Hello and Question

Hello, all! I'm 20 days into me post-CPAP life; I'd say I've gone from being utterly exhausted all the time to being just very, very, very (very) tired. I'm pretty much past all the major difficulties using CPAP, and now have three days running with eight hours of mask time. I've read enough to know not to get discouraged and I'm not worrying about the fact that I'm feeling way worse this week than last. But, I haven't seen an answer to this question, so I'd appreciate thoughts: I'm considering setting aside a week or so, and just trying to sleep, say 10 or 12 hours each night in the hopes of getting back to normal. Part of me thinks this is a great idea, especially since I can't wait to feel better. Part of me thinks this is both a waste of a time and risks leaving me feeling frustrated, since my body may just need time to recover from what appears to be almost a decade of sleep deprivation. Thoughts greatly appreciated!

By the way, if anyone knows of academic studies on recovery times, I'd appreciate references. This kind of thing helps me keep positive and stay at it. Also, thanks for all the work that went into this great site! I read a ton of your posts, and avoided a whole slew of problems because I knew what I was dealing with. My eternal gratitude!

Welcome! With a user name like that, I felt I just had to read your post!

I don't know for certain, so these are just my thoughts on the subject. If you were to take a week to pay back your sleep debt, you may feel more rested, but I don't know if the effects of the long term sleep debt can be resolved that quickly. I actually kinda doubt it.

I have been using since October. I was doing great, catching up and all and I saw a slow dissipation of symptoms of the health issues that apnea brought, and then fell and injured my shoulder in December. The pain now severely interrupts my sleep. I'm addressing the matter, but even though my apnea is controlled well, I do have some sleep debt building.

I wanted so badly to be successful, I avoided anything that could discourage me, including dealing with my assigned DME! I also tried to focus on compliance and let the health improvements come when and how they may... and they did!

Now, because of my interrupted sleep due to the pain, I sleep 5-6 hours during the week, and nap on the weekend. Not the best solution, but until the shoulder heals, its what is keeping me together.

It all depends on your body, how damaged it is and all that stuff. If you feel like you could sleep 12 hours a night for a week then do it.

But remember, having 9 women pregnant one month all at the same time will not produce a baby in one month. Some things just take time and it took time to get into the shape you are in now too.

Welcome to the forum.

I don't know of any studies that will give you the reassurance that you need as to how long all this stuff takes before we see improvement. Past history just from the forum members here (a couple of polls) pretty much told us what we already knew....the amount of time before noticing improvement varies a lot.
I know we all read about the lucky ones who pretty much saw the "miracle" overnight but those people are really in the minority. Most of us (me included) took some time before we really noticed a huge improvement. For me I saw some improvement pretty quickly in regards to killer AM headaches and getting up to pee 5 times a night...as those symptoms went away once I had my therapy tweaked but in regards to the other symptoms like lack of energy and daytime sleepiness...those took a lot longer to reduce and the process was very, very gradual. About a year ago I had the chance (misfortune) to have to sleep without my machine for the first time in 3 years. I got a rude awakening as to just how bad it used to be. So during those 3 years I always said that while I didn't wake up feeling like running a marathon, at least I didn't wake up feeling like I had just ran a marathon. One night without the machine and I woke up feeling like I had just run a marathon and then was run over by the bus. It was a remarkable eye opener for me.

While we can't really expect to feel remarkably better immediately we sure don't expect to feel worse but some people do feel worse for various reasons. I suspect a good number of them are probably experiencing poor sleep due to having to sleep with the alien mask on our face. Let's face it...it isn't normal and often our sleep is still fractured for various reasons like just the presence of the mask or leaks or comfort or air blowing on our face or up our nose.

When someone says they don't feel better or actually feel worse, we usually suggest that they start with evaluating the therapy and their sleep quality first. Make sure it is at least optimal and then we investigate other potential culprits.
So how about we start with evaluating your therapy? This is where the software comes in. Do you know about the software?
See the links in my signature line to Pugsy's Pointers for information on software and where to get it and how to use it.

