glennotf, i8chillywilly, NancyP, and sakura:
I have been working exceptionally hard to make CPAP work for me for the last six months. I have used my machines (first an APAP and now a BiPAP) every single night, all night long right from the start. And I've had an exceptionally hard adjustment period; the tale of this adjustment period is included at the end of this post. And why have I worn the mask each and every night even though for a very long time I know I would have slept much better and more soundly without the mask? Because I knew in my heart of hearts that consciously going to sleep without the mask even once would make it that much more difficult to mask up the next night. And the night after that and the night after that ...
I also want to encourage ALL
of you to NOT give up: OSA is an insidious disease that slowly, but surely eats away at our health. I say this as someone who was largely asymptomatic when I was diagnosed with moderate apnea in August 2010 and who even now cannot say I feel and function better than I did pre-CPAP on every single day. Some days, yes. Many days, no. But I have no doubt whatsoever that if I'd left my apnea untreated, it would only have been a matter of time before the damage it was causing my body on a nightly basis would have started to manifest itself in daytime symptoms.
So why have I stuck with making myself adjust to this therapy that was literally ruining my life last fall? My family medical history includes many, many comorbidities of OSA, including high blood pressure, stroke, heart disease, and type two diabetes. I have no desire to live with any more risk of these diseases than I already deal with. And I know that with hard work, this therapy will EVENTUALLY work for me. If I put enough time and effort into making it work.
And here is the story of my seven month journey into the world of OSA and my six months with xPAP therapy:
On August 1, 2010 I was diagnosed with moderate sleep apnea by a PSG. Since then it's been quite a ride:
August: After I got the diagnosis, a meeting with the sleep doctor was scheduled in mid-to-late August. I started reading about CPAP machines and the necessity of getting a machine with full efficacy data. At my one and only meeting with the sleep doctor, he assured me that I did not need a full data machine and that I would be feeling better in a couple of weeks. Mind you, I was NOT feeling particularly bad at the time I was diagnosed. I tried to raise concerns about potential adjustment issues and was brushed off. I declined to approve sending my still-to-be-determined prescription to the DME next door to the sleep doctor's office immediately following the titration study set for September 1. I suspected the doctor had some kind of financial interest in that DME and I did not trust that I would get a machine with full efficacy data.
September: Titration study done on Sept. 1. And I received my Resmed S9 AutoSet after three weeks of investigating DMEs and numerous calls to both my insurance company and to DMEs that insisted I'd need a special prescription for a machine with efficacy data. Took delivery of the S9 AutoSet on September 23. I was first titrated at 9cm and I could not tolerate it because of aerophagia, air-in-eyes-through-tear-ducts, general sensory overload, and the start of insomnia. And I experienced a major crash & burn as far as daytime functioning was concerned. I 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 autotitration using the S9 AutoSet at home. 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 four sleep tests, two xPAP machines, four different prescribed pressure settings, eight face-to-face appointments with the PA (with another scheduled for Monday), and numerous phone calls between those visits later, how am I doing?
My body finally seems to be more-or-less adjusted to sleeping with the BiPAP; masking up no longer causes me to become WIDE AWAKE. I never had issues with pulling the mask off my face. And now I've learned not to dread bedtime as much as I did back in the fall. And I've got working strategies to deal with the exhaust jet from the Swift FX that chapped my lips so severely back in January. I've even noticed a few subtle changes in how my body feels when I wake up now:
I no longer wake up with minor joint pain in multiple joints every morning. Most of my joints remain pain free throughout the day.
I often wake up without a headache now. But I still have morning headaches on a significant fraction of mornings---probably as many as 30--50% of the mornings I still have a headache. The character of the headaches has not changed very much. And they are not a huge problem (never were really) since on most mornings, the headache is mild. When I do have a headache, it sometimes disappears faster than they used to pre-CPAP.
I seem to much less restless in my sleep---provided the insomnia monster doesn't show up. (And the insomnia monster is slowly being tamed.) Pre-CPAP I rarely woke up in the same position that I went to sleep. This is pretty common now. And I've learned how to get comfortable before falling asleep so that I don't wake up with a stiff neck.
The CBT work on insomnia management is beginning to show benefits. For the first time in my life I can go to bed and often be asleep within 10 or 15 minutes. I'm still waking up multiple times every night, but many times I can get back to sleep in a timely fashion. I've not had a serious meltdown re the insomnia in almost 3 weeks. I am now usually getting at least two hours of uninterrupted sleep between the awakenings. Anxiousness and mind racing during the awakenings still remain a problem, but my body seems much more able to tell the brain to "shut up and go back to sleep" than it ever did pre-CPAP and before the CBT work. But I am still getting a total of only 4 1/2 to 5 1/2 hours of sleep a night with a restricted 6 hour "in bed" window. In spite of that limited time in bed window, however, I am now occasionally waking up feeling "almost refreshed" and often I wake up feeling "decent". Occasionally I wake up just a minute or two before the alarm goes off---ready to get out of bed and face the new day.
