UARS, low numbers bad sleep, MMA, now on CPAP

Hey all. I've been participating in threads for a few weeks, but I thought I'd start my own to ask some questions and journal my experience. Start with a (relatively summarized) version of my health story in case it strikes a chord with anyone else out there. If you just want my CPAP observations and questions, skip to the next post.

For about 10 years, from 1997-2007, I had gradually increasing sleep trouble. Would wake up early, lie in bed, have trouble going back to sleep. When I got excited about a new idea I would have trouble falling asleep. Had bad seasonal/environmental allergies to plants and animals, developed acid reflux, at one point I went to Stanford sleep center and they said I had behavioral insomnia and sent me to a group class. It didn't help. Sleep partner noticed I was gasping at night and I slowly began to suspect apnea, though it was hard to believe because I was young, thin, athletic, and wasn't conscious of any choking at night. In 2003 I had a septoplasty & coblation turbinate reduction. Didn't help.

During this period I started using sleeping pills with increasing frequency, trying many different ones in the vain hope that one would give me refreshing sleep. But at least they made the awful nights pass quickly. In 2006 I had an RF procedure for GERD. By now I'm never sleeping more than 5 hours straight, I have a 3-5 hour chunk, then wake up every 30m - 2 hours the rest of the night. My nose gets more congested during the course of each night and my sleep gets worse. By the end of this period I no longer have trouble falling asleep, or getting back to sleep, because of mounting sleep debt. There were times during this period when (for example) I spent a month in the mountains on a regular schedule and still felt tired all the time, so I knew it wasn't just insomnia.

2007-2011: apnea diagnosis & failed treatments.

In 2007 I go back to Stanford, see Dr. Guilleminault, who takes one look at me and says "UARS, bet you had your wisdom teeth out & needed braces as a kid" (true). I have my first sleep study, mild OSA, RDI of 11, Min O2 89%, which they said was low for my age. I tried APAP for a few months, it didn't seem to help and was uncomfortable, my mouth kept opening & I didn't know about chin straps, I got a full face mask, still wasn't good. Being young I wanted a permanent solution and gave up on CPAP in favor of surgery. Unfortunately I didn't find these boards, so I didn't realize how much tweaking & time were needed for CPAP.

Post-diagnosis & trying CPAP I got a tonsillectomy/adenoidectomy (no effect), custom dental appliance advanceable by a screw (helped noticeably, but not enough to feel better), and in 2009 got MMA surgery from Dr. Li which I wrote a lot about on this thread: viewtopic.php?f=1&t=84488&st=0&sk=t&sd=a and this one http://www.apneasupport.org/ways-that-a ... 30746.html. It halved my RDI from 11 to 5, with noticeable subjective improvement, but I still felt a little more tired each week than the last. Dr. Li says my mind is very sensitive to disturbance, which is why I feel so bad with such low numbers (classic UARS hypersensitive).

During this period I started to get more frequent "colds", with post-nasal drip, mild cough, congestion, that never developed into being fully sick, but would last for weeks. (I learned from "Sleep...Interrupted" that this is caused by SDB, just a few months ago). Had a widely varying sleep schedule, would get up early if I had to for a meeting, would take sleeping pills and sleep in when I could to "catch up" (mistaking quantity for quality). Still had acid reflux regularly (again, sign of SDB). Used caffeine most days, rarely had any alcohol. Slowly increasing frequency of evenings when I'm "tired & wired" - exhausted by not sleepy, and am up for hours. (Likely my HPA system becoming increasingly dysregulated).

I question on and off whether I really have SDB, and whether it is causing my mounting fatigue. If so, wouldn't MMA have helped? During this period I'm still able to hold it together: job, family, busy and active, but I'm running on borrowed time.

2011 - present: increasing dysregulation and hope

My borrowed time runs out, and after a combination of huge life stressors, I become a semi-invalid, working less & less, resting a lot but still feeling exhausted, increasingly dysregulated body (hugely out of range cortisol, thyroid slightly off, more frequent evening tired & wired), wonder if I have adrenal fatigue (what a waste of time - I have SDB), use sleeping pills every night (klon), try kicking them cold turkey once and it's horrible, see a naturopath, a neurofeedback doc, start getting allergy shots, get a turbinate resection from Dr. Li (helped nasal breathing noticeably when clear, but my nose still gets congested & the middle turbinate still swells and blocks airflow), try a rigid 12pm-8:30am schedule (sleep hygeine) it doesn't help...

