6th month update

[robysue]

Six months ago exactly was my first night at home with a CPAP.

It's been quite a ride:

First titrated at 9cm and could not tolerate it because of aerophagia, air-in-eyes-through-tear-ducts, general sensory overload, and the start of insomnia. And a major crash & burn as far as daytime functioning was concerned. Felt 100 times worse on CPAP than pre-CPAP and was functioning about 200 times less effectively during the daytime. But got great AHI's on my old Resmed S9 Auto set to straight CPAP mode. Only thing that kept me masking up in those early, very dark days was the knowledge the machine was doing something for the apnea.

October: Within the first month of xPAP I had two meetings with Keryn, the excellent PA in my sleep doctor's office. And a switch to APAP with a range of 4--8cm after a week of titration. Managed to get the air-in-eyes to more or less go away. Took the edge off the aerophagia, but did not eliminate it. And the insomnia continued to grow. And I continued to crash & burn. And felt no better. But the AHI's continued to look good for the most part. [Halloween night was the exception for some reason: AHI topped out at something like 5.5 that night; still the worst night for AHI I've had since starting.]

November: Two more meetings with the PA; still no progress in getting my daytime functioning back. Aerophagia still problematic. Keryn suggests a possible switch to a bi-level. The bi-level titration is scheduled the Tuesday before Thanksgiving.
And the insomnia monster shows up in full glory: 80 minutes to get to sleep and a solid three hour long wake after sleep onset period wipes out most of the night. But what sleep I got felt better than any I'd gotten since Sept. 23. New prescription for a bi-level at 8/6.

December: Shopping for a bi-level. Educating a DME that the V in the Resmed VPAP Auto 25 does NOT stand for "ventilator". Finally deciding on the PR System One BiPAP Auto because it uses an SD card for the data where the VPAP Auto 25 uses a proprietary card. And by now the insomnia has grown fat and strong. And two more meetings with Keryn the PA. And at the second one I can finally say the sleep I get with the BiPAP feels pretty good---but the problem is the insomnia is preventing me from getting any decent quality sleep. And I need to focus my work on the insomnia. And along the way, a diagnosis of migraine-related vertigo with a prescription for topiramate.

January: A sleep restricted regime and a sleep log and prescription sleeping meds as a way to prevent too many "disaster nights" in a row. Sleep log shows aerophagia is still an issue. Topirimate starts causing side effects. But the sleep log also shows a big decrease in sleep latency and a small decrease in number of night time awakenings. Meeting with Keryn results in another titration study scheduled for February.

February: The sleep study results a really good night's sleep and in a pressure reduction to 7/4, which the tummy loves. But unfortunately that winds up letting too many snores in at home and the AHI's start to increase slightly: From the 1.0 to 2.0 range they'd been at with the 8/6 setting to 1.5--3.0 and occasional readings over 4. And I feel those nights with AHI on the high side of 3.5. And the topiramate side effects are serious enough where the neurologist treating the migraine related vertigo switches meds to Lamictal.

March: By March 13, the lamictal had to be discontinued due to adverse side effects. The AHI's were still too frequently above 3. And I'd hit a plateau on the insomnia. On March 13, a phone call to Keryn resulted in my being switched to Auto BiPAP: Max IPAP = 8; min EPAP = 4, PS = 4. Effectively this means the pressure ranges from 6/4 (when I turn the machine on) to 8/4 or 8/6 depending on what the EPAP wants to do. 90% pressure levels are running at 8/6, but median EPAP is 4. So the aerophagia has returned, but not (yet) with a vengence. The AHIs are starting to decrease again to what they were in January. And today my migraine med was officially switched to divalproex sodium (generic for Depakote), yet another anti-seizure med. But this time we're trying a pediatric dose rather than the adult dose. We'll see how it goes.

