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extremely tired all the time. need advice.
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dorlow Offline

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Posts: 9
Joined: Dec 2014

Machine: Resmed S8 Escape
Mask Type: Nasal mask
Mask Make & Model: unsure
Humidifier: unsure
CPAP Pressure: unsure
CPAP Software: Not using software

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Sex: Male
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Post: #1
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.
07-07-2016 08:44 PM
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kwhenrykerr Offline
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Advisory Members

Posts: 235
Joined: May 2016

Machine: DreamStation Auto, AirSense 10 Auto
Mask Type: Full face mask
Mask Make & Model: Amara View
Humidifier: Philips, AirSense 10
CPAP Pressure: 12-20
CPAP Software: SleepyHead

Other Comments: 2L added oxygen with CMS50F to check usage

Sex: Male
Location: Florida

Post: #2
RE: extremely tired all the time. need advice.
I can only tell you what is working for me.

First off: low T, overweight, overworked, lung problems, heart problems and ugly to boot.

But cpap that I do not like has helped me a lot. It has been a learning time. i have gone from a used cpap that helped to a new auto cpap with added oxygen.

I still get rundown and maybe when I address the low T that will improve.

Having said that I no longer wake up and fight a sever head pain foe 4 to 6 hours. My waking oxygen is just below the normal range without adding oxygen. I find that I heal cuts and scrapes much better. Surgery wounds heal much faster.

I started wearing a oxygen monitor with cpap. With cpap it has been as low as 64 on the heart doctors recorder. My oxygen recorder shows it low often even with oxygen added to the cpap flow. As I have learned to read sleepeyhead charts I began to adjust my cpap. My current settings are working well. I am almost ready to try a night without adding oxygen.

Will I try a night with out cpap ? I do not think so.

My daytime function is much improved. If I could wear the cpap mask all day it would help with the ugly. Dielaughing

Do not quit, find what works for you. Sleep-well

Just my personal opinion. My posts are not medical advice or a statement of fact. Please consult a qualified physician or other qualified medical personnel. Please comply with all applicable laws, codes, regulations, and protocols.
07-07-2016 09:17 PM
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dorlow Offline

Members

Posts: 9
Joined: Dec 2014

Machine: Resmed S8 Escape
Mask Type: Nasal mask
Mask Make & Model: unsure
Humidifier: unsure
CPAP Pressure: unsure
CPAP Software: Not using software

Other Comments:

Sex: Male
Location:

Post: #3
RE: extremely tired all the time. need advice.
My cpap actually is an apap. My doctor has it set to auto. But I feel absolutely no benefit. I was just as tired for the year I used it all day as I was before and as I am now. I notice absolutely no difference during my day when using it than when I am not using it. I could fall asleep at anytime.

Problem with the comment of "do what works for me" is I feel like I've tried anything I know to try and nothing has worked.
(This post was last modified: 07-07-2016 09:22 PM by dorlow.)
07-07-2016 09:21 PM
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kwhenrykerr Offline
Wiki Editor
Advisory Members

Posts: 235
Joined: May 2016

Machine: DreamStation Auto, AirSense 10 Auto
Mask Type: Full face mask
Mask Make & Model: Amara View
Humidifier: Philips, AirSense 10
CPAP Pressure: 12-20
CPAP Software: SleepyHead

Other Comments: 2L added oxygen with CMS50F to check usage

Sex: Male
Location: Florida

Post: #4
RE: extremely tired all the time. need advice.
Can you try using Sleepyhead software to better understand what is going on when you sleep? It has been trial and error for me before I started to read the pages here. After I started using Sleepyhead and I am still learning how to read it I started to change my settings. I did not add oxygen until I could track my levels. I have not driven thru a red light in the last 90 days, I am much more alert. I did not know that I was doing it ! I had a passenger with me who pointed it out. When I review my memory I had a blank spot. It scared the poop out of me. I can only be thankful that I have not had a crash.

The experience has made me do my home work, change the settings on my cpap, add oxygen ad get better.

I am still waiting on the doctor for the first change that he orders. I care about me and have taken to changing settings and feel better.

Now about that mask...Oh-jeez

Without more information about your settings and use It will be hard to tell you what I would do if it were me.

