Wondering why I'm not feeling better.........

I joined this site a month ago and have read a lot of posts and followed a lot of tips regarding mask fittings and leaks. I ordered my full face mask over 3 wks ago when I noticed that the nasal mask I was using, I was breathing through my mouth the whole night. So I have been using the FF mask for over two weeks.

I'm trying not to be impatient. I have slept with it on for two weeks, never removing it during the night, and actually I have gotten used to it and am falling asleep right away.

My problem is, I've read a lot of people's posts, about within a week noticing a huge difference in their lives. Energy, not yawning during the day etc. I have been sleeping tons, like for instance this weekend, I slept 13 hours Saturday, and Sunday I slept almost 14. I thought once I got this CPAP machine I would be sleeping like normal people, 8 hours or so and jump out of bed with energy.

My mask is not leaking, I am complying with treatment and using it every night for two weeks, I just don't understand why I am still so tired. I have asked my doctor for an Auto CPAP so I can see what goes on with me at night, perhaps I need a higher setting or something.

Is there anyone out there who it took longer than a week or two to feel better. I don't want to lose hope, but this mask and machine stuff is a lot to put up with and still not feel better.

Please help
Suzy

Hi Suzy -- I've been at it for 3 months and I'm still debating whether I feel better, or worse!!! It definitely takes time and a lot of tweaking to adjust. Being compliant and keeping your mask on at night is half the battle, so perhaps the doctor would agree that an auto would deliver a more effective pressure.

I'm just curious; is your primary problem like, daytime sleepiness, or are you doing this more to feel better and more rested in the AM? I think that people with severe daytime sleepiness problems seem to notice the positive effects of the therapy quicker than those with milder symptoms.

Thanks Sleeper, for the confidence boost. I am on the pap therapy for servere OSA. my untreated AHI was 56/hr and I got in a car accident a few months ago for nodding off at a redlight. I know I shouldn't compare myself to others' posts, but to read many other people post that they felt a huge difference within a week, makes me unsettled. Like, maybe this won't work either and I will still have to have upper airway surgery.

I don't want to give up yet, though.

Thanks again for your post.

Suzy

Suzy,

Like Sleeper said, it can take awhile to recover from the ravages of apnea. It can take weeks to months to start feeling better. Don't despair.....keep at it. Even after eight months, I still get some extra sleep on the weekends to make up for some of the shorter nights during the week. I figure I've got the rest of my life to be "on the hose", so I just take it a night at a time.

Best wishes,

Den

Thanks Den.

Its a relief to hear that it CAN take longer. I searched on this site under key word "feeling better" to see if I could find others posts that said it took them awhile. But the only one I read where the people felt lousy were the ones who had trouble with their masks leaking or ripping their masks off during the night. I couldn't find any posts where people were complaining that they were complying with the treatment but weren't noticing a difference. I just needed to hear from a few people that it can take awhile longer for SOME people.

Thanks
Suzy

Thanks Den.

Its a relief to hear that it CAN take longer. I searched on this site under key word "feeling better" to see if I could find others posts that said it took them awhile. But the only one I read where the people felt lousy were the ones who had trouble with their masks leaking or ripping their masks off during the night. I couldn't find any posts where people were complaining that they were complying with the treatment but weren't noticing a difference. I just needed to hear from a few people that it can take awhile longer for SOME people.

Thanks
Suzy

I think people feeling better immediately is more the exception than the rule.
There are issues like:
"sleep debt" to pay back.
Getting used to sleeping with junk strapped to your face.
Sinus issues.
And all sorts of details that are ignored by the sleep docs and DME's.

Sometimes it can be factors in addition to apnea that are affecting you, such as Restless Leg Syndrome or Narcolepsy.

It took me a year of fiddling and major sinus surgery before I started to get it right, and I STILL often feel a bit dosey during the day and think I should be feeling better, although I am certainly at a better overall energy level.

I have been on this thing going on three weeks now myself and have not noticed a big difference in my life yet.

I too was hoping for this great change that I would wake up feeling like I had the best nights rest. I have not had that yet.

I have noticed a couple of small ones and am hopeful for the future. I have started to remember some of my dreams, I have not remembered them for years.

Oh well, I will keep trying. I know what will happen if I do not, my father died of sleep apnea at 48, I don't want to leave my daughter without a father for something that I can prevent.

So back to the hose.

Scott

Suzy, it took me about 3 months before I started noticing much difference at all, and then it was the little things, like stretching when I got out of bed in the morning. I hadn't stretched for years, just fallen out of bed groaning.

If you are sleeping 13 to 14 hours straight that is NOT a good thing. Sleep no more than 8 hours at night and then take a 2 hour nap in the afternoon if you can and are feeling drowsy. Most of the experts will tell you that staying in bed and sleeping longer than 8 hours will actually MAKE you sleepy. Sleeping that long can also be a sign of depression, which is a side effect of Sleep Apnea and Sleep Deficit for many people.

If you are still not feeling better in 3 months, you should contact your Sleep Dr. and tell him, and don't take the "it takes time" answer. If you are on straight CPAP you might not have the correct pressure, or you could be missing the deep Delta wave sleep which actually restores the body to normal function, like I was. With some Dr.s you have to be very persistent.

