ems wrote:Robysue... referring to your post I'd like to be sure I understand you - and if not, I would appreciate if you would say so: Of course I got that using your machine every nite is not the end all, be all that you hoped it would be. That papping is just one piece of the puzzle and in fact, your cognitive abilities aren't what they were pre-pap. Do you have a guess as to why? Did I understand you correctly?
I went into PAPing with little hope of "feeling better" during the daytime, because, quite frankly, I wasn't feeling all that bad to begin with. I did NOT have the excessive daytime sleepiness and excessive fatigue and brain fog so many people have. I don't know why I didn't have those problems, but I didn't. And I do remember that as a newbie here it was hard to convince people that I was asymptomatic in that sense.
My PAP adventures started only because hubby was alarmed about the fact that I stopped breathing at night and he thought my snoring was getting worse.
I was fatigued during the daytime: But that had been written off by my doc as menopause and stress.
And I woke up each morning with significant hand and foot pain. On the mornings where the pain was at its worst, I'd tell hubby that it felt like I'd slept with my hands and
feet in fists all night long. The pain would get better as the day progressed, and usually I'd be pretty much pain free by nightfall. I had complained about this hand and foot pain many times (as well as general achyness) to my PCP. He'd run several tests that are designed to tease out whether someone might have lupus or RA; levels of some kind of chemical that indicates there is inflammation going on were very slightly elevated, but no where near what they would be if the problem was lupus or RA. And so this hand and foot pain had been diagnosed as mild arthritis by my doc, and an x-ray of the feet had confirmed that there was some minor arthritis.
I did have a history of chronic headaches, but even my morning headaches did not match the traditional OSA morning headache pattern; they did, however, match the symptomatology of TMJ headaches, and the morning headaches had responded very well to using a night guard: If I wore the guard, I woke up with no TMJ headache; if I didn't wear the guard, I woke up with a TMJ headache.
So I started PAP with little or no expectation that I'd (suddenly) start feeling better during the daytime. My modest hopes for PAP were that it would NOT interfere too much with my life, that I would continue to sleep about as well I was sleeping in terms of going to bed sometime between 11:00 and 1:00, falling asleep within 40-50 minutes or so, and waking up the next morning between 6:30 or 7:30 willing to get out of bed, although not eager to get out of bed. The pre-CPAP long latency to sleep never bothered me: I was going to bed more or less when hubby went to bed and I'd spend the time in some very pleasant day-dreaming curled up next to hubby.
In other words, I understood that needed the PAP because my diagnostic AHI was 23.something or other. And that having an apnea or a hypopnea every three minutes or so (on average) was not good for my health even though I had none of the standard daytime symptoms. In other words, I regarded OSA the same way I would have regarded a diagnosis of high blood pressure and CPAP the way I would have regarded high blood pressure medication: It's a serious diagnosis even if there are no symptoms and you gotta do what you gotta do to manage it.
But what kept and keeps me PAPing was a totally unexpected thing: About four to five months into PAPing the phrase, "Woke up with no hand and foot pain this morning." Apparently that hand and foot pain was my only real daytime symptom of OSA---it's known that OSA can trigger inflammation and it's possible that my body was responding to all the apneas and hypopneas by tightening up my hands and feet into fists each night.
And while I am still fatigued during the daytime some of the time and I still experience far more brain fog than I did pre-CPAP, waking up with no hand and foot pain is a huge plus and affects the overall quality of my life far more than I would have expected.
But the long term sleep disruption that started with PAP is still a huge problem for me. However, sleeping without a PAP is clearly NOT the answer: As those rare PAP-less nights have shown me: Sleeping without the PAP leads to a lot of tossing and turning during the night---I wake up now with the apneas in a way that I didn't pre-CPAP----and an immediate return of the moderate-to-severe hand and foot pain. In other words, PAP-less sleep leaves me feeling worse in terms of PAIN and PAP-less sleep is just as fragile and fragmented (actually
more fragmented) than my fragile, fragmented sleep with PAP.
My thinking is that it's four years since you started this therapy - you/I/we are four years older - life changes are apparent for most of us, menopause is probably in the mix too. A few lucky people seem to escape this and say that this therapy has changed their lives. Really? Not mine. I also think that there are more woman than men having the majority of the issues you describe.
Menopause: My periods stopped about 1.5 to 2 years before I started PAPing. I had, and continue to have, occasional hot flashes, but they're not the horrible kind that some people have to put up with day after day after day...
And I'd be inclined to say all it is is "aging" if stuff hadn't blown up very suddenly right
after I started PAPing.