So six months in, I can still count on one hand the number of days that I've felt "good". But days where I feel "ok" are increasing in number. And truly disastrous days are declining. [Although at the peak of the lamictal side effects things were touch and go.] Spring allergies are kicking in, so I've got permission from both the PCP and Keryn to take Zyrtec every day most likely until frost. [And last night I was brave enough to do a nasal irrigation with a NeilMed Sinus Rinse bottle, which is close kin to the neti pot.]

Physically how I feel each day depends on the interplay between the apnea and the insomnia:

• If both are good (AHI < 1.5 and sleep time lost to insomnia < 45 minutes), I feel pretty decent these days.
  
  If one of the two is good and the other is less than good, there's are some day time symptoms and problems with functioning, but it's manageable.
  
  If both are bad, I feel lousy.

Fortunately the lousy days are getting rarer.

Mentally, I think I'm about 90% there in truly accepting the BiPAP. It still causes sensory overload, but not as often as it used to. I still get angry occasionally. And I still have some real, genuine (destructive and) unresolved anger over the apnea diagnosis and the treatment during my own and only meeting with the sleep doctor himself. I'm not yet depressed about the slowness of the progress on the insomnia war: There has been real and undeniable progress on this front.

But I still mourn for many things which I've lost:

• The ability to sleep with my nose in my husband's underarm (silly sounding I know, but it was my favorite sleeping position)
  
  The ability to go to bed whenever I want. And wake up late on a Saturday or Sunday
  
  The smell of my husband in bed
  
  Talking to my husband in bed (and feeling sexy in bed. With Kaa on my nose, I just don't feel sexy.)
  
  The loss of spontaneity of all things sleep related in particular and spontaneity of my life in general
  
  The sense of feeling like I'm genuinely healthy.

[bayourest]

RobySue
this may seem like small consolation but I always read your posts and I think of you as a pillar of the forum. With the challenges you face you are always there to really help people, and I find your story inspiring and your math help awesome. I know that may seem like small consolation on the bad days but as you report, there is progress and it is a process. I know that you help every one of us who is struggling with good and bad days and trying to make sense of all this. Your clarifications concerning apnea and insomnia are extremely helpful.

[TalonNYC]

thanks for posting this. I'm also an insomniac, and very new to PAP therapy, so knowing that I'm not alone when setbacks happen (as they usually do) is extremely helpful for me.

I feel for your lifestyle changes, I'm dealing with them myself. Please keep us posted!

[KatieW]

Thank you for posting this RobySue. Your description of your cpap herapy experience is so detailed and clear, it gives words and names to what many are feeling as they struggle with their therapy. I sounds like progress is slow but steady. I'm glad for you.

[SnoozyQ]

I give you much credit for fighting through....many others would have given up.

I do sympathize with the diagnosis anger and the 'mourning' of things gone....I really do.

[robysue]

Thanks for the kind words about my posts and support for my on-going journey.

And to TalonNYC: Watch that insomnia---if the start of CPAP winds up aggravating it, treat the insomnia seriously. I'd guess that at least half my battle in getting completely adjusted to xPAP was exacerbated greatly by my long refusal to admit that my standard, longtime effective insomnia management tools were no longer working and that I needed professional help from the sleep doctor's PA to properly address it. You won't feel the full benefit of CPAP until the insomnia is also under control.

[NotMuffy]

[*]I just know if I told someone that their NREMlight/NREMsustained Ratio had inverted because of their medication regimen, that there'd be another question...

So I have to ask: What does that NREMlight/NREMsustained Ratio measure? And what's an inverted ratio indicate if there are no meds being taken?

Well, we started this discussion a few times, most recently in ".", the original CompSAS thread (noting the bistability), as well as several threads noting Cyclic Alternating Pattern.

However, it suddenly occurred to me that perhaps this thread isn't the best place to pursue this discussion...

OTOH, this could be a good spot!

I think a better tool is required to try to explain a bunch of things in problematic xPAP patients, including continued EDS in the face of adequate respiratory event control and/or failure to predictably control respiratory events (like when some people finally stabilize on some sort of xPAP, they thing it's from dial wingin'. More often than not, it's simply acclimation).

To do this, sleep itself needs to be examined. Machine-generated AHIs are meaningless in the face of poor sleep efficiencies.

I see 4 (at least) things that need to be accounted for:

• NREMunstable
• NREMstable
• REM
• Wake

Also, it may be more accurate to present this value as Sleepeffective/Timebed

[NotMuffy]

Hopefully, this should explain:

Recent investigations have demonstrated a fundamental bimodal physiologic characteristic of NREM sleep. Briefly, NREM sleep occurs in electroencephalogram (EEG) stage and power-independent stable and unstable forms. The stable form is characterized by prominent sinus arrhythmia, blood pressure dipping, stable arousal thresholds, absence of cyclic arousals or cyclic EEG activation complexes, and temporal stability of respiration, even if individual breaths demonstrate clear flow limitation. In the domain of sleep stability using the cyclic alternating pattern (CAP) NREM EEG construct, the stable state is usually characterized by non-CAP EEG. Unstable NREM sleep is characterized by periodic phasic EEG complexes, cyclic variation in heart rate, blood pressure that stays close to the waking level, reduced and variable arousal thresholds, and temporal instability of respiration. In the domain of sleep stability when the CAP NREM EEG construct is used, the stable state is usually characterized by CAP EEG. In health, the subtly periodic respiratory volume fluctuations may be barely visually discernible but occur especially at sleep onset or during transitions into and out of individual NREM cycles and close to REM sleep. In the presence of sleep-disordered breathing, these respiratory and EEG patterns are greatly amplified.

http://www.medscape.com/viewarticle/515202_4

[NotMuffy]

Cause you look a little more like a UARS than Moderate Sleep Apnea:

I'm a newbie here. I apologize in advance for the length of my posting about my sleep studies.

I've now had two sleep studies done, one baseline and one with titration. After a brief tussle with my sleep doctor's office, I've now got copies of the reports, but not the full studies. Having been reading a lot about sleep apnea both here and elsewhere, I'm pretty sure I understand most of the things on the report, but I am confused by a few things under the Respiratory Analysis and Movement & Arousals sections of the summarized data.

So here's the brief version of the original study without CPAP:

EEG/EOG
Latency to sleep onset was slightly prolonged at 55.8 minutes.
Latency to REM sleep was prolonged at 159.0 minutes.
Overall sleep efficiency was 69.7%
# REM Periods: 1
#Stage Transistions: 41
#Awakenings: 13
Total sleep time in Stage1: 8.6%
Total sleep time in Stage2: 71.9%
Total sleep time in Stage3: 9.4%
Total sleep time in REM: 10.1%
Patient was observed in both supine and non-supine positions.
Frequent arousals were present and were commonly associate with respitory events.
All stages of sleep were identified.

Repiratory Parameters:
Baseline respiration rate was 12-14 breaths per minute in REM and 12-18 breaths per minute in NREM sleep.
Soft snoring noted by technician.
Overall respiratory disturbance index was 23.1 with a minimum oxyhemoglobin saturation of 91%.
Mean oxyhemoglobin saturation was 96%

EKG:
Baseline heart reate was 66 beats per minute in REM and 64 beats per minute in NREM sleep.
No significant EKG abnormalities were observed.
Mean Pulse (beats per minute) for total time in bed: 65.3
Min. Pulse (beats per minute) for total time in bed: 55.4
Max Pulse (beats per minute) for total time in bed: 97.3

EMG:
7.0 periodic limb movements per hour of sleep noted. They were rarely associated with arousals.

Interpretation:
These findings indicate the presence of moderate obstructive sleep apnea consisting mainly of apneas and hypopneas, with associated disruption in sleep architecture and minimal oxyhemoglobin desaturation. (RDI: 23.1 and minimum oxyhemoglobin desaturation: 91%).

