Is there a CPAP Honeymoon Syndrome??

There is a current thread that I did not want to interrupt and take off topic, but one post by dsm really caught my attention. I am quoting the main part of that here:
"...it has always seemed to me that my experience plus that I have read from many other folk ...that many of us seem to go through a 'honeymoon period' with our new cpap machine but some of us find our selves quickly back where we started.
I would love to see some studies carried out on if this is an identifiable 'syndrome'. Is it something that can be identified and a cause put forward to describe why & how it happens. Question being - "Do some people have respiration patterns that can override the benefit of airway stenting, or bilevel support or ASV pressure support ?" (perhaps there is a simpler question)." [ qtd from post by dsm in another thread.]

Can any of you identify with this? I have been on CPAP for a good year and a half now and I find myself basically back where I started. Exhausted. No energy. Bed looks like a war zone in the morning, etc etc etc. I have a data capable machine and the software. Reports look great. Leaks are minimal. AHI is consistently under 2 or, if over, only by a bit. Have done overnight pulse ox tests and all is well there. Yet I feel pretty much as I did before I got the darned thing. So, when I read the post quoted above, I really identified and wondered how many others might as well. I am still 100% compliant, mainly because I feel afraid NOT to be, at least for now.

So, I am curious. Does anyone else identify with this "honeymoon symdrome?" Were you able to make changes and find improvement or was it just time for a divorce?
And, just for the record, yes, I DO realize how negative I sound. It is precisely how I feel.

Jeanette

I'm not sure what you mean. Do you mean
a. that for an initial period (a few months maybe?) you felt fantastic but after a longer period you started to feel only moderately better,
b. that for an initial period (a few months maybe?) you felt noticeably better but after a longer period you started to feel like it was pre-CPAP,
c. that you never really managed to feel much better at all, or
d. something else?

(I don't think you meant a, but that's what 'honeymoon period' suggests to me.)

I definitely felt CPAP was easier to do initially just because I was so exhausted it was easy to sleep with the mask etc. Now that I'm less tired, it's harder. (Heck, it's 1.5 hours past my nominal sleep time. I shouldn't be up at all, let only be on the computer.)

I also gave up on CPAP for a long time, after many years of excellent compliance. I guess because I felt it wasn't worth it. (That was a bad mistake. I am being good again.)

newhosehead wrote:There is a current thread that I did not want to interrupt and take off topic, but one post by dsm really caught my attention.

Original post is by dsm on Wed Jul 06, 2011 5:15 pm in viewtopic.php?f=1&t=64971&st=0&sk=t&sd=a&start=210. Thanks for not going off topic!

newhosehead wrote:I have been on CPAP for a good year and a half now and I find myself basically back where I started. Exhausted. No energy. Bed looks like a war zone in the morning, etc etc etc. I have a data capable machine and the software. Reports look great. Leaks are minimal. AHI is consistently under 2 or, if over, only by a bit. Have done overnight pulse ox tests and all is well there. Yet I feel pretty much as I did before I got the darned thing.

Have you ruled out other causes of the symptoms you are currently having? It seems like if your treatment outcomes are the same- low AHI, high patient triggered breaths, minimal leaking- but your symptoms are different, there may be some other underlying cause.

If I understood the original post correctly, DSM was talking about people who go on xpap therapy, do great for a short while, and then after that great start, the person return to feeling the way they did before starting and the numbers take a turn for the worse.

That was the case with me. Right after I started on xpap therapy, my AHI was low and I felt wonderful. And then after about a month, I was not feeling so good anymore and there was an upward trend going on with my AHI.

I'm glad you started this thread. I, too, am curious if others have experienced this type of thing with their therapy and if so, what happaned after that?

