CPAP/Sleep Apnea Misery!

[HilaryInRC 116]

I have not been particularly successful with my lap-band. My most recent venture in to see my PA at the surgeon's office left me with the fact that I have to wear my CPAP to lose weight (and not die!). I have severe obstructive sleep apnea with score of 150 (over 30 is considered severe). Apparently, untreated sleep apnea effects leptin and ghrelin, which in turn effect insulin, satiety, and hunger. My PA says that I need to 1) wear the CPAP every night, 2) wake up at the same time every day with bright light, and 3) eat 20 grams of Protein within an hour of waking up. He says I should see positive changes in my life and weight in about 3-4 weeks of doing these things.

So, I got my CPAP adjusted to where everything is comfortable and I've been wearing it every day for the last two weeks. The big problem I am having is my sleep schedule. Some nights I will put on the CPAP and sleep for 12 hours. Other nights I'll put it on and be wide awake after 3 hours (like tonight). This makes it hard for me to observe any sort of actual sleep schedule. Also, some days regardless of the amount of sleep I had the previous night, I am tired in the afternoon and take a nap for a few hours with CPAP. I am waking up at many different times and sleeping at many different times and I am struggling in this aspect. I know it has only been two weeks, and I am trying to be patient. But, I am really struggling with this new irregularity in my sleep schedule. I am also finding it harder to wake up every day at the same time since starting to wear the CPAP.

Can anyone explain what is going on and provide some tips (if there are any) about how to correct the situation?

[Jim1967 3,569]

Hi there and sorry to hear your having a bit of struggle. I have been a cpap user for 2 years now and the first year was before the band. My Surgeon didn't even have to discuss sleep studies with me because I was already on the cpap. Your score is not pretty at all but let me tell you mine was over 200!! My Doc and the one who did the analysis were so concerned they fast tracked my cpap order and got me one sooner than a lot of patients.

I can tell you it took me a good month to get used to wearing a cpap and sleep was up and down for a while. Do you have humidifier on yours? I do believe most come with it now. Make sure that has distilled Water in it every time you plan to use it. That makes a whole lot of difference..I top mine of nightly before going to bed so I know it will not run dry in the middle of the night. I do not sleep well at all if it is empty.

I cannot really comment on the weight loss side of it as I did have the cpap a year before I was banded. I can tell you my sleep is much more peaceful and when I wake up I feel refreshed and I most importantly I am not falling asleep at work or driving anymore. A lot of people look forward to losing weight so they can ditch the cpap. Well I can tell you I am the opposite. It will take another sleep study to convince me I don't need it anymore.

I would say give it a full month and if no improvement then let your Doctor know and perhaps they should double check the machine settings to ensure you're getting the proper pressure.

Oh and by the way I have not dreamt in years and I mean many years like I dream now. So I know I am finally getting into rem stages.

Wish you the best. Please keep us updated.

- Jim

[Kime-lou 648]

I use to do sleep studies. Before changing careers I was a respiratory therapist and was a sleep study analyst. When doing sleep studies and researching info about it I found out quickly how scary a person with apnea can be without intervention. I saw patients who would stop breathing and oxygen levels drop into the 50's which can lead to brain damage.

It often takes people a couple of months to totally adjust to a cpap. Some prefer the nose mask some the mouth and nose. Basically, use what is comfortable. You body needs the rest to continue to preform all of it's normal function, and your body needs oxygen to continue to live, so a CPAP is vital.

Many people who are obese with obstructive sleep apnea who lose weight and get back to a healthy weight can end up not needing the CPAP. When you are obese extra fat in the throat area can cause the obstruction when sleeping, when you lose weight and this fat goes away you no long have apneas. So if you lose weight you may want to request another study to check for apneas. Another option is if you still have your tonsils sometimes if they are large (not inflamed, just big) they can cause the obstructive apnea. Some find have them removed can help with apneas.

Biggest advice I can give is find a specialist who deals with sleep apnea. Both Respiratory Specialist and Neurologist are often times very versed in this. But find one who has a speical interest in Sleep Apnea, get an appointment and talk with them about your type of apnea and see what they have to say.

But, please wear your CPAP- it is the difference between life and death. And while right now you may not see the effects of the low O2 levels at night, as you age you may be prone to more memory issues due to this.

Good Luck

[DELETE THIS ACCOUNT! 12,703]

Jim and Kime-lou gave great insight and advice!

I will add only this: sleep apnea can definitely go away with weight loss. When I started this journey I also had obstructive sleep apnea.

Now, not only is my sleep apnea gone but I don't even snore anymore. At all.

Hang in there, it does get a lot easier and better!

[Draven 188]

I first want to comment on the advice you got from jim and kime-lou. I think it is fantastic how helpful this site is! And its thanks to people like you for responding not only with knowledge, but with compassion and speed as well. And to all otheres that post, you are what makes this site great.

