I’m curious if any of you have any ideas for me.
On the morning after my initial sleep study (4/2/14) I felt very energized and clear (as if the “mental fog” had lifted). I was excited that I might be able to feel this way on a regular basis using CPAP. I was fitted with an Auto CPAP machine on 5/15/14 and have used it on a regular basis since, but haven’t felt that same feeling of energy and clarity using CPAP at home. In fact, I’ve actually been sleeping more hours and feeling more tired WITH the CPAP than I did before I had the CPAP. My sleep doctor is satisfied that CPAP is working for me because my AHI with home CPAP is in the normal range (<5), but I’m questioning the efficacy of my treatment.
Here are more details:
After the split night sleep study I was diagnosed with severe Obstructive Sleep Apnea (OSA), Obstructive Hypopnea Syndrome (OHS) and moderate to severe snoring which were associated with mildly reduced oxygen saturation (98% awake to a low of 87%). The study said I had rapid sleep onset, rapid REM onset, high sleep efficiency and severe sleep fragmentation.
During the first 2.75 hours of the study (without CPAP treatment), my AHI was 50. The respiratory disturbances occurred at 15-20 second intervals and had durations of 15-33 seconds (mean respiratory duration 18 seconds); there were no central apneas and the obstructive events were 75% hypopneas and 25% apneas.
During the next 4.25 hours of the study I was given nasal CPAP treatment with pressures ranging from 4-8 cm (pressures was briefly at 4 & 5 and then at 6, 7 & 8 respectively as the night progressed). My AHI during that period was 13; there were no central apneas or obstructive apneas but there were 57 obstructive hypopneas (mean respiratory duration was 15 seconds; maximum respiratory duration 23 was seconds). My oxygen saturation ranged from 92-97%.
On 5/15/14 I was fitted with a ResMed S9 Autoset CPAP with H5i humidifier that was set for a pressure range of 5-8 cm. I used a Fisher & Paykel Eson nasal mask and a Resmed Quattro Air full face mask for the first 2.5 months. I had some difficulties with the masks leaving marks and causing skin irritation and breakouts so after the first 74 days I briefly tried a Respironics Comfortlite 2 nasal pillow mask (I had awful nostril pain that lasted for days but low AHI) and yesterday got the Resmed AirFit P10 nasal pillow mask.
According to the compliance report from my DME (I’m guessing from ResScan), after the first 30 days of home Auto CPAP use my average maximum pressure was 7.9 cm, my 95th percentile pressure was 7.9 cm & median pressure was 6.9 cm. My median leaks were 1.7. My AHI was 3.4, Total AI was 2.9 (Central AI was 0.2, Obstructive AI was 2.1 and Unknown AI was 0.6) and HI was 0.5.
My doctor changed my top pressure to 7 cm on 7/25/14 after 72 days of use because I was having stomach pain and burping, presumably from aerophagia/swallowing air.
After the first 77 days of home Auto CPAP use (5 days after top pressure being lowered to 7 cm) my average maximum pressure was 7.7 cm, 95th percentile was 7.6 cm & median pressure was 7 cm. My median leaks were 3.1. My AHI was 4.6, Total AI was 3.8 (Central AI was 0.2, Obstructive AI was 3.1 and Unknown AI was 0.5) and HI was 0.8.
My sleep doctor was satisfied that the CPAP therapy was working because my AHI was under 5, but I was feeling less rested (more tired) than I did before beginning using the CPAP and I wasn’t feeling the mental clarity and energy that I felt on the morning after the sleep study. My doctor suggested I should take 180 mg of Allegra in the morning and use 2 puffs of Nasacort each morning because I had swollen turbinates. I don’t usually take any medications and I don’t have any obvious symptoms of allergies besides the swollen turbinates (that don’t bother me) so I wasn’t excited about taking medications; the turbinates were also swollen before the sleep study (it was noted on the indications my primary care doctor gave for the sleep study) so I didn’t see why that would be the issue causing the difference in experience between the sleep study and home CPAP use. My sleep doctor also suggested I could try a mandibular advancement device (MAD), which I’m open to, but it still didn’t explain to me why I would feel really wonderful after using CPAP during the sleep study and not feel similarly when using CPAP at home.
At that point I got online and found this group. I downloaded the SleepyHead software (I have a Mac so can’t use ResScan) and began to look at my data each morning so I could correlate the data with how I felt, sleeping position, dreams and mask type. Overall, my numbers look excellent. My AHI has been less than one on 71% of the nights that I’ve used the CPAP and between 1-2 another 10% of the time. The AHI for the night has only been over five on 5% of the nights. So if the numbers are accurate, my apnea should be generally well controlled.
That said, while my overall numbers look excellent, there are some nights when I’m still having many obstructive events; while the overall AHI of the night may be low, if I look at the AHI for the period of the events, the AHI for that period is quite high (for example, according to SleepyHead my peak AHI on 7/20/14 with home CPAP use was 46). There has also been one night (8/18/14) when I woke up with a nightmare in which I couldn’t scream in the dream until I eventually woke myself up actually screaming out loud (this was one of the initial indications for which I did the sleep study) and the report showed NO apneas at the time of or before the nightmare (during which I’m assuming I was having an apnea). So I’m questioning if my pressure range is wide enough to give the machine the ability to stop apneas when they are happening and if the machine is accurately picking up on all my apneas. I’ll do my best to attach a screen shot of three of the nights with many apneic events for your reference. For 7/20/14 & 7/21/14 the top pressure was still 8 cm & I don’t have detailed flow graphs because I downloaded SleepyHead later; 8/14/14 had a maximum pressure setting of 7 cm and a lower peak AHI but has a detailed flow graph. I’ll also include a screen shot of the night (8/18/14) I woke up at 5:39 am with the nightmare during which I couldn’t scream for your reference.
July 20, 2014 (peak AHI 46):

July 21, 2014 (peak AHI 28):

August 14, 2014 (peak AHI 19; 16 OA's between 8:48-9:08 am & 19 OA's between 11:24-11:51 am):

August 18, 2014 (awoke from nightmare not able to scream at 5:39 am but no apnea recorded):

I’m wondering what steps I can take now? What can I ask my sleep doctor to do for me? Do I need a home or lab study that checks the efficacy of my CPAP machine? Do I need a new lab titration study? Do I need a different machine (that uses a different algorithm)? Do I need a higher top pressure? If so, is there a way of increasing the top pressure while avoiding the burping/stomach pain (aeroophagia) I had when the pressure was at 8 cm? Do any of you have any additional suggestions of what might be happening or what to investigate or try?
Thanks so much in advance for any insights or help you might have !
Joyful Sleeper