Additional Data of Respiratory Analysis
There's a table that looks like this:

Code: Select all

Type                       NREM count     REM count     Total Count     Total Index
Central Apneas:               0               0             0              0.0
Obstructive Apneas:          14               0            14              3.5
Mixed Apneas:                 0               0             0              0.0
Hypopneas:                   71               7            78             19.6
Hypopneas w/ Desat:           0               0             0              0.0
Hypopneas w/ Arousal:        71               7            78             19.6
Apneas + Hypopneas:          14               0            14              3.5
Supine Events:                -               -             7             15.3
Nonsupine Events:            -                -            85             24.2

AHI = (OA + CA + MA + OH w/desat) per hour of sleep:
AHI NREM:  3.9
AHI REM:   0.0
AHI total: 3.5

RDI = (OA + CA + MA + OH w/arousal + OH w/desat) per hour of sleep:
RDI NREM:  23.8
RDI REM:   17.5
RDI total: 23.1

Additional Data on Movements & Arousals:
This is in a table that looks like this:

Code: Select all

type                      NREM count   NREM index     REM count     REM index    Total count    Total index
Total PLMs:                 28             7.8             0           0.0           28            7.0
PLM Arousals:                1             0.3             0           0.0            1            0.3
Respiratory Arousals:       71            19.9             7          17.5           78           19.6
Spontaneous Arousals:       11             3.1             3           7.5           14            3.5
Total Arousals:             83            23.2            10          25.0           93           23.4

So here are my questions:
1) I'm real confused about why the Hypopneas with arousal don't seem to be counted in the AHI. They're clearly counted in the RDI. Any ideas or comments on why they're not counted in my AHI?

2) What's a Spontaneous Arousal? Do they show up in the AHI? the RDI?

Sleep study done with CPAP titration results
On the sleep study with the CPAP titration, the sleep doctor's report indicates that once the pressure was set at 9cm of H20, "supine sleep was noted and the overall respiratory disturbace index (RDI) was reduced to 0 with a minimum oxyhemoglobin saturation of 95%" The chart showing sleep position also shows that this is the FIRST time that night that I'm asleep on my back. I don't like sleeping on my back because it makes my lower back hurt. Total time at 9cm was only 30 minutes and included no REM. Should I be concerned about this at all?

Also on the titration sleep study, the EEG/EOG notes say: "Latency to sleep onset was prolonged at 61.4 minutes. Latency to 1st REM sleep was within normal limits at 93.5 minutes. Overall sleep efficeincey was diminished at 73.7%. The patient was observed in boht the supine and non-supine position. Frequent spontaneous arousals were present." The sleep report also says:
# REM periods: 2
# Stage Transistions: 44
# Awakenings: 15
Total sleep time in Stage1: 5.5%
Total sleep time in Stage2: 76.1%
Total sleep time in Stage3: 0.0% [That's not a typo--it really says zero.]
Total sleep time in REM: 18.3%

All the numbers listed in the Respiratory Analysis section went down. Total PLMs and PLM arousals were 0. But the Spontaneous Arousals went way up:

Code: Select all

Total Arousals     without CPAP     with CPAP
NREM count:              11            20
NREM index:              3.1            5.8
REM count:               3             10
REM index:               7.5           12.9
Total count:             14            30
Total index:             3.5           7.1

So what does this mean? Is it unusual to have NO Stage 3 sleep during a sleep study? And why would my spontaneous arousals go up so much during the titration study? Could it simply be that the wires (and the mask) were bothering me more during the CPAP study? [Maybe because my breathing was bothering me less?] I do remember waking up several times that night with a super itchy nose and feeling like I needed to seriously rearrange the bedcovers too.

At any rate, I do have a second appointment with the sleep doctor scheduled in a couple of weeks. I'm hoping to have a CPAP at home by then, but I'm running into problems with my insurance/HMO/PPO not wanting to pay for a full data CPAP machine and I don't want to accept a basic level machine that only tracks compliance since I really think I need to be able to see that the CPAP machine is working on a regular basis in order to help me with compliance. At any rate, at that meeting with the sleep doctor, what kinds of things should I be insisting on having explained to me about either of the sleep studies?

