I am so blessed and my story.

[Janelle]

Okay, folks, this is how Sleep Apnea works. It affects a whole host of metabolic disorders, everything from weight gain, to low thyroid, to high cholesterol, to low libido, erectile dysfunction, depression, heart problems and diabetes. These have all been linked to OSA and all have improved with the use of CPAP, as long as you are getting the stage 3/4 deep sleep, the restorative sleep.

You can read through the many posts on this forum and see people who have practically gone off diabetes medications, medication for blood pressure, lost tens of pounds and more (one person in India lost about 48 kilos in 6 months!). But for weight gain, the culprit is Cortisol, yep, the one they've been hyping in weight loss commercials for months. But it's true. Cortisol controls not only where you put on weight (midsection most especially), but your appetite and the type of foods you crave.

I was on CPAP for 6 months, gained 15 pounds the first month, yes,gained, but I think that might have partly been from the Gabitril I was on since that is a known side-effect. But this weight gain happened over a 3 month period, and I was only on the Gabitril about a month. I still had very little energy, although I was feeling better. I still got drowsy when driving even when taking Focalin as a stimulant.

I was tested for Narcolepsy. No, that wasn't the problem. I asked the NP at my Sleep Dr. why this was happening, and she suspected lack of stage 3/4 sleep. At my first sleep study I had none, and little REM. At my titration study, on the Gabitril I had only 5% stage 3, no 4. I was tested again after this meeting, and I still had no stage 3/4 and little REM. It was then I was put on Xyrem, a drug for Narcolepsy but also used off label for returning deep sleep. It was only after I started that that I started losing weight and having REAL energy (the cleaning out the closets type of energy).

Pre-CPAP I was on South Beach diet for nearly a year. Lost 23 pounds and then nothing, no matter how strictly I stuck to it. I should have continued losing, but I didn't. I started eating more normally, cheating a bit now and then, but still didn't gain.

Another aside. I had my GP test my Cortisol level when I had to have my yearly blood panel done. It came in below normal. A daytime test, also came in below normal. I just had another type of test, a AHGT (??Sp??) that is related. I had lost 10 pounds before the first blood test, and have lost an additional 2 since then. I have very little appetite at any time of day, but I still crave mostly dairy products, protein, no bread, potatoes, or the starchy vegetables.

So, yes, if after a few months you are still having some daytime sleepiness, or lack of energy, you probably aren't getting the stage 3/4. Look at your first tests and see if they list an amount of time for these sleep stages. Chances are you didn't get much, but you should have an noticeable improvement during your titration period at optimum pressure.

Above all, if you think anything is amiss, call your Sleep Doctor and tell them your concerns.

My son who also has OSA but has yet to begin treatment (has an appt. with another dr. tomorrow) decided to try the weight loss routine. Went on Weight watchers, worked out in the gym every day plus attended two classes, one in aerobics and one in weight training. he lost 38 in 3 months and is keeping it off, because he is still following the diet and working out. But he still has OSA,. If his cortisol levels were good then he shouldn't have had to go to such extremes. he was working out nearly two hours a day, 30 minutes 3 times a week should have been plenty.

[OldSeaRock]

Howdy LJ,

I find that I grind my teeth less during sleep than I did before using the BiPAP.

And about lap-band; Research it and if that's what you need then get it done. As stated in another post somewhere, Bariatric Surgery has worked near miracles in my wife's quality of life.

DNA and genetics are strange and wonderful things. We're all so similar yet so different. My wife tried all sorts of diets and it didn't improve her health.. laproscopic Bariatric surgery (no lap band - I suggest you research lap-banding before making that decision) did the trick.

[Sleepless on LI]

Janelle,
You are a wealth of information. Somebody has been doing her homework. But I have a question. If I feel wonderful, have energy (cleaning closets out type) and never tire anymore, but still am having trouble losing more than 8 lbs., what do you think? I have to be getting the stage 3/4 sleep if I have endless energy, but I still am plateaued at 8 lbs. I dread the thought of another sleep study to find out if I'm getting into 3/4 stages. So should I suggest a cotisol level test at my primary care's office? I am frustrated. Not that I will stop my exercising, eating right and drinking my water, but it's frustrating to be doing this now almost 6 weeks and still the same 8 lbs. I would appreciate your feedback.

qrtylox,
Does that mouth guard you bought also work to control mouth breathing, too? Do you know?

[qrlylox]

Hi Lori!
I don't believe the Sleep Right guard would help with mouth breathing. The other mouthguards I had tried (the sports kind) were so bulky, and I couldnt get my mouth closed around them, and would gag alot, so they actually made things worse for me (I didnt have a problem with mouth breathing before trying them).
Have you seen that DIY device (to force the tongue back and seal the mouth) thats been discussed on here? I can't recall who fashioned it, but I think Rested Gal could tell you.