Yep. You read that right: Just
after starting PAP, my life went to hell. During the first two weeks of PAP therapy, I went from being a functional 52-year old (pre-CPAP) to a walking zombie (on CPAP). While I never had problems with being sleepy during the daytime pre-CPAP, after starting CPAP I developed serious problem with excessive daytime sleepiness. I wasn't sleeping particular well at night with the CPAP: The mask itself was not too uncomfortable, but the air blowing down my windpipe was unbearable. I felt like a balloon being blown up each night after turning the machine on, and the pressure in my stomach and lungs was painful. Aerophaiga was (and remains) an issue. The air tickled my throat, and I could not tolerate lying in bed with the mask on for more than 20 minutes or so without getting profoundly upset at all the physical discomfort I was in. The discomforts of dealing with the mask at night triggered both severe insomnia and a fair amount of significant emotional distress. And during the day I found it difficult to stay awake in meetings and in classes
that I was teaching. Pre-CPAP driving was no problem; within two weeks of starting PAP I was terrified of falling asleep while driving and had become totally dependent on hubby to drive me to and from work. And I had no ability to focus on any of the daily tasks needed for my job as a college professor. And as the semester progressed, things got worse, not better.
In the first six months of PAPing, I was switched from CPAP to APAP to fixed BiPAP to BiPAP Auto. I had six official prescriptions for different pressure settings. And two additional sleep studies for tirating the BiPAP. At the end of the first three months from hell, I started CBT-I under the direction of the sleep doc's PA to rein in the insomnia. At the insistence of the sleep doc's PA I started seeing a CBT psychologist for anger management issues. And I was officially under treatment for CBT-I for five full months before the sleep doc's PA finally fired me as a patient.
If the hand and foot pain had not started to disappear four-five months into PAPing, I'm not sure how long I would have continued with PAPing.
Now almost four years later, I am feeling about as good during the daytime as I did pre-CPAP. The excessive daytime that started AFTER I started CPAP has disappeared. The bed-time dreads are manageable, although my sleep is still far more fragmented than it seemed before starting PAP.
And the cognitive and emotional issues that started after PAP remain. They're not as bad as they were during the first six to twelve months, but I'm not back to where I was pre-CPAP.
My own take? The continuing problems are caused by my fragile, fragmented sleep. If I can ever get to where I'm genuinely sleepying
well night after night, I'm pretty sure I'll become less moody and that the brain fog issues will resolve. But sleeping
well at this point is not going to be achieved by tweaking BiPAP settings. The BiCPAP is doing its job, but the sleep remains
bad for reasons that have nothing to do with untreated (or undertreated) OSA these days.
While I applaud myself for finally finding a mask that works, low AHIs and hardly noticeable leaks, along with what you would consider great data, jumping out of bed and feeling wonderful is a joke to me. My hours of sleep and how I sleep are exactly like yours - with the exception of a few 6/7 hour nites with the Airfit P10. I also have more anxiety about going to sleep now than before I ever started "using". I usually see all your late night posts.
An oddball thing has happened in the last year or so: The dread (or anxiety) of masking up has finally disappeared. Having hubby as a PAPer has helped. It makes me feel a lot less lonely at night. (Fortunately hubby is a duck; he's experienced no significant adjustment problems and he has feeling better in the daytime.)
So most of my late nights are now genuinely "I'm not sleepy enough to go to bed" circadian rhythm problems. I know what I need to do to rein them in, but right now I'm out of "self-disipline:" It's all been spent and I'm finding it increasingly difficult to make myself do things that I don't want to do, even when I know they'll make me feel better. And it's not just sleep related stuff. A year ago, I was walking 4 miles every day. Now? It's hard to force myself to do that. Likewise, it's hard to keep trying to eat a better diet when I don't like most fruits and vegetables and I have a limited taste for meat.
In other words, for now, I'm taking a "vacation" from forcing myself to do things. I know I've got to get back on the horse eventually. But not yet.
So, part of this post is to see if I read your post the way you intended, and part just plain b****ing. Many nites I wish I had never mentioned migraines to my PC, which is what prompted her to send me for a sleep study. I know many of you will say how "lucky" I was so no need to say it. I get it but that doesn't make it better.
I think you're interpreting the post exactly as I intended.
For a long time both I and hubby often wished he'd never insisted that I had to tell the doc that he thought I had sleep apnea. In retrospect, hubby did not realize that my diagnoses was going to lead to CPAP, and neither of us were prepared for the fact that CPAP can be highly disrupting to folks who have a difficult adjustment.