[NotMuffy]

Cause you look a little more like a UARS than Moderate Sleep Apnea:

Although that's not a new observation:

viewtopic.php?f=1&t=58596&st=0&sk=t&sd= ... s&start=30

[NotMuffy]

BTW, did you ever get graphs from the sleep studies?

Analysis of actual sleep study raw data and waveforms from DLs I'm sure would be quite fruitful, but it's very time consuming, and quite frankly, "dots" kinda made me lose interest in doing stuff like that.

[NotMuffy]

Crazy people!... I'm on a message board with crazy people...
(...and lovin' it.)

I dunno, there, RG.

There may be a cutoff point...

I mean, there's "crazy", and then there's "crazy"...

[robysue]

NotMuffy,

I really appreciate your comments and insight into my situation. And being willing to go back and find those early posts of mine with the data from my first two sleep tests. And linking to my thread about the insomnia monster.

I've read your posts on my threads carefully. I don't often comment on them. I do think seriously about what you say. And I take your suggestions seriously, by the way. Over the last six months, you've given me some real insight into both my condition and into understanding why I've had so many problems adjusting to xPAP therapy. And that has helped me continue to mask up every single night in spite of all my difficulties.

And I think you may indeed be right that my sleep studies may be more UARS than Mild/Moderate OSA. But near as I can tell, the net result is the same regardless of the diagnosis in that I need the BiPAP. [I don't know if an oral appliance is approved for UARS, but that's irrelevant since my TMJ disorder is a contraindication for OSA oral appliances since the last thing a TMJD sufferer needs is intentional misalignment of the jaw each and every night.]

You asked about the graphs for the sleep studies. I don't have the detailed breath by breath data. I only have the summary graphs. I've got that data for all four sleep tests. If you want to see them, just let me know and I'll scan them in.

You also write:

I think a better tool is required to try to explain a bunch of things in problematic xPAP patients, including continued EDS in the face of adequate respiratory event control and/or failure to predictably control respiratory events (like when some people finally stabilize on some sort of xPAP, they thing it's from dial wingin'. More often than not, it's simply acclimation).

To do this, sleep itself needs to be examined. Machine-generated AHIs are meaningless in the face of poor sleep efficiencies.

Boy do I agree with this last statement. Ever since October, I've felt that while the good-to-great AHIs were a good thing to have, that my sleep as a whole needed to be examined because of my extreme crash and burn in terms of daytime functioning---and that unless and until whatever else was causing me to have problems with getting quality sleep was dealt with, that I'd continue to have serious problems with daytime functioning and nighttime sleeping.

Since the beginning of January, the serious CBT work on the insomnia has been addressing at least some of those other issues. And even with the sleep restricted schedule (max of 6 hours in bed; typically getting 4 1/2 to 5 1/2 hours of sleep NOW), I'm feeling much more alert and much, much more functional during the daytime than I was at any point last fall. I don't think it's a coincidence: Even if I only get 4 1/2 hours of sleep out of 6 hours in bed, that's still a sleep efficiency of 75%, which is better than I got on any of my sleep tests. And most days I'm getting much closer to 5 or 5 1/2 hours of sleep if I'm sleepy enough to go to bed at 1:30 in the first place. So most days my sleep efficiency in terms of (Time asleep)/(Time in bed) is now on the high side of 80%.

So I do think I'm finally grappling more successfully with other causes of my poor sleep efficiency. But I have not yet "solved" all of them. And certainly the Feb. 4 sleep study's data on arousals and sleep staging bears this out: Healthy amounts of both REM and Stage 3/4 sleep for the first time in any of my sleep tests, but still a long WASO period and reduced sleep efficiency. I'll look the data up if you want me to.