Switching the the BiPAP helped address the aerophagia and other pressure-related issues. But notably the theme of aerophagia kept running through my first insomnia log like a broken record; hence the four sleep study---which was a second bi-level titration study. I've only been using the new, lower pressure settings for less than a week. But the resulting drop in pressure has helped helped my stomach and the number of awakenings due to stomach discomfort has decreased.
The long term AHI numbers for both my former Resmed S9 AutoSet and my current PR System One BiPAP Auto look remarkably similar: The vast majority of nights the AHI is below 1.5, with most of them clustering between 0.5 and 1.0. The occasional odd bad night has an AHI more in the 2.5 to 4.5. But there's only been one night (Halloween) that had an AHI higher than 5.0. The long term "average AHI" for the two machines is also pretty close: In the roughly 90 days I used the S9, the overall average AHI was 0.9, with AI = 0.6 and HI = 0.3. In the roughly 50 days I've used the System One, the average AHI is 1.3, with AI = 0.9 and HI = 0.4. So with there's plenty of evidence that xPAP does an excellent job in controlling my apnea episodes.
I have slowly recovered from the severe crash and burn
that I suffered through from shortly after I started CPAP on September 23 through late December. Throughout the fall I was a dysfunctional walking zombie by day. In spite of "sleeping" 6, 7, or 8 hours or more with the mask on every night, the daytime exhaustion and the daytime sleepiness were beyond anything I'd ever felt in my life. I looked horrible and colleagues kept asking me what was wrong and how my health was. I had to resign from committees at work, beg off additional assignments from my chair, and did a pretty miserable job of teaching my college level mathematics classes in the Fall 2010 semester. Not only did I not manage to learn any of my students' names, but grading was a constant challenge for the whole semester. I missed turning in grades for one class---had to fill out a change of grade form for each and every student---because I simply could not find the strength, energy, and mental capacity to get the final exams graded in time to figure out the semester grades. Fortunately there were less than 20 students in the class. So the paperwork for the department secretary was not too great. I spent a significant chunk of my winter break working extremely hard on starting the battle with the insomnia and making significant mental steps towards genuinely accepting the BiPAP machine as a positive force in my life rather than "a positive force that has also invited an insomnia monster into my bedroom with its own invasion of my personal space." By the time my classes started in late January, I no longer was consistently feeling like a hairball upchucked by a cat every single day.
Six months into therapy, 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.] My 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 I've finally gotten brave enough to add nasal irrigation with a NeilMed Sinus Rinse bottle, which is close kin to the neti pot, to my nightly bedtime routine.
Physically how I feel each day now 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 have started to 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.
Micronaps (which were never a problem pre-CPAP) continue to plague me. On most days I now have some semblance of real functioning and alertness for 5 to 7 hours. Some days I even have a bit more. Teaching has returned to being fun instead of the horrid chore it had become last fall, but grading remains problematic. And along with the micronaps I still have real problems with functioning in the late afternoon and through the evening. But then I "wake up" and become more alert sometime between 10:30 and 11:30 usually. By my PA-dictated bedtime of 1:30AM, I am usually physically very tired, but I am not always mentally sleepy. And when I get sleepy, it happens rapidly with a tendency to trigger some rather bizzare micronapping that is much more disturbing than it is restful.
I am still afraid of falling asleep at the wheel---a problem that first raised its ugly head by the end of September--about a week into CPAP therapy.
And I still don't feel all there cognitively yet either. Pre-CPAP I had an excellent memory both for the day-to-day things and for long term memories. I had an excellent head for details and could manage even though my organizational skills leave something to be desired. I spent all of last fall in a mental fog of the sort that I'd never experienced before. Simply could not keep track of anything---even if I did write it down. While some of my memory is slowly coming back, I feel as though I've lost three months of my life since I remember almost nothing except the pain of trying to live with the CPAP/APAP/BiPAP last fall. Today I still draw blanks when I'm looking for a specific word. My none-too-great spelling has deteriorated at an alarming rate. And I don't always pick up on the things going on around me. I'm very easily distracted and have trouble concentrating.
So all in all, while my body
is beginning to notice some subtle changes, my overall energy and daytime functioning still is below what it was last summer. And my sleep remains fragile at this point---I know that if I bend the sleep restriction and sleep hygiene rules too much, I'm feeding the insomnia monster---that shows up in my insomnia log quite clearly. But it is getting better
---slowly but surely---now that I'm doing the work I must do to tame that insomnia monster that showed up on Night 3 of CPAP therapy and that has been plaguing me ever since.
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 the hose 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
Caffeine after 10AM. I mainly miss my unsweetened iced tea at lunch. But both hubby's family and mine are prone to "coffee after dinner" which is hard to turn down when we're visiting.
Late dinners with my hubby---as in as late as 9:00 pm. And large dinners. If I eat much of anything after about 8:00, I run a much higher risk of aerophagia that night.
The sense of feeling like I'm genuinely healthy.
Best of luck to each of you on your own journey in dealing with this disease. And remember that every journey truly does begin with a single step. And this one begins with the decision each night to put the mask on your nose.