14 Months on CPAP and Still Painfully Tired

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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Pugsy
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Re: 14 Months on CPAP and Still Painfully Tired

Post by Pugsy » Tue Mar 21, 2017 10:02 pm

Thank you for the FL graph. It looks a bit worse than it really is due to the scale but there is still some activity there and likely the cause of the pressure changing a bit. Not uncommon.

I asked about fixed pressure because some people find that the variations in pressure in apap mode sometimes disturbs their sleep and they don't get the disruptions with fixed pressure.
Since you already have tried fixed pressure then it's unlikely that the apap changing pressures are the problem.
It was just something I always ask just in case it's an option that hasn't been tried when someone isn't feeling the good numbers.

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tan
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Re: 14 Months on CPAP and Still Painfully Tired

Post by tan » Wed Mar 22, 2017 10:15 am

You can tell a good sleep from bad one after just one night. If improvement doesn't come within a week, something should probably changed.

even minor leaks with its hissing-swishing can disrupt one's already bad sleep, so can flow limitations (if you are sensitive). Do you experience dry mouth upon awakening? Even with a full face mask, it's a possibility.

You said "average of 11 occurrences an hour from your sleep study... Is it AHI alone? What about RDI? Some doctors ignore that, but it can be significant

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Re: 14 Months on CPAP and Still Painfully Tired

Post by supertiredperson » Wed Mar 22, 2017 10:42 am

tan wrote:You said "average of 11 occurrences an hour from your sleep study... Is it AHI alone? What about RDI? Some doctors ignore that, but it can be significant
What is RDI? Can I just call my doctors office and get this information?

Also, last night I got a great nights sleep. Not a 'back to my old self' kind of sleep, but it wasn't bad. Only a light, dull headache and minor tiredness. However, I get these 'good days' every now and then, but the good feeling never lasts the whole day. I feel 'good' for maybe 5 hours, and then it feels like I have to go to bed or lay down.

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Re: 14 Months on CPAP and Still Painfully Tired

Post by tan » Wed Mar 22, 2017 11:43 am

supertiredperson wrote:
tan wrote:You said "average of 11 occurrences an hour from your sleep study... Is it AHI alone? What about RDI? Some doctors ignore that, but it can be significant
What is RDI? Can I just call my doctors office and get this information?
You are entitled to a copy of your sleep study. Once again, your leaks and FLs remain prime suspect, IMHO.

What about your exercise?

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Pugsy
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Re: 14 Months on CPAP and Still Painfully Tired

Post by Pugsy » Wed Mar 22, 2017 11:58 am

RDI is Respiratory Disturbance Index.

https://en.wikipedia.org/wiki/Respirato ... ance_index

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Re: 14 Months on CPAP and Still Painfully Tired

Post by supertiredperson » Wed Mar 22, 2017 12:34 pm

tan wrote:You are entitled to a copy of your sleep study. Once again, your leaks and FLs remain prime suspect, IMHO.
I'll get a copy and post it here
tan wrote:What about your exercise?
Not nearly enough. I go hiking at least once a week, and I really do get a good workout, but its not enough. I've been meaning to start going to the gym again, but I just keep making excuses, and on my bad days (which are still pretty frequent), I just count the day as a loss and hope for a better day tomorrow. I suppose I suffer from a touch of social anxiety and depression as well. The truth is, I have no physical ailments that would prevent me from working out more, other than just being flat out exhausted all the time. I've been meaning to get a membership at a gym nearby, just so I can walk long distances on the treadmill for exercise.

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Re: 14 Months on CPAP and Still Painfully Tired

Post by supertiredperson » Wed Mar 22, 2017 3:18 pm

Does Flow Limitation mean that my airway is preventing/not allowing air to flow? as in UARS?

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tan
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Re: 14 Months on CPAP and Still Painfully Tired

Post by tan » Wed Mar 22, 2017 3:56 pm

supertiredperson wrote:
tan wrote:What about your exercise?
Not nearly enough. I go hiking at least once a week, and I really do get a good workout, but its not enough. I've been meaning to start going to the gym again, but I just keep making excuses, and on my bad days (which are still pretty frequent), I just count the day as a loss and hope for a better day tomorrow. I suppose I suffer from a touch of social anxiety and depression as well. The truth is, I have no physical ailments that would prevent me from working out more, other than just being flat out exhausted all the time. I've been meaning to get a membership at a gym nearby, just so I can walk long distances on the treadmill for exercise.
I see what you mean. Been there too.
Considering that muscle tightness may contribute to a bad sleep, I would rather gradually start with body-weight exercises (google them, something like https://www.youtube.com/watch?v=Y_n0UwQMz5o or less sophisticated) before going to gym and stretching (but don't go too fanatical about it) that helps relax before the sleep.

