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[Treatment] Feeling noBetter
#1
I have been using a ResMed Airsense 10 for over a year now due to a sleep study showing an AHI of 24 events per hour. The AHI was much higher during REM sleep. Also had PLM although they did not seem to correlated with the worst sleep disturbances. Also severely fragmented sleep. For years I have woken up feeling terrible and way beyond tired and feel like why did I even try to sleep? No wonder!

The thing is in over a year the CPAP has made not one bit of difference in how I feel when I get up or during the day The machine works-  the AHI us usually from .30 to 2 or 3 events/hr. On medicine for the PLM. Been tested blood, vitamins, minerals, different other conditions/body functions that might affect things. No depression and did see a cognitive sleep behavior therapy guy even. I use the cpap from 6 or 7 hours a night down to 4 or 5 sometimes because it often uncomfortable. And yes tried different masks etc with the nasal pillows seem to be working the best. Not obese either but maybe could loose 10 or 15 pounds just like most people could. I'm health and 65 years old.

I believe the sleep doctors I go to here in Maine are top notch. They have suggested a 3rd sleep study even. I hope I don't discourage anyone. I read all the stories of the good results others get after whatever adaptation time they need and just wish I could report the same.

Has anyone else experienced the same? Did things change after so long a time with no luck? Is there something way out of the ordinary that the sleep doctors miss at times? Thanks for your comments.
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#2
Wilky,

I am sorry to hear that you've been using the machine for a year and still don't seem any real improvement in how you feel.

You ask:
(05-08-2017, 08:05 PM)Willky Wrote: Has anyone else experienced the same? Did things change after so long a time with no luck? Is there something way out of the ordinary that the sleep doctors miss at times? Thanks for your comments.
I had an absolutely horrible adjustment period to CPAP: During the first three months of PAPing, I felt at least 10 times worse than I did before my diagnosis.  (I only went for the sleep test because my husband was concerned about the fact that I appeared to stop breathing during the night several times a week and my snoring was getting worse.)

My lifelong off and on insomnia kicked in with a vengeance within a week of starting CPAP.  After two months of agony, my sleep doc's PA suggested switching me to a bilevel machine.  That required sleep test number 3.  Which showed just how awful my insomnia actually was, along with the fact that it was worse than I subjectively thought it was: I thought I got about 4 hours of sleep; in reality I got less than 2 hours.  But the BiPAP was more comfortable when I was lying in bed fighting to get to sleep.  It took a month before I sorted out exactly which bilevel machine to order from my DME. By the time I picked up my BiPAP, I was finally ready to accept that I needed some real help reining in the insomnia.  The PA worked out a CBT-I program for me, and I had follow-up meetings with her once or twice a month.  I had a four sleep test after the insomnia log made it clear I was still struggling with therapy itself. After the fourth sleep test, the PA switched me to a tight auto bilevel range.  

And after another month or two of cognitive behavior therapy for insomnia (CBT-I), I started to notice a few positive notes in my sleep log.  At first I was writing things like, "Woke up with no headache" and "Woke up with no hand or foot pain" a couple of times a week.  After a few more weeks, the days where I was waking up with no headache and no pain were regularly outnumbering the days where I woke up with a headache or with hand or foot pain.  That was the first sign that xPAP was doing something positive for me.

By the time I was 9 months into PAPing, I was functioning and feeling about as well as I had before my OSA diagnosis during the daytime, although the absence of morning headaches and the morning hand and foot pain was a noticeable improvement.  And things continued to improve, although they improved very, very slowly for me.

Sometime during my second year of PAPing I actually became aware of the fact that I really was finally starting to feel better than I had in years.  My sleep was still a long way from "perfect", but I had started to wake up feeling rested and even sometimes refreshed most days.

Three years after I started PAPing, I had to go without my BiPAP for a few isolated days. The first time I had to not use the BiPAP, I was literally shocked at how awful I felt the next morning and I felt exhausted and fatigued the entire day: That experience made it clear to me that the way I felt when waking up and how well I functioned during the day had been continuing to slowly, but subtly improve during the time I had been using the BiPAP.

I'm now just over 6 1/2 years into PAPing.  My sleep is still a long way from "perfect" and there have been two prolonged periods where I and my sleep doctor have had to work hard in getting my various sleep problems under control (again).   I have had several periods where problems with spontaneous arousals have played real havoc with my sleep, and consequently with how I have felt.  But overall I wouldn't give up my BiPAP now: When my OSA is properly controlled by the BiPAP, my insomnia is controlled by a combination of CBT-I techniques and judicious use of Belsomra, and my circadian rhythm problem isn't too out of whack with when I need to be awake and alert, I feel pretty good these days.

You also write:
Quote:Also had PLM although they did not seem to correlated with the worst sleep disturbances.
....
On medicine for the PLM.
Would you say the medication is controlling the PLM?  Or do you not have a good idea about whether the PLM is under control?

Even if the PLMs were not correlated with the worst of your sleep disturbances on your original sleep test, they might be the root cause of your current ongoing problems.  Sometimes untreated OSA masks a real problem with PLMs: The apneas and hypopneas cause you to arouse before the PLMs have a chance to mess up your sleep.  But once the OSA is properly treated with CPAP, the apneas and hypopneas are no longer causing you to arouse, and that allows the PLMs to start causing arousals. And with the PLMs messing with your sleep, you don't feel any better even though the CPAP reports a nice low AHI every night.

You also write:
Quote:No depression and did see a cognitive sleep behavior therapy guy even.
How long did you work with the cognitive sleep behavior guy? And if you don't mind sharing, what kinds of things did he have you do?  The reason I ask is that my own CBT-I was quite involved and I met with the PA who was directing it once or twice a month for five months or so.  A critical part of the process is establishing realistic goals. In my case, a major goal was getting to sleep much faster since I was so uncomfortable using the BiPAP while lying in bed awake. And once I got uncomfortable enough, I had real problems getting any meaningful sleep at all. But achieving that goal took a lot of very hard work.  If you want to know more, just let me know.

You also write:
Quote:I use the cpap from 6 or 7 hours a night down to 4 or 5 sometimes because it often uncomfortable. And yes tried different masks etc with the nasal pillows seem to be working the best.
Not all comfort problems are directly tied to the mask.  What kinds of things do you find uncomfortable when you have the mask on and you are trying to get to sleep?  Please be as wordy as you need to be in order to describe your specific problems.

(For what it is worth, I had a whole boatload of "comfort issues", none of which were tied to the mask I was using. But they were all things that I had to work out ways to handle before I was able to start feeling better.  I still have a few comfort issues that I have to be aware of, but at this point I know what I need to do to fix them.  

Finally you write:
Quote:I believe the sleep doctors I go to here in Maine are top notch. They have suggested a 3rd sleep study even.
I think another sleep study---with the titration machine set to your current CPAP settings---is a good idea.  That would allow you and your sleep docs to tease out whether the PLMs have gotten worse since you've been on CPAP. It would also help sort out whether you are still experiencing a whole lot of spontaneous awakenings. Finally, it would also establish whether you are getting some REM sleep and some stage 3 (slow wave sleep) while using your machine.

If you don't want to do another in-lab sleep study, it may be worth doing a home study while using your own CPAP machine.
Questions about SleepyHead?
See my Guide to SleepyHead
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#3
(05-08-2017, 08:05 PM)Willky Wrote: I have been using a ResMed Airsense 10 for over a year now due to a sleep study showing an AHI of 24 events per hour. The AHI was much higher during REM sleep. Also had PLM although they did not seem to correlated with the worst sleep disturbances. Also severely fragmented sleep. For years I have woken up feeling terrible and way beyond tired and feel like why did I even try to sleep? No wonder!

The thing is in over a year the CPAP has made not one bit of difference in how I feel when I get up or during the day The machine works-  the AHI us usually from .30 to 2 or 3 events/hr. On medicine for the PLM. Been tested blood, vitamins, minerals, different other conditions/body functions that might affect things. No depression and did see a cognitive sleep behavior therapy guy even. I use the cpap from 6 or 7 hours a night down to 4 or 5 sometimes because it often uncomfortable. And yes tried different masks etc with the nasal pillows seem to be working the best. Not obese either but maybe could loose 10 or 15 pounds just like most people could. I'm health and 65 years old.

I believe the sleep doctors I go to here in Maine are top notch. They have suggested a 3rd sleep study even. I hope I don't discourage anyone. I read all the stories of the good results others get after whatever adaptation time they need and just wish I could report the same.

Has anyone else experienced the same? Did things change after so long a time with no luck? Is there something way out of the ordinary that the sleep doctors miss at times? Thanks for your comments.

many things can disturb sleep other than apnea

if your AHI is low then look for another cause
noise lights hot/cold  pain ......
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#4
Hi have you had your Testosterone level checked? It worth a look to see if it is in range for your age as it diminishes with age. Some of us diminish a lot quicker than others.
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