No results after 137 nights, should I keep going?

[SleepyThing]

Hello,

My name is Dave and i'm 36 years old. 5'9", 290 lbs, I was overweight pretty much all my life until 2003, when I began going to the gym regularly and got into hiking and stuff. I lost 80 pounds over a year, the right way (roughly 1.3 lb/week).

To make a long story short, for different reasons, I slowly gained all the weight back throughout the next 7 years so here I am today, at roughly around 290 lbs. My body composition is different however, I am able to perform in sports even though weigh almost 300 lbs... I play (surprisingly intense) badminton every week, etc. I mostly wear XXL shirts (18.5 / 34-35), and size 46 pants.

Now, onto CPAP stuff. After a few years or not feeling "refreshed" most mornings when I wake up, I decided to see a doctor. Other than very mild hypertension, my body is fine. Nighttime oxygen saturation tests showed I "dipped" below 85 % here and there throughout the night, resulting in a "moderate" sleep apnea diagnosis.

Fast forward to today. I've been using an F&P ICON auto machine for 137 nights, with an average AHI of 2.7, leak number is 26 (whatever that means, but it looks like I have absolutely no leaks), pressure average is 9.0-9.5 with very few variations. Data analysis by my sleep tech shows that, on paper, based on the numbers, my apnea is definately treated. No more o2 dips, etc.

Then why am I not feeling any better in the morning? What is going on? When I wake up, I still have this urge to just snooze and snooze until I have no choice but to get up so I can get ready and drive off to work.

Is it possible that I am simply a non-responder to CPAP treatment? Should I start looking elsewhere to fix my problem (ex. : going to the gym again, in addition to playing badminton once a week). I'm kinda desperate... what should I look into? Eating more fruits and vegetables, whole grains, and fish?

Anyways... Just typing this lifts up my spirits, knowing that maybe someone reading will relate to what i'm writing and that I might not be alone.

Any thoughts or advice is appreciated.

Thanks

[need2snooze]

Hi Dave,

There are several knowledgable people here on the forum that will address your sleep problems. I just wanted to encourage you to hang in there. I, too, have been struggling to find that perfect sleep factor combination, but I know it's coming soon. People here are very helpful. Glad you stopped by.

[Guest]

You didn't say what your pressure setting(s) were, but if I had to guess, I would say that if you're using a range of pressures, it's the changing pressures that are wrecking your sleep and leaving you feel unrested. About the time you go into deep sleep stages or REM, the machine misinterprets your breathing (air flow) and decides to increase pressure. That bumps you out of those stages of sleep you need and in effect nullifies your therapy.
Try a straight CPAP pressure for awhile and see if that helps.

[Mary Z]

Dave, how are you sleeping? Do you think you're getting quality sleep? I doesn't sound ike you are if you wake up and just want to go back to bed. One very hard thing to do is review basic sleep hygiene and make sure your getting good sleep. If you're not sleeping well, I don't think CPAP will help you wake up refreshed. It's a lot of work to track down why you don't sleep well and you may need the help of a therapist or other person who specializes in this. Keep using your machine.
Just some thoughts off the top of my head. I may be way off base. Good luck. Also it may take some of us even longer to feel better- six months is unusual, but not unknown. Has it been this way the whole time?

[BlackSpinner]

You may not be perceiving the change but your internal organs are. Most people are not aware of happy kidneys and pancreas.

Fatigue is only one of the symptoms and sometimes the last to go.

[Pugsy]

Welcome to the forum.

You have to keep going with the therapy...no choice...just because you don't see the marked improvement doesn't mean that the therapy is a failure. Your oxygen levels tell you the machine is doing its job. These machines address one issue...sleep apnea.
A super great AHI of 0.0 doesn't guarantee that we will ever feel the Eureka moment.
Oh we want it for sure...myself included...but it just doesn't always happen despite those few lucky people who do see a marked changed in how they feel. They don't know how lucky they are. Most people get to plod along and just keep doing whatever they can to improve how they feel. We have no choice.

