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Here is my story. Any suggestions or advice you have are appreciated.
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kameeleun Offline

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Post: #1
Here is my story. Any suggestions or advice you have are appreciated.
I need help. Please help me.
Some backstory:
All my life people had told me I had to just 'force myself' to stay on a normal sleep schedule, and then I'd 'adapt'. What finally got me to the sleep doctor was that I really, really kept trying to 'force myself' while in grad school, and I finally stubbornly managed to 'force myself' for almost a month before this big test I had. I was walking around like a drunk person, that's the only way I can describe it. I failed the test, can you imagine. I re-read what I wrote after a while and it was nonsense, it was like a stranger had written it.
So I had my first sleep study in 2011, it showed I had mild sleep apnea (I think I was a 7 AHI and all obstructive type apneas if I recall correctly). I started CPAP and I adapted to it fine, I'm so tired I never have any problems sleeping with it on. The machine always says my AHI is really low, like usually around 1 and a lot of times it's even less. Before CPAP I napped all the time, and if I napped I was fine but if I 'forced myself' not to nap I'd get a couple days in and break down and have a nap because I was delirious, but I have to admit that now on CPAP I can push through most days without absolutely *needing* a nap (not that I don't want one pretty bad, I just mean I don't get weirdly delirious without it now). Some days I still *need* the nap, it's just much less frequent. So I guess I have to admit that CPAP must be doing something.
Anyway, two years go by. I was still un-livably sleepy during the day, so I went back for another sleep study in the summer of 2013. This time the sleep doctor also did a daytime sleep latency test. I fell asleep for four of the five naps really quickly, but one nap took me nearly 20 minutes and pushed up my 'average latency' just above what the doctor says he needs for an official diagnosis. I knew exactly which nap it was, because the door to the lab got left open during that one and the clinic staff was super duper loud moving files around and it was also during a heat wave and the climate control wasn't great to begin with, so it was super noisy and crazy hot but I still fell asleep it just took closer to 20 minutes. My doc acknowledged this and worked out my average without that nap and it was crazy, like three minutes or something, and since he knew I have ADD he said even tho he can't officially diagnose me with something like "idiopathic hypersomnia" he can write to my psychiatrist about all this and get her to prescribe what he'd prescribe anyway.
Then I had a baby and things got a little messy in the middle, I had a home study at one point to adjust my pressures because I got super fat, then I lost the baby weight and the pressures had to be re adjusted down. That's all fine now.
Now here I am, two years later again and I'm just so tired still. I sleep right through my stimulants. I'm scheduled to go see the sleep doctor again. I've always been compliant with my CPAP, although I did figure out I had to start taping my mouth shut along the way. My machine says my apnea is perfectly controlled, and my pressure isn't even very high (because my apnea is mild to begin with...) but I'm still CRAZY TIRED. I'm in a constant brain fog, and it's ruining my life.
I'm early 30s now but my first sleep study was in my late 20s, I'm normal weight, normal neck size, I don't really 'fit the profile' for obstructive sleep apnea.
To complicate matters I just learned about that sleepyhead program and I downloaded my data and the vast majority of my 'event's are 'clear airway' with some hypopneas. Also, if I just scroll through the flow rate for the night there are tons of weird things in it that aren't marked as 'events'. I have no idea if this is reliable tho, and my machine only keeps the flow rate data for a week, so I'm planning to just keep downloading it so I have more of the flow rate data for my upcoming appointment. I did some basic googling and I read about cpap therapy inducing central apnea, but from what I've read it seems like there's a lot of skepticism as to whether or not that's a real thing, or if it's a thing that lasts longer than, like, a week.
I'd really like to start looking into the root cause of my sleep apnea/daytime sleepiness, since complying with treatment isn't improving things much. My sleep doctor appointment isn't until December, so there's time to go to the family doctor and have some investigations done but I don't know what to ask for. I also don't know what to make of this flow rate stuff. I've had some basic blood tests, things like anemia and hypothyroid, and that's all been ruled out. I don't know what else to ask for.
I'm so confused and I'm so tired. Please help me. Is there any advice you can give me?

TL;DR: Mild sleep apnea, low pressure, super compliant for roughly 4 years. Crazy tired still, going back to doctor in December. What should I ask for? What should I look into otherwise? Any other advice? What the heck to I make of all these 'clear airway' events in sleepyhead?
10-30-2015 10:54 AM
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cate1898 Offline

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Machine: PR System One 560BT Auto
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Other Comments: Began CPAP Therapy Sept. 11, 2015. Hx Hypertension, Post Graves Disease, chronic migraines.

Sex: Female
Location: Southern Ontario//SW Florida

Post: #2
RE: Here is my story. Any suggestions or advice you have are appreciated.
Welcome to the forum! It's a good place to be for answers and hopefully you will get help soon.

Just wondering if you've been diagnosed with SA and it appears in the mild range based on your number of 7, wondering if there is something else going on that may be causing your extreme tiredness? Are you still compliant with your CPAP machine?

