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Using APAP for Almost a Year with No Improvement! - yenrac - 02-22-2015
I have been struggling with feeling tired all the time, along with waking up and getting a fresh morning start, for much of my life. Also, over the past few years my migraine headaches (mostly upon waking in the morning) have worsened. The almost daily headaches, along with the constant lack of energy, has had a major impact on me. By the way, I am 53 years old, have no major health problems, and not overweight (5'11, 164 lbs.).
About 15 years ago I had a laboratory sleep study. My recollection of what my readings were are now fuzzy. But I do remember that they did not think that CPAP would help, but they did recommend turbinate reduction, uvuloplasty, and deviated septum surgery. I did the surgery and saw little improvement (after a very uncomfortable, long recovery).
Last year (March 2014) I decided to again see a sleep doctor. He could not get insurance approval for a laboratory sleep study, so they did a home sleep study. This study showed that I have moderate apnea (about 18API). Almost a year ago, I started to use an APAP (Philips Respironics System One 560P with a humidifier). I was compliant for a about 4 months, but never saw any improvement. I then stopped using the APAP for about 3 months. Last October I saw the doctor again and he blasted the insurance for not approving a laboratory sleep study. At that appointment, he tweaked the settings (6 to 14 pressure i believe) and followed up in December. In December, he again tweaked the APAP settings (8 to 12 pressure) and set up another appointment that will be coming soon, in March.
I am frustrated because it has been almost a year and I have had no improvements with how I am feeling. In light of the fact that I am not doing well, shouldn't my sleep doctor be seeing me more often in order to tweak the settings and get me feeling better? My headaches are better, but still affect me most days (the headaches improved a while I was not using the APAP last year, go figure). Ever since I have had this machine last year, I constantly would see wide fluctuations of the AHI 3 to 15, with about an average of 6-7).
An interesting observation I have made is that it seems that the more sleep I get, the worse I feel (If I sleep 4-5 hours, I seem to feel better, more refreshed and have less headaches than if I sleep for 8 hours). Another observation I have made is that in general it seems that the longer I sleep, the higher my AHI is.
Earlier today I discovered the SleepyHead software and installed it. Data from January 10th to present was downloaded. Here are the main highlights:
1) It seems like there is not a lot of consistency in the numbers from day to day. Some days are better, some worse.
2) My AHI for the past 30 days is 5.18. Many days are 6-7-8, some days are 2-3-4-5, some days are 9-10-11-12.
3) The pressure settings by my doctor presently are: 8-12 (this seems a low to me, at one time
4) My Philips System One APAP has a "split night" mode. Shouldn't we by trying this setting, since some titration can be done in this mode to see the effect of different pressure levels.
5) Several weeks ago my APAP supplier suggested that I have an oximeter test with the while using the APAP. She suggested that I might benefit by having supplemental oxygen. It has been about 4 weeks since she contacted my doctor, and still the test has not been completed. Could it be that I am not getting enough oxygen in spite of using the APAP and that I need supplemental oxygen?
6) As I look at my SleepyHead readings, it does not appear that central sleep apnea is a major part of things.
7) Since I am so frustrated, I am thinking of changing the pressure settings myself and seeing the effect that this would have on my SleepyHead readings. Would this be a bad idea?
Thanks!
RE: Using APAP for Almost a Year with No Improvement! - me50 - 02-22-2015
All of that surgery and still not better, with or without the machine.
Does your machine differentiate between the type of events you have? Does it record centrals?
All I can say is that there must be or might be other sleep related issues going on. Do you dream and/or have nightmares? I would suggest that you video yourself sleeping and see if there are any clues that you see that an in home test will not show.
I had an oximetry test and honestly, I don't know how useful it was IN MY CASE. I think part of my problem is that I don't breath deeply enough at times. Lately I sleep a lot during the day but I stay up later than I ever have, not by choice, but my circumstances.
I just think that in some cases, some people need a more thorough study than can be had by an in home study. You might have narcolepsy or some other sleep disorder that can't or won't show up in an in home study. If you are concerned about your O2 levels, you could purchase a pulse ox and test yourself over several nights. I just don't think one night, just like one night on the machine, is enough to show a pattern.....it only gives a starting point.
I hope you are able to figure this out and I am sure someone else here will be able to give you better insight than I have.
RE: Using APAP for Almost a Year with No Improvement! - yenrac - 02-22-2015
Thanks for that advice. I thought that it might be helpful to attach an image of my SleepyHead graphs on a bad day:
[attachment=1300]
RE: Using APAP for Almost a Year with No Improvement! - TyroneShoes - 02-22-2015
It really does seem as if more is going on here than apnea. Migraines are seldom related to apnea, and are often related to many other things. The docs "thinking CPAP would not help" might be something to consider, and might explain why it is not working all that well for you.
