Huh?

[Little_Peep]

I went in for my 3 month checkup yesterday. My sdoc had set my apap to a pressure range of 10-16. Unbeknownst to him, I knew how to access the data and had the software and card reader to monitor my progress. My AHI was consistently near 10, with and AI of 2 to 3. So, on the advice from this forum, I gradually increased the lower pressure until my AHI was <5, which for me was a setting of 12.6. So, had I not been able to monitor and change my own therapy, I would have probably spent the last 3 months with an unacceptable AHI.

He was pleased with my progress but seemed stymied when I told him that I was still very sleepy during the day. He didn't think it was due to narcolepsy so he didn't know why I was still sleepy! Said he'd see me in a year to see how my cpap therapy was going. A YEAR?!? Huh? That's it? That's what happens if successful cpap therapy doesn't take care of the sleepiness and narcolepsy is not a consideration? Did I miss something? I, a lowly animal doctor, would not stop if I had a patient that was still showing signs of a problem! Shouldn't he have pursued other causes of excessive daytime sleepiness: bloodwork, thyroid profile, something? I went to a sleep specialist because I am ^&*#&$ extremely sleepy all of the time! I feel cheated.

[Suetois]

I had the same experience--fairly good response to APAP therapy in terms of major improvement in my AHI, but still completely and debilitatingly exhausted every day. Other issues like thyroid problems and depression have been dealt with. MY sleep doctor (a neurologist) said that this is the case for 20-30% of people who use CPAP correctly--and prescribed Nuvigil (a narcolepsy med) for me. He explained that while I don't have narcolepsy, the medication would probably help me feel much better and improve the quality of my life. He was exactly right. CPAP isn't the whole solution to the problem for a significant percentage of patients. I certainly wouldn't wait a year to look into whether there was more that could be done to correct your problem.

[KatieW]

Yes, that's disappointing, but not surprising. My experience with sleep docs (2 out of 2) has been similar...get the sleep study, kaching, thank you very much....next patient.

You have done great in being your own advocate in maximizing your cpap settings. Now look to other aspects of your life and sleep hygiene. And ask your primary care doc for the blood work, thyroid, etc tests, if you haven't done so. Good luck, you're on the right path.

[Little_Peep]

No worries. I'm going to go see my regular doc today and see about getting some bloodwork, including a thyroid profile, done. He has actually tried Provigil, Nuvigil, Vyvanse, and Concerta on me but they didn't make a dent on my sleepiness.

[Emilia]

Also have your vitamin D checked...do the full panel for that. Mine was super low and now is in the high normal range.

[raylo]

I had a somewhat similar experience, started xpap, felt somewhat better but still had fairly high AHIs (between 5-10 and early on closer to 10). He upped my pressure (I showed the tech how to do it on my machine - next time did it myself). I was still tired for some time and my doc prescribed Provigil (I only took it a few times -on my worst days - it helped a little). I didn't like the idea of that. With the higher pressure and a few teaks I started getting better numbers but still fairly high.

This site was an extremely helpful element in improving things. I started doing some little things, bought an intellipap auto, and set it using ranges that I figured out from reading the helpful things here. I told my doc and he was okay with that. He seemed much more okay with me being involved with and taking control of my therapy than his staff was. Kind of weird - he was surprised when I told them what they said about how I shouldn't have the software, I didn't need to worry about the settings (even though they had a few wrong), etc.

Continuing to read and experiment got me to about 4-6 as my usual AHI for a while. My machine used pressures throughout the range I had set. I made a few more tweaks, went through about ten masks, before settling on the most comfortable for me. I was lucky, throughout the whole time on xpap, I was able to be very compliant (even when my first mask left me with an open sore).

I settled in, and just stayed with it, but thinking "Gosh, maybe I'm just one of those for whom it never quite works as well as it does for others." I made a few little changes (the breeze pillows inserted into the swift LT for example), but mostly just stayed the course. It went for a long time like that, it was so steady that I stopped looking at the data using the software.

