together and called a night of sleep.  What causes you to break therapy? I think the detailed chart is typical for you with 12 sessions in not quite 7-hours of use.  I think if you can find any period where you think you are sleeping, it would be interesting to zoom into a 2-minute closeup of your respiratory flow rate chart.  It appears you don't have your prescription, and you have not talked to your doctor.  This needs professional follow-up.  Your sleep is so disrupted that the question you are asking does not relate to therapy settings, you must first get to the core of the problem that keeps you from putting together several hours of restful sleep. 

Your problem is not settings. You may need to be medicated, evaluated for other issues that prevent you from sleeping, and considered for bilevel therapy. It looks painful, and I feel great empathy for what is surely a very frustrating problem.  Tell your doctor the current approach is not working.  If he is a sleep specialist, work with your primary physician to look for a solution that looks at your whole health picture and not just sleep apnea. Probably the first person to talk to is the prescribing physician. You need to determine if he is able to look at the whole picture and help you.


[Image: attachment.php?aid=5768]
Sleeprider
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#3
RE: 18 mths of apap: need help optimizing settings to feel better
be assured the following is not directed at you, the messenger, but:

ouch! that's not the response I was hoping for.

since roughly half of my awakenings are clearly associated in time with apnea, high pressure or leaks, I figured they, at least, might be reduced. I have no clue what causes the other half of my awakenings other than the fact that I've had untreated apnea forever and I've had a history of frequent awakenings, increasing especially these last 10 years to the point of rendering me useless, so maybe it's like "muscle memory". I don't know. I complained about it to the sleep doc at every one of our half-dozen 12-minute $350 U.S. appointments. when pressed, he offered a gabapentin rx for restless legs, but that made it worse. when pressed more, he referred me to cognitive behavioral therapy as the only other alternative. but while my sleep hygiene isn't perfect, it isn't terrible, and racing thoughts / worry just never has been a problem for me. besides, while I get how all that worry stuff might keep a body from falling asleep, I have a hard time believing the same behaviour would cause a cycle of opposite consequences; i.e., wake me up, then let me go back to sleep, opposites, repeatedly. and really if you must know <grin> , my therapist said cognitive behavioral therapy is a bad fit for me. in any event, I guess it's time to start beating the bushes at some different doctors' offices looking for causes of awakening other than apnea. be my own advocate as you all say. but I'm not holding my breath (sorry, with apnea I am, actually); my long experience has been that no one knows how to fix what ails me.

I'll find some 2 minute images of sleeps with non-apnea awakenings for you to look at.

in the meantime, if you would look past the frequency of awakenings to see if anything can be improved under current conditions, I'd be grateful. I'll find some images of apnea awakenings to post as well. of course I understand if you are sure there's nothing to be done until awakenings resolve.

thanks for the help and advice.
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#4
RE: 18 mths of apap: need help optimizing settings to feel better
here's last night's daily view.  a new look with skyrocketing mostly-clustered centrals.  fyi, I must have slept without mask through some of the gap between 1 & 5 am; I remember getting out of bed at 4:30 and machine still showed 0 ahi at beginning of 5ish am sleep.  not feeling particularly good today, even with the additional (untreated) sleep time.
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#5
RE: 18 mths of apap: need help optimizing settings to feel better
This last result shows a lot of centrals in the morning, but again 6 sessions in as many hours. If the clock is correct, you went to bed about 10:15 and broke therapy within a few minutes, and resumed five minutes later. Then we have just over 1 hour with no events before the next break just before midnight. After a 15 minute break you put in another 30-40 minutes with no events, then take a 3-1/2 hour break. You use it again for 1/2 hour and quit. After about 10 minutes you put in a 2-hour session with a lot of events, take a 10 minute break and finish with a 15 minute session. Why are you tired? Wrong question, why isn't the therapy working? What do you need to fall asleep and stay asleep.

The events in the 2-hour morning session from 5:30 to just after 7:30 look like your only opportunity for sleep, and it's pretty messed up from CA and OA events. You're using fixed pressure of 11.0 with EPR 3. The only thing I've got to suggest is a sleep aid with pressure at 9 and EPR 1. There is not a trend in the charts that give us a clear direction. Your sleep is highly disrupted and that may account for the centrals, or they may be real. I don't know. What is clear is that you need to sleep and put together a solid period of rest. Without that the AHI is not a meaningful metric.
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

____________________________________________
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#6
RE: 18 mths of apap: need help optimizing settings to feel better
That many central events does raise my eyebrow, and then you had very few (comparative speaking) obstructive events.  You may benefit from a small soft cervical collar to help with obstructive events, then if that works, you might be able to lower pressures that may help reduce the number of central events.
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#7
RE: 18 mths of apap: need help optimizing settings to feel better
Hojo, I would agree, and might even start looking at alternatives like ASV, but what we have is a 20 minute cluster of centrals. I really wish Sheepless could get some solid therapy time, and it might take medication to get it. I sense a combination of complex apnea, and stress / anxiety is at work.
Sleeprider
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www.ApneaBoard.com

____________________________________________
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#8
RE: 18 mths of apap: need help optimizing settings to feel better
having a history of predominantly central apnea, I assumed I'd be a candidate for asv, but sleep doc wasn't interested in my history and so far has been happy with the resmed airsense 10 autoset's admittedly considerable reduction of both obstructive and central events, bouncing around 5 ahi. I figure I have to convince him with your help using evidence sleepyhead.

