I've been using CPAP/BiPAP for over three years now. I was not one of those people who had instant results. Far from it. The short version? The first three months of PAPing was hell for me. I felt about 100 to 1000 times worse on PAP than I did before I started PAP. The next three months of PAPing were purgatory. The downward spiral at least stopped spiraling downward, but things didn't seem to be improving much either. But towards the end of the first six months of PAPing, the phrase Woke up with no hand or foot pain this morning
began to appear on a regular basis in my sleep journal. That was the first sign that PAPing was doing something positive for me.
Here's the long version of my story:
Pre-diagnosis: How I was feeling and what my symptoms were (and what they weren't)
In August 2010 I was diagnosed with moderate sleep apnea. I was just past my 53rd birthday. (My diagnostic AHI = 23.3, with the bulk of the score being made up of "hypopneas with arousal" scored under the AASM Alternative Standard.)
Prior to my official OSA diagnosis I had no problems with daytime sleepiness. I described the subjective quality of my sleep as "ok, but not good." (It had been genuinely good when I was in my 30s and early 40s.) ln the morning I would wake up with a lot of pain in my hands and feet. On the worst mornings, I'd tell hubby that it felt like I'd slept with my hands and feet in fists all night. The pain had been written off as "minor arthritis" by my PCP, and since it got better as the day progressed, I didn't really spend too much time dwelling on it. I suffered chronic headaches, but I'd suffered from chronic headaches from the time I was a child. My headaches did not resemble the classic OSA headache. Or rather: The OSA part of my chronic headaches was well masked by all the other types of headaches that I suffer from. I did have a lot of daytime fatigue. The fatigue had been ascribed to menopause and not getting enough sleep on a nightly basis: Bedtime was typically around 11 or 11:30, but it would take me 30-45 minutes (sometimes an hour) to get to sleep, and the alarm would go off around 6:30 or 7:00. I'd sleep in on weekends.
Sometime in my late 40s, hubby began noticing that I would stop breathing for "alarmingly long periods of time" in my sleep. He nagged me for a few years to get a sleep test before I finally consented to in August 2010.
Diagnosis and Buying the Machine: How I avoided getting stuck with a brick
I met with the sleep doctor in August 2010 after the diagnostic sleep study and expressed my concerns about CPAP therapy and my desire for a full data machine. The sleep doctor blew me off and told me, "You don't need a full data machine because you'll feel better in two weeks." I went ahead and scheduled the titration study for 8/29/2010.
Shortly after the titration study, the sleep doc's office started calling daily
wanting me to authorize them to fax my prescription to the DME next door to their office---a DME that I'd already rejected because they were intending on setting me up with a brick that would record nothing but usage data. It got so bad that I had hubby call them and tell them that if they called me one more time that I would fire the damn doctor and take my business elsewhere or some such thing. That got the doc's harassing phone calls to stop.
Meanwhile I was phoning my insurance company and interviewing DMEs with information that I'd learned from two other CPAP forurms. (I had not discovered this one way back then.) I eventually found a small DME that specialized in CPAP equipment that set all their new customers up with the customer's choice of a Resmed S9 AutoSet or a PR System One Auto (Series 50). I found out they worked with my insurance, and I told them to order the S9 AutoSet, contacted the doc's office to have them fax over the prescription, and set up the appointment to pick up my machine.
Oct-Dec 2010: My first three months of PAPing were Hell
I picked up my S9 AutoSet and started my CPAP adventure on September 23, 2010. My brand new S9 AutSet was set to straight CPAP mode at 9cm of pressure (as per my prescription) with EPR = 3 and a ramp of 45 minutes.
And that first night I had one of the worst night's sleep that I've ever had in my entire life. And it got worse during the first two weeks. By the end of the first two weeks, I was having an incredibly hard time just facing the idea of going to bed each night. And I was starting to delay going to bed as long as possible in hopes that I'd be able to fall asleep quicker with the damn mask on my nose. And it wasn't working.
And I was waking up multiple times during the night with severe aerophagia. As in it felt like I'd swallowed a basketball. It looked like I'd swallowed a basketball too. My stomach was visibly distended and rock hard on many mornings. I was in tears much of the time and highly emotional. I was physically exhausted and emotionally exhausted. I was craving sleep and falling asleep at my desk. I was frightened of falling asleep while driving for the first time in my life and I started relying on my husband to drive me to and from work. (I'm a tenured math professor at a SUNY college.) People at school started asking me what the hell was wrong with me because of the deep dark circles around my eyes and the fact that I was obviously no longer functioning very well in terms of committee work (I resigned as the chair of one department committee that semester) and I could not keep up with my grading that semester. In short, I had become a walking zombie within two weeks of starting CPAP.