Deborah

Newhosehead, Thanks for kicking this topic off as a thread. This has really been a topic of growing interest
that I really believe is relevant to manufacturers, specialists and researchers. Over the years I have seen
so many people go down this same path & am sure it was a reason why some (many ?) give up. The topic is
especially important to me right now as a very good family friend who started on cpap a year before me
collapsed & died at home 2 weeks ago. He gave up on his cpap therapy about 2.5 years ago saying he didn't
think it was doing anything more for him. I didn't try to lecture him as I left it to him to make his own best call
on the matter.
I did wonder where it would lead. He was a very mature strong person who had been a 3rd gen sheep farmer.
I now believe I know where it led & can't do a thing about it !. The cause was stress that impacted his heart.
He had just begun a program of having his teeth repaired & pegs inserted (a real alarm bell to any knowledgeable
heart specialist). That type of dental program is stress in the extreme & anyone having been through it will know
what I mean. Taking himself off CPAP clearly did nothing to help him maintain a healthy heart. Heart damage
is a well understood consequence of untreated OSA.

I won't add any more to the topic unless asked. Paper_Nanny summed up my perspective very well (Thanks )

DSM

I had the same experience -- after about a month my numbers were in a good place and I felt better. Then, although still 100% compliant, I begin to feel exhausted again. I experimented with various masks, and finally got the Quattro FX. At first it was great, but then began leaking. So I switched to a new DME (who is excellent) and she helped me get it fitted right. Things improved vastly, but after about 3 weeks the mask began leaking again and my energy went down hill.

Lately I have not been compliant because I get more sleep with fewer awakenings if I don't use the system, and feel more refreshed in the morning. But I know I am putting myself at risk. It's a tough call.

DSM, I am so sorry to hear about your friend. Having once quit CPAP too, I am convinced that my last 5 years would have been quite different if I had not resumed treatment. There was a period of time when I wasn't sure which was worse - using it or not. But even after settling in and optimizing my therapy, I have fallen in and out of love several times. My numbers have remained consistently good, but at times I still feel that something's not quite right with my breathing at night. I have garden variety OSA, so I would imagine those whose cases are more complicated have greater potential for feeling that way.

Because of my history I have to wonder how often CPAP treatment gets blamed for symptoms of issues it can't fix... limb movements, pneumonia, interstitial lung disease, insomnia, fractured sleep from pain, etc., etc. For me, treating my OSA took me to an obvious level of improvement, but once I reached that level, the benefits became less obvious. I mean, untreated I was in a stupor, but coming out of the stupor, while the improvement was appreciated, had the downside of being more aware and in tune with all that was not yet right. Could that qualify as the honeymoon being over? I came to a personal place of deciding to do the best I could do for myself, even if that best left something to be desired in results. I think the hardest part is discerning, in the face of "good" numbers, if obscure breathing issues remain. I too would be interested in studies looking into this.

It partly may be do to the concept of adaptation. At first the difference from the way you felt before CPAP was so dramatic that you really notice how good you feel. And part of the feeling really good may be due to placebo effect. As a result you might not notice other little things that are disturbing your health or sleep. As you adapt to the treatment the way it makes you feel is just part of ordinary life. Combine that with the possibility that any placebo response fades over time, you can be back to noticing issues that you have that were masked.

I never had a honeymoon. Never felt hugely remarkable difference except for the cessation of nocturia and reduction in the morning headaches.
There was some general gradual improvement in energy but no miracle burst.
Brain fog was never one of my problems so nothing to compare it to.

I have some other issues that impacted my sleep so while I was disappointed that I didn't see remarkable improvement, it wasn't a complete surprise.

I haven't slept without cpap to "remember" how bad it was. Been too afraid to. I might feel better than I realize when compared to untreated.

This topic interests me very much as the caregiver. I can see for myself that my husband's quality of life has definitely improved and his data reports bear that out with good AHI's, low leak rates,and no outward problems and yet he will often tell me he had a "very restless night, didn't sleep well at all" and he proves it by being sleepy until noon when it finally passes. He certainly can't explain it and I can't seem to figure it out from what I can see. During his hospital stay without cpap he definitely was restless and having apneas(the nurses documented that) and he said he's now definitely aware he's not having events with cpap therapy. Good thread.

