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200+ days in, no real improvement, docs have no clues.
#1
200+ days in, no real improvement, docs have no clues.
Hello all,

I'm now more than two years into this particular journey, and 200+ days into this particular configuration, and I'm turning up shrugs from the sleep doc and his RT with "All your numbers look great". 

Here's what I've got going on: persistent daytime fatigue, despite a treated AHI (Untreated AHI was 35) that averages around 3.3, with significant memory and planning deficits... that are becoming noticeable at work, in the form of screwed up travel bookings, forgotten conversations, and the like. I work remote from home, when I'm not on the road, and travel fairly frequently. Mostly I speak at conferences and user groups, which is largely unimpacted,  as long as I manage to not show up on the wrong day or anything (which has happened). 

Modafinil has proven to be ineffective at keeping me reliably awake during the day, but armodafinil mostly works. This is extra delightful because work's new insurer for new year insists that they will only cover modafinil since it's "the same thing".

I'm pretty much at wit's end, and losing hope that there's a solution to be found here, but here's the data from sleepyhead...



Any ideas? Any insight is appreciated.


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#2
RE: 200+ days in, no real improvement, docs have no clues.
If it were me I'd put it in VAUTO mode min pressure 7 cm max 20cm and let the machine clean up the OA and H events. I'd also drop to PS 3 and see if the CA events go away.
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Membership in the Advisory Members group does not imply medical expertise or qualification for advising Sleep Apnea patients concerning their treatment.



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#3
RE: 200+ days in, no real improvement, docs have no clues.
yup, you probably work too much, burn out. I have most also.
CPAP is just one of the things that will help, you need to fix the rest also.
Your numbers are ok, look elsewhere.

Signs of physical and emotional exhaustion:

Chronic fatigue. In the early stages, you may feel a lack energy and feel tired most days. In the latter stages, you feel physically and emotionally exhausted, drained, and depleted, and you may feel a sense of dread for what lies ahead on any given day.

Insomnia. In the early stages, you may have trouble falling asleep or staying asleep one or two nights a week. In the latter stages, insomnia may turn into a persistent, nightly ordeal; as exhausted as you are, you can't sleep.

Forgetfulness/impaired concentration and attention. Lack of focus and mild forgetfulness are early signs. Later, the problems may get to the point where you can't get your work done and everything begins to pile up.

Physical symptoms. Physical symptoms may include chest pain, heart palpitations, shortness of breath, gastrointestinal pain, dizziness, fainting, and/or headaches (all of which should be medically assessed).

Increased illness. Because your body is depleted, your immune system becomes weakened, making you more vulnerable to infections, colds, flu, and other immune-related medical problems.

Loss of appetite. In the early stages, you may not feel hungry and may skip a few meals. In the latter stages, you may lose your appetite all together and begin to lose a significant amount of weight.

Anxiety. Early on, you may experience mild symptoms of tension, worry, and edginess. As you move closer to burnout, the anxiety may become so serious that it interferes in your ability to work productively and may cause problems in your personal life.

Depression. In the early stages, you may feel mildly sad, occasionally hopeless, and you may experience feelings of guilt and worthlessness as a result. At its worst, you may feel trapped, severely depressed, and think the world would be better off without you. (If your depression is to this point, you should seek professional help immediately.)

Anger. At first, this may present as interpersonal tension and irritability. In the latter stages, this may turn into angry outbursts and serious arguments at home and in the workplace. (If anger gets to the point where it turns to thoughts or acts of violence toward family or coworkers, seek immediate professional assistance.)
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#4
RE: 200+ days in, no real improvement, docs have no clues.
I don't think an API of 3.3 average is that good. I would try to get your number lower first. If after that your still not feeling rested than you should follow up Dr Kryogen's advice.
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Advisory Members serve as an "Advisory Committee" to help shape Apnea Board's rules & policies.

Membership in the Advisory Members group does not imply medical expertise or qualification for advising Sleep Apnea patients concerning their treatment.



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#5
RE: 200+ days in, no real improvement, docs have no clues.
+1 for a switch to auto and see where the machine wants to go. 7/20 and the PS and any more ca, can be sorted as you go. After 200 days, I think you may be stuck with 1ca an hr. Pressure ca normally go within 12 weeks for most people. I don't know if the machine is reading it right, but the tidal volume is down a bit and the breath rate is up a bit, an increase in PS may be needed later, see how it goes.
new http://www.apneaboard.com/wiki/index.php...re_success
mask fit http://www.apneaboard.com/wiki/index.php...ask_Primer
From machine or charts for auto-cpap, set the min 1cm below median pressure, or 2cm below 90/95%. max at 20cm for now. Forum will help you fine tune settings
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#6
RE: 200+ days in, no real improvement, docs have no clues.
I guess we are all in agreement here. Vauto Mode, EPAP min 7,0, PS 3.0 IPAP max 14.0. You have enough residual obstructive apnea, that it could account for fatigue. My average AHI is around 0.5 and have a considerably higher untreated AHI (there really isn't any relationship, but as long as you went there). In addition to the sleep doctor and RT, I hope you have brought this up with your regular doctor and have done the physical and bloodwork.
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#7
RE: 200+ days in, no real improvement, docs have no clues.
My primary doc has been involved, done more bloodwork and testing than I care to think about, with nothing interesting popping up. Thyroid, testosterone, and counts were all within normal ranges. 

About 8 months ago my job shifted to what it is now, where I'm mostly doing a couple of talks to the public a month, and backstopping our technical folks on weird issues. I've actually got significantly more downtime that I'd had before in that, and it lends itself to dry spells. I'm not having to do any talks in December, for example. 

I adjusted the machine before taking my nap this afternoon. 3 hours, AHI of 14.27 (11.03 CA), with a 95% pressure of 12.12. I'll see how it goes over the next couple of days.
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#8
RE: 200+ days in, no real improvement, docs have no clues.
Good luck with all that. I'm in the same boat.

Blood tests are ok, doc test is ok, ahi is ok, still tired.

Hope you find your solution. Lowering AHI will help I guess.
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#9
RE: 200+ days in, no real improvement, docs have no clues.
was that epap 12 or ipap 12? ..was it epap 12.12 and ps5 = ipap 17.12?
It certainly gave you some pressure CA.
I'd get a full night up and see where it goes, maybe another type of machine in the end.
new http://www.apneaboard.com/wiki/index.php...re_success
mask fit http://www.apneaboard.com/wiki/index.php...ask_Primer
From machine or charts for auto-cpap, set the min 1cm below median pressure, or 2cm below 90/95%. max at 20cm for now. Forum will help you fine tune settings
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#10
RE: 200+ days in, no real improvement, docs have no clues.
If he reset PS to 3, the 95% pressure was 12.12/9.12. It's hard to judge from a nap, especially after a change in settings, as that can increase CA events, but this seems like a lot.
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