A really good sleep Dr. will have you coming in about every 3 months anyway. A bad one doesn't want to see you for a year, if then.

I was on APAP for 9 months and feeling better but still had very little energy. I insisted on another sleep study, suspecting central apneas or something, and it was then they discovered I STILL wasn't getting deep sleep in spite of being on medication. Once they changed my medication it was almost an overnight change and the weight started dropping off at the rate of about 2 pounds a week, and this is what a good night's sleep should do, restore your metabolism to normal so the small amounts of food you have been eating for years trying to lose weight actually have an affect, your appetite diminishes, your craving for carbs goes away and you have ENERGY to do things you have been putting off for years.

Wow, Janelle, that's the kind of result I want to see! After only a week of therapy, I know how Suzy feels. I was hoping for amazing results; my doctor said it would happen, but I was skeptical, and turns out I was right to be. I have noticed that I at least feel as if I've had some sleep in the mornings now, so that's a positive. I think for myself, I've been without good sleep for so long that I have a lot of recovering to do. I'll bet that's the case for you, too, Suzy. Let's hang in there and keep up with the therapy; I know we'll find the right equipment and settings for us eventually!

Be sure you take a good multivitamin too and try to eat healthier. With the good sleep you are probably going to find yourself not wanting as much sweets or caffeine, because you won't need that to help you stay awake during the day. And if you are at home and feel like a nap, TAKE ONE. Listen to your body. When your naps become shorter, or you don't need one, you are on your way. When you don't have the urge to go to bed at 8 a.m. or earlier but are still wide awake, you are on your way to better health and sleep. It is the baby steps that you might not otherwise notice that are getting you on the way. If you take notice of those little things, you will realize you are getting better and better. If after several months you are NOT getting those baby steps, it is time to go back to your Dr. and insist on another sleep study or reassessment. As I've said before, it is your body and your health. Insist on complete treaatment and evaluation of your problem and don't settle for anything less.

It pays to have a machine that uses the software to let you see how your treatment is going. and yes it seems to take a long time, even if the numbers say it's working. It took a long time for us to get run down before we got treatment, hang in there.

Thank you all for your support. It really is a great forum here, I am so glad I found this site. You truly are left in the dark once the DME's drop off the equipment. I had this idea that they might call in a week or two to check on how treatment was going, but I guess delivering and setting up the equipment is the only part of their job.

Again, thank you everyone for your posts. I am going on this over a month, have not noticed anything yet, but I am making an appointment with my Primary care doctor next week to see if she will write me the script for the Auto Cpap (I'll pay for the software myself). I checked with my insurance and they said they'd cover it as long as my doctor deems it necessary. I have had problems with the sleep health doctors and not calling me back. I am supposed to meet with them Feb 9th but since they only deal with the DME that supplies REsmed, I want the Resperonics one due to the more thorough software that has been written about on this site.
So maybe in another month or so I will be able to post that I am feeling better. I just have this weird feeling that my pressure needs are not being met, and my apnea events are not being diminished as much as possible because I have been complying every night for 8 hours at a time, no mask leaks, I'm using the Ultra Mirage FF with my Elite Resmed and humidifier, and I'm not taking my mask off during the night, but after 4 weeks I don't feel any difference, and to make matters even worse, I'm waking up at night and just lying there wondering why I am fully awake. At least before I started the cpap theray I never woke up fully, I never was aware of my sleep disruption. And if I ever had to go to the bathroom I would be asleep again in minutes, now when I wake up with my mask on, I just lay there, sometimes another half hour or hour. I am sooooo frustrated.

Sorry to post so long, I just am up in arms.

Suzy

Hang in there Suzy and just don't give up. I had a really rough last two weeks, but last night actually had a good night (i.e, no rainout, no major leaks, slept all night, and woke with the fog lifting). Even if I just get an occassional day like today seems to be (Wew HOO!) it will be enough to make me perservere through the rough spots.

I use the Remstar APAP w/ c-flex, I think you will like the APAP. It is good your insurance will cover you (once you actually get the dr to call you back) . There are lotsa of folks on this forum who have great advice that can get you through all of the hard spots. They have all been very kind in answering all of my questions.

Take good care and know that I am pulling for you!

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CPAPopedia Keywords Contained In This Post (Click For Definition): C-FLEX, rainout, APAP

Suzy, I was one of the lucky ones in that things dramatically improved as soon as I began treatment. I was so tired that I used to have trouble staying awake while driving my car. There are other factors to consider. One is Seasonal Adjustment Syndrome, which is caused by the short days of winter reducing the amount of sunlight we get. I deal with this every winter, as it makes me feel tired somewhat early in the evening. One thing I try to do is to try and get outdoors by taking walks as much as I can, so I can get as much sunlight as possible. The good thing is that due to my cpap treatment I feel rested and feel good enough during the daytime to do the things I want and need to do. Be patient and be sure to count your blessing that you adjusted to your mask so easily and can sleep during treatment quite well, as some people cannot have that great blessing. I look at my treatment and the help I get from so many people as a blessing, as my life has be improved so much. You take care and all the best!