extremely tired all the time. need advice.

Ok, I am absolutely sick of walking around dog tired all the time.  A few years ago, I had a sleep study done.  They said I had sleep apnea.  At the time, I didn't like the CPAP and felt like they were just medical sales people trying to sell me this stupid piece of equipment I didn't want and would be embarrassed to wear.  Well, still being tired for years, I talked to my dad and my father in law which both have CPAPs and they just tell me how much I’ll love it. Best decision they ever made. Would never sleep without it.

Last year I got new insurance that was better and I had another sleep study done.  Same recommendation.  I have sleep apnea and need a CPAP.  That time, I went through with it and got a CPAP.  I wore it for the last year.  I had many sleep doc appointments and he always praised me for high compliance and my numbers are great.  I still tell him, I may be sleeping better, but I am no more awake during the day than I was without the CPAP.  I care less that I'm sleeping good or bad.  I don't remember that.  All I know is I am dog tired all day.  Starting around last October, I made it a point to loose weight, make running a mile normal for me, and exercise normal.  I've been very consistent. (I run a mile every day for the last few months.)  I've had the CPAP for a year.  Lost 40 pounds.  I am still absolutely dog tired all day.  A few weeks ago, I gave up on the CPAP.  I packed it up and threw it in the top of my closet.  I am still curious if I have sleep apena.  I saw a new sleep doctor and he wants me to do another sleep study.  Problem is that costs me another $600 out of pocket!!! Either in lab or at home, it's $600!!  I just had it done a year ago.  I've come to the conclusion I don't feel any better wearing a CPAP.  My self esteem is much lower wearing it.  I hate the thing.  I'd rather not use it seeing I'm getting 0% benefit and I don't like it. 

I've also talked to others about this.  They said well you could die younger.  I've said I'd rather live 60 years I enjoy than 70 years I dread going to sleep every night. 

But does anyone know of a semi reliable way to check if I still have sleep apnea?  My wife says I never snore.  She doesn't hear me gasp for air at night. 

My one sleep doctor stated that if I didn't like the CPAP, I could try a mouth guard and see if that's better.  But, one I have TMJ in my jaw.  If I leave my jaw unclenched, my jaw moves out of position.  If I use a mouth guard, it will take half the day of me bitting down to get my jaw realigned. 

Also, one other note, I saw a new general doctor a few weeks ago and they tested my Testosterone.  Embarrassingly enough, it was low.  I am now on T injections.  This could be why I'm constantly tired.  But could low T levels cause sleep apnea or sleep apnea type symptoms at night during my sleep study?  It only makes sense the sleep studies had to be correct and I have sleep apnea and if I'm waking up multiple times an hour, obviously I'm not getting the sleep I need.

I guess I am looking for any advice.  I want to live as long as possible.  But I also want to live a life I enjoy and don't dread 1/3 of my life.  Are there any other options out there?  Like my sleep doc suggested, if I try breath rights or a mouth guard, how do I know if it works without a sleep test?  I can't afford $600 to try every option out there with a corresponding sleep study.

Hi... most important stuff first - what specific machine do you have (not just brand name plse but all words, #'s etc) and mask. What are your pressure setting(s)? Do you take any meds? Have you recently had labwork for thyroid, sugar, hormone levels, Vit. D, etc?

Please return to this thread with answers so we can follow things along...

Are you using any software?

About pressure and whatever else.... seeing I packed it up, I guess none? I don't know what it was. My doc had it set as automatic so it adjusted to the pressure it thought I needed.

About the lab work, yes. All tests were normal except my hormones. That's where they found my Testosterone levels were a little low. He said they weren't extremely low. One of their labs they would call my number low end of normal. Other lab calls it under normal. But he said I was exhibiting all the symptoms of low T levels so he would treat the symptom and not the number. I am on my second week of T injections. But, like my post states, even with it low, would it cause my sleep study to come back showing I have sleep apnea?

About your TMJ:

viewtopic/t91180/CPAP-amp-TMJ-pain.html

my tmj never hurts. my jaw curves way in towards the back of my mouth which may be part of my apnea. my tongue is wider than my back teeth. (I don't chew gum because if I do, I will almost guarantee bite my tongue.)

also if I have my jaw apart (like a dentist appointment when I cant close my mouth for 15+ minutes), my jaw moves out of alignment and takes hours of clinching to get my teeth and jaw to line up again.

I had one tmj place x-ray my jaw. they said jokingly that my muscles in my jaw look like Arnold swartenigers jaws because I clinch my jaw so much.

dorlow wrote:About pressure and whatever else.... seeing I packed it up, I guess none? I don't know what it was. My doc had it set as automatic so it adjusted to the pressure it thought I needed.

About the lab work, yes. All tests were normal except my hormones. That's where they found my Testosterone levels were a little low. He said they weren't extremely low. One of their labs they would call my number low end of normal. Other lab calls it under normal. But he said I was exhibiting all the symptoms of low T levels so he would treat the symptom and not the number. I am on my second week of T injections. But, like my post states, even with it low, would it cause my sleep study to come back showing I have sleep apnea?

