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Newbie Greetings to the Apnea Nation
#1
Newbie Greetings to the Apnea Nation
Hi, I'm new to the board and recently diagnosed with severe sleep apnea. I've been on my machine for about two weeks, and I really struggled for the first week and half, getting little sleep. Then within the last few days I made some adjustments that have me sleeping like a baby. My AHI went down from the 13-15 range to 5 virtually overnight, and I'm feeling wonderful.

The thing that helped me was adjusting the EPR from 2 to 3  AND turning off the humidifier and ClimateLine. I think the air was just too warm and making me feel like I was suffocating. Kind of like the steam room effect at a health club. I had a little dryness last night so I'll probably try to increase the humidity just a tad, but I'm certainly not using the automatic climate control again.

I came to this not knowing a thing about sleep apnea, with my primary care physician referring me to the sleep clinic because I was in such bad shape that I couldn't stay awake at work even after sleeping 15 hours. I've learned SO much in the last month, and I now realize of course that even after 15 hours I wasn't really sleeping at all. My sleep study showed an AHI of 67, and I'm told that is severe, but I'd be interested to compare my AHI with the initial AHI for others here if anyone is willing to share.

I know this is a learning process, and I'm sure there are rough spots ahead, but I'm just happy there is help for this condition and hope for returning to a halfway normal life. I literally felt that I was only months away from death before I started treatment. I simply didn't have the energy to do anything except 'sleep' and the brain fog was about to get me fired my job. Obviously, I am now very much committed to my APAP therapy. I have to make it work, and I WILL make it work because it's really my only chance at getting my life back.

I'm looking forward to talking and sharing tips with everyone in the days ahead.

Thanks,
The Slumber Queen  Dreaming
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#2
RE: Newbie Greetings to the Apnea Nation
Hi SlumberQueen,
Welcome to Apnea Board!

It sounds like you've done some research and you have a great attitude. So I have no doubt you will adapt easily.

If you've downloaded the OSCAR software, you can post a screenshot of the daily page, then we can take a look to see if there are any other adjustments to optimize your therapy. Use the link below to guide you in setting up your graph, taking a screenshot and then use the attachment feature to post here. Be sure you have an SD card in your Apap.

My initial AHI was 37. The first week using Cpap, even with wide open settings 4-20, it dropped to 6. It wasn't until I found this forum and heeded the advice given that I could bring my AHI to under 2. Now, mostly I stay between .5 and 1.5.

The hardest part is finding the right mask and controlling leaks.

Feel free to ask questions. Someone is always available to help. And visit the Wiki... lots of good articles.
OpalRose
Apnea Board Administrator
www.ApneaBoard.com

OSCAR Chart Organization
OSCAR - The Guide





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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#3
RE: Newbie Greetings to the Apnea Nation
I was in the 90's, you were lucky, you were falling asleep at work, I was on my way to and from work,. My Rx was 19 fixed and I was given a brick which couldn't deliver that much pressure and was told it was good enough. My second diagnostic was many years later but was supposed to be a split study then a bilevel titration.  Well I technically didn't sleep enough for the first study to count.  That showed a "marked improvement" to 77.

Download and post an OSCAR chart periodically just to check on how You are doing.
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#4
RE: Newbie Greetings to the Apnea Nation
Thanks, OpalRose.

Glad to hear that I'm on the right track. Like I said, I HAVE to make it work. My life is just unsustainable without this treatment.

Yes, I've downloaded both OSCAR and ResScan. I've downloaded my data to both of them to see which one I like best. I only had a week and a half of data, but I was amazed at how much information is captured by my little machine.... even the notations about when I changed the settings. They both look like excellent tools, but I kind of lean towards OSCAR because it seems to be more geared more towards the patient rather than the sleep professionals.

I guess I lucked out on the mask. I instinctively chose the F&P Simplus, and I've had almost no problems with leaks except that I had change the cushion from large to medium. It's also relatively comfortable with one of those cotton covers around the silicon seal. My seal readings are nearly always 5 out of 5. I also ordered the Mirage Quattro and tried it for one night, but it was awful. Both the feel and the leaks were intolerable. I didn't feel that I would really benefit with just the nasal mask because I think I would open my mouth too much. Nevertheless, I think I might be able to rethink that further down the road, but right now I'm fine with the full face mask. You have to learn to walk before you can run with the grownups, and I'm still an 'infant,' so to speak.

Thank you for sharing your AHI. It helps me put mine in perspective.

Looking forward to talking again.

The Slumber Queen
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#5
RE: Newbie Greetings to the Apnea Nation
Hi, Gideon.

Wow, I'm honored to get a reply from an OSCAR project member. I've only perused the program briefly at this point because I have so little data, but I'm impressed with all the data that's available. It is really a wonderful tool. I'm familiar with open source, being a bit of a Linux enthusiast. Open source programmers are a special breed.

Speaking of DME, therein hangs a tale. That is to say, I was left hanging on two separate occasions when the DME didn't show up after I waited around all day. I eventually decided to just forgo dealing with the DME and my insurance company and just buy the equipment out of pocket. I purchased everything from Supplier #1, and they were very helpful in getting a newbie like me set up. I was very pleased with all aspects of the service and the equipment.

Thanks for sharing your AHI. That is quite the story. It puts my AHI in perspective. At least I wasn't driving when I fell asleep!

Look forward to speaking again.

The Slumber Queen
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#6
RE: Newbie Greetings to the Apnea Nation
Let me add my welcome and my congratulations on your taking such an active role in treating your severe apnea. Well done! It's especially happy news that you've found a mask you like -- that can be so hard.

Do share a screenshot of a Daily chart from Oscar. To get the chart ready, be sure the calendar and pie chart (if any) are turned off so that valuable information in the left panel will be visible. Turn the right panel off if necessary. Then stack your graphs like this:

Events
Flow rate
Pressure
Leaks
Snores
Flow limitations.

To get all of those graphs into one screenshot, grab the horizontal gray bars that separate the graphs and move them up a little. No need to include any other graphs.

I'm betting the people here can help you fine-tune your settings to get your AHI down even further.
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#7
RE: Newbie Greetings to the Apnea Nation
I neglected to add that before I was diagnosed with SA, I was getting approximately 1 to 2 hrs sleep, and I can't really say how I arrived at my job safely.

I remember getting in my car going from point A (my house) to point B (work) a 30 minute drive, but don't know how I got there. It seemed like a total blackout for me. Only through the grace of God, did I manage to get there without an accident. Seems scary when I think back.
OpalRose
Apnea Board Administrator
www.ApneaBoard.com

OSCAR Chart Organization
OSCