Frustrated...unsure where to go what to do!

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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mzdawn74
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Frustrated...unsure where to go what to do!

Post by mzdawn74 » Tue Oct 06, 2015 4:07 am

Hi all,
Before I begin let me put it out there that I have the ResMed Airsense10 CPAP machine, which has no ability to get any other info other than leak rate, ahi, and time used each night. I use my machine every night when I sleep (3-5 hours). I get ahi levels of anywhere from 0-0.5 being the highest. My leak rate varies from 14-17 lmp. I do wake up with minor dry mouth, but I always have green smiley faces every morning.

I have major concerns that I am not seeing any positive improvements since starting my cpap journey at the end of June. I have had zero relief in the major cognitive impairments, energy level, or quality of sleep that brought me to the neurologist in the first place, which resulted in the initial diagnosis of minor sleep apnea.

I am really getting concerned now as to what is exactly causing my confusion, lack of concentration, poor memory, and over decline in my cognitive abilities. I have now seen a cardiologist, rheumatologist, psychiatrist, my primary care provider, aND my neurologist. All of the doctors insist that my issues are attributed to depression, anxiety, insomnia, and my minor sleep apnea.

My questions are these:
1.If I'm getting such good numbers on my ahi and leak rate, am I getting good therapy?
2. Is there any other way to check therapy effectiveness?
3. Should I be seeing results by now?
4. Is it possible that my untreated depression, anxiety, and insomnia are the cause of my impairmenrs, therefore I wouldn't necessarily see a major improvement in my symptoms?

I know you are not doctors, I'm just really frustrated and feeling hopeless at this point. I am going to begin antidepressants next week, but that doesn't help how I'm feeling now. I'm just looking for your thoughts, suggestions, and opinions.

Thanks in advance.

I apologize if this post is incoherent and lacks flow..blame it on my brain.

Dawn

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Julie
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Re: Frustrated...unsure where to go what to do!

Post by Julie » Tue Oct 06, 2015 4:22 am

Your note is very coherent, very concise and you may well be stressing for nothing, at least about some of your cognitive issues which may be more subjective than otherwise. What are the chances that you can afford even a lightly 'used' machine from e.g. Secondwindcpap.com (or someone on the forum), that gives better data than the Elite, one that you can use SleepyHead with... downloaded free from the forum?

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Re: Frustrated...unsure where to go what to do!

Post by zoocrewphoto » Tue Oct 06, 2015 4:41 am

Even awesome sleep at only 3-5 hours per night is NOT enough.

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hpm08161947
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Re: Frustrated...unsure where to go what to do!

Post by hpm08161947 » Tue Oct 06, 2015 5:06 am

Is that 3 to 5 hours that you sleep? Or 3 to 5 hour that you use the machine per night?

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49er
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Re: Frustrated...unsure where to go what to do!

Post by 49er » Tue Oct 06, 2015 5:11 am

zoocrewphoto wrote:Even awesome sleep at only 3-5 hours per night is NOT enough.
Exactly and without a data capable machine to analyze the data which according to you, your neurologist refused to provide a prescription for, he is shooting in the dark. Let me clarify.

I have had nights where my AHI looked great but thanks to Sleepyhead being able to flag breathing events that didn't qualify as apneas/hypopneas, the data didn't look as wonderful. Now I can't claim that is the cause of my problems sleeping on the machine and perhaps nothing like that is going on with you but my point is without having the data to look at, your doctors are shooting in the dark.

Regarding this comment:

""All of the doctors insist that my issues are attributed to depression, anxiety, insomnia, and my minor sleep apnea.""

Even on an unmoderated board, I don't want to repeat what I am thinking when I see comments like this by your doctors. I guess my question is what have your doctors done to troubleshoot your issues? What has your sleep particularly done? Are you currently taking any sleep medications that perhaps are having a rebound effect?

Have you been checked for nasal potency issues as nasal obstructions can cause problems with sleeping on the machine?

49er

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49er
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Re: Frustrated...unsure where to go what to do!

Post by 49er » Tue Oct 06, 2015 5:27 am

Dawn,

Another question. Why are you going back on antidepressants? Not asking to be critical but concerned because it seems to me the depression is from not sleeping and your concerns about your cognitive function deteriorating. 'It just seems like a bandaid solution to me but obviously I am not in your situation.

If you are going to go the med route, wouldn't it make more sense to find a sleep med that works if you haven't gone this route?

49er

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archangle
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Re: Frustrated...unsure where to go what to do!

