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#1
Hello, there! My name is Katie. I reside in the southern USA. I'm 27 and was just recently diagnosed with sleep apnea.

*** CAUTION: I like to write a lot. Eat-popcorn ***

I went to a doctor about the possibility of living with undiagnosed ADD. My whole family has it, all diagnosed except one stubborn member. But we know what it looks like by now! I eventually was also diagnosed with ADD, which made me feel better because I was losing my mind! After learning about it at length, I was shocked I'd made it this long without treatment. I'm a perfectionist and overachiever by nature, so I guess that's helped me out. But life got too much to handle - apparently common.

Anyway! Smile On my new patient questionnaire, I got an ESS score of 15. I was informed this was unusually high and, before he would treat me for anything, I needed to get a sleep study. I am all for preventive medicine and making myself a healthier person whenever I get the chance (though I'm fighting the eternal struggle with food, I try to help myself in all the other areas possible while I battle the belly). So I agreed to a sleep study, paying the full price out-of-pocket (horrible state insurance with an outrageous deductible that is never met despite spending over $5,000 on health-related goods and services that require my insurance card).

I fully expected to be woken in the middle of my study and have a CPAP put on me. SA is another thing many, many members in my immediate and extended family have. Being compliant with therapy changed my grandparents' lives and they would never go without their "breathing machine," as they called it. I never wanted it, because I mistakenly thought it was an obesity-related disease. I know better now; my grandparents were not even obese, so I'm not sure why I thought that was true.

But I was not hooked up to a mask or machine. The sleep tech noted he thought I slept pretty soundly, even though I had barely slept and kept waking up. He said I didn't toss and turn, but I was basically tied down with all of those wires! The one time I moved, I disconnected one and had to reattach it.

When my results came in, my ordering physician told me, "Welcome to the club... of people that have sleep apnea." He was relieved "that" is what it was. I requested a copy of my results, because I'm interested in all things science and wanted to review them later. When I did, I noticed I only had an AHI of 4.4, despite my doctor saying my apnea was not mild in our discussion. Of course, I looked online and saw at least a 5 is considered mild, if not borderline, and may or may not require therapy. He wasn't trying to sell me a machine, I don't think. He even told me to go through the sleep physician at the hospital where I had my test. He didn't write me orders or anything for one. He even gave me a number for where he gets his CPAP, telling me I needed to look into Auto-CPAPs vs. having to go in and get a titration test every so often.

Even though my score was so low, I researched and wanted to follow his advice. Of course, any machine I got would be paid for out-of-pocket. As I mentioned, I work for the state, and we are notoriously underpaid. I cannot afford another $400-$600 out-of-pocket payment for anything right now. I called the number and they said they would need orders and have me go take tests and -- it was too much. I thought, at best, I could get a machine in January when I have my medical card back that I'd already maxed out this year.

In July, I very unexpectedly lost my grandmother (71) to pancreatic cancer. She was healthy, active, had quit smoking years before, and all the women in her family (ALL of them) have lived to be over 100. However, her mother took a drug when she was pregnant meant to reduce the risk of miscarriage. As a result, she had 2 rare gynecological cancers in her 40's and 50's. Upon further research, I learned her lifespan would have already been shortened because of this drug, and that it was common to die from another, usually quickly advancing, cancer. She was my last grandparent, her husband having died in 2011 from lung cancer (smoker of 50+ years).

I mention this because, remember, my grandma had a CPAP that she swore by. We've been cleaning and going through things. (I lived with her because she was just the most awesome lady, and you couldn't ask for a better roommate - plus, she might've spoiled me like I was a kid again.) So I pulled out her machine. To my absolute delight, I saw the word "Auto" on it. And in cleaning out her room, we found TONS of supplies to go with her machine. Which really surprised me, because she had used the same mask and tubing forever. The mask was starting to fall apart! (Yes, I know, need to change it, etc Smile ) Grandma was still looking after me, even now.

We had thrown her mask and tubing out. But she had a brand new mask in a bag stowed away. I just had to buy some $7 tubing. She had the Phillips Respironics System One Auto REMStar with A-Flex and heated humidifier.