Just my personal opinion. My posts are not medical advice or a statement of fact. Please consult a qualified physician or other qualified medical personnel. Please comply with all applicable laws, codes, regulations, and protocols.
07-07-2016 10:14 PM
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kwhenrykerr Offline
Wiki Editor
Advisory Members

Posts: 235
Joined: May 2016

Machine: DreamStation Auto, AirSense 10 Auto
Mask Type: Full face mask
Mask Make & Model: Amara View
Humidifier: Philips, AirSense 10
CPAP Pressure: 12-20
CPAP Software: SleepyHead

Other Comments: 2L added oxygen with CMS50F to check usage

Sex: Male
Location: Florida

Post: #5
RE: extremely tired all the time. need advice.
At the top of the form is a link to CPAP SETUP it may be a way to help yourself understand your equipment.

Just my personal opinion. My posts are not medical advice or a statement of fact. Please consult a qualified physician or other qualified medical personnel. Please comply with all applicable laws, codes, regulations, and protocols.
07-07-2016 10:19 PM
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PoolQ Offline

Advisory Members

Posts: 986
Joined: Jul 2015

Machine: AirCurve 10 VAUTO
Mask Type: Full face mask
Mask Make & Model: Amara View
Humidifier: Integrated
CPAP Pressure: 6.2, 15, PS4.0
CPAP Software: SleepyHead

Other Comments:

Sex: Male
Location: Sillicon Valley

Post: #6
RE: extremely tired all the time. need advice.
I would bet that I a the poster boy for trying and tweaking setting on a CPAP. Many told me to get used to it and I refused until I had tried every setting 5 times at least. Can I promise it will get good for you, nope not a chance. You should not however give up until you have tried every adjustment that the machine has and then if like me something is still not right get the next level up machine.

For me this is breathing we are talking about, it is serious and if not done correctly I was waking up every 30-60 minutes a night, all night every night. And that was still better then before CPAP as I was not sleeping at ALL and I actually considered suicide.

About 6 months in my Doctor told me I could make any changes I wanted because he was out of ideas. Turns out I had COPD on top of Sleep Apnea, treated the COPD and it was better but still not good. Changed to BiLevel and again better but not enough. Changed Ti max and again better by 50% this time, I was only getting up 4 times a night. CHanged the trigger setting and again better. Someone on this board looked at my plots and suggested that I was not quite at a high enough minimum pressure and they thought I was heading into an apnea, recovering and heading back into apnea pretty much all night long-not restful at all.

I stepped up my minimum pressure by a silly 1.4 cm and bingo the fireworks went off I SLEPT 8 HOURS.

Do not expect this to happen by itself. Do not expect the Doctors to be able to spend the time required to tweak the settings, or even know how to. Do not give up until you have tried everything that the machines are capable of. They put these settings in there for a reason-some people NEED them.

What were the results of your sleep studies? CA, OA, hypopneas? Get the manual for your machine and find out what the settings are, even the hidden settings. Install sleepyhead and read the data off your machine (I assume that it is data capable with an SD card in it, if not get your Doctor to get you a new machine that is data capable). post some plots and work with the very knowledgeable people around here and fight for your sleep.

Some mornings I just lay in bed with the mask on thinking how wonderful it is to just breathe! I took so much for granted. As for your statement about 60 or 70 years, let me clue you in when you get to that point it will matter BIG time. 61 here, double bypass, two stents, COPD, Sleep Apnea, diabetic type 2 and I used to say exactly the same thing as you are saying-oh to do it over. Do NOT go down my path, fight for every single day you can get.
07-07-2016 10:23 PM
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dorlow Offline

Members

Posts: 9
Joined: Dec 2014

Machine: Resmed S8 Escape
Mask Type: Nasal mask
Mask Make & Model: unsure
Humidifier: unsure
CPAP Pressure: unsure
CPAP Software: Not using software

Other Comments:

Sex: Male
Location:

Post: #7
RE: extremely tired all the time. need advice.
ok.... I need advice from people that are not so die hard cpap believers. you can't convince me. wasting your time by trying to convince me to go back to the cpap. I will not use a cpap no matter how wonderful of a machine it is.
07-08-2016 04:46 AM
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kwhenrykerr Offline
Wiki Editor
Advisory Members

Posts: 235
Joined: May 2016

Machine: DreamStation Auto, AirSense 10 Auto
Mask Type: Full face mask
Mask Make & Model: Amara View
Humidifier: Philips, AirSense 10
CPAP Pressure: 12-20
CPAP Software: SleepyHead

Other Comments: 2L added oxygen with CMS50F to check usage

Sex: Male
Location: Florida

Post: #8
RE: extremely tired all the time. need advice.
(07-08-2016 04:46 AM)dorlow Wrote:  ok.... I need advice from people that are not so die hard cpap believers. you can't convince me. wasting your time by trying to convince me to go back to the cpap. I will not use a cpap no matter how wonderful of a machine it is.