in 18 months I've had some okay results at a variety of settings but they always trend worse after a time. and something must have changed very recently. I don't think I'm tolerating higher pressures (e.g., 13, 16) like before and it's too soon to call it a trend but my centrals are rising at lower pressure, like current setting of 11 / 11. I thought I'd done pretty well with epr 3 most of the time I've had this machine but I reduced it to 2 for tonight and will likely try 1 & 0 on subsequent nights. then I'll try 10 / 10 again since that was my titration level. more than willing to try 9 too but should probably try to get there in increments.

my pattern has been pretty consistent, even before apap. I know this because I used a sleep app for android for a couple years before finally returning to a sleep center and apap. I usually begin with number of short sleeps well under an hour each until about 3 - 5 AM or so when I tend to sleep a little longer. while monitoring with the phone app I almost never slept more than 50 minutes. apap has enabled more hour+ sleeps, even the occasional 5 hour sleep and a couple 7 hour sleeps. I assume increased duration means greater potential for deeper sleep. and while I don't know this for sure, especially with respect to centrals, I'm pretty sure deeper sleep tends to produce more apnea. and that's how many of my flow rate graphs look, with a higher rate of apnea occuring per hour during the longer sleeps. contradicting that, my very best sleep from a purely subjective point of view tends to occur between about 7 & 10 AM and I think this time tends to be less burdened by apnea. I don't know.

believe me, I wish I knew why I wake so often (lifelong torture). judging by the graphs, about half are caused by apnea, high pressure, pressure variations and leaks. I'd think those might well respond to the artful application of standard protocols and that'd be half the battle. I assume the other half occur because apnea has been awakening me since I was a child & it's what my body is used to. I will admit that I've taken to snacking at night: when I awaken to find myself sitting on the edge of the bed, heart racing, drenched in sweat and gasping for breath, or just awake enough for whatever reason to turn off the machine and remove the mask, I find I'm too tense to lie back down right away. sometimes I read or do a puzzle until physically relaxed enough to return to sleep. often, I'm too sleepy to focus my eyes but too physically tense to sleep. then, I need to get up and walk it off and frequently end up in front of the refrigerator. I thought people eat comfort food to ease emotional pain but I guess I'm snacking to relieve physical discomfort. the awakenings long predated this nighttime eating so I don't think eating is a direct cause, but it's clear in the literature that eating at night can make it difficult to sleep. (otoh, it feels to me like it makes it easier to sleep.) maybe my head's buried in the sand but I'm really not conscious of much emotional anxiety or stress. there's good reason for it but I'm pretty easy going and I've always been able to compartmentalize. I've learned not to allow myself to feel it. in the past, anxiety and stress have manifest themselves in neck and back pain but nothing like that happening now.

I haven't picked up a cervical collar yet but started using a buckwheat pillow at the same time I made my most recent settings change to min 11 max 11. without evidence, I give the pillow credit for some relatively good results at that setting. will have to go without for a few nights to try to confirm that but with ahi trending up again, I'm not sure it'll be a good test. not everything went according to Hoyle last night; e.g., it doesn't happen very often that I sleep without the mask but I must have done so for much of the big gap between 1 & 5; it's possible I lost track of the buckwheat pillow during the hours with 88 mostly central / hr. not sure if the collar / pillow has any effect on central apnea though.

so, can you help with the clearly sleep-ending events? what else can I show you? how about some of the few and far between longer sleeps. examples of what happens at say min 11 max 20 (or some other range)? also, you mentioned looking more closely at shorter sleeps whose end isn't associated with an event.

I understand if you folks say you can't help me but I'm really really really hoping and being so desperate I'm willing to do almost anything. even working myself up to get set up with a new personal doc, sleep doc, pharmacy etc etc. due to change in insurance. which all requires energy I don't have much of.
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#9
RE: 18 mths of apap: need help optimizing settings to feel better
It looks to me that whenever you start to sleep, your leak rate shoots up. I see that you are using pillows. Usually pillows don't leak if the size is correct. Are you mouth leaking and is it disrupting your sleep? Tape your lips to remove that variable.
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#10
RE: 18 mths of apap: need help optimizing settings to feel better
It's a difficult conundrum, that your CPAP leaves you untreated for arousals that may be central in origin, but leaves you appearing to be treated for apnea. Your doctor is not working on your behalf and apparently opposes any further investigation or trial on an alternative therapy. I hate to encourage shopping for results, but it might be time to transfer your care elsewhere or to find a way to obtain ASV through the resale and back-door markets. They do come up fairly often, and I even saw a S9 VPAP Adapt transact openly on another forum for $780 USD.

There is a good chance that you will respond to ASV in the same positive way the Hojo and Spy Car have done. Both of their doctors resisted looking at the treatment, but saw dramatic improvements as a result. I just don't think many physicians are familiar with the scope of what ASV can treat, and consider it a ventilator for people with heart failure, or too dangerous. Of the sleep specialists out there, I think a large proportion don't even consider central apnea to be a real possibility. They find most of their patients that they treat with CPAP either end up treated or quit. They don't care why they quit and blame the patients for the failures, and pat themselves on the back for a job well done, concluding anyone can be treated with CPAP if they just follow directions. Anyway, if that is your doctor, it's really up to you to move on, whatever that entails. In all fairness to the doctors, they usually have an unreasonable patient load and demands on their time they already can't meet. A patient with "special needs" gets in the way of the production they are expected to have for treating the majority of their patients. Finding a doctor that does not let that get in the way of good personalized care, is the challenge.
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

____________________________________________
Download OSCAR Software
Soft Cervical Collar
Optimizing Therapy
Organize your OSCAR Charts
Attaching Files

How To Deal With Equipment Supplier


INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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