Also, it may be that you just have not found the combination of pressure/mask/humidity/peripheral settings/sleep environment, etc, that is optimal. It usually takes a couple of months, but it is not out of the realm of possibility that you have just not found that yet, being compliant for only 4 months and bailing out.
An average of 6-7 is still about 3 times as good as 18. This means you are being strangled about 11-12 fewer times every hour as you sleep, so that can only be a good thing, and that the therapy, while not yet optimal, is effective. So it is working for you, just not as optimally as we would like it to.
It is also not a direct correlation that how you feel may be tied directly to how effective the therapy is. Feeling better is only one metric, and is often NOT an indicator of how well things are going as far as SA therapy is concerned, and is often a metric related to something else. AHI/RDI on the other hand is indeed a reliable metric of efficacy, and the benefits of therapy may not be visible, but they are real and are helping your health.
The goal of sleep therapy for SA is to keep the airway open, but the ultimate goal (and the ultimate goal of breathing) is to keep your 02 level saturated. So looking at aux 02 is probably worth considering.
As far as AHI levels being inconsistent, that is the nature of xPAP and respiration during sleep. This is exactly why a setting should be lived with for 2-4 weeks minimum before changing it. You are shooting for an average over time, and one night does not an AHI report make.
Good move on SH. Parse your data and find out what the makeup of your AHI is, and that will inform whether you should make a change. And there are smart peeps here that can advise.
If I were detecting that more sleep = worse, I would try biphasic sleep. IOW, sleep for 3-4 hours, get up for an hour or two, and then sleep for another 3-4 hours. If you google this, you will find that it is very natural, and was exactly how humans slept from caveman days all the way through pre-industry (until circa 1790) when clocks, electric lighting, and 8-hour factory shifts changed everything. Worth a shot.
RE: Using APAP for Almost a Year with No Improvement! - trish6hundred - 02-22-2015
Hi yenrac,
WELCOME! to the forum.!
I'm sorry to hear that you have had such a rough time with CPAP therapy. You might talk to your doc about checking to see if you are having other sleep problems.
Hang in there for more suggestions.
Much success to you in getting all this sorted out.
RE: Using APAP for Almost a Year with No Improvement! - Sleeprider - 02-22-2015
Thanks for posting the graph. There is a lot of room for improvement in your therapy results, and your AHI is primarily H, OA which will respond to increased pressure. In addition, by increasing the minimum pressure you should experience less pressure swing through the night which can be disruptive to sleep.
If this is typical, I think your pressure is low by about 2 cm. I'd start by raising the minimum and maximum pressure by +1 cm each. I think you will see positive results from this change, and I anticipate that your optimum pressure will be +2. If you're willing to try something out, let's increase your min pressure to 9 and max pressure to 14 and see what happens.
RE: Using APAP for Almost a Year with No Improvement! - yenrac - 02-22-2015
Thanks for both responses! I have dealt with the migraines in other ways also, and chiropractic care with my neck seems to have had a positive effect.
Biphasic sleep is new to me and worth looking into.
I totally agree that just because I am not feeling better that I should hang in there with this, because I am sure that there is a benefit of having less apnea episodes. I sure would like to rule out if low O2 saturation is a cause. My theory is that maybe the reason I feel better when I get less sleep is that at least when I am awake I am breathing normally and getting better O2 saturation.
RE: Using APAP for Almost a Year with No Improvement! - yenrac - 02-22-2015
I like the idea of increasing pressure. Some of my days show that I top out at the high end. My understanding is that there is no harm in increasing the maximum pressure a lot, since I am using APAP and I will not probably reach the higher pressure anyway. Do you think it would be ok to increase my minimum pressure from 8 cm to 10 cm?
RE: Using APAP for Almost a Year with No Improvement! - Sleeprider - 02-22-2015
Of course! I originally said I think you need to be +2, and wanted to ease you into it. I totally agree 10/14 is appropriate.
RE: Using APAP for Almost a Year with No Improvement! - TyroneShoes - 02-22-2015
I did exactly that (8-14 to 10-14) and it cut my AHI from 2.7 to 1.7 (30/50 day average). It does make leakage a little more touchy, however.
The only issue with raising min pressure is that it can cause more centrals, but it is worth a try. If you are going to try this, hang in for a couple weeks and get an average. If you are "topping out" on the high end, that may indicate that possibly upping that a couple of cm might also be in order, but try just the min pressure change first. Baby steps seem to work best.
Your last couple of posts have sounded a lot more optimistic. Taking control of your own therapy can really change your outlook. It seems like you are starting to get an attitude that will only help you along the way. Best of luck. Stay in touch.