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Re: 14 Months on CPAP and Still Painfully Tired

Post by palerider » Wed Mar 22, 2017 7:03 pm

supertiredperson wrote:Does Flow Limitation mean that my airway is preventing/not allowing air to flow? as in UARS?
watch: https://www.youtube.com/watch?v=-gie2dhqP2c

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Re: 14 Months on CPAP and Still Painfully Tired

Post by tan » Wed Mar 22, 2017 8:45 pm

supertiredperson wrote:Does Flow Limitation mean that my airway is preventing/not allowing air to flow? as in UARS?
In looking at your "almost perfect" stats, it's fair to say OSA is treated, but there is something else, which may be UARS as well, which kinda fits your profile. Though you machine reports almost none, I am not sure how accurate that reporting is. Besides, anxiety/depression can alone screw up your sleep. In my case, optimizing my PAP-therapy helped me get rid of anxiety/depression symptoms. Not sure what to do in your case, since you already started having centrals. Shows us a few days but in a normal format as instructed by Pugsy (no pie chart, no calendar; event flags, leaks, pressure, flows limitations should be visible; no need for mask pressure). Also, it looks like you have a ramp feature is on. I would switch it off and make sure that your mask isn't leaking in the range of pressure you are using.

Rob K
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Re: 14 Months on CPAP and Still Painfully Tired

Post by Rob K » Wed Mar 22, 2017 8:50 pm

Just in case you don't know. A lot of medical facilities now have online accounts which give you access to your medical records. I was able to get my sleep study information by logging onto my providers website. Didn't need to call or show up in person to get a copy. It was quick and painless.

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Re: 14 Months on CPAP and Still Painfully Tired

Post by supertiredperson » Thu Mar 23, 2017 2:56 pm

tan wrote:Shows us a few days but in a normal format as instructed by Pugsy (no pie chart, no calendar; event flags, leaks, pressure, flows limitations should be visible; no need for mask pressure). Also, it looks like you have a ramp feature is on. I would switch it off and make sure that your mask isn't leaking in the range of pressure you are using.
Will do, but I couldn't figure out how to get the pie chart to go away, how do you do that? I did recently start taking St. Johns Wort, I've tried prescription antidepressants/antianxiety meds in the past, but they were truly awful. I also think the root problem is my lack of quality sleep, I was never like this before the SA set in. I was active, played sports, was in the military, had hopes and dreams, etc. But for the last 9-10 years, it's as if my life was put on hold while I try and get this sleep thing fixed, and I have not done a lot of things I would have liked to do in my 20's. I think some of my depression/anxiety comes from regretting not following through with my passions and goals, and just, sitting on the sidelines of my life waiting to play again.

I'm also sorry to everyone who reads my posts for the venting and negativity. I stopped talking to others about my struggles with sleep apnea a long time ago. People either treated me like I was exaggerating/making it up, or worse, that they think they have it too. So I just starting keeping it to myself, aside from doctor visits, and close members of my family. Even then, I feel like I'm just complaining and annoying people. So it's nice to talk about with others who understand.
Rob K wrote:Just in case you don't know. A lot of medical facilities now have online accounts which give you access to your medical records. I was able to get my sleep study information by logging onto my providers website. Didn't need to call or show up in person to get a copy. It was quick and painless.
Good call. I did call yesterday, and asked them to mail me a copy, because they said they couldn't email it. One would think they would have suggested that when I called in asking for it, but you never know. I will double check with them to see if this is an option.

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Re: 14 Months on CPAP and Still Painfully Tired

Post by Pugsy » Thu Mar 23, 2017 4:04 pm

How to turn off the pie chart.
In SleepyHead go to Preferences then Appearance tab...there you will see a line that says "show pie chart"...just remove the check mark.

Though if all the statistics are shown with the calendar gone I really don't care about the pie chart so much.

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Re: 14 Months on CPAP and Still Painfully Tired

Post by Rob K » Thu Mar 23, 2017 7:01 pm

You don't need to apologize for the way you feel. Maybe others that you have been around don't want to hear it, but from what I've seen the forum members are quite willing to listen and help. They all have been through it and understand your suffering. Sometimes the only way your going to be able to move forward is tell people what's going on so you can get the answers and help that you need.

Many people with apnea are in the same situation as you or have been in the same situation. You may have already discovered this by reading the forum. Apnea and chronic sleep deprivation can severely affect our physical and mental health. From my experience, people that don't have it have a hard time understanding how bad it can be. Often they think you just need to change your behavior to get on with life. I found even our closets friends and family, who care about us the most, will think this way. The world still has a long way to go with education, understanding and treatment of this often debilitating disorder.

When people come here for help, fairly often the main problem is that their therapy is inadequate. Apparently a lot of people are not getting proper treatment from medical professionals. It's a good place to start when trying to find answers and resolution. Usually the first subject that comes up when you post on the forum is proper therapy. If it truly is a problem, after being corrected, often the other things begin to resolve themselves or are easier to resolve.

I was in the same situation as you and I'm now starting to get back on the path of life instead watching it pass by or slip away. I wish you the best and will be glad to listen and help if I can.

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Re: 14 Months on CPAP and Still Painfully Tired

Post by supertiredperson » Fri Mar 24, 2017 9:44 am

Pugsy wrote:How to turn off the pie chart.
In SleepyHead go to Preferences then Appearance tab...there you will see a line that says "show pie chart"...just remove the check mark.
Thank you, it was driving me crazy that I couldn't figure this out
Rob K wrote:You don't need to apologize for the way you feel
Thank you, I think this is the first time someone has ever told me this.

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