Jade,
First let me introduce myself: I'm robysue and I've been posting here at cpaptalk since either August or September 2010 when I was first diagnosed with moderate OSA and started CPAP on September 23, 2010. In reading your post, I found many, many statements that I closely identify with. And so, I'm writing this lengthy post primarily because you write towards the end of your post:
Further, I may find someone who has successfully faced this hurdle and shares their story with me.
I won't claim that I'm the "someone who has successfully faced this hurdle", but I do see many similarities in our stories and I am now
almost at the point where I am consistently seeing
positives in my daily quality of life that exceed the
negatives that CPAP created for so many, many months after starting therapy.
Of course, it will be up to you to decide whether my story really is similar enough to yours and whether my current level of "success" genuinely counts as success using your definition of success.
So I hope you have the patience to read through this response and possibly some of the more links to some of the more important chapters in my story. Feel free to PM me with any questions you might have about my story. Or post a response and I'll respond.
First, to fill in where your statements about your history do and don't tend to correspond rather closely to my own story of xPAP:
Jade wrote:
About me
- I’m a woman in my 40s and healthy, though about 40 pounds overweight. I do not have problems with nasal congestion or my sinuses. I’m an active person, very intelligent, have some sensitivities of a sensory nature, and when stressed can tend towards anxious.
RobySue's response: I'm in my 50's and NOT overweight. I do have problem with seasonal allergies, but breathe through my nose consistently. I too am "an active person, very intelligent, have some sensitivities of a sensory nature, and when stressed can tend towards anxious." Being highly sensitive to sensory stimuli has been a HUGE issue for me in my long on-going work on making xPAP work for me. And I strongly suggest that "highly sensitive people" have much more difficulty in adjusting to CPAP than less sensitive folks.
- It was somewhat of a fluke that got me the diagnosis in the first place; in retrospect, there are only two “symptoms” I can tentatively connect to OSA: 1) generalized pain—I experience aches and soreness a little too frequently and strongly for what I would expect from activity/exertion, 2) I’m a light sleeper and a somewhat restless one.
RobySue's response: Only reason I had the sleep study done was hubby reported that I sometimes stopped breathing in my sleep---as in a couple of times a WEEK (not every night). I do snore "softly" on many nights, but rarely is it loud or obnoxious. Like you, I had some generalized pain before CPAP---the pain was mainly concentrated in my hands and feet. It had been diagnosed as "minor arthritis" and in the case of my feet, there was some evidence as confirmed by x-rays. I'm a somewhat light sleeper, but not excessively light. Restless sleeper? Pre-cpap, definitely. Now? Well, I've started to begin to move around comfortably in my sleep with the mask and so I'm no longer waking up in exactly the same position I fell asleep, as was happening during some of the worst part of my adjustment period. The current moving around seems to be useful in that I wake up with fewer problems with stiffness than I had been having when I wasn't moving at all in my sleep
- I rate myself as negative for daytime sleepiness, naps, headaches, nocturia, concentration or memory issues, feeling tired or fatigued during the day. Epworth scale=2.
RobySue's response: Pre-CPAP I had little or no daytime sleepiness, rarely took naps unless I was trying to nip a migraine, had absolutely no problems with nocturia, concentration or memory issues. My Epworth score was somewhere around a 4 I think. At it's worst with CPAP, it got well into the mid-to-high teens. At my last visit with the sleep doctor it was about an 11 if I recall correctly. I did have some fatigue/tiredness issues---mainly focusing around my low-grade hand/foot pain and my chronic, almost daily headaches: Headaches that did not fit the typical OSA sterotype in part because they'd get WORSE as the day wore on instead of better. Moreover, the headaches hurt in specific ways consistent with migraines, TMJD headaches, sinus headaches, and tension headaches, and often involved a combination of more than one of them.
Sleep study #1 and results
- My first sleep study (over 2 years ago) showed hypopneas only, but with an AHI of 60 or 70-something. Minimal oxygen desats. They could not get a titration that night so I took home a prescription for an APAP.
RobySue's response: On my diagnostic study, I slept for a total of about 4 hours. I had something like 85 total respiratory events. 14 of them were apneas; the other 70+ were "hypopneas with arousal"---hypopneas scored under the Alternative scoring. Indeed, my current sleep doctor has told me that under Medicare guidelines, I would NOT have been diagnosed with OSA because my Medicare AHI was only 3.9; but under the Alternative scoring of hypopneas, my AHI soars to 23.4---well into the Moderate Apnea range. I've gone through not one, but three different titration studies in the lab: First with straight CPAP and two with BiPAP. I've also done a week's worth of APAP, then was switched to APAP, and later switched to straight BiPAP, and in March I was switched to BiPAP Auto running in a narrow range.
- From the very first night, I found the mask (nasal pillows) comfortable enough to wear all night long. Experimentation showed I slept better with constant pressure, and I found settings that allowed me to achieve really good numbers for hours of use per night, leak rate, and AHI. This remained true for all my cpap use.
RobySue's response: All this is true for me---except that I seem to do better with very tight APAP ranges.
- Over the next 3+ months, however, my daytime functioning and sense of wellbeing deteriorated to the extent that my quality of life was suffering too much to tolerate any longer. I discontinued use of cpap while I considered my dr’s recommendation for another sleep study.
RobySue's response: My daytime functioning and sense of wellbeing plummeted during the first 2 weeks and only slowly started to recover in bits and pieces after being on xPAP for 5 months. And then tree pollen started and the little progress I'd made started sliding backwards. Things remained very touch and go for another two or two and a half months. But finally during the month of June, things have finally started to improve and I am now back up to functioning as well as I was last summer before CPAP on most days. And a bit better on some days. And still much worse on some days. But the frequency of the bad days is declining. And I now hope that I'll be through the woods by the end of the summer and that I'll start my fall semester fully functional and possibly actually feeling better on many days than I did pre-CPAP.
Sleep Study #2 and results
- I eventually did undertake a second sleep study. The main findings were: the pressure I had already figured out was confirmed, no other comorbidities (such as restless leg syndrome) were found, and alpha intrusions were noted.
- Again, I used cpap and met or exceeded all measurements tracked. Again, I started to experience noticeably and measurable steady deterioration over time, as evidenced by increases in: daytime sleepiness, headaches, irritability, difficulty with concentration and memory, lightheadedness, physical agitation, and periods of extreme lethargy/fatigue.
RobySue's response: As stated before, I had a severe crash-and-burn right after starting CPAP. What you describe here could easily have been written by me in October or November 2010. And these symptoms started to wane a bit in February as I started to make real progress on taming my insomnia monster. But they began to return with vengence in March--May 2011 with the return of my spring allergies.
- My dr requested I wear an actiwatch to track my activity levels and provide a double-check on my quality/quantity of sleep reports. There were no signs of concern or perceived need for psychological intervention.
RobySue's response: Alas, while my husband and OTHER doctor's have seen no concern or need for psychological intervention, the PAs in my original sleep doctor's office started to try to push me into believing that my problems adapting to xPAP DID have psychological roots. Their evidence? The fact that the neurologist who started treating my chronic migraines when I was about four months into xPAP therapy prescribed medication that is often used for seizures but also can be used for mood stabelization in certain disorders. Oh---and also add in the fact that I had the audacity to ask about the existence of patient support groups which the the fliers in the doc's office advertised, but did NOT exist.
- The breaking point came when I double-charged one client and made a couple of scheduling errors with other clients. Becoming incompetent at work is not an acceptable outcome. I stopped using the cpap after about 3 months.
RobySue's response: I'm a college professor. During the darkest days, I had to resign from multiple committees I was on for the department; fell extremely far behind in my grading, and actually missed the deadline for submitting grades for more than one class. This meant that I then had to file individual change of grade forms for each of my students. At my worst, I was unable to learn any of my students' names and could not even reliably identify them as my students if I saw them on campus. Truly pitiful.
- My doctor had no further ideas or suggestions at my final appointment. I was told I could play around with my settings, just continue to use the machine anyway, quit using cpap, explore other treatments, or seek out another sleep dr.
RobySue's response: Sounds a lot like my last meeting with the two PA's in my previous sleep doctor's office. Except yours sounds like it did not deteriorate into the mess that mine did.
And now to respond as a whole to what you write as:
Conclusion (so far) & Misc Details
- Based on discussion with my dr and my own research, my OSA is more of a UARS-kind.
- In my perception, there were only two areas where cpap may have been at least a possible or partial positive experience: it seemed to help somewhat with my mild-moderate pain levels, and it was actually rather soothing to fall asleep with.
- I estimate that I slept about the same amount each night, whether or not I’m using cpap. I do wake up on average more often when using cpap, but almost all of the time am able to fall back asleep quickly and easily.
- I have experienced some intermittent, mild/moderate sleep maintenance insomnia both during period of cpap use and not use. My sleep hygiene and response to insomnia is pretty darn good.
- I believe I had a competent sleep dr. I think I was probably titrated correctly. It seems that there were/are no confounding factors that can be easily and/or currently identified and effectively responded to.
- My primary focus is how I feel and function during the day. I tracked a bunch of things for my dr, but measures such as total sleep time, number and durations of wake-ups, and so on are of interest to me only to the extent they can shed light on how I can use cpap without negative impact on daytime functioning.
I’m not without hope; I take comfort from several facts. Untreated OSA is not quite the sentence of automatic disability-and-death-soon that some depict. I’ve read a bunch of the studies and considered potential flaws and unaccounted for relevant factors in their protocols. I am not saying that OSA does not present a danger. If you find my message too nuanced, please do click away to something else.
Further, I may find someone who has successfully faced this hurdle and shares their story with me. I may find a doctor – on my own or through a referral – who has successfully helped a patient deal with a similar circumstance. And, while I would not consider surgery or an OSA dental appliance, I would consider consulting with an orthodontist with the experience to evaluate me for the use of braces to create a larger mouth, aka palatal, or maxillary, expansion. (However, I don’t know if the hypopneas are caused by my tongue or throat tissues, and I don’t know if that even matters.)
I offer you my story as something that may provide you with some hope that you can eventually make CPAP work for you, if not now, then in the years to come if/when your OSA starts to get worse and you do either begin to develop symptoms or need to worry more carefully about potential health risks of your untreated anpea.
First---concerning UARS vs. OSA: Neither sleep doc has mentioned anything about UARS to me. But several posters (including NotMuffy) have told me that my OSA may well have UARS-type characteristics. When reading the UARS-symptoms, I can identify much more with them than the standard list of OSA symptoms. I do think that UARS and OSA may well be a continuum and that I was diagnosed not long after my problems started to change from UARS proper to OSA because the RERAs had lengthened and deepened enough to become full-fledged "hypopneas with arousal" under the Alternative scoring rubric. So we have this in common. And I do think that folks who have little or no daytime stymptoms of OSA have more problems adjusting to CPAP.
Since September 23, I have NOT slept a full night sans xPAP for fear that if I managed to wake up feeling "normal" I'd never be able to force myself to use the hose again. And mentioned earlier, I wound up experiencing a severe crash and burn immediately after starting xPAP, and only now, some 9 months into therapy am I beginning to feel as good or better than I did pre-CPAP.
You bring up the idea of a
How I Feel log focusing on how well you feel and function during the day. At the urging of several posters who have been following my story since the start, I finally created my own log for rating how
I felt about my daytime functioning and how
I felt about how I felt physically each day. The variables were the things that were important to me: Headache and vertigo severity, aerophagia, my lips---which routinely wind up severely chapped from the Bi-PAP, my allergies, my overall energy level, micronapping at inapproriate times, and concentration -- brain fog problems that first appeared after I started xPAP therapy. In retrospect, this is something that I wish that I'd started long, long ago. It might well have made some of my most difficult dark days a bit easier to bear. Or not.