Post by archangle » Tue Oct 06, 2015 7:22 am

While it's criminal to not have a fully data capable CPAP machine, since the cost is minimal, your good AHI numbers are indicating it's working to some extent.

Why are you only getting 3-5 hours of sleep?

Do you have your results from your sleep study? What was your AHI?

One thing to try would be a slightly higher pressure.

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Re: Frustrated...unsure where to go what to do!

Post by gonesouth » Tue Oct 06, 2015 7:42 am

Hi Dawn,

My first comment is be very sure before going the antidepressant route. My wife had clonazepam prescribed on the basis that "if it cures it, you have anxiety.....if not we'll keep looking" When she finally decided they weren't helping, she spend the days from 8 weeks huddled under a blanket on the couch shaking, trying to get through withdrawal..........drugs are not my favorite approach!

I would see if you can get the cpap working......when mine is on track, I feel good and energetic, my blood pressure is down, my mind is clear...............when it's not the BP goes up, my mind is foggy, and I sleep 15 or so hours a day, and it's not safe for me to drive.

Is the machine functioning correctly - warm moist air, no loud leaks whether your mouth is open or closed, when your respiratory tech reads your machine card is the leak rate acceptable, how many apneas do you get? Lets start there.

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Christine L
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Re: Frustrated...unsure where to go what to do!

Post by Christine L » Tue Oct 06, 2015 7:49 am

mzdawn74 wrote: I sleep (3-5 hours)
Honey, you just aren't getting enough sleep for any mammal. That will drive your brain off the edge.

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LSAT
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Re: Frustrated...unsure where to go what to do!

Post by LSAT » Tue Oct 06, 2015 7:50 am

archangle wrote:While it's criminal to not have a fully data capable CPAP machine, since the cost is minimal, your good AHI numbers are indicating it's working to some extent.

Why are you only getting 3-5 hours of sleep?

Do you have your results from your sleep study? What was your AHI?

One thing to try would be a slightly higher pressure.



Her original post gives her AHI (0-0.5) and I would not recommend raising her pressure without knowing what her current pressure is.

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Re: Frustrated...unsure where to go what to do!

Post by Pugsy » Tue Oct 06, 2015 8:41 am

mzdawn74 wrote:I get ahi levels of anywhere from 0-0.5 being the highest. My leak rate varies from 14-17 lmp.
I thought the plain AirSense 10 CPAP machine didn't have leak data....I knew it had generic AHI data.
mzdawn74 wrote:I use my machine every night when I sleep (3-5 hours).
Not enough hours of sleep even if it is rock solid and not fragmented.

Why so little hours of sleep?
Mask or leak issues? Bed comfort?
Just wake up and don't know why and can't sleep more?

Gotta have more than 5 hours of sleep to have any hope of seeing any improvement.

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Re: Frustrated...unsure where to go what to do!

Post by chunkyfrog » Tue Oct 06, 2015 8:56 am

If she has an AS10 Elite, she needs to download Sleepyhead and look at the event record.
If the machine is the "CPAP", a FULL DATA machine is indicated.
So many things can interfere with sleep- meds, caffeine, stress, exposure to toxins--
all in addition to the things doctors look at.

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Re: Frustrated...unsure where to go what to do!

Post by 49er » Tue Oct 06, 2015 9:00 am

She mentioned in her first post that she has the ResMed Airsense10 CPAP. Of course she can clarify.

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yippeekia
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Re: Frustrated...unsure where to go what to do!

Post by yippeekia » Tue Oct 06, 2015 9:12 am

You have come to the right place. There is help here.

I think you should work on improving your sleep and sleeping longer. Before CPAP I only slept 5-6 hours a night and thought that that was all I needed. Now since working on my sleep hygiene I sleep 9.5 hours on a good night. Boy was I wrong thinking I only needed 5 hours.

I would listen to advice on how to improve your sleep. It is all about taking care of the little things that wake you up.

Best of Luck!

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Re: Frustrated...unsure where to go what to do!

Post by kteague » Tue Oct 06, 2015 3:44 pm

Hi MzDawn. Is there a possibility you could ask your doctor to order a 1 or 2 week trial on a fully data capable auto machine to see if the data reveals any issues that need resolution? On which end of the night is your lack of more sleep - do you have trouble getting to sleep or waking up too soon? It could be your OSA treatment is not the issue. That's why I suggested the trial on an auto, to rule this out.

What is the status of your PLMD? I know we've talked a lot in PM's a while back and I was wondering how you are doing. Is there any resolution there?

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