Finally, last summer & fall, desperate for a cure, I re-evaluate my sleep, aided by reading "Sleep...Interrupted" and "Sound Sleep, Sound Mind". I realize that my reflux, semi-colds, nighttime congestion, endocrine dysregulation, and (of course) non-restorative sleep all point to my continuing to have SDB. I also realize that my long-term sleeping pill use likely worsens my sleep (google benzo addiction to learn lots more - there is no data to support long-term use of these drugs being good, and "tolerance withdrawal" makes them eventually cause exactly the symptoms they are meant to treat). Finally, I suspect I have insomnia (which can cause and be caused by SDB, as Dr. Krakow has found), since I sometimes have trouble falling asleep & staying asleep.

I notice that over the years I've focused a lot on quick fixes (sleeping pills, surgeries, breathe-rite strips, sprays, neti, gadgets, special pillows, blah blah). Some of these are actively harmful in the long-term (pills), many are simply too "weak" to treat SDB (breathe-rite helps in studies, but will rarely be enough by itself, same goes for neti pot, etc), and only the surgeries were actually worthwhile. I decide that if I want to feel better, I'm going to have to do some hard fixes that are "strong" enough to have real impact, and that I've been avoiding: treat my SDB with tenacious use of CPAP, get off sleeping pills, and (if I still have poor sleep) "reset" my sleep with sleep restriction therapy. I put these off for years because I never felt like I had any extra time & energy for hard solutions, but I can't keep on feeling like this, it's time to get serious.

Starting 8/2012, I began a slow liquid taper off benzos using dilution by serial titration. I'm now at almost zero (perhaps 0.05mg klon). I highly recommend the slow liquid taper, although I messed mine up a few times (my liquid got moldy, I miscalculated a couple times) and definitely felt wonky. The online consensus is that it takes 3-18 months to heal after quitting, depending on dose, time used, and individual, so I'm hopeful of benefit in the coming months.

Starting in Dec (last month), I started seeing a sleep dr again and using CPAP, bringing my old machine up from the basement. The holidays were hard, with time zone changes, me using Provent during travel instead of bringing my CPAP, and I had an erratic schedule until my partner started work this week. Moving to an earlier schedule has always been really hard for me, I prefer a > 24 hr day, and the last few weeks have been really rough and disappointing, not feeling benefit, feeling even more tired than usual, though being committed to sticking it out for many months. But last night was a noticeable improvement, I slept better and feel better today than I have all week.

This got really long, so I'll post my cpap observations and questions in a reply.

So sorry for all the problems you have had and are going through. Sounds like you could use help with your CPAP therapy. You did not show your machine. For people to help you with this you will need to post your machine and show some data. There are some very smart and helpful people on this board. Good Luck

Ok, here are some of my CPAP/sleep stats, observations, and questions.

I've used CPAP for 16 of the 25 nights since I got my machine (ResMed Autoset Spirit with Mirage full face mask) setup and got new headgear (the foam decayed after 5 years in the basement). Average compliance on those nights is 83% (occasionally get sick of machine towards morning and take off mask, especially if I wake up 30-40min before alarm, and want to enjoy lying in bed. I've tried min pressures from 5 to 8, my 95% pressure has ranged from 6.4 to 10.8, and 1.4 - 4.8 higher than my minimum. My AHI has been 1.3 to 4.6 (from 5-6 in my last sleep study).

Before CPAP, I used Zeo for several months. I averaged 311 minutes of sleep, with an SD of 80 (very inconsistent schedule). REM %age averaged 27% (SD 6%), Deep 16% (SD 6%), and my own ZQ metric: REM+Deep-Wake averaged 39% (SD 8%). During my 8 nights where I had Zeo & CPAP on and working all night, I slept 441 min on average, with an SD of only 30 (much more consistent schedule), REM avg was 25%, Deep 20%, R+D-W 40%. I seem to have lost some REM and gained some deep, though there is way too little data to be sure (differences are less than 1 std deviation).

Last night was my first time having a little of the magic CPAP experience I've seen people talk about, where they wake up with lots of sleep inertia from deep sleep. For me, it was waking up after 2 hours, then another 2 hours, both times feeling apneic (nose stuffy, short of breath), BUT both times feeling like I was yanked out of unusually deep sleep, whereas usually I feel like I doze fitfully all night, and I felt more rested in the morning for the first time in weeks.