I also keep an insomnia log which measures the total sleep time, number of wakes (I don't bother with individual durations), an OSA/CPAP data---AHI, which tracks the clustering of events, leak data, etc., and a daily headache log for the migraines. Each log is on its own page. And I do my best to fill out the How I Feel log as independantly of the other logs as I can. The insomnia log, of course is filled out each morning. I can use Encore Viewer and SleepyHead to fill out the OSA/CPAP data log on an intermittent basis---I'd like to do it once a week, but in practice, I tend to do it less frequently than that, although I look at the data in Encore or SleepyHead every morning at least briefly. The headache and How I Feel logs are filled out typically at bedtime. I've only recently gotten enough data (about a month's worth) on the "How I feel" page to start trying to make meaningful connections between the four logs. But a couple of things have emerged that back up the intuition I've had for some time about what's important and what's not for my daytime functioning:
- If both the CPAP data AND the Insomnia data are good to excellent, I stand a very good chance of having a GOOD day, even an EXCELLENT day in terms of How I Feel. Headaches and allergies can be problematic, of course, but even if they cause problems, it's usually a pretty decent day over all.
- If either the CPAP data OR the insomnia data is good and the other is just "ok", I'll likely have a DECENT day---as long as the headaches or allergies aren't a problem. If headaches or allergies are problematic, that will reduce the quality of How I Feel, possibly substantially.
- If either the CPAP data OR the insomnia data is exceptionally good and the other is pretty bad, I'll usually have a day that I can function, but sometimes it's not easy.
- If both the CPAP data AND the Insomnia data are worse than average, I typically have a lousy day.
And what are all these logs showing in addition to a not-unexpected correlation between How I Feel and a complex relationship between how good/bad the Insomnia, CPAP/OSA, and Headaches interact in my daily life?
Like you, the first (and still MAIN) positive xPAP related experience for me has been a total elimination of the minor arthritis-type pain in my hands and feet. The first time it happened was in February. The pain started to come back intermittently with the beginning of my spring allergies and some serious migraine-related problems---first side affects from depakote and then a return of the migraines when I was weaned off the depakote. But in June, the hand and feet pain again began to ebb with additional attention to the allergies (a prescription for Flonase was critical) and a new vitamin-based approach to dealing with the migraines.
Since the beginning of June, I have also noticed that I am once again feeling "almost refreshed" or even "genuinely refreshed" when I wake up in the morning. This is the first time since September that I've woken up on a consistent basis feeling better upon waking than when I went to sleep. On an average day, I'm now back up to feeling about as good/bad/indifferent as I did on an average day pre-CPAP last summer. On the good days, which seem to be increasing in number, I feel as refreshed as I used to wake up years ago in my 30s and early 40s before the arthritis pain started. And now these two things---the lack of hand/foot pain and the re-emergence of that elusive feeling of waking in refreshed have become a major incentives for me to continue to iron out the remaining issues I have with xPAP each night. I can see arriving at a place where these two changes alone will eventually outweigh the continuing negative impacts of xPAP on my daily life---once those remaining issues are finally addressed.
You say that
- I estimate that I slept about the same amount each night, whether or not I’m using cpap. I do wake up on average more often when using cpap, but almost all of the time am able to fall back asleep quickly and easily.
- I have experienced some intermittent, mild/moderate sleep maintenance insomnia both during period of cpap use and not use. My sleep hygiene and response to insomnia is pretty darn good.
Unlike you, the major source of xPAP's negative impact on my life for the last 9 months has been the CPAP-induced insomnia first triggered by the severe sensory overload I endured every night as I tried to sleep with the machine in the early going. And alas, I now know far too much about CPAP and Insomnia and the insidious way that Insomnia undermines the ability to feel the benefits of CPAP and how using a CPAP undermines the efforts to control the insomnia.
When compared to my pre-CPAP sleep habits, I can say that initially, the very act of trying to sleep with the hose triggered FAR more wakes than I was used to pre-CPAP and it was SIGNIFICANTLY harder for me to fall back to sleep after one of these night time wakes. During thos dark first three or four infinitely long months of xPAP, aerophagia played a significant role in disrupting my sleep. As did the annoying tickle in the back of my throat that would keep me awake for what seemed like hours on some nights. As did air getting into my eyes via my tear ducts. And countless other ways learning to sleep with the hose kept interrupting my already fragile sleep.
The net result of all these individually irritating pieces of sensory overload was to trigger the worst case of insomnia (both bedtime and sleep maintenance) that I have ever experienced in my life. And the severe insomnia in turn triggered severe sleep deprivation with all of its symptoms---including the brain fog with continues to interfere with my daytime functioning on about 1/3 tro 1/2 of the days each week. And notably the first hints that xPAP might be able to do something positive for me and my quality of life only started to appear AFTER I had been doing serious CBT for the insomnia for about 4 to 6 weeks. And feeling "refreshed" upon waking? That didn't start happening until the both the migraines and the allergies were better under control.