Some advice..........
USE YOUR EQUIPMENT!!!
Learn all about it. Learn to adjust your pressure settings......tweak them for optimal therapy.
Get some software and monitor your data.
I suspect that many of your other issues are related to your sleep apnea.


Den

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from somewhere way "outside the box..."

Sometimes a change in perspective can help adapt to extra equipment while sleeping.

This week I am flying jets over the Arctic looking for changes in the ice.

Last week I was off of Florida scuba diving for sunken treasure.

Before that I did a time warp and was going through tunnels that didn't have much air helping the resistance avoid the German troops. A mask supplying air was needed to keep from passing out.

As you can see the secret life of Walter Mitty is pretty much my sleep norm.

I am an active sleeper and sometimes I get tangled up in my hose. To solve this I decided that the hose was my ballroom dance partner. At the end of our performance the applause and cheering bring a smile to my face and I know I nailed this performance.

Many people go into great detail and describe the problem from many angles. While that is a good place to start you then need to take the next step and ask yourself what the solution would look like. Moving your focus from the problem to the solution is a wonderful way to overcome issues...

While this may sound a little strange, I actually look forward to going to bed and usually wake up rested, refreshed, and ready to greet the day.

Please fill in the equipment section of your profile. Assuming you have an auto full data cpap, you can install sleepyhead and see for yourself how much the machine is doing to keep you breathing all night. My bet is that it's doing a lot. Now, you could well have other sleep issues - some people do and others here may be able to offer you advice about it. But just because you still feel tired does not mean that the machine isn't still helping you a great deal. I had two friends who didn't use their cpap machines and had strokes. Treating sleep apnea is a very serious matter. Many people take time to see the most benefit but if you quit, you never will.

The fact that you have an auto adjusting machine means there's a good chance you have access to data that can help you become better informed about your condition. I personally don't see why another study would be needed at this point. It's too soon to say your questions can't be answered by the current machine.

First of all, the machine can correct your sleep apnea issues. That's independent of other issues that may need resolved. (In this case, low T.) Data can tell you whether your treatment is therapeutic or not, and that is the basis for continuing with treatment. CPAP can't fix everything, just this one very important thing. Unless you've been monitoring your data all along, who knows if maybe your treatment has been subpar the whole time, contributing to how bad you feel. Or maybe it's just the low T. At any rate, if you were to use the machine again and monitor your data, I would initially look at 2 things. What is your AHI? And does the pressure increase during the night? If the pressure increases one could extrapolate that you still have disordered breathing. Stopping a treatment that has been repeatedly verified as needed is not your shining moment. But it's not too late for you to rethink this and make informed decisions rather than emotion based ones. BTW, I commend you on your physical activity and weight loss even while feeling bad. Who knows, maybe you'll be one for whom weight loss improves the sleep apnea, but since that's not nearly always the case, play it safe and substantiate it. If your machine shows no events and the pressure stays at a low starting pressure, then you may want to consider getting retested. Even a low pressure gives some support, so it doesn't mean there will be no events off the machine.

It sounds like you had an idiot doctor who assumed that a wide open auto machine and compliance would make you feel better. Meanwhile you suffer and don't have good settings that will actually help you feel better.

I know you are tired of it, but you need to start over, with the people here helping you. Your machine probably has data, and we can help you zero in on the right settings.

As for still having sleep apnea, most people get worse over time, not better. Even with lost weight, odds are high that you are just as bad, if not worse than the last time you were tested. And snoring is not a good way of guessing. My mom and I both have severe obstructive sleep apnea. I snore like crazy. My mom doesn't snore at all. She just looks dead.

Sleep apnea can cause low testosterone. Do the search.

It is more than possible to have other reasons for exhaustion than sleep apnea. Just because you are still tired while using the apap does not mean you don't have sleep apnea. Mine was due to low vitamin D and high stress and poor sleep stage cycling.

Not using your machine opens you to a whole host of problems other than the low T. None of us here would choose to use machines if we did not have to. But the positives of using it far outweigh the negatives. I hate using mine for a variety of reasons but I don't want to die of preventable health problems.

A stroke would be far more expensive than a new sleep study. Having your wife have to wipe drool off your chin and change your diaper would be far more embarrassing than sleeping next to her while using your apap.

Again, what specific machine/model do you have and at what pressure settings? Without that info there's not a lot we can do to make a difference.

again, I am not using a cpap. but I just called and made an appointment to see my first doc that's 1.5 hour drive away but I like the doc. he seems to know what he is talking about unlike this other doc I don't trust.

even if I gave you my old info.... I guess I could find out through make and model, I don't know the pressure range it's set at and don't have a way to find it out. but I've packed it up and have no intentions on using it again. if I need help to resolve my sleep apnea, I need an alternative resolution than a cpap.

Dorlow,
Drag that sucker back out of the closet and tell us what you have. Someone here can tell you how to adjust your settings so you can get some use out of it. You might as well try to use it and bring a report to the new doctor.

Dani