For those of use who have been in your shoes (myself included) we just have to sit back and take a hard look at the overall picture and work on anything and everything that affects how we feel that simply isn't related to sleep apnea.

How many hours of sleep normally? Is the sleep fragmented for any reason?
People with short hours of sleep or fragmented sleep feel just as crappy even without OSA diagnosis.
So we have the usual list of things to sort through. Some you can do on your own but some you need to involve your doctor into the discussion. Some of the things to consider....obviously hours of sleep..fragmented sleep...bed comfort....pain....mask issues....AHI...well some people say they feel better with AHI under 2...are you one of those? Who knows. Meds? General health issues...complete physical to include some stuff not normally tested for like testosterone and vitamin D levels along with complete thyroid work up and not just the screening. These are just a few things to consider...there are others.

Do the varying pressures of APAP disturb your sleep? It is possible and something to consider. It isn't a give though. Lots of people rest better on APAP..we are all individuals.

Finally even with nothing else we can put a finger on sometimes it just takes time...and sometimes a lot of time and some people never achieve what they yearn for but you can't stop just because you don't have the "miracle". Sometimes the improvement is so gradual that we don't see it until for some reason we have to sleep without the machine and then we get a real wake up call.

If achieving a great AHI was all that was needed..heck this would be a walk in the park but unfortunately good on paper doesn't always equal good in real life..or at least as good as we want it.
Been down that road myself and I am still working on it.

Get your doctor involved to do the things he has to do and test for.
Take a hard look at your sleep hygiene and see if it needs work...mine always needs work.

Finally don't give up just because you don't see what you want to see. The damage that sleep apnea does and that is being prevented by using the machine every night is something you can't see but is very real.

[jen4700]

You may not be perceiving the change but your internal organs are. Most people are not aware of happy kidneys and pancreas.

Fatigue is only one of the symptoms and sometimes the last to go.

Being a newbie - this is good to know!

[Maxie]

I'm still learning and I have found that it was difficult to get accustomed to having a good night's sleep as apparently my body had leaned to compensate very well. It may be that it will take your body a while also but please don't give up. There are great people here who are wonderful about sharing their knowledge so stay connected and let us know how you are doing.

[IndyDave]

Ditto Pugsy on the blood workup for hormone levels... I have a mix of the two - some sort of endocrine issue and the apnea. And of course they feed off of each other - each reinforcing the other. So we got the hormones adjusted with supplements, and now I'm on a bipap to see if that brings my energy back up. If it does, than back to monitoring the hormones closely to see how far down we can wean the supplemental horomones.

Good luck!

[kteague]

Looks like you've gotten lots of good practical suggestions to help you move forward. Optimizing your OSA therapy is a worthwhile goal. Your cpap treatment will give your body the foundation on which to build other healthy habits. Note to self: Giving your body proper nutritional support and exercise are good habits for all of us that can help provide an environment conducive to a sense of well being. Hopefully your doctor can do some testing and find ways to help you feel even better. Are you on any meds that could be adversely affecting your sleep? RLS and limb movements are common sleep disruptors - are you a restless sleeper or do you simply lie awake? It's quite reasonable to expect there to be more than one contributing factor, so it can be a process of elimination, a process worthy of the effort. Do what you can for yourself, get help for the rest. I'd hate to see someone so young resign themself to this being the best it can get. That should be reserved for when there are no more options to explore. Best wishes.

[fadedgirl]

I'll chime in with a third recommendation to get your hormone levels checked. Your remedy may be as simple as taking a little hormone troche once per day. Keep getting the levels monitored and its usually easy to get (and keep) the levels at where they should be. The hard part for me was finding a doctor that would do it and keep doing the testing every few months.