To make it all clearer how the CPAP and Insomnia have been entwined in my initial severe and negative physical reactions to starting xPAP therapy and how I have been slowly been making progress towards solving these CPAP sensory-stimuli related problems so that I can feel a benefit to using xPAP in How I Feel each day, here's a rundown of my sleep habits and quality in the relevant time periods:
- Pre-CPAP: I'd typically go to be around 11:30 to 12:30. It would take 30--45 minutes to fall asleep most nights. I'd remember NO wakes during the night on MOST nights. I would move around a fair amount in my sleep. IF there was a change of weather coming OR if the neighbor's A/C was running, I'd frequently wake up due to discomfort or the noise. Sometimes it would take me a while to get back to sleep, but that was mainly on hot, humid nights. We usually didn't run our inefficient a/c except on the hottest nights, whereas the neighbors run their A/C all summer long. The alarm would typically go off at 6:30, but I'd not be able to drag myself out of bed until 7:00 or 7:30.
I'd usually wake up with pain in my hands and feet and often quite stiff. The pain would often lessen during the day unless I overused my hands or feet. I'd be tired during the day a lot of the time, but not excessively so. And I'd rarely be sleepy or take a nap unless I was fighting off a virus or dealing with a migraine.
At my initial meeting with my first sleep doc, he asked me to rate how "refreshed" I typically felt on waking and the quality of my overall sleep. I said that I usually felt more rested than when I went to sleep, but not particularly refreshed because of the hand/feet pain which was always at its WORST in the early AM. I think I rated the quality of my sleep something like a 6.5 or 7 on a 1--10 scale where 1=horrible and 10=great. And the total time asleep on average was about 6 1/2 to 7 hours (minus, of course, all the time lost due to the micro arousals from the hypopneas with arousal that the diagnostic sleep test indicated I was having each night.) I regularly remembered the sensation of dreaming and it was not uncommon for me to remember dreams.
- In the first three or four months on CPAP: I found that I could no longer face going to bed around midnight and lying awake for hours with the machine pumping me full of air like a goose being force fed for foie gras. So my bedtimes became more and more ragged. At one point I tallied up the time I'd gone to bed and turned the machine on during those first few months and found that I'd only gotten to bed before midnight maybe five or six times in three months. And that I'd wound up getting to bed after 3:00 AM for a significant fraction of the nights---as much as 30 or 40% or more of the nights, if I recall correctly.
When i'd finally crawl into bed, I'd be able to drift off into a troubled sleep in about 30 or 40 minutes most nights. A few nights I'd be so sleepy that I'd fall asleep quicker than that. But I couldn't handle lying in bed more than 40 minutes with the CPAP on my nose at the beginning of the night. If I wasn't alseep by the time the 45 minute ramp period was over, I stood a good chance of having a serious emotional breakdown in the middle of the night. Not fun for hubby.
On some nights I'd remember no wakes at all, but on others I was waking up frequently during the night---mainly due to discomfort being triggered by sensory stimuli coming directly from the machine. Noise, pressure, air in my tummy, hose causing problems with me turning over, tickles in the back of my throat, etc., etc., etc.
The alarm was still going off between 6:30 and 7:00, but hubby was not forcing me to get up until 8:30, 9:00, or even 10:00 on days where my class schedule allowed me to sleep that late. I was clocking anywhere from 4--9 hours of mask time each night, with an average of 6--7 hours of mask time each night. But I certainly did not feel like I was getting 6 or 7 hours of sleep each night. On a few nights I'd notice that I'd wake up in exactly the same position I'd fallen asleep---and often my neck would be incredibly stiff in the morning. Overall, the subjective quality of my sleep had plummeted along with my daytime functioning: On the 1--10 scale, during this period I was rating my sleep as around a 2--3.
