What next?

I had a sleep study about six weeks ago (my fifth) at a new sleep lab, which went much much better than the previous four: I actually slept. The good news was that my sleep efficiency was 90% and had fairly long periods of REM and N3 (no N4 -- or is that lumped in with N3 these days?). They were titrating me for a nasal mask for use with APAP. One interesting thing -- during the night I had 77 arousals but only 25 of them were associated with sleep disordered breathing. My O2 saturation never got below 95%, and for the most part stayed above 98%. I met with the sleep doc a week later and I was prescribed an APAP with setting 15/5. The DME delivered it a few days later. Unfortunately the DME screwed up and set it up in Bipap mode with pressures of 15/5. The first few nights were hell. I then got a copy of Encore 2.2 pro and looked at the results from the smart card and I was having AHI's of 50. I decided, after looking at this forum and the prescription that the sleep doc had written that I should change the setup to APAP mode. That night was much better. I had an AHI of about 6. I emailed my sleep doc about this and he called back a few hours later. He confirmed that he wanted it in APAP mode, and actually seemed impressed that I able to change the setup and had the software. However, now it's been almost a month with the right settings and I'm feeling just awful. To contrast -- when I was not using CPAP I was feeling merely tired. Now I feel utterly exhausted. However according to the results from the smartcard I should be doing great. For example -- last night I was on the APAP for 8:20 and had an AHI of 3.7.

I listened to the web interview last week that Dr. Park had with Dr. Barry Krakow, and I posed a question to him about his impression of someone whose smart card readings looked good (i.e. AHI < 5) but who still felt exhausted, or even worse than without PAP. He replied that in his experience if the patient isn't feeling any better then the smart card readings are of limited use. He had spoken in the interview about UARS. I've wondered in the past if I've had this so this struck a chord. I spoke with my sleep doc (who's very responsive) about this possibility but seemed to dismiss this by saying that given my readings from the smart card that the APAP should be taking care of the UARS. I asked him about the 50 arousals during the sleep study which were not associated with a breathing event, but he mumbled something about hidden anxiety and just said to keep up with the APAP at the current settings.

It sounds to me like you should get a second opinion, is there anothe sleep doc you could visit?

victormiller wrote: I listened to the web interview last week that Dr. Park had with Dr. Barry Krakow, and I posed a question to him about his impression of someone whose smart card readings looked good (i.e. AHI < 5) but who still felt exhausted, or even worse than without PAP. He replied that in his experience if the patient isn't feeling any better then the smart card readings are of limited use. He had spoken in the interview about UARS. I've wondered in the past if I've had this so this struck a chord. I spoke with my sleep doc (who's very responsive) about this possibility but seemed to dismiss this by saying that given my readings from the smart card that the APAP should be taking care of the UARS. I asked him about the 50 arousals during the sleep study which were not associated with a breathing event, but he mumbled something about hidden anxiety and just said to keep up with the APAP at the current settings.

Medical technology is an important part of medicine, however, a smart card can never replace the ability of a good diagnostician. I see three choices: 1) accept your sleep doc's diagnosis of "hidden anxiety" (this diagnosis is not in the DSM-IV), 2) have another discussion with your sleep doc and try to get to the bottom of your problem, or 3) seek another opinion. I hope you feel better soon. Laurie

According to the latest version of the "International Classification of Sleep Disorders," there are 70 to 80+ sleep disorders (depending on how you count "not otherwise specified" and "unresolved issues") .... several of these, besides the sleep related breathing disorders, can result in unrefreshing sleep and waking exhausted. All sleep doctors should be aware of all of these disorders.

Among this long list of disorders, how does the distribution look?
--and even more important, if one might have a less common disorder, what are the chances of being correctly diagnosed--by the docs out there now?

Victor, same problem for me. Been on the mask for about one month. AHI under 1, no leaks. Yet I feel better if I don't use CPAP. What now? Sleep docs says it is working. I beg to differ.

IF they score RERAs at the facility where you had your sleep study, then presumably they titrate to eliminate them. If they don't score RERAs, I'm not sure that you can be sure that they were eliminated in your titration and that you aren't still having flow limitations with associated arousals.

P.S. I just made that up, but it makes sense to me.

SleepingUgly wrote:IF they score RERAs at the facility where you had your sleep study, then presumably they titrate to eliminate them. If they don't score RERAs, I'm not sure that you can be sure that they were eliminated in your titration and that you aren't still having flow limitations with associated arousals.

P.S. I just made that up, but it makes sense to me.

Here are the figures from the sleep study (sleep time 387 minutes)

Obstructive Apneas: 7
Central Apneas: 6
Mixed Apneas: 12
Hypopneas: 0
RERA: 9

Arousals:
Apnea+Hypopnea: 13
Snore: 5
PLM: 0
Spontaneous: 59

Something is clearly going on here besides a breathing problem.