I knew absolutely nothing about it, except how to turn it on, so I decided to just try it out for a night on grandma's settings. I guess maybe the months of not being used got to the machine, because the screen severely lags or is not responsive at all when the dial is turned. With some patience, I was later able to change the settings.

But the first night was amazing. I think I woke one time. When my alarm went off, I woke up only 10 minutes later. Usually, 2 hours after I wake, I am so sleepy and dying for a nap - no matter where I am - that I either have to drink coffee or shut my office door and sleep for my lunch hour. But that day, I was fine! No urge to sleep. I got tired at a normal time that night. I was sure my life had been changed!!!

My doctor had also put me on Provigil and Adderall. Two stimulants I was told and thought wouldn't possibly allow me to fall asleep during the day. But they didn't do anything. My focus was better, as long as I chose to focus on the right thing. But I could still sleep, with no problem, and I still got sleepy at my usual time. That is what pushed me to seek out a CPAP, hoping it would be my salvation. And, for the first night, it was.

Then I figured out I could get the dial to work again with enough patience. That's when I discovered it was not on auto, but on my grandma's prescribed pressure of 9 cm. With no option available to change it to auto, I went to Google and was ultimately led to ApneaBoard. I learned how to change the settings and flipped it to Auto and turning the humidifier on.

The next night I slept okay, but the pressure stayed on 4. I felt like I was suffocating, but I was sure it would increase. Of course, it didn't. When I used it on 9 before, I used the ramp feature and it started at 4. Calm enough to go to sleep before increasing the pressure.

Last night, I decided to up it to 6. Quite a jump, since it increases by 0.5, but 4 was miserable!

I slept okay, still waking often to roll over. And this morning I got out of bed a little easier than normal, but I'm still tired and in a fog.

I'm researching everything I can. Maybe I don't need a machine? But I can't deny how helpful it was the first night. And if 2 morning stimulants and one in the afternoon isn't enough to keep me awake, what is!? Am I destined to be tired and feeling like I have early onset dementia forever?

Upon Googling, I saw a little test you could take (really a form) where you entered your height, weight, etc, and it would tell you a rough estimated pressure to start out on. I got 9. But I am so hung up on my AHI being so normal that I don't really know what to do!

If I can't figure it out, I'll go back to the doctor, of course, but I won't be able to afford that until January. So any help or advice you all may be able to share would be incredibly welcome. And I would apologize for the long post, but it's just who I am. Rolleyes Hopefully you've read and are able to offer some advice!

Thank you for your time! I hope to learn a lot here.

PS - I've downloaded my user, service, and provider manual as well as EncoreBasic (though I've not been able to set it up yet on my home computer).
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#2
Hi s1eepy - Welcome to the forum!

Good luck on your journey.
______________________
Useful Links -or- When All Else Fails:
Posting SleepyHead Charts in 5 Easy Steps
Robysue's Beginner's Guide to Sleepyhead
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#3
Wow, you like to write!

You are doing great with this thing all on your own. Self titration will be a lot easier if you download the free SleepyHead program. Just use that link, install it on a laptop or desktop, and you can use the 2-GB SD card in the back of the machine to read your results. While Grandma's results might be interesting, you're going to have to delete them. You can reformat the SD cart to FAT32, and reset the machine therapy hours and compliance data from the provider menu. Just turn the dial to Setup, press the control knob and ramp button for at least 5-seconds, and after you hear the beep, go tot he Info screen and select therapy hours and I forget the name of the other resettalble data, but they will be there.

The same method also gets you access to the provider setup menu, where it appears you are already changing pressures. I would suggest using Auto mode, you are currently at a minimum pressure of 6, and you can keep increasing that until you are comfortable or all obstructive apnea is eliminated. Get the provider manual at the link at the top of this page for CPAP Setup Manuals.

Welcome, and don't let all the old people here scare you away. Smile
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#4
(10-21-2016, 08:53 AM)Sleeprider Wrote: Wow, you like to write!

You are doing great with this thing all on your own. Self titration will be a lot easier if you download the free SleepyHead program. Just use that link, install it on a laptop or desktop, and you can use the 2-GB SD card in the back of the machine to read your results. While Grandma's results might be interesting, you're going to have to delete them. You can reformat the SD cart to FAT32, and reset the machine therapy hours and compliance data from the provider menu. Just turn the dial to Setup, press the control knob and ramp button for at least 5-seconds, and after you hear the beep, go tot he Info screen and select therapy hours and I forget the name of the other resettalble data, but they will be there.