I'm sure someone else can chime in and help you with the SleepyHead results as I don't reallly understand them myself. Good luck!

APNEABOARD - A great place to be if you're a hosehead!! Rolleyes

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EVERY ACCOMPLISHMENT BEGINS WITH THE DECISION TO TRY!
10-30-2015 12:49 PM
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OpalRose Offline

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Location: Northeast Ohio, USA

Post: #3
RE: Here is my story. Any suggestions or advice you have are appreciated.
kameeleum,
Can you look at sleepyhead and tell us what your AHI number is. Also the breakdown of your AHI, hypopneas, Obstructives, clear airways.

OpalRose
10-30-2015 12:56 PM
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trish6hundred Offline

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Machine: Resmed S9 AutoSet for Her
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Other Comments: I started CPAP in 2008. Totally blind since birth.

Sex: Female
Location: Missouri, USA

Post: #4
RE: Here is my story. Any suggestions or advice you have are appreciated.
Hi kameeleun,
WELCOME! to the forum.!
Hang in there for more responses to your post and much success to you in getting your problems straightened out.

trish6hundred
10-30-2015 04:15 PM
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kameeleun Offline

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Machine: resmed s9
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Post: #5
RE: Here is my story. Any suggestions or advice you have are appreciated.
(10-30-2015 12:56 PM)OpalRose Wrote:  kameeleum,
Can you look at sleepyhead and tell us what your AHI number is. Also the breakdown of your AHI, hypopneas, Obstructives, clear airways.

Here is last night:
AHI 0.87
Clear Airway 0.43
Obstructive 0.14
Unclassified Apnea 0.00
Hypopnea 0.29

Some nights are more and some are less, but mostly it seems like 'clear airway' and 'hypopnea' are the majority of my events in the data, which is strange because in my original sleep study I think I only had obstructive events.

I noticed I have some weird stuff happening in the flow rate graph that doesn't get glagged, but I don't know what's weird enough to cause a problem. If I wanted to define some user flags what are some good starting points in terms of time vs flow % to set? For instance, I seem to have a ton of really long ones if I set the user flag to 50% but I don't know if 50% is low enough to cause a problem. Meanwhile, I have a smaller number that get flagged if I set it to 20% but and 8 seconds, but I don't know if 8 seconds is enough to cause problems.

Still, even with all these user defined events added to my AHI, it would most nights still be around or below 5, which I understand still counts as 'under control' for apnea.
10-31-2015 11:21 AM
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sonicboom Offline

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Post: #6
RE: Here is my story. Any suggestions or advice you have are appreciated.
kameeleun:

here is a thread discussing another condition called UARS. You might check this out and see if it applies to you.

http://www.apneaboard.com/forums/Thread-...roarousals

I hope you find the relief you need ASAP.

Coffee
10-31-2015 11:38 AM
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kameeleun Offline

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Posts: 14
Joined: Oct 2015

Machine: resmed s9
Mask Type: Nasal pillows
Mask Make & Model: swift fx (for her?)
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CPAP Pressure: 6
CPAP Software: SleepyHead

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Sex: Female
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Post: #7
RE: Here is my story. Any suggestions or advice you have are appreciated.
Thank you, I'll make sure to ask my sleep doctor about this.

Some stuff is similar to my situation, but some stuff is different. For instance, I have very cold hands and feet to the point that I'm supposed to go get evaluated for Raynaud's disease, but at the same time I certainly don't suffer from insomnia...
11-03-2015 12:06 PM
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robertbuckley Offline

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Sex: Male
Location: New York, NY

Post: #8
RE: Here is my story. Any suggestions or advice you have are appreciated.
Has anyone mentioned if they were seeing Alpha wave intrusions that correlated with your arousals? If so, there may be some meds to help block those during your sleep. This is all tricky stuff, and there can be multiple things going on, which makes it so much harder to treat. Remember, it is the practice of medicine - in other words, sometimes they gotta practice to get it perfect. Good luck.
11-03-2015 04:24 PM
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kaiasgram Offline

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Post: #9
RE: Here is my story. Any suggestions or advice you have are appreciated.
(11-03-2015 04:24 PM)robertbuckley Wrote:  Has anyone mentioned if they were seeing Alpha wave intrusions that correlated with your arousals?

I also wonder about this. I'd be interested in seeing the reports of the two sleep studies, and whether RERAs, PLMs and other spontaneous arousals were recorded and reported.
11-03-2015 04:33 PM
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Ghost1958 Offline

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Other Comments: Moderate to Severe SA Obstructive. Rapid O2 desat off the machine.

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Post: #10
RE: Here is my story. Any suggestions or advice you have are appreciated.
Just my take is your probably having ling durtion events.
That you probably need auto and a higher min pressure. Too low a pressure can result in both oa and ca.
11-04-2015 12:55 AM
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