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I could use some advice.
#1
I could use some advice.
I don't believe that I've kept it a big secret that I haven't been all that impressed with my SA Therapy. It will be two years for me in early Sept. I still feel tired and not as refreshed as I had hoped. 

My AHI #'s are very good, and I don't have any real issues or problems to complain about. Other, than the fact, that I don't feel any different. Maybe my expectations were too high, or that two years just isn't a long enough of period for it to kick in, so to speak. 

Anyways, I have an appt. with my sleep doc on May 6. I was going to level with him and let him know that I'm close to wanting to just be done with it and quit. 

I've given this a lot of thought, really! I don't want to turn him against me and write me off in regards to Medicare. Obviously, I'm having 2nd thoughts about all of this and the way I thought that I was going to handle it.

I'm not seeing the hours of use that I used to see. I'm making sure that I hit my min. 4 hrs. of use per night, 70% of the time. My last appt. with him, he did give me some grief over the number of hours. I can raise those numbers easily enough. All I have to do, is do it. Generally speaking, I'm seeing 5-6 hrs. of use per night. 

If any of you have any suggestions, advice, or tips, I'm all ears. I keep saying that I'll learn how to use Oscar and post up some results. I'll need my step-son's help with that though. 

Anyways, I guess I'm saying that I don't want to burn any bridges with my sleep doc. And, I don't want to battle with Medicare over this.
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#2
RE: I could use some advice.
I wish I could tell you whatever it might be to help figure out why you've not gotten the benefit of CPAP. The fact is I don't know. I would think that by now there should be a benefit. I know for my Complex apnea and COPD, it took a few months for me to begin feeling better for use. And that was with several years of untreated apnea.

Has there been any discussions or consideration that something else medical is below the surface hindering this working well?

However it turns out, I wish you the best.
Dave

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#3
RE: I could use some advice.
You have been around long enough to figure out the pros and cons of the therapy. You're a big boy, and I'm not going to sit here and plead with you not to quit. If it works for you, you know. You probably have all the information you need to optimize therapy, and certainly could ask if you wanted our advise. You sound conflicted my son, and yet you know the answer. All you "have to do is do it" or ask. That said, your complaint is common among CPAP users and once therapy is optimized, it can be frustrating when problems continue. I usually tell people to look outside of the CPAP therapy for issues. Personally, I have been through this for many years, with a major illness five years ago (Lyme meningitis) that left me wiped out. I don't know that I have ever felt the same since.
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#4
RE: I could use some advice.
There are many stories of apnea sufferers complaining of fatigue and sleepiness even after years of fully-compliant CPAP use. I am one such.

I persevere because I don't feel any worse, but my AHI is down from 47 (pre-treatment) to around 2 today. I have heart disease (one heart attack so far) and I know that apneas put strain on the old blood pump.

My theory is that 'CPAP sleep' isn't good sleep, but is compromised in some way, perhaps only for some of us.

For this reason, I have long toyed with the idea of having another sleep test, but this time while using my APAP machine. Obviously my AHI should be OK, but I wonder what my sleep quality looks like to an expert.
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#5
RE: I could use some advice.
You know you are getting a presumed benefit, but you don't see that it matters.  The way you feel, you wonder how much worse it would be to simply stop the activity.  At the same time, there is tension between this desire and the guilt you know you'd feel for abandoning something that should work, and probably is working, but doesn't make you feel like you're deriving all the benefits of 'normal' sleep.

Have you consulted a sleep specialist and/or a neurologist?  If you have, have you consulted another pair of them to compare their feedback and observations?  At some point, your mind will tell you that, with your numbers saying you're getting good treatment and decent quality sleep, the rest is your new normal.  Just because they found out you have apnea, and that it seems to be treated by the numbers, doesn't mean you weren't also slipping into that realm of age-related Z,Y, and X that ain't what they were 25 years ago.  Almost everyone over the age of 50 begins to suffer poorer quality sleep if for no other reason than they have to void once or twice per night.  Some even have apnea.
Serial Tapist
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#6
RE: I could use some advice.
Big Guy,

If your AHI is significantly better than the AHI they found during your sleep study, the cpap therapy is helping you have better sleep even if you can't feel any difference.

I have only been using my machine for less than four months, so I have less experience than many others.  I don't think I feel much different either.  But, I went on the therapy because I went into atrial fibrillation, and my heart doctor said it is often caused by sleep apnea.  Sleep apnea also can cause or contribute to numerous other health problems which I'm sure all of us want to avoid.

I guess I'm just saying that feeling better is not the only issue.  Protecting your overall health is an important thing to consider too.

Best of luck with whatever you decide to do!

Deborah
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#7
RE: I could use some advice.
Thanks to all for your replies, suggestions, and advice. They are appreciated!