The same method also gets you access to the provider setup menu, where it appears you are already changing pressures. I would suggest using Auto mode, you are currently at a minimum pressure of 6, and you can keep increasing that until you are comfortable or all obstructive apnea is eliminated. Get the provider manual at the link at the top of this page for CPAP Setup Manuals.

Welcome, and don't let all the old people here scare you away. Smile

Haha!! I do like to write. I find this all so fascinating and love to learn new things, so I go overboard on the details. Rolleyes Bag-head

Thanks so much for your reply! I will do this tonight.

And thanks for the welcome, Crimson Nape!
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#5
Hi sleepy,
Welcome to Apnea Board!

Sounds like you've done your homework. As Sleeprider suggested, go into the provider menu and delete your Grandmothers' data. Reformat the SD card, or just buy a new one.
Also, it would be a good idea to change the filters. (Back of machine)
Download SleepyHead software. It is much better than Encore Basic, but I use both just to compare.

Set your machine to Auto mode, with a minimum pressure at 6 or 7cm. You can leave the max pressure at default 20cm for now. The machine wont go any higher than needed.
You can find your 90% pressure reading on the System One display. Watch this for awhile (preferably with SleepyHead software), and then we can advise you on narrowing your pressure where
is is more ideal for you.

Sorry for the loss of your Grandmother. She would be happy you are taking control of this situation early on. Good Luck!
Sleep-well
OpalRose
Apnea Board Moderator
www.ApneaBoard.com

How to Organize and Post ScreenShots

http://sleep.tnet.com/resources/sleepyhead/shorganize
https://sleep.tnet.com/reference/tips/imgur

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.




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#6
(10-21-2016, 09:40 AM)OpalRose Wrote: Hi sleepy,
Welcome to Apnea Board!

Sounds like you've done your homework. As Sleeprider suggested, go into the provider menu and delete your Grandmothers' data. Reformat the SD card, or just buy a new one.
Also, it would be a good idea to change the filters. (Back of machine)
Download SleepyHead software. It is much better than Encore Basic, but I use both just to compare.

Set your machine to Auto mode, with a minimum pressure at 6 or 7cm. You can leave the max pressure at default 20cm for now. The machine wont go any higher than needed.
You can find your 90% pressure reading on the System One display. Watch this for awhile (preferably with SleepyHead software), and then we can advise you on narrowing your pressure where
is is more ideal for you.

Sorry for the loss of your Grandmother. She would be happy you are taking control of this situation early on. Good Luck!
Sleep-well

Interesting! Much appreciated. Eager to load this program tonight. I had already removed her card from the machine. The data will be interesting, but I have no problem erasing it.

She really would be happy - haha! I would nap on our couch and I'd wake up to her looking at me awfully funny. She'd tell me, "You need a breathing machine." Thought she was crazy! I snore a little, but it's quiet snores (I used a sleep recording app to verify and the sleep tech even 'noted soft snores,' haha!). But she'd say, "You weren't snoring, and you weren't breathing either!" Yeah - she'd be happy Smile

Losing weight (as I've been working at for awhile now, successfully so far) will help, but my doctor said apnea would eventually catch up with me in time. I'm all for prevention!
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#7
sleepy,
Just to let you know that the PR System One machines retain all the data in the machine, so if you insert a new card it will just rewrite all the prior data back to the card. That is why you want to erase the data from the machine.

If you want to keep your Gramma's data, just keep the SD card, and buy a new card and insert it in cpap after you deleted prior data.
OpalRose
Apnea Board Moderator
www.ApneaBoard.com

How to Organize and Post ScreenShots

http://sleep.tnet.com/resources/sleepyhead/shorganize
https://sleep.tnet.com/reference/tips/imgur

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.




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#8
Hi s1eepy,
WELCOME! to the forum.!
It's great to hear that you are taking care of your sleep apnea, it sounds like you are doing well, keep up the good work. Your Grandma would be happy that you are using her "breathing machine."
I wish you much success on your CPAP journey.
trish6hundred
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