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Anyone else have Sleep Drs that're only CPAP machine mills?
#1
In the past 5 years I've had two sleep docs so far that do not do anything beyond check on the machine's performance.

When I tell them I'm still exhausted, first of all I have to push push push with them to get them to listen and realize the significance of what I'm trying to tell them -- they essentially if not literally, respond only with "your machine is working fine."
One gave me Nuvigil Rx samples, sent me on my way, and, in not so many words, let me know I'm on my own about it all.

My life is ruled by my fatigue and has fallen apart.

And, yes, Ive taken the Nuvigil (Modafinil) for 5 months now which makes me feel like crap despite being more mentally alert but I can't tolerate feeling like crap from it. It also makes me feel tired and awake at the same time. I still feel physically tired but mentally alert. I'm still not productive.)

I am dangerously running out of options.


1.) is this unheard of / common?

2.) what alternatives are there?


thx
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#2
I gave up on DMEs 20 years ago, after the one I went to called me a liar, after they lost my records. I've been responsible for my own treatment since.  I'm new to the board, and wouldn't feel comfortable giving to much advice, but, I will say, that if you give more complete information on your equipment, and pressures, and download and use the Sleepyhead software, and post results, the good folks here, will very likely be able to give advice, that will help your situation. Good luck with your therapy!
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#3
One option is to post up the data from your therapy (if you haven't already) and give the good folks on the board an opportunity to advise you on possible improvements. Worth a shot, right?
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#4
Some things you might explore with a primary care provider, if you have not done so already, may ensure that some alternative explanations are ruled out, such as low thyroid, diabetes, other endocrine problems, autoimmune/arthritis type conditions, lung problems preventing effective breathing, and heart problems.
                                                                                                                                                                                  
Please organize your SleeyHead screenshots like this.
I'm an epidemiologist, not a medical provider. 
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#5
Hi there,

Your doctors obviously aren't the best, but you can find help here. To start I recommend the following:

1.Look up what model Dreamstation you have by pressing the My Provider button, there it will say Dreamstation CPAP or Dreamstation Pro or Dreamstation Auto (there are also BiPAP models).
Put that info in your Profile here and request a Setup Manual from this page here, for your specific machine. The link is at the top of this page.

2. When you receive the manual, use it to go into your settings and find out what minimum and maximum pressure it is set to. Alternatively it could be set to one fixed pressure. Post those findings also in your profile.

3. Download Sleepyhead software so you can look at the results of your therapy. The link to this is also at the top of this page.

After this, the wonderful folks here can tell you more about how to optimize your therapy, so you no longer feel exhausted. Please also follow Beej's advice to rule out other possible health complications. Don't loose hope, things can and will get better. You've made a good choice to come here!
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#6
Wow, emoji's are so 1998.

sorry I'm cranky.

thanks. I found out my dreamstation is a bipap pro. its got an humidfidsfer. works fine.

again, the docs all say the machine works fine.

so i'll get to the point, i wonder if my fatigue is residual fatigue. or whatever they call it.

in other words, living like this for so long the damage to the brain becomes permanent. that "residual" apnea/OSA or whatever the full term is.

now, about downwloading this sleep whatever. i am really reluctant to have to install stuff, sounds like a total hassle. what will it provide that i dont already know from the machine, the machine that i loathe having to tinker with only to find out after all that time and effort that it is not that necessary or relevant.



thank you for being willing to read my garbage! :-)  <---- old fashioned emoticon that works jussst fine!
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#7
Quote:now, about downwloading this sleep whatever. i am really reluctant to have to install stuff, sounds like a total hassle. what will it provide that i dont already know from the machine

Does your machine show you all of this?  :-P

[Image: pYdYuLZ.png]
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#8
.
.
.
Gee! Thanks lady, thanks for the seizure! Yowza!

No, my machine is a piece of chit! Lotsa useless bells n whistles, wahoo!

Not for me, man.

I'm just lucky I know how to work the humidifier without getting an aneurysm now.

What's this all aboot anyway?
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#9
While running a puppy mill, my Dr. studied at night to become a sleep Dr.
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#10
Free software, sleepyhead, shows you all that.
The basics.
Dump your doctor
Learn to set up your own machine pressures etc. Someone here can help you with that.
Download sleepy head so you can see what is going on, adjust your machine accordingly and stop being miserable.
Plenty of help here to do that if you want to feel better.
Or keep going to the DOC and everything will stay as it is now.

Just the way it is with Sleep apnea.
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