And yet as tired and as sleepy as I was during the daytime, as soon as I put the damn mask on at night and turned the machine on, I was instantly woken up with severe discomfort to the point where I simply could not relax enough to fall asleep in a timely fashion. And the longer I lay there with the mask on, the more the sensory stimuli coming from the machine would disturb me and wake me up.
Hubby took things into his own hands and called the sleep doc about two weeks into this ordeal (and about 2 or 3 weeks before my first follow up appointment was scheduled). He insisted that I be seen by somebody and that I be seen by somebody within a day or two. At the meeting with the PA (I never did see the sleep doc again), the PA dutifully listened to all my complaints and concerns and even took the ten page hand written list
of them for her files. She then suggested switching me to APAP for a two week autotitration. (and she was surprised to find out that I had an APAP and the DME would only have to change the settings.)
The switch to APAP was with the machine running wide open---as in 4-20 cm with EPR still set to 3. It took the edge off the aerophagia, but did not end it. At least now the stomach was no longer visibly distended every single morning. I was still having severe problems getting to sleep every night and I still dreaded bedtime. At the end of the titration period, hubby and I returned to see the PA. The PA tried to get me to take sleeping pills, but I was unwilling to do so. (There is a family history of addictive behavior and substance abuse.) The PA agreed to switch me permanently to APAP with a 4-8 cm range. And a follow up in late November was scheduled.
Both before and after the post-titration visit with the PA, in October the CPAP-induced bedtime insomnia was growing out of control. But once I'd finally get to sleep, I'd usually manage to stay asleep for several hours. Hubby found it difficult to wake me up in the morning, and so my sleep schedule started to drift further and further out of whack with what it needed to be. I was finding myself unable to get to sleep until after 3 or 4 am much of the time. Hubby was allowing me to sleep until 9 or 10 when my teaching schedule allowed me to sleep that late. But even so, I was falling asleep on my feet at this point as in literally falling asleep in micronaps while teaching math classes. I was still afraid to drive and I was finding it harder and harder to keep up with the grading for the classes I was teaching.
Throughout November, my daytime functioning was still terrible---particularly compared to my pre-CPAP days. I still looked and felt terrible. Aerophagia was still an on going problem, but at least was not at the level of severity of the "basketball in the stomach" it had been in the first two weeks of PAPing. In the November appointment, the PA admitted that she was running out of ideas on what to suggest since my leaks were non-existent. She and the sleep doc finally talked about my case at some point and they decided to recommend a bilevel titration study. The bilevel titration study was scheduled for Tuesday night before Thanksgiving.
That study was interesting to say the least. I thought I slept about 4 hours out of the 7 hour sleep study period. When the data came back, it showed I'd slept for just under 2 hours.
WOW. The insomnia was worse that even I thought it was. But (and it is an important but) lying in bed with the bipap blowing air down my throat was much less uncomfortable than lying in my own bed every night with the S9 blowing air down my throat was.
So December was spent researching bi-level machines (the Resmed S9 VPAP was NOT yet on the market and it was unknown when it would become available) and ordering the PR System One BiPAP I now use. And the insomnia continued to grow worse.
But I continued to do serious thinking about the data off that bi-level titration study. I simply could not ignore the implications of the study saying I'd slept 111 minutes
when I'd truly thought I'd slept for about four hours. I was finally able to acknowledge that the CPAP-induced insomnia beast was larger than I could conquer on my own.
Jan-March 2011: My next three months of PAPing were Purgatory
On Dec. 31 I and the PA met to review the first week with the BiPAP and also to talk about the insomnia. We jointly designed a largely cognitive behavior therapy for insomnia program designed to rein in the CPAP-induced insomnia. I also agreed to take sleeping pills on an as needed basis to prevent too many sleepless nights from happening in a row.
And so the New Year started with a declaration of war on the Insomnia. The First War on Insomnia was largely waged with sleep restriction, a sleep log, a rigid wake up time, and a bed time that was set as the later of (1:30 am OR "when you first get sleepy").
At the same time, I was also fighting the First War on Migraines. In retrospect it's become clear that some of the extreme sensory overload I felt from the CPAP during Fall 2010 was aggravating my migraines in a serious fashion and there was a serious "positive feedback loop" going on that was adversely affecting things by making my migraines much worse during that time frame.