But I always checked my screen for average pressure and AHI. About a year into therapy, these both went down a bit. They stayed at another plateau for some time (3-5) AHI. My average pressure came down a bit too.
I started become used to and comfortable with xpap. I became very routine in my habits, such as using chinstrap, lasinoh, and air gel.

I worked (a little) to improve my sleep hygiene, going to bed at a more consistent time, wearing earplugs when needed, and taking some time to read and/or unwind in bed before sleeping. It helped

Now, almost two years into therapy, I definitely feel better! In the last six months my AHI just gradually got below 2 as an average (I still occasionally download the card and look at the data) and I can feel the difference. My average pressure and 95th percentile dropped. I once averaged 10 on my apap and now usually about 7. I almost never max out my pressure range (14 is the top and I once hit it nightly). I can see the progress in the data, but more importantly, I can feel it. And just this recent awareness, that the struggle is finally – truly - paying off, lifts my spirits and well-being. And I still look for tiny tweaks.

The moral:

1. Staying with this, and seeing it as a long term treatment, not a quick fix, may be very important. Just because it doesn’t work completely at first, doesn’t mean it won’t work. Hang in there!

2. Cpaptalk. Com and its members had tremendous influence on this positive path – in some ways more than anyone except the primary physician who first suggested the sleep test. The insight and knowledge gained here was invaluable. I don't know where I would be without it.

Thanks everyone!

[Janknitz]

Sometimes the AHI alone is not enough to tell the story. Do you have access to a recording pulse oximeter to make sure that your O2 levels are good?

My understanding is that an MSLT is called for when there is still a lot of daytime sleepiness despite good CPAP treatment--that may also tell what's going on.

[Pugsy]

But I always checked my screen for average pressure and AHI. About a year into therapy, these both went down a bit. They stayed at another plateau for some time (3-5) AHI. My average pressure came down a bit too.

I also seemed to plateau at about 3 to 5 AHI for a long time. Didn't feel any huge improvement but I kept using the machine and didn't really change anything. After several months the AHI came down to pretty much between 1 and 2 with a few below 1. Even though I didn't see the marked improvement I hoped for I tried to think of it as "preventive" therapy. Even during this time I still tried to isolate any other possible causes for the daytime sleepiness and no energy. My problem was fragmented sleep due to pain. I just kept trying different things to improve the number of hours asleep and have less wake ups. Took me 18 months to finally get the other things taken care of so I finally don't feel the extreme need to nap during the day.

So to the OP here, do the things you need to do to try to find out if there is anything else that could be a contributing factor while using the machine as preventative therapy. There may well be other factors involved, it also could just need more time.

[john.michael]

Wow. This is discouraging.
I am just at the end of my 1st week of vpap.
My 1st follow-up is in a couple of weeks.
I've been assuming that if adjustments are needed, my Dr will recognize and recommend them.
From here and other threads, it looks more like I will be lucky if that is the case.

I sure understand your frustration and feel for you, Little Peep. I would feel cheated as well. I can't believe the Dr wants to wait a full year as-is before you return! I sure would be seeing a different doctor......

Best wishes,
John

[robysue]

Wow. This is discouraging.
I am just at the end of my 1st week of vpap.
My 1st follow-up is in a couple of weeks.
I've been assuming that if adjustments are needed, my Dr will recognize and recommend them.
From here and other threads, it looks more like I will be lucky if that is the case.

I sure understand your frustration and feel for you, Little Peep. I would feel cheated as well. I can't believe the Dr wants to wait a full year as-is before you return! I sure would be seeing a different doctor......

Best wishes,
John

All depends on how your sleep doc's office is set up.

For me, the follow-up was with a physician's assistant. At first (before meeting the PA) this bothered me: But once I met the PA, I quickly realized that she was much more willing to listen to what I was saying and has consistently made quality recommendations about changing my therapy to address some very real problems I have had during my adjustment---even when I didn't recognize them as such. And she's turned into a major advocate and ally when I've needed the doctor to actually authorize something that she can't do herself.

So if your doc seems cold or uninterested or simply too busy to really listen, ask the receptionist if there is a nurse practitioner or PA who meets with patients needing follow up visits. You may find that the nurse or PA will be able to provide you with better care than the doc.