I have been on cpap for over 2 years and have felt much better since day one. I have also aged in those two years and had all sorts of health issues and emotional stress so while I feel much better there are days where things feel worse. However I think I would be in 10 times worse shape if I wasn't doing cpap!
Cpap will not stop you from aging.
Cpap will not stop your body from having other issues - especially since you probably went for several years on low oxygen, damaging your organs.

Your brain also has the curious ability to reduce the memory of pain and discomfort, otherwise women would only have one kid, so what you remember from pre-cpap days is probably only a shadow off what was reality.

Above all - life goes on and your body ages with it.

If you feel bad again you need to discuss it with your health care provider(s) and be proactive and insistent until you have an answer!

Very interesting topic. And I agree with BlackSpinner, who said is a short paragraph what took me most of the morning. But here's my take:

The human system is inherently adaptive to insure survival. The breathing system is highly compulsive, also to insure survival. Anything that improves breathing (like CPAP treatment) even if it doesn't do it perfectly is compulsive and the system will eventually adapt to it.

If a person is diagnosed as apneic, I suspect the system has been adapting to this less than optimal condition for quite a long time, ....some since birth. Meanwhile the system (running on 5 rather than 6 cylinders) develops internal compensating mechanisms (breath harder) and external ones such as avoiding stress, health care utilization, self-medications, etc. But damage to the immune, neuro and cardiovascular sub-systems still occurs. Even if we fix the carburetor (breathing sub-system), there are other sub-systems that are affected and not working as originally designed. And even though there is an obvious improvement it may take some time for the rest of the system to re-adjust.
......And, I'm certainly not suggesting strict adherence to the prevention, behavior control model. There is nothing wrong with eating good food, moderate exercise and getting a good nights sleep. But their programs are based on "social norming", outcasting those who appear different, ....to sell snake oil. And we are different. It's really OK.
......Yes, for some the CPAP treatment is very effective. It works 100%. But, for others, especially for us matoor folks this full system restoration will probably never happen. Even if we fix the carburetor, we shouldn't be doing "wheelies" just because we can. We know the clutch, transmission and rear end are next. But preserving that choice, the belief that we could, and the ability to fuss about it to create change, seem to be an important motivational factors.

So, if we somehow circumvent the compulsivity and go off of CPAP (or any other) treatment, the system will eventually re-adapt to that less than optimal condition too. And we may try other things, maybe a bit of the better snake oil, ...as long as it is through choice. Sometimes it helps. Fix what we can and leave the rest up to some higher power.

0915: Made a few minor enhancements, because I can.

Interesting responses and it is good to hear how people feel about this. Someone asked what I meant by the "honeymoon period." I had never even really thought about this until I read the post that started all this and the term resonated with me because I felt improvement rather soon and then it seemed to go the other way. I remember sooo clearly the morning I woke up after my titration study. I was in the restroom getting dressed to leave and I just felt "different" but could not put my finger on what it was. It hit me not long after. I felt alert and I had been unable to identify that feeling because it had been so **** long since I felt that way. I acclimated pretty easily and I think mainly because I was sooo tired I always fell asleep quickly. Still do the majority of the time.
I realize full well that as we age things change. Yep, got that. Duly noted. I have also been in the process for some time now of getting other things checked, trying to see if there is another issue at work here.
Things change over time and this treatment (and the day to day outcomes) are not static. Again, I am just interested in how people respond to this and also find myself feeling as though I am back to square one. Even so, as I believe someone pointed out, I do realize that what I feel now might seem not half so bad if I was actually thrown back into that pre-CPAP state. I will keep masking up.

I don't know if being an ASV user makes a difference or if the problems that require an ASV are the reason, but my honeymoon with the machine was a dud: the overnight orgasm I was expecting did not come (puns intended).