[Sleepless on LI]

qrtylox,
Thanks for the quick response. Yes, it was Restgal, the Queen Lab Rat that she is (said with extreme fondness-love her lots), who devised that device. I will look for the link. Tonight, also at her suggestion, I am going to try the Tegaderm patch, those patches they put over IV's in the hopt. that are clear in the middle and have the white adhesive borders, since RG says they work really well and don't come off as easily as the waterproof medical tape might. Not loving this idea of taping my lips shut but if it stops leaks that my software says I'm having (who knew???).
Also, DSM recommended shutting off the Cflex, so I am trying both tonight. Never used to use Cflex before I got my Remstar Auto machine, but felt like I could use it when I got the Swift at the same time. Made it feel like my pressure was higher, even though it wasn't. I guess that's what happens with nasal pillow interfaces.
So now that I have an auto machine with Cflex, I turned off the auto feature and turned off the Cflex and am using straight CPAP. At least I have the software still working...
Have a great night.

[Janelle]

If you've only been on CPAP for 6 weeks and lost 8 pounds and have energy, that is really pretty good. You may just have plateaued and will lose more the longer you are on CPAP. Remember I had lost nothing in 6 MONTHS!

I suppose if you are curious you could request a cortisol test from your GP.

Actually the additional sleep test wasn't so bad. I brought my own mask to use and they started me off at 4 just like a titration, and except for adjusting my mask when it was leaking (this was before I put on the top straps to the bottom of the cap) I slept the entire night. Taking 1/2 an Ambien didn't hurt either. To tell the truth, I was showing a lot of central apneas on my software and hadn't shown but a few on my previous sleep tests, so I was concerned that that might have been the cause. We still don't know why my software is recording so many central apneas, but the Dr. said not to worry about them.

Although another test later on, an EEG (still trying to diagnose Narcolepsy) showed i didn't have that, but did have an "irritated area" on my brain that might be causing "seizures". So now I'm on an anti-seizure medicine, too.

[Sleepless on LI]

Janelle,
I am so sorry to hear of all the problems you've gone through. I will say a prayer that you pull through and start getting the help you truly deserve from this therapy. You've been through so much already, I think it's fair to say you've had your share and time to let someone else have a little instead.

You are partly right about the energy I have, but it's been about nine weeks on therapy all together now. Started on 6/2. However, I didn't start exercising until 7/3 and watching my eating habits about a week before that. So it's about six weeks of those two lifestyle changes that got me the 8 lbs. I started to really feel the positive effects after about 10 days to 2 weeks on therapy. But that is the extent of my loss, not an ounce more or less, and I have had to really work my butt off (or trying to anyway) to get those 8 lbs. off. If I showed some sign of moving forward with the weight loss, I wouldn't be so concerned because I am feeling so good otherwise. That is what is making me confused and why I wanted your opinion. It is confusing that I would feel so energetic and renewed, yet still not be able to lose the weight as you're supposed to if all was corrected. Hmm...just can't figure that out.

Maybe, from your lips to the Big Guy's ears, I am at a plateau and it will eventually pass. My husband keeps telling me that over and over. It's just I've been at insurpassable plateaus in the past and this time I'm exercising, so I will be very upset if it doesn't finally disappear.

Thanks for the quick reply, Janelle. And I hope you get some good news on your own health issues really soon.

[rested gal]

I'd love to take credit for it, but a cool lab-rattin' woman who posts under the nickname "frequenseeker" on the TAS board came up with the "DYI" mouthguard idea to make the tongue hold a seal.

Topic started by frequenseeker Dec 01 2004 subject: mouth leak solution, cheap DIY oral appliance

First one I tried to make didn't work. I gave up on it for quite awhile. After snork1 got such good results with one he made, I went to work on mine again until finally it worked like a charm!

In much the same way as how some of us rotate masks occasionally, I go back to tape for a night or two at a time. But most of the time, I've been using the DYI - so easy to just pop it in and out.

I get my lowest leak rates, usually staying right on the bottom line, with either one -- the DYI (inside the mouth) or the Tegaderm patch across the outside of lips. Either one works equally well at controlling leaks for me. I don't use both together.

M first attempts at a "DYI" resulted in bulky width that was bothersome. I thought I needed the mouthguard to be gripped by ALL the upper teeth, all the way around to the back molars.

The width was annoying, so after I got the center "tongue cup" addition working well, I kept trimming off more and more of the sides of my DYI until now it's so narrow it isn't even in contact with back molars or side teeth at all.

Boiled and bitten by the front teeth, it stays in place fine held only by the 4 front upper incisors. Being so narrow now, it doesn't come into contact with, or rub against, the back or side gums or the inside of cheeks.

The center cup pressing against the tongue to shove the tongue back probably has a lot to do with keeping the DYI in place so well. The whole thing is so small, it's very comfortable in the mouth.