I too wear the c-pap. The first one I had I hated. Air would blow out of it all night and hit me directly in the eye. It was terrible. I stopped using it because sleep with it was impossible. I went in and the company gave me a different mask, which worked like a charm. I started using it, and have never slept better. I dont think I would ever want to give it up. One thing I noticed is that you said you sometimes nap in the afternoon with the mask on. Could it be that you are hurting your night time sleep with that? I know if i do nap in the afternoon than sleeping at night is an impossibility for me. I am no expert. But that might be worth looking into. The other tip i got seems to have made a world of difference for me as well. I was never the best sleeper, and worked alot of swing shift jobs so staying on a schedule was impossible. I was tol to make sure that my bed was only used for sleep. ( and maybe one other thing but I wont get into that here. lol) I used to go to bed and lay watching t.v. or browsing on a lap top. I was told, get your body in the routine of bed time means sleep time. That my body would adjust over time and learn that when you go prone it's time for sleep. I cant tell you how much that has helped. It fought me in the beginning, stupid body. LOL. but after time my sleep grew more and more. Now i'm usually asleep in minutes after I lay down.

C pap has made such a difference in my life. During my study they found out that i never really fell asleep. That I would never go into REM. That i would sleep the night, but never really sleep. The first time they put the mask on i was in deep rem sleep in under fifteen minutes. It was a life saver for me. Best of luck to you. I hope it works out.

[Draven 188]

I am so sorry. Mis73, I didn't mean to leave you out of that first paragraph. I have read some of your post and get alot out of them. Thank you as well. See- I'd be the actor that gets the oscar and leaves his wife and kids out of the speach. LOL.

[Jim1967 3,569]

I first want to comment on the advice you got from jim and kime-lou. I think it is fantastic how helpful this site is! And its thanks to people like you for responding not only with knowledge, but with compassion and speed as well. And to all otheres that post, you are what makes this site great.

I too wear the c-pap. The first one I had I hated. Air would blow out of it all night and hit me directly in the eye. It was terrible. I stopped using it because sleep with it was impossible. I went in and the company gave me a different mask, which worked like a charm. I started using it, and have never slept better.

Hi Draven,

First thank for the kudos. That is very kind.

Secondly you bring up such a huge point here. Some folks need a full face mask and others prefer just the nose and there are also different types for each. Like I have the one that covers the entire nose where my Mom has just nasal pillows that go in the nostril. It is very important you find the right fit and balance for you. Getting the mask adjusted properly is also key. Feeling air hitting your eyes is usually an indicator the mask is not snug enough and the air is leaking. As time goes on the straps for those masks stretch and need an occasional adjustment. Also, it is very wise to properly clean and change out supplies on a regular basis. I have two cats so I am forever always changing filters and cleaning the thing.

Jim

[Creekwood 702]

I am pre-op and have been on the CPAP for close to a year. I hate wearing it (just being honest). I hope to lose weight and get rid of it!

With this being said I wear it EVERY single night and will do so until my sleep apnea is non-existent (keeping fingers crossed). I have had a few days where I was sick and couldn't wear it and the next day was always miserable! My wife even asked "did you wear your mask? You have been sitting around all day."

Without the machine I might as well be worthless the next day. You may ask why do I want rid of it so bad. Well part of it is because I'm 28 years old with high BP and sleep apnea and I feel like ditching both will feel like I have taken control of my health again. It took me a month or so to get used to the mask. Mine covers my whole nose but not the mouth. The first month I had trouble falling back asleep with it on if I woke up in the middle of the night. Now it might as well be a part of my face, don't think about it.

Still looking forward to not needing it, however if I do I will wear it the rest of my life. Can't really comment on the weight loss part of it, except with proper use of the mask your energy level should go WAY up, making exercise etc. easier!

Good luck!

[HilaryInRC 116]

Hi Bandsters,

Thank you! You bring up some good insights. I was inspired to look through my sleep study report to review how bad my sleep actually is without CPAP.

I actually had my sleep study done in 2005, a month before I turned 25. I weighed 203 lbs. I got my band in September 2008 (28 years old) and had been non-compliant with my CPAP for at least two years by then. I still weighed 203 lbs at the time of surgery. Now, I am 32. And, I weigh 206 lbs! Geez, I've been struggling with trying to lose and keep off the same weight for about 8 or 8.5 years now.

So, I said I had a score of 150, which is what I thought my PA told me. But, looking back on the report it says only 100. So 200, Jim1987!!!! Holy cow!

According to my sleep study, without CPAP, I spend a little over 50% of my sleep time in "Drowse," and the rest in "Light Sleep." I do not make it to "Slow Wave Sleep" or "REM" sleep without CPAP. So, for a majority of the last 7+ years I've been without Slow Wave or REM sleep. I can't help wondering how much time it is going to take to correct that deficit.