Best wishes to you with your freedom to act as you want. OkaySleep-well

Just my personal opinion. My posts are not medical advice or a statement of fact. Please consult a qualified physician or other qualified medical personnel. Please comply with all applicable laws, codes, regulations, and protocols.
07-08-2016 05:30 AM
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kwhenrykerr Offline
Wiki Editor
Advisory Members

Posts: 235
Joined: May 2016

Machine: DreamStation Auto, AirSense 10 Auto
Mask Type: Full face mask
Mask Make & Model: Amara View
Humidifier: Philips, AirSense 10
CPAP Pressure: 12-20
CPAP Software: SleepyHead

Other Comments: 2L added oxygen with CMS50F to check usage

Sex: Male
Location: Florida

Post: #9
RE: extremely tired all the time. need advice.
I bet I could Learn a lot from you. Thanks for your post. I am going to lookup your past posting for more good information. Thanks

(07-07-2016 10:23 PM)PoolQ Wrote:  I would bet that I a the poster boy for trying and tweaking setting on a CPAP. Many told me to get used to it and I refused until I had tried every setting 5 times at least. Can I promise it will get good for you, nope not a chance. You should not however give up until you have tried every adjustment that the machine has and then if like me something is still not right get the next level up machine.

For me this is breathing we are talking about, it is serious and if not done correctly I was waking up every 30-60 minutes a night, all night every night. And that was still better then before CPAP as I was not sleeping at ALL and I actually considered suicide.

About 6 months in my Doctor told me I could make any changes I wanted because he was out of ideas. Turns out I had COPD on top of Sleep Apnea, treated the COPD and it was better but still not good. Changed to BiLevel and again better but not enough. Changed Ti max and again better by 50% this time, I was only getting up 4 times a night. CHanged the trigger setting and again better. Someone on this board looked at my plots and suggested that I was not quite at a high enough minimum pressure and they thought I was heading into an apnea, recovering and heading back into apnea pretty much all night long-not restful at all.

I stepped up my minimum pressure by a silly 1.4 cm and bingo the fireworks went off I SLEPT 8 HOURS.

Do not expect this to happen by itself. Do not expect the Doctors to be able to spend the time required to tweak the settings, or even know how to. Do not give up until you have tried everything that the machines are capable of. They put these settings in there for a reason-some people NEED them.

What were the results of your sleep studies? CA, OA, hypopneas? Get the manual for your machine and find out what the settings are, even the hidden settings. Install sleepyhead and read the data off your machine (I assume that it is data capable with an SD card in it, if not get your Doctor to get you a new machine that is data capable). post some plots and work with the very knowledgeable people around here and fight for your sleep.

Some mornings I just lay in bed with the mask on thinking how wonderful it is to just breathe! I took so much for granted. As for your statement about 60 or 70 years, let me clue you in when you get to that point it will matter BIG time. 61 here, double bypass, two stents, COPD, Sleep Apnea, diabetic type 2 and I used to say exactly the same thing as you are saying-oh to do it over. Do NOT go down my path, fight for every single day you can get.

Just my personal opinion. My posts are not medical advice or a statement of fact. Please consult a qualified physician or other qualified medical personnel. Please comply with all applicable laws, codes, regulations, and protocols.
07-08-2016 05:36 AM
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PoolQ Offline

Advisory Members

Posts: 986
Joined: Jul 2015

Machine: AirCurve 10 VAUTO
Mask Type: Full face mask
Mask Make & Model: Amara View
Humidifier: Integrated
CPAP Pressure: 6.2, 15, PS4.0
CPAP Software: SleepyHead

Other Comments:

Sex: Male
Location: Sillicon Valley

Post: #10
RE: extremely tired all the time. need advice.
Die hard CPAP, you got that right. I only told the truth. Have a great day.
07-08-2016 11:34 AM
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