Also...some basic questions?
Those 8 hour nights that you recently had...did you have a lot of wake ups or arousals during that time frame? If so, do you know why?
Do you take any meds, even OTC?
Have you recently had a general physical workup where the usual stuff is checked like thyroid and such?
Finally...exactly what symptoms are you still having that are unwanted? Is it lack of energy or daytime fatigue or daytime sleepiness or whatever? What is it that feels "worse" instead of better?

So let's get the software and get some reports to see if the therapy is at least optimal on paper and go from there.
It helps if we can see what you see on the reports. How to post images of reports explained here in case you don't know how.
viewtopic.php?f=1&t=81072&p=737779#p737779

ThisIsMyUserName wrote:... if anyone knows of academic studies on recovery times, I'd appreciate references. This kind of thing helps me keep positive and stay at it. Also, thanks for all the work that went into this great site! I read a ton of your posts, and avoided a whole slew of problems because I knew what I was dealing with. ...

Like you, I would love to see statistics on this. However, I'd like to see other data as well -- the number of people who give up on CPAP therapy for various reasons, and why. Part of the problem is that HIPAA makes it difficult for someone to access the data across multiple sleep labs, much less one.

The most important things are persistent determination and a willingness to become actively involved in your own path to good sleep. You've obviously got a good start since you were present enough to your own therapy to ask for and receive a fully-data-capable auto. From here on out, there will be bumps and dips, and triumphs. Many of us have been where you are now. You will get where we are and maybe even further at some point. It's different for everyone.

Welcome!

Thanks everyone for all the thoughts. Pugsy, to answer your questions, I spent a lot of time reading posts here while waiting for my sleep study results and CPAP titration, so I was able to very quickly overcome the things that usually hang up most people (I tried on multiple masks during my titration to find one that really felt ok; I started with a cheap hose hanger and heated humidifier for maximum comfort (or at least minimal discomfort), I checked my data on sleepyhead every day (without which I wouldn't have known that I was taking off the mask, leaving it off for hours, and putting it back on without even realizing it; I've mostly overcome this issue with mask alert, wife help, and getting used to the mask), I started using lanolin immediately when my nostrils got sore, and so on).

In general, I'd say that on a normal day before CPAP, I'd be completely exhausted, yawning all the time, drinking three huge cup of coffee every day, without which I'd just keel over. Immediately after CPAP I felt pretty good, dropped to only two (still huge) cups of coffee every day, much less yawning, still extremely tired, but not completely a wreck. I went through a few days of being really edgy and touchy, which isn't like me. About a week and a half in, I had two nights in a row with really vivid, lengthy dreams, which I can't remember having in years. I'd say now I'm a little worse than that, back to very, very tired and three cups of coffee, but I feel less like I'd die without them and definitely better than before. Persistence and will aren't my problem (for example, I maintained my fitness routine, including mixed martial arts sparring multiple times a week, even at my lowest point), but I am finding it hard to keep a positive outlook. It's like the years of exhaustion were survivable, but now that I know it can be better, I feel the exhaustion more, even though the exhaustion is objectively better.

I know all this is normal, and that's one reason why this site has been invaluable to me, and I'm just going to stick with it. My apnea is apparently considered moderatea (AHI=22), but looking back, I have good reason to believe it started in about 2005 (when I started snoring, started getting daily horrendous migraines, and found that maintaining my weight became much, much harder), so I imagine I have a HUGE sleep debt to make up.

With respect to sleep quality, I get about 8 hours in bed, get up about twice a night for bathroom breaks (pre-apnea, I slept through the night; I did have one night a week ago where I slept straight through, and I'm really hoping that becomes the norm). I am a lover of Sleepyhead, and it appears my AHI is currently between 3 and 5 on any given night. Two nights in a row I had about an hour of moderate apena (AHI = 22 one night, 16 the next), but that didn't happen last night. Also, my pressure is low (set at continuous 5.0) and my doctor suggested we raise it to 6.0 after a follow-up next week, so hopefully that'll keep such things from happening. During the first 10 days or so of CPAP, I was definitely waking up a lot from the alien mask, but that seems to be happening much less in recent days.