I actually am enjoying the CPAP now. The last time I made an effort to use it, I quit because the air coming through the tubing was making my nose really cold. But, this time, a quick google search showed me how to adjust that and since doing so, it has been much easier to wear. I also have a whole box full of new supplies. Tubing, extra mask (the kind that covers the nose), cushions, new chamber, tons of filters. I do use distilled Water in the chamber.

Draven, I think you are right that taking any sort of nap is counter-productive. I am hoping to do without naps completely. But, some days by around 3-5pm it feels impossible to keep my eyes open, much less do anything but sit on the couch and wish I was asleep. I am a teacher, so I get done with school at 2:20pm, creating a prime afternoon nap time. I'm hoping the sleep schedule will start to regulate itself soon...

One thing I have found to be extra helpful this time around with my CPAP is that before I slide it on, I put on an eye mask. Then, I slide the CPAP mask on over. This gives me a very cozy feeling and allows me to sleep pretty much without interruption (except from my cat). I'm at the point where I'm starting to enjoy CPAP. I just want to go to bed and wake up at the same time, and have energy all day.

I guess it just takes time?

-Hilary

[Creekwood 702]

If you are having trouble staying awake from 3-5 pm and your last sleep study was in 2005 is it possible that your sleep apnea has gotten worse in the last 8 years?

I won't pretend to be knowledgeable about this, just a thought. I wonder if another sleep study would help show where you are at today? Like I said, I'm not knowledgeable about this, just thinking out loud. But, being so tired that you can barely keep your eyes open at 3 pm doesn't sound normal to me.

[HilaryInRC 116]

Oh, one other thing. The Physician's Assistant (PA) that I see at my surgeon's office for the band, used to work for the doctor that did my sleep study. I actually met my PA at the sleep office. But, around the time I got my band, both the PA and sleep doctor moved over to join practices with my band surgeon. The sleep doctor now does all of the sleep studies/treatment for people pre-surgery. The PA has since been trained in bariatric medicine and does follow-up appointments and fills now. So, at least I have him as a resource. I actually sent him an email last night and am hoping to hear back soon.

[HilaryInRC 116]

If you are having trouble staying awake from 3-5 pm and your last sleep study was in 2005 is it possible that your sleep apnea has gotten worse in the last 8 years?

I won't pretend to be knowledgeable about this, just a thought. I wonder if another sleep study would help show where you are at today? Like I said, I'm not knowledgeable about this, just thinking out loud. But, being so tired that you can barely keep your eyes open at 3 pm doesn't sound normal to me.

That is a good thought. I've only been wearing my mask this time around for 2 weeks, so I'm hoping it is just my body getting adjusted. But, if the problem continues, it might warrant a new sleep study. I actually asked my PA about that. He said that since I am the same weight (3 lbs heavier) than when I got the CPAP, that the pressure should be okay.

[tiggergramma 129]

I have had my CPAP for 10 years and would have died without it. Literally. I fell asleep on the freeway and drove almost under the trailer of a tractor trailer. I had to stop driving until I could get in to a doctor to find out what the heck was wrong with me! Once I was diagnosed, and once they put that mask on me in the sleep study lab, I was the most grateful person on the planet!

At any rate, all of the advice you've received is good stuff. And I am happy to see your response, that things are getting better. My one bit of advice is to try a very short cat nap in the afternoon, without the CPAP. Your apnea and/or snoring will wake you up, so it won't be very restful, but will allow you to close your eyes for a few minutes. Sit on the couch, lean back with your feet up, but don't lie down. You will feel rested and it should not interfere with your nighttime sleep schedule.

Good luck!

[Draven 188]

Hilary, the mask idea is great. I never thought of that. i am definitely going to try that. I laugh too, because my wife is a teacher and can be found like clock work dozing on the couch around that same exact time. In all fairness, you have a very tough job. That will take alot out of you. I chaperoned a class trip with her one year because they couldn't get enough parents to go, and I slept for about three straight days after. They wore me out!! I'm a police officer. I deal with murderers and robbers every day of my life and will go out to dinner or a movie, watch t.v., and go to bed for a good nights sleep. Thirty third graders though- and I am done for. LOL. If any one ever says you have an easy job, send them my way. She has a mask too. But she stopped using it. And now she definitely naps much more than she did when she used it. It is sad though, cause the two of us laying in bed with the masks on made me feel soooo cool, like Tom Cruise in Top Gun. I guess she just got fed up with my calling her Goose all night. Go figure.

[HilaryInRC 116]

Thanks for the kind words. Yes, teaching can be exhausting. I mostly teach 6th grade with a little bit of 8th grade thrown in. Still, it is pretty physical work. I can't imagine 3rd grade!

You crack me up with the Top Gun references! It is totally like that! Your sense of humor is right up my alley. I call mine my Scuba Steve (from the movie Big Daddy).