I'll have a talk with my sleep doctor this coming Wednesday. The thought of continuing this therapy for a few more years, if not the rest of my life, is very daunting, to say the least.  Oh-jeez

During my two night, in-lab sleep studies, my AHI #'s were 60 during REM sleep, and 70 during reg. sleep. Since having started my therapy, there was once I believe that my AHI was a little over 5. Typically, they are well below that. Last night it was 0.3.
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#8
RE: I could use some advice.
Big Guy,

I'm not certain you really want advise as much as the need to know others out there are feeling what you feel. I assure you the answer is yes. I'm running ahead of you in the age category, about 8 years and have put my body through pure hell. I smoked 30 years then quit 26 years ago. Like you, I had a heart attack. Followed by a triple heart by pass, atrial fibrillation, Diabetes, sleep apnea (20 years before treatment) and  recently survived prostate cancer. Now I am facing double hip replacement. My biggest disappointment is not being able to do the things I could do when I was younger.

I have been on Cpap therapy for 3 years and maintain -1.00 most times and about ten "00's" per month. You would think I was on top of the world. No, I am just "old". I have put on lots of mileage with much wear and tear. I'm sure the benefits of SA therapy has taken a lot of strain off my heart and for that I am grateful. It has allowed me to watch my great grandchildren grow and allowed me to be recipients of there love.

I say all that in hopes you will look around. Savor your blessings and think on all the good things in your life. I doubt there are very few of us who will ever feel like we did when we were younger.

Mike
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#9
RE: I could use some advice.
Maybe there are other issues. Have you had a full blood test? My AHI is 5 or below most nights yet I feel like I wont make it more than a year, and I'm 35. I have a history of bruxism, sinus infections, nasal congestion, headaches, reflux and anxiety. The symptoms that have creped up the last couple years are fatigue and irritability. I have no idea my issue, if I don't figure it out soon I will continue to head downhill. I'm already on the verge of divorce because I'm so irritable from lack of sleep. I think it may be a gut issue for me. Gut issues can cause so many other issues like anxiety. And then anxiety can cause sleep problems, etc.
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#10
RE: I could use some advice.
(04-30-2020, 06:38 PM)Big Guy Wrote: I don't believe that I've kept it a big secret that I haven't been all that impressed with my SA Therapy. It will be two years for me in early Sept. I still feel tired and not as refreshed as I had hoped. 

My AHI #'s are very good, and I don't have any real issues or problems to complain about. Other, than the fact, that I don't feel any different. Maybe my expectations were too high, or that two years just isn't a long enough of period for it to kick in, so to speak. 

Anyways, I have an appt. with my sleep doc on May 6. I was going to level with him and let him know that I'm close to wanting to just be done with it and quit. 

I've given this a lot of thought, really! I don't want to turn him against me and write me off in regards to Medicare. Obviously, I'm having 2nd thoughts about all of this and the way I thought that I was going to handle it.

I'm not seeing the hours of use that I used to see. I'm making sure that I hit my min. 4 hrs. of use per night, 70% of the time. My last appt. with him, he did give me some grief over the number of hours. I can raise those numbers easily enough. All I have to do, is do it. Generally speaking, I'm seeing 5-6 hrs. of use per night. 

If any of you have any suggestions, advice, or tips, I'm all ears. I keep saying that I'll learn how to use Oscar and post up some results. I'll need my step-son's help with that though. 

Anyways, I guess I'm saying that I don't want to burn any bridges with my sleep doc. And, I don't want to battle with Medicare over this.

When I started on CPAP therapy, I noticed that I felt slightly better (A little more perked up in the morning Big Grin ), for around 2 weeks. Then back to normal for me. Dont-know
AHI's are low to zero. Cool
I've had several Masks, now on FF (Nose and Mouth). I've had several Sleep Specialist, of which I have burned bridges as I am still very cranky, nearly everyday.
From a lot of reading, my only conclusion is some other under lying sleeping problem.
For me, as a child, I felt, (and mostly remember), that I would crawl into bed, read, fall asleep. Maybe 20minutes.
Since hormonal teenager, it takes hours to fall asleep, regardless of how tired I feel.
I am now taking some herbal sleep tablets, that work for me, along with (Over the Counter)Melatonin. It can NOW take up to 2 hours to fall asleep, most nights around 30minutes.

Overall
I don't feel any better, or more refreshed. Just poorer, since starting CPAP therapy. I get the strong feeling, from the multiple "sales" people that it's more scam, then medical.

Thinking-about My current thoughts are something (packing tape) over the mouth to prevent snoring. I've attempted to go a night without the CPAP machine, only to feel worse. It's like pain killing drugs. You feel better taking them, and when you stop, you feel worse as your body has adapted.
There will be a period of adjustment when my CPAP machine fails.

I keep thinking, maybe we need an alternative to cpap forum... or sub-forum
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