I'll add that you may also want to also get your thyroid checked, and finding a doctor adept at that is just as difficult as finding a good sleep doc. If you are interested in this aspect, check out stopthethyroidmadness.com website and do your homework before you see a doctor. That way you'll know immediately upon speaking with a doctor whether or not they're up to date on thyroid issues. Any doc that only looks at your TSH level is not.

My muscles used to really ache from the oxygen deprivation. Once I started on cpap, that was the first thing I noticed as being improved. Have you noticed any benefits? What was your AHI at your sleep study?

One last thing you may want to look at is 'going Primal'. Even after being on cpap for a couple of years, I still had no real energy. I definitely felt better than beforehand, but was still lagging way behind 'normal' folks! I stopped eating grains and eating more meat about a month ago, and the change in energy level has been ridiculous. And I haven't even been doing it 100% yet. You might really enjoy it, being an athlete, the increase in strength that people report is amazing. See marksdailyapple.com

Stay on the cpap!!

[VikingGnome]

Get a ZEO or borrow one for a week from somebody. You may be getting good hours sleep with "good numbers" but no restorative sleep. On my sleepy study I had NO REM or DEEP sleep. After 60 days of CPAP I was still having EDS. So I bought the ZEO and was able to show my doctor that I was still not getting any restorative sleep while getting 16 hours sleep a day on CPAP. She agreed to reduce the dosage of one of my medications and now 30 days later, I'm getting 2 hours of REM each night but still no deep sleep. Still feel drowsy most of the day. So next visit we'll reduce med dose again. Sometimes it can be things you're not looking at that contribute to that sluggish feeling we all know so well. I had an antihypertensive that caused me to be sleepy--norvasc.

My friend is borrowing my Zeo this week. He has mild OSA and really doesn't want to go on CPAP. I showed his wife the information Zeo gives you about your sleep each night and she wanted him to use it for a while. First night he was shocked to find out he only got four hours sleep and two hours were REM. But he was in bed "sleeping" for what he thought was 7 hours. I asked him how many time he woke after being asleep and it was 15 according to Zeo. I told his wife that further evidence that he really needs to be on CPAP. He's probably waking up every time he struggles to breathe.

Also, even though you believe you are in good physical condition, 300 pounds is lot of weight to carry around all day. You might consider losing some weight again. I've been on South Beach Diet for six weeks and have lost 22 pounds. I can already feel the difference.

[MaxDarkside]

No results after 137 nights, should I keep going?... with an average AHI of 2.7,... my apnea is definately treated. No more o2 dips, etc.

Looks like results to me! Treating apnea and getting your O2 de-sats under control is great, but as others point out that is only part of the equation to daytime feel. There are a lot of other factors, but you did eliminate those apneas. Bravo! Now to discover what else is happening. For me, after talking to my sleep doctor / neurologist, something as simple as my taking too much Excedrin for body aches (had analgesic rebound, particularly during sleep), and consuming too much caffeine too late in the day (because I was so groggy) were significantly hurting my sleep quality. I went cold turkey on the Excedrin and stop the caffeine around late afternoon, and wala! I took a big step up in sleep quality and next day feel. I'm at a new plateau and looking around for the next thing that will put a dent in my (now lessened) grog. I have sleep-onset REM, so maybe a touch of narcolepsy, so right now I'm experimenting with taking a tiny bit, like 1/5th tablet, of pseudo-ephedrine 12 hour at about 8 AM which lasts until 8 PM and around that time the caffeine half-life's away and I'm pretty pooped when I shut off the light around 11 PM. We'll see how that goes. After that, I'll experiment with more exercise, aerobic levels.

Stopping CPAP therapy could result in the story in my signature... near death experience in a parking lot, alone. No thanks. I will work to continue my treatment, day time feel, and productivity, which is noticeably better and my wife says it's nice to have me back again.

[chunkyfrog]

It was at least that long before I noticed I was feeling better.
Don't give up.
Sleep debt is a bear. It may take a while to break even again.
Regular exercise helps accelerate healing, good sleep, and weight loss.
Be good to your bod.