Here is a grab-bag of thoughts, observations, and questions.

I regret not wearing the CPAP & Zeo every night. Gaps in the data make it harder to track progress.

I think it's important to focus on changes like "was my sleep better than previous nights" and "do I feel more rested than yesterday" rather than "do I feel good and energetic". It took a lot of nights of bad sleep to get here, even if I start sleeping great it will take a lot of nights to recover.

Having used CPAP for several months 5 years ago made it much easier to tolerate. I was up to 80%+ most nights (except when traveling) by the 3rd night.

My leak rates have varied a lot, the first week they were steady at 0.16 - 0.20, but they've spiked to 0.56, 2.2, and 0.6 on various days, I'm not sure why. I've tried tightening/loosening. It may be that I roll around on the mask, I don't have a wall hose pivot set up yet. Higher leak rates don't seem to correspond to higher AHI.

I got a lot of cottonmouth, despite humidifier (which would be close to empty by morning, clearly working). Searching this board I found that having mouth open with a full face mask can cause this, and I got lots of chipmunk cheeks which is evidence that air is getting in my mouth. Last 2 nights I wrapped an ace bandage horizontally around my mouth/neck to keep my mouth closed. My AHI dropped to the lowest values yet (1.3, 1.5). I ordered a pap cap.

I find the full face mask annoying for many reasons: pressure points and red marks on my face, it's bulky and I can't sleep facing downwards (which helps SDB). I got it before because I didn't know about mouth taping, chin straps, etc. I have an appt at my nearest non-awful DME (the close places are 1-2 stars on yelp, yech) tomorrow to get nasal pillows, I'm optimistic it will be much more comfortable, and that I can strap my mouth closed, and hopefully not have so much leaking.

I agree with the local wisdom here that you should only change one thing at a time, otherwise it is too hard to see an effect in your date, but I find it hard because I want to get my therapy as good as I can as fast as I can, by changing many things. I expect to change more things at the beginning as I settle in, then just do one experiment at a time.

Even though sleep is incredibly important, it takes a lot of work to read the forums, read books, look at my data, and make things better, and I find it very hard to make the time away from my family & work commitments, especially given that I'm super-tired all the time. If I can just generate some more energy, I feel I could do much better. Highly recommend that people fix their sleep problems before they get horribly exhausted, I really wish I had taken the time, even a year off work living on savings, before I got to a crisis, before having kids and more demanding jobs, etc, to fix this. Say, back when I was diagnosed in 2007.

I find it really annoying to have only summary data from my machine (and it was set noon - noon, I lost data sometimes sleeping past noon or not checking the display past noon). I have a mac, I tried getting a null modem cable, USB -> Serial Cable, and using an emulator to let ResScan talk to the machine, but the hodgepodge was too much and it didn't find the connection. I definitely want to get an S9 soon, so I can use SleepyHead and a smart card.

As I posted on the giant ASV thread viewtopic.php?f=1&t=65791&p=779344&hilit=asv#p779239 (can we get multiple forums on here, please? ), I've been thinking of getting an ASV even though I don't have any CAs just to have the premium, highest-tech solution to the biggest problem by far in my life (sleep). Maybe that's silly but if I'm going to be a hosehead for the rest of my life I want the best damn machine I can find. I found a local "VPAP Adapt SV Advanced" for $650 on craigslist, but I think it only has the serial connection and I really want to make sure my mac can get the data, so I might buy STL Mark's S9.

I'm interested in a dental appliance, since they supposedly synergize with CPAP, but I'm intimidated by the variety available, and the cost. I'm most interested in the functional orthodontics like HomeoBlock & DNA appliance that actually remold your face over time, but they cost like $6k. Tempted to get a boil-and-bite at the drugstore just to see if it helps. But I should probably settle in with a new mask and machine first.

I'm not really sure what other questions to ask, I've been bummed not to have felt better until last night, but since I have an old machine, an old uncomfortable mask, and am only 2 weeks in, I guess I will just focus on getting a better mask, a better machine, and hoping my sleep improves, and then my fatigue.

patrissimo wrote:I'm not really sure what other questions to ask, I've been bummed not to have felt better until last night, but since I have an old machine, an old uncomfortable mask, and am only 2 weeks in, I guess I will just focus on getting a better mask, a better machine, and hoping my sleep improves, and then my fatigue.