As for dial wingin' vs. simple acclimation: I think you're onto something here. The two most critical aspects of my acclimation to xPAP have been (1) simply getting used to the sensory overload to the point where it no longer feels like sensory overload and (2) finding a pressure setting that my stomach can tolerate that effectively treats the sleep disordered breathing.

Dial wingin' actually works against (1): On every prescription change it has taken me about a week to settle into the new prescription. But time in general and my stubborness on masking up every single night in spite of my emotional feelings about it in the darkest days has allowed my highly sensitive body to slowly redefine "normal sleep environment" to include having air blown down my throat. The back of the throat is tickled by the air a whole lot less than it was back in October and November. The insides of the nostrils only notice the pillows if they're slightly out of place and need to be reseated anyway. The brain is more able to ignore the conducted noise of my own breathing on a nightly basis. The pressure changes in auto don't seem to wake me up now. (They did back on the S9 APAP in October and November.) Heck, I've even "lost" my ability to sense those dang pressure pulses the PR System One uses and those test pressure increases the PR S1 uses as part of its auto algorithm, both of which are a whole lot larger than the FOTs the S9 uses and in October those FOTs could wake me up. All good things. And every one of them happened simply by giving my poor ol' sleep deprived body enough time to figure out how to acclimate to the new "normal sleep environment" and ignore all the new sensory stimuli. If only I could train my overly sensitive lips to not get chapped every time I have a 15--30 minute leak that blows on them, I'd be all set .... [Fortunately I only get such leaks a couple of times a month now.]

Now I have had five different pressure prescriptions on two different types of machinesin the last six months in an effort to find a sweet spot on the pressure setting that both the stomach can live with and that effectively treats my sleep disordered breathing. The switch to BiPAP was well worth it in my opinion and I've no desire to go back to CPAP or APAP: Because what passes for a "bad" night for aerophagia now would have been a "good" night back with the S9, and I don't think this is merely "adjusting" to the new new. I no longer wake up several times a week with a badly distended and extremely painful stomach full of air, which was a constant occurrence with my first titrated pressure of CPAP at 9cm and a common occurrence throughout the entire time I was on the S9. And it would have been nice if that 7/4 titrated level from the last sleep study had worked as well at home as it did in the lab. But it didn't and c'est la vie. At least with the current Auto BiPAP, the pressure is not at 8/6 all night long. So the tummy is not as unhappy as it was and the SDB is still effectively treated in the sense of how I physically feel when I wake up. [Lots less general vague joint pain mainly; no real increase in daytime energy levels, but at least I'm beginning to return to pre-CPAP energy levels.]

So again, thanks NotMuffy for the many thoughtful and insightful comments you've made on both this thread and others of mine during these last six months.

[-SWS]

Robysue, researcher Avram Gold, MD just so happens to specialize in SDB patients with your symptomology. I wouldn't necessarily suggest changing sleep doctors. But I would suggest a second-opinion consult some day----perhaps during an extended-weekend vacation to the NY city area:
http://www.stonybrookphysicians.com/doc ... AM_883.asp

I don't know if you listened to Dr. Gold's expert interview yet: viewtopic.php?f=1&t=61702&st=0&sk=t&sd=a#p579740

If not, I would suggest that you specifically listen to Dr. Gold's theory about UARS and fibro patients possibly having an overactive limbic-system response to CPAP's and even SDB's sensory input. Very interesting. Regardless of whether his theories and research direction are right or wrong, he is also a practitioner who is likely skilled in your specific hypersensitivity type issues.

P.S. I also agree with NotMuffy that cyclic alternating pattern (CAP) is likely a more revealing sleep-disorder marker in your challenging case... Hang in there!

[robysue]

-SWS,

Thanks for the link and the suggestion about Avram Gold, MD. I'll follow up on the link when I have a chance. And give serious thought to your idea of a second opinion if/when we ever get to the NYC area.

One question for both you and NotMuffy: What the heck is cyclic alternating pattern (CAP) in language a mere mathematician can understand?

And also a big thanks to you for all the thoughtful comments you've made in my threads these last six months as well.