To answer the other questions, I take a lot of Tums (I am aware of the apnea-GERD connection, and hoping that gets better, but we'll see) and some triptans for migraines, but that's it. I eat very healthy (except on glorious, glorious, Sunday when I eat whatever I want), and I work out regularly.

Thanks for all the help, without this group I'd still be trying to figure out how to survive an hour with the mask on.

If you are seeing clusters of events...most likely culprits are supine sleeping or REM stage sleep or maybe both.
Each is very common. The fact that you sometimes see them and sometimes don't see them probably points to sleep position.
I found (from my own personal experience) that when I saw a lot of clusters but the overall AHI wasn't so bad that I still felt suboptimal. So I made a little pressure adjustment upwards to break up the clusters and I felt better.
In my case it is REM stage sleep that is the culprit. Documented much, much worse in REM sleep...a lot more events in REM sleep and not many in non REM sleep.

When you have a chance post an image of a "good" night data wise and a "bad" night. It would help if we can see what you are seeing.

If the clusters are pretty bad (and 22 in one hour is bad) a little more pressure probably is the ticket to breaking up the clusters.
If it is supine sleeping some people like to try to stay off their back but sometimes that is easier said than done. If it is REM related not much we can do about REM. Since your pressure is already set rather low....I would just follow up with the doctor and increase it when he wants to increase it. It should be comfortable enough for you and still get the job done and you can sleep in any position you want.
Now if you ended up needing high double digit pressures for supine sleeping then we could talk about restricting position but I don't see that it is worth the effort when someone can get by using 6 or 7 cm pressure and get the job done.

Thanks! I'll see what happens after I increase the pressure (I'd do it today, but I figure I can just wait for the doc; plus, I'm not sure I want them to know that I know how to change the pressure ), and I'll post some data when I have the chance. Much apprecaited for everything!

ThisIsMyUserName wrote:Thanks! I'll see what happens after I increase the pressure (I'd do it today, but I figure I can just wait for the doc; plus, I'm not sure I want them to know that I know how to change the pressure ), and I'll post some data when I have the chance. Much apprecaited for everything!

You never know. I told my doc that I changed my EPR and my pressures, he looked at the reports, called me a rock star, applauded my efforts to get dialed in to successful therapy, and said he'd see me in a year unless I needed something else. Oh, and I gave him this site info so he could pass it along to other patients.

I'm a firm believer in listening to my body and what it is telling me. If I feel tired, I go to bed, and since I am a retiree, I get up when my body tells me it's rested. I find that the hours of sleep I need vary from night to night depending on what kind of activities I engaged in during the day. Also, if I get up early one day, then I usually go to bed earlier than on days when I sleep later. I never feel guilty for sleeping later because I feel that my body needed that extra sleep. My AHI hovers around 1, and when untreated, I suffered from moderate sleep apnea during REM sleep. Sleeping supine seems to be what triggers my events, so I do try to avoid it if at all possible although I find when I wake in the morning, I'm often on my back rather than on my side.

I also vary my physical activity from one day to the next. This morning I started my day off with a swim because I woke up early. Had I woken up later, I would have ended my day with a swim. Some days I walk on the treadmill, but on other days, I walk in the park. Again, I listen to my body and what it seems to want or tolerate.

Although I was one of the lucky ones to see improvement from day 1, I'll also admit that I began to feel better each and every day I used my machine. Now, I'd never want to go back. Breathing in filtered, humidified air has done wonders for my sinuses, and I no longer have a stuffed-up nose like I did while suffer from my sleep apnea.

Since being treated for sleep apnea, I have felt stronger, better, and younger, lost 72.2 lbs. and have had the dosage on all of my medications reduced by my PCP. However, what works for me isn't going to work for someone else, so I suggest that you listen to your body, be patient, and work with your PCP. I'm one of the lucky ones because my PCP understands sleep apnea. He had been suffering from sleep apnea and kept hesitating to get a sleep study done until his heart skipped a beat or two one day at the office. He passed out and had to get two stitches in his forehead from when he fell. The last time I visited with him, he was planning to undergo a sleep study that night.

So, listen to your body and work with your doctor. Above all, be patient.