During the first three months of the First War on Insomnia, my daytime functioning started to stabilize. I wasn't feeling much better than I had been feeling in December. But at least I was no longer feeling any worse. And that was an accomplishment: The downward spiral had finally been stopped and I could finally start to recover.
During January aerophagia continued to be a problem. Another titration study in February 2011 and another pressure adjustment (to my current tight BiPAP Auto range: Max IPAP = 8cm , min EPAP = 4cm) finally took care of the aerophagia problems.
The sleep restriction during the first three months of the War on Insomnia really helped to consolidate my sleep cycles. I began to remember fewer wakes. And more importantly, I began to remember less discomfort during the night at those wakes. And the latency to sleep began to shorten dramatically, which increased my comfort sleeping with the machine even more.
Still, there was a lot of "two steps forward, one step backwards" progress during this time frame. The War on Migraines was being waged with antiepileptic medication and I was finding the side effects intolerable. And as the side effects of each antieplieptic med grew to be intolerable, it halted progress in the War on Insomnia. And when the War on Insomnia was going badly, then sleeping with the CPAP would also become problematic. It was all tied together. *sigh*
But the general trend was in the right direction. And the sleep log was the check on reality. And about 2 months into the War on Insomnia (and 5 months into PAPing) a phrase started to appear in the sleep log now and then: Woke up with no hand and foot pain this morning.
By 3 months into the War on Insomnia and 6 months into PAPing, that phrase was occurring on a regular basis. On more mornings than not, I was writing: Woke up with no hand and foot pain this morning
. That was the very first sign that PAP was doing anything positive for me at all.
When I asked the PA about it at the next appointment, she said that her best guess was that the hand and foot pain had been caused by OSA-related inflammation. And that with six months of PAPing, my body had finally managed to heal enough where the inflammation levels had been reduced so the hand and foot pain were no longer present.
My own theory is that inflammation is part of the story. And that part of the story is that the OSA-related arousals were pumping a lot of cortisol and other stress related hormones through my system. And that I actually was sleeping with my hands and feet in fists much of the night---as in my body was preparing to "fight" whatever enemy there was that was threatening it.
April-September 2011: My second six months of PAPing were a slow recovery to normality
During this time frame the War on Insomnia and the War on Migraines continued. Both eventually are "won" in the sense of reining in the monsters (although neither monster is completely defeated.) By June, I wound up switching sleep docs and by the end of the summer I also was engaged in a War on TMJ problems which had been largely ignored for too long and which also had some serious implications in just how badly I was sleeping during my early CPAP adjustment period.
As the Insomnia and the Migraines were brought under control, my mood lightened considerably. My energy levels slowly started to improve, and by my 1 year CPAP anniversary I was actually starting to feel better
than I had felt pre-CPAP in terms of daytime functioning. On my best days I was feeling like I'd felt back in my early 40s. On my worst days I was feeling no worse than I'd felt in my late 40s---and much, much better than I'd felt in the hellish days right after starting CPAP.
It's now November 2013. Things have been up and down since my first CPAP anniversary. It's not the CPAP and it's not the OSA. It's just that I have a number of other chronic conditions that have more affect on my daily life than I want to admit.
Since November 2012, I've been battling a nasty tangle of chronic headaches, tmj problems, and insomnia (again). And, as always, whenever the Insomnia monster raises his ugly head, the aerophagia monster seems to come around again as well.
The discomfort of lying in bed with my mask on waiting for sleep to come is significant. And that's the one thing that I really still miss from my pre-CPAP days: I used to lie in bed daydreaming for hours if I could not get to sleep and it never bothered me. And now I can't because I get a serious stomach ache from the air that gets into my stomach. Or my eyes start to hurt from the air that gets blown into them through my tear ducts. Or the back my throat starts to tickle from the air being blown down it. In order to make this crazy therapy work, I have to fall asleep within about 10-15 minutes of putting my mask on. And that's tough to do without the Ambien on a lot of nights. I really wish I didn't have to take the Ambien.
But still: With BiPAP I wake up with no hand and foot pain on almost every morning. I like the fact that I no longer kick and thrash around the bed as much as I used to. Hubby likes the fact that he no longer wakes up wondering if I'm going to start breathing again.
And when my migraines, tmj pain, and tension headaches are all under control, I feel like I did back in my 40's, and that's a positive. And I know that I can't blame my migraines, tmj pain, and tension headaches on the damn BiPAP machine. Much as I hate the BiPAP's presence in my life (and I do still hate how it crimps my lifestyle), I also like what it does in terms of reducing pain.