How to know if something is wrong?

Okay, I am reading a number of posts, trying to do what everyone suggests, research. And I can not tell you how appreciative I am of it all. I decided to start a new topic though it is kinda sorta covered in some other topics.

I see all these posts about "which mask does what" and "should I have the machine that tells me more than just the hours I use it" and DME and AHI and all these other letters and I have no idea what it all means when it comes down to it.

Here is my info:
I'm 34, been tired since HS, told I have Chronic Fatigue Syndrome and am on anti-depressants for it. My thyroid is about to go at any time now (I'm making antibodies for non-existant bugs so my thyroid will eventually shut down) which is officially called Hashimotos Disease. I have minor fibromyalga.

I quit smoking, gained 60 or so lbs and have an average of 34 episodes an hour (is that my AHI?) I am now 5'6" and 210lbs, should be about 150lbs.

I went to see a neurologist once, he ordered the sleep test thinking I had hypersomnia. Sleep Lab sent me home before doing the hypersomnia test because I had apnea. Had another sleep lab test with the machine and mask they had there, she determined the setting should be 9.

A week later a guy from the supply place (is this a DME?) came by, gave me my basic machine and a swift nasal pillow and explained how to turn it on, how to ramp it and how to set the humidifier. Oh, and how to clean it.

Then he left and I went looking for this forum.

I know that neither my mask nor the pillows are "comfortable" but I am getting used to them, and am assuming that eventually I will pretty much ignore them. I figured out that at least at this time of year, if I use the humidifier I get rainout (I do know that's what it's called from you guys, thanks).

I know that I wake up earlier than I usually do, but am not rested. I know that I am supposed to wait for some time, weeks or months before saying "nothing is happening."

But I don't know if I should be looking for another machine, how do I know if this is or is not working? Though Rested Gal, who I think we should just refer to as "Our Sainted Mother" from now on, (I mean that with all respect, I am not trying to be sarchastic or anything) has great things to say about different masks and machines, there are others who don't like the things she does like, and vice versa.

So, basically, how do I know when I should call this neurologist again (whom I've only seen that once), do I ask my regular doc call him? What do I ask her to say? How do I know if I want one of the machines that I can check all sorts of data on my computer with? By the fact that I created that list of jobs from the Curiosity Postings, you all know that I am pretty into data and looking at it. But would I just get obsessed with it if I could look at my data?

Is there a place where we can find out what all the initials mean?
Is there a Dr. Suess book like "Oh The Places You Will Go" called "So Now You Have Your First CPAP Machine..."
I don't know the difference between a CPAP, BiPap, AutoPAP and I don't know what to look for to determine if I need something other than what I have.

"I have always relied on the kindness of strangers" so to speak, in other words, I go to my doctor every year (or more) and say "this is whats wrong" she then says "This is what your problem is. Take this drug, or do this exercise, or use this machine" and I do it. Who am I to know if it is working or not.

Okay, another rant from Quest496 done with. If nothing else this forum is REALLY good as a place where I can say whats on my mind and know that even if no one responds, I am getting it out. My personal journal is only so good as me reading it ten years from now and laughing at how much I ranted about my OSA. (I know know that one means too.)

thanks so much. Pretty soon you will all see my name on a post and run screaming.

Quest

BTW, I have looked at the CPAPopedia, so the rant about the initials is more rant than reality. It's just part of the frustration of not having a clue if I'm shoving a mask on my face each night for nothing.
Quest

Hey Quest:

Believe me you are not alone. I've only been at this two weeks and am only sleeping 3-4 hours on the machine.

I was diagnosed hypothyroid 2 years ago. I should have been to the doctor 6 years ago. I should have had the sleep study 6 years ago also. The thyroid and sleep problems started around the same time. There are a number of opinions on the thyroid boards that hypothyroidism ( My TSH was 111 when I was first diagnosed) can also lead to sleep apnea problems.

Best of luck to you. I am not in a position to offer advice as i'm still in the looking for it stage too.

Hi quest,

I'm no saint and never had kids, but thanks for your much too kind words.

You're absolutely right that equipment one person likes or what works for them could be awful for someone else.

have an average of 34 episodes an hour (is that my AHI?)

Yes, that's your AHI. AHI of 34.

btw, I smiled when I saw you quote this line from one of my all time favorite plays (and especially the film of it with Vivien Leigh and Marlon Brando):
"I have always relied on the kindness of strangers."

I really don't know how long a person should wait before contacting a doctor again if things seem to be progressing slowly or not at all, on cpap treatment. It does take time for some...measured in small improvements that might be so gradual they are missed.

Since you're keeping a personal journal, I'm sure you're noting every small step forwards and backwards. Perhaps in a few more weeks you'll think, "Ahah, I really am doing better in this or that regard than I was pre-cpap."

Whether a person obsesses with data from these machines or takes a laid-back approach to looking at it from time to time, I do think seeing the data can be helpful. If for nothing more than reassurance in looking at (hopefully!!) a better AHI than what turned up in the sleep study.

If it's any consolation, I was completely overwhelmed for months trying to figure out what message board people were talking about when they threw out all those acronyms, and shorthand names for various machines and masks. Took me a lonnnnggg time to understand the differences between types of machines. I can still get it wrong! LOL!!

Good luck, quest. You're a thoughtful, analytical person who will do well...I'd bet on it!

Thank you for your responses, it does seem to help a lot to be able to rant and have people give me a virtual pat on the back to know that we have all been there.

Thanks for noticing the kindness of strangers quote RG. I had the honor of presenting Kim Hunter before a showing of the Streetcar film a few years before she died. (Ms. Hunter played Stella, though became better known as the female scientist in the Planet of the Apes films). It was very interesting to hear details about working on the film, not just with two such spectacular actors but with such a powerful script.

(This was not meant as a name dropping moment, just merely a point of connection with someone who commented on the phrasing I used. Not that I think anyone would think I was name dropping, I mean...oh gosh darnit, I'm over analyzing what one tiny fraction of people might think about a post. Emoticons only help so much.) Okay. See even when I am not ranting about CPAP I talk too much. I wish I never learned how to type sometimes.

Quest

LOL, quest!

On second thought, perhaps the software should be kept out of your reach!