- After being put on a sleep-restricted schedule AND sleeping with CPAP: On December 30, my PA put me on a sleep restricted schedule as part of CBT to deal with the severe insomnia: The PA impose a six hour time in bed---bedtime was the later of (1:30 AM or when I first became sleepy) and wake up time was fixed at 7:30 AM.
Within the first 4 to 6 weeks of starting this regime, several positive changes started to occur: Latency to sleep dropped from 30--40 trouble minutes to 5--15 minutes on a regular basis. Number of wakes started at 5--7 per night, but started to drop to 3--5 by the end of that first month of CBT for the insomnia. Ability to actually get myself out of bed by 7:30 rather than having to be drug out of bed by hubby started to improve. And the frequency of nighttime meltdowns started to decrease dramatically. Aerophagia was triggering a fair number of the wakes, which in turn led to the third titration study and a decrease in pressure. It was around the end of this period that my hand and foot pain started to disappear. Total sleep time started to stabilize around 5 hours.
As spring allergies and problems with migraine prevention medications started to raise their ugly heads, the progress on the insomnia stalled and started to wax and wane. But notably---latency to sleep remained good on most nights. Number of wakes after sleep eventually dropped to 2--4 on average. But my bedtimes became much more erratic. And the amount of sleep I got each night was strongly correlated with bedtime.
- And now? Well, the new sleep doc wants me focusing on getting the total sleep time back up to 6--7 hours this summer and not worry too much about HOW I do this. She's told me that I've got to work with the fact that I seem to be a natural night owl and to accommodate that as best I can. She'd rather have me be a bit more flexible with my wake up times if that lets me do it. Right now, I've moved my target wake up time to 8:00 AM since bedtime is still often between 2:00 and 2:30. And if I get to bed significantly later than 3:00, I allow myself to sleep in until I've had a full six hour time in bed window when my schedule allows me to do that. These things allow me a six hour window even when I miss my target bedtime of 1:30, and hence the number of nights I get 5 1/2 hours of sleep is beginning to increase again. And on the random nights where I'm sleepy enough to call it a night at 1:30, there's a good chance I'll get close to 6 hours of actual sleep in. Sleep quality has finally started to improve again. And that's made a huge difference for me: My dark and irritable mood is finally starting to lift; I feel more like my old self again; my fog brain is beginning to lift (slowly); and even when I have a bad night or two (either Insomnia-wise or CPAP/OSA-wise), I seem to have both more physical strength and emotional strength to deal with the day instead spending the whole day feeling like a hairball the cat threw up.
In conclusion, nine very long months have passed since I started on xPAP therapy. I still have my problem days---and more of them than I realy feel are "acceptable", but the daily logs make it clear that the really bad days are decreasing in frequency (and severity). And the number of decent and good days are increasing. Moreover, the logs have made it clear that my
best days really are
better than my best pre-CPAP days for the last two to four years.
Equally important, the logs have made it very clear to me that the causes of my continuing
bad days involve a complex relationship between my OSA/CPAP (in terms of AHI and leak rate), the Insomnia (in terms of bedtime, total sleep time, and number of wakes), my Headaches, and my Allergies. In other words, at this point, I can no longer blame the bad days solely or even mainly on "CPAP effects" in my life: Sometimes the CPAP is the main cause of a particularly bad day, but often the main cause is the Insomnia or my Headaches or my Allergies or a bad night for the OSA in spite of the CPAP.
Finally you write:
I believe I had a competent sleep dr. I think I was probably titrated correctly. It seems that there were/are no confounding factors that can be easily and/or currently identified and effectively responded to.
Were you ever able to identify things specific to the xPAP therapy that were particularly troublesome or intolerable? For example, did you have any aerpophagia? Air getting into your eyes either from mask leaks or from your tear ducts? Any annoying tickles in the back of the throat that caused problems with getting to sleep or staying asleep? In short, can you identify the ways the CPAP was causing additional fragmented sleep? Because that's likely the key to figuring out why using CPAP has so negatively affected the all important
How Do I Feel? test of whether CPAP is worth the trouble.
I sincerely wish you well in your search for answers to why CPAP has proved to be so hard to tolerate in terms of its adverse affect on your daily life. I also hope that you find some of what I've written useful to you in figuring out what (if anything) you might be able to try to make CPAP work for you.
robysue