Pattrissimo, I think you nailed it right there. Most important, I think, is get a mask that is comfortable and doesn't leak. Then, a better or more data friendly machine. Give it some time, settle in, gather the data, and make the adjustments. Easy to say, I've only been at it 5 or 6 years, but I know I've made some progess in that time.
I'm looking forward to seeing your progress.

Jay

Have you had a titration recently (and since your MMA)?

SleepingUgly wrote:Have you had a titration recently (and since your MMA)?

No, I haven't had a titration since 2007 I think. But I have an APAP machine, can't I self-titrate? I figure once I get the rest of my setup nailed down I'll try a 1mm different pressure every night and graph it vs. AHI (and maybe Zeo data).

BTW, did a little stats on my 10 nights of full cpap + full zeo so far:

What vs. What R R^2
AHI vs. Deep % -0.199 0.04
AHI vs. REM % -0.352 0.12
AHI vs D+R-W% -0.045 0.00

Not much data, but looks like there may be some correlation between AHI and Zeo-recorded sleep quality.

patrissimo wrote:

SleepingUgly wrote:Have you had a titration recently (and since your MMA)?

No, I haven't had a titration since 2007 I think. But I have an APAP machine, can't I self-titrate? I figure once I get the rest of my setup nailed down I'll try a 1mm different pressure every night and graph it vs. AHI (and maybe Zeo data).

IMO, it's a lot easier to have a starting place, particularly if you aren't just looking at AHI, but you also want to improve EDS, which at least for me, is variable. Changing pressures each night will not allow you to account for variability. If you can afford a titration, I'd do one and use that as a starting point.

patrissimo wrote:BTW, did a little stats on my 10 nights of full cpap + full zeo so far:

What vs. What R R^2
AHI vs. Deep % -0.199 0.04
AHI vs. REM % -0.352 0.12
AHI vs D+R-W% -0.045 0.00

Not much data, but looks like there may be some correlation between AHI and Zeo-recorded sleep quality.

I don't have a ZEO so I don't know what ZEO data means. Is the first number (-.199) the correlation (r) between AHI and % of deep sleep? In other words, AHI is inversely correlated with deep sleep with an r of -.199? What is the R^2?

SleepingUgly wrote:

patrissimo wrote:BTW, did a little stats on my 10 nights of full cpap + full zeo so far:

What vs. What R R^2
AHI vs. Deep % -0.199 0.04
AHI vs. REM % -0.352 0.12
AHI vs D+R-W% -0.045 0.00

Not much data, but looks like there may be some correlation between AHI and Zeo-recorded sleep quality.

I don't have a ZEO so I don't know what ZEO data means. Is the first number (-.199) the correlation (r) between AHI and % of deep sleep? In other words, AHI is inversely correlated with deep sleep with an r of -.199? What is the R^2?

Yep, the first number (r) is the correlation. Squaring it (R^2) tells you what %age of the variation in each variable seems to be explainable by the other. But I'm not sure how to calculate an uncertainty range for these, and 10 data points is not a lot. The AHI vs REM is the only one that might be significant.

Update: I went to my closest DME that didn't have garbage ratings on Yelp (SleepQuest, a CPAP-only DME in SF). Holy crap, have masks gotten a lot better in the last 5 years! I got a Swift FX nasal pillows, infinitely more comfortable than my old Mirage full face mask, I'm optimistic that it will leave less marks, have less leaks, and let me sleep more on my side & front than this huge one. I also tried on a Quattro FX, it was a lot comfier than my old Mirage, but much less than the nasal pillows, I didn't like the air blowing onto my face. Fortunately I have low pressure (< 10), and my PapCap came today, so I don't think a need to use an FFM.

I also talked to the DME cpap tech, and with another forum user, about ASV. The tech said that the ResMed reps say that many of the non-CSA features of ASV (rapid adaptation to OSA changes) are in the latest xPAP devices (S9). And I spoke with someone from the forum with really similar situation to mine, who tried ASV and found xPAP was better. So I got a quote on how much an S9 Auto would be, so I'm going to work with my doctor to get one of those, really looking forward to having full night data I can put into SleepyHead, RERA detection, a smaller quieter machine, and of course any improvements in the algorithm or technology.