Yes, my memory and concentration are better, the fog is lifting, the headaches are mostly gone, my wife notices my attitude and demeanor are better, and I handle stress far better. I just don't wake feeling 'refreshed' and ready to go. It still takes me a while to get going, and I still lack energy during the day. Even on days when I have an AHI of 0-3, my energy is just not there.

I've heard of other folks who didn't have that honeymoon period but over time (months) they did get their energy back, so I am hoping things improve with time for myself and others like me as well.

My take on this is that we start xpap therapy thinking that it is going to fix all of our exhaustion and other problems that can be/are attributed to sleep deprivation. HOWEVER, eliminating apneas may be only one aspect of our sleeping issues. Unfortunately, I think that too many docs simply look at the AHI and if it is below 5, assume that we are sleeping very well. But eliminating/controlling apneas does not mean that we're sleeping soundly or getting enough REM or deep sleep cycles during the night. As others have mentioned, there are a lot of different things that can and do impact our sleep.

My personal journey towards good sleep is much longer than I had hoped. I desperately wanted to be one of those who put on a mask a voila! woke up feeling great the next morning. No way. At about 9.5 months now, I'm still making lifestyle and health changes that are continuing to improve my sleep. It isn't fun and it isn't easy, it's often one step forward and two steps back. But overall, I'm sleeping better and feeling better. For me, it meant getting a Zeo sleep monitor so that I had some idea of how I was sleeping. Then it has been a lot of research and reading, trying some supplements, modifying my diet and lifestyle, etc. It's working, but it is a slow and often laborious process. But I continue to feel better--in tiny little increments--and that keeps me going. If one thing quits working, I try something else. The other benefit to all of this is that I really am improving my overall health and that can only benefit me in the next few decades of my life. I feel younger and healthier now than I did a year ago, and I feel MUCH MUCH better than I did five years ago (the first major change: two knee replacements so I could be more active again).

I wish xpap therapy was magic, but for some of us it isn't. However, I think it IS a component of good sleep, and at least if we eliminate/control the apnea, then we can start to drill down and work on the other underlying and more subtle sleep/health issues.

Weezy

I agree with everyone who has noted what a great topic this is. There is no reason this can't have many different explanations. Like others have said, we notice change as much or more than we do what level we are at. Driving 50 mph and driving 80 mph don't feel all that different, but moving from 50 to 80 is exhilarating. Once we internalize the initial improvement, our focus shifts and we notice the things that are still wrong. (This doesn't apply, of course, to measurable objective change, like an AHI that gets better but then drifts back up.)

There is another possible contributing cause that I haven't seen discussed yet. Insurers and safety experts sometimes talk about a factor they call risk compensation. This isn't an iron law that is always true, but they think sometimes people are basically comfortable with a certain level of risk, so if something is done to make an activity less risky, people adjust by changing their behavior until they are back to the level of risk they find tolerable. For example, some argue that if you give cars antilock brakes, people will take advantage of the improvement and drive faster up to the point of being back at their comfort level. Give a man Lipitor, and he'll just enjoy extra hamburgers till his heart-attack risk is back to its former level.

I think my behavior is affected at times by a similar kind of sleep compensation. After my initial CPAP improvement, when I had become used to good continuous sleep all night, I began sleeping shorter hours. I will yield to the temptation to start a movie at 11:00 instead of turning in, or I'll pull an all-nighter to complete a task, or I'll wake up early with the summer dawn (why would anyone put skylights in a bedroom?) and pick up a book instead of rolling over and going back to sleep. These are unwise behaviors, but sometimes I do them anyway. I take advantage of the better sleep CPAP offers to do stuff I want to do when I should be sleeping until I'm back to the level of sleep deprivation I learned to tolerate. It's never as bad as it used to be -- after all, I don't have oxygen desaturations and I get to hit all the sleep stages -- but I am fully rested less often than I should be because CPAP allows me to get by on fewer hours in bed than I needed when my sleep was rotten. Many this is one reason the honeymoon ends for some.