Mouth can be relaxed open and still not leak one bit of treatment air.

[Sleepless on LI]

Okay, RG. Let's recap:

It is not necessary to make the bite part wide, just enough so that the four front teeth fit inside it.

Next we have to make sure that the piece that gets adhered to that piece is in a cup facing ?downward? so that it pushes the tongue back or is there a particular way to mold/attach that piece so it would be the most efficient?

Lastly, I will take away the credit I gave you for inventing it and place it where it belongs, on the TAS message boards, with a woman named frenquenseeker. I just figure most of the great inventions on this site come from you (my mistake-sorry). You reinvent most of the masks you get to make them work, so why not figure you invented this?

One last question and I'm through (been up since 4:45 AM and am going to bed, hopefully to sleep better than last night, I pray). Where can you buy these boilable babies? Are they available in a drug store or do you need to go to a place like Sports Authority or a sporting goods dept. of a Walmart?

Thanks, as usual, for being your totally informed and helpful self, RG.

[rested gal]

If a teacup were laying on its side...the open top of the cup faces the back of the throat. I don't know exactly how to describe the "cupped out" area. When making the thing, I worked with a big blob of extra mouthguard material until I had it attached to the bottom of the incisor holder mouthguard. While the blob was still malleable, I used a wooden stirring spoon to push a big indentation in it. The indentation was to create a "cup" for the front of the tongue.

The cupped area is big enough that the tongue can't get away from it easily. Keeps the tongue shoved back.

I think the big mistake I was making with my first attempts was that I was trying to create more or less a flat shelf out of the center blob. I was trying to make a shelf to hold the tongue up against roof of mouth. When the lightbulb finally went on, and I realized that simply shoving the tongue BACK was the trick, I started making the blob into a vertical cupped shape instead of trying to create a horizontal "shelf".

The first successful middle cupped piece I made shoved the tongue too far back (gag!), so I kept working and working with it until the cupped blob pushed the tongue back just enough and not tooooo much. With the placement of the tongue solved, I then kept scissoring off more and more of the mouthguard's sides each morning when I'd wake up with a bit of irritation here and there on the sides.

Eventually in my quest for comfort, I realized I had cut the sides off entirely! Yet it still fit the front teeth firmly enough to stay in place just fine. Works great like that after many nights of use.

Walmart is where I bought the silicone mouthguards. They have a "Jr" or "Youth" size (can't remember which it was called). I bought some of those for the boil/bite part. Also got a couple of the "Adult" size to have plenty of material for blobbing experiments.

[yawn]

So, yes, if after a few months you are still having some daytime sleepiness, or lack of energy, you probably aren't getting the stage 3/4. Look at your first tests and see if they list an amount of time for these sleep stages. Chances are you didn't get much, but you should have an noticeable improvement during your titration period at optimum pressure.

Janelle, how much time should a person spend in stage 3/4 sleep?? Also, how much time in REM?
Thanks...Amy

[rested gal]

Yawn, here are some links about sleep stages. Several of them mention normal percentage of time spent in the various stages and in REM. The time usually spent in each stage seems to depend quite a bit on age of the person.

http://www.sleepdisorderchannel.net/stages/

http://web.umr.edu/~psyworld/sleep_stages.htm

http://www.sleepdoctor.com/stages.htm

http://www.sleephomepages.org/sleepsyllabus/

Some more links are at:

Dec 20, 2004 subject: Who can answer this question?

From what I've read, as we get older, the time spent in stages 3 & 4 decrease. Apparently it's "normal" for older people to not have much, or any, stage 4 sleep.

[Sleepless on LI]

As usual, RG to the rescue. You did an incredible job describing the cup to push the tongue back. Now I understand totally what this piece is supposed to do so I have a better idea on how to make it.

I used the Tegaderm last night and at almost 5 AM, it popped a leak by the side. So rather than waste an entire new one at 5 AM, I used some mole skin. To say my face is sore from removing them both within two hours of each other is a huge understatement. Don't know how much of this taping I want to take.

Anyhow, after turning off my CFlex, as per DSM's suggestion, to bring down my leakage figure, I ended up with ONE APNEA episode all night (so straight CPAP now and no Cflex with a Remstar Auto. Good, right?). So my AHI was a total of point one this morning, the best I've ever had. Since going back to straight CPAP, too, zero snoring index an no hypops. I don't think auto was the right move for me, surprisingly.

Well, thanks again for taking time out of your day/night to help a fellow CPAPer in need. Have a nice day!

[ozij]

Blobbing expriments!!!

O.

[Sleepless on LI]

Ozij,

Did you ever have the need to tape or use a mouth guard? I hope for your sake, you don't. Almost makes you want to switch to a ff mask (did I say that???).

By the way, would you know what the acceptable limits are for leakage on Encorepro? Tyring to get a lot of people's opinions on this one.