I'm also increasing my estimate, based on my conversation with this other user who found benefit from sleep restriction therapy, that insomnia is part of my problem. My sleep doctor thinks so. Even if UARS caused the insomnia (or rather, my behavior in response to it, like sleeping in, irregular schedule, sleeping pills, trying to substitute quantity sleep for quality sleep), at this point it is ingrained in my brain to sleep lightly, even when the UARS is treated with xPAP. So I'm hoping I can find the courage to do hardcore SRT in 5 weeks when I will be in-between jobs.

RobySue is a good resource about sleep restriction and CBT for insomnia. Has anyone heard from her lately? I haven't seen her posting in awhile.

Feeling discouraged after last night, when I first tried the Swift FX, Pap Cap, and wall mount for my hoses.

I guess when I was at the DME I focused on how the mask felt on my face, and didn't really try to breathe through it, because when I put it on last night it felt like breathing through a straw, even when the machine was on. My heart rate went up from anxiety right away because I associate "difficulty breathing" with "miserable nights of apnea". I tried adjusting it to make sure it was attached right, not kinked or anything, but it seems to be inherent in the mask. After about 40 min, I fell asleep for an hour. When I woke up, my nose hurt, I think the mask was too tight, it was hard to fit over the pap cap, so I switched back to my old Mirage Full Face mask & ace bandage wrapped horizontally around my mouth. After 5 hours of that, my face hurt again and I switched back for a couple hours to the Swift FX, but not the pap cap. My ancient machine lost the summary data before I checked it, so no idea what my leak & AHI were.

I was really excited to have a more comfortable mask and chin strap . At least the wall mount worked, I was able to roll over without having to move tubing.

So, enough complaining, specific questions:

Do other people find nasal pillows feel like breathing through a straw? Do I need higher pressure (than 8mm)? Or do I just need to get used to it? How long does it take? I'll keep trying it, but it seems like maybe I should get a nose mask and/or full face.

On the Pap Cap, I feel like I'm using it wrong, it really didn't seem to do much to hold my mouth closed even when I pulled it really tight. Does it go under the chin, or does the point of my chin rest in the middle of the strap? I'm small (5' 3"), and the cap part of it was big on my head, it went over my eyes in front, and I had to tighten the velcro to the max in back, so that could be part of it. Or do I need to supplement it with tape - is it supposed to be part of a combined mouth/chin strategy?

I need a good solution for mouth closed no matter what mask, because with my FFM I found that wrapping an ace bandage around my mouth lowers my AHI significantly, as I mentioned earlier in this thread, but it also makes the mask fit worse and my leak go up. I have some medical tape, I'll try that tonight. And pick up some Poli Grip strips tomorrow at Walgreens.

patrissimo,

I have your type of history with a UARS hyped-up nervous system. I didn't do well at all with my first mask, the Resmed FX. I was new to CPAP and didn't know the difference, but the nose pillows were constraining my breathing. It got worse later at night after being in bed for a while. Sometimes I would remember waking up and futzing with the mask, but I think most of the time I would be sleeping (poorly) through it. I believe it just compounded my experience of sleeping airway restriction.

After a while I had the worst problem with not wanting to go to bed at night, no matter how tired I was. I don't even know how I perceived that sleep was stressful, but apparently, somewhere in your head you can remember.

I started using an Aloha mask, which my DME Apria was able to special order. According to some forum posters here, it is similar in design to the Resmed Swift LT (I hope I have the Resmed names right). The Aloha nose pillows are bigger (in medium) and stiffer than Resmed's, and actually help hold my nostrils open. Also, for me anyway, the nose pillows don't collapse and get out of alignment as much with this mask. I put a soft fuzzy sock on each side strap, along my cheeks, to keep me from having residual dent marks in the morning. With the socks it is actually pretty comfy, especially when I sleep on my side.

Finally, you probably know that with a UARS person, things that wake you up frequently are likely to mess up your hormones quite a bit, but won't show up as AHI.

Before going to ASV, I would sometimes have my highest leaks and highest AHI when it felt like a relatively good night. I decided it was because I was actually sleeping through things for a change.

Another thing to think about - Dr. Krakow would look at the shape of your breathing waveform to see if it is normalized. You can check this yourself once you get set up with Sleepyhead.

I breathe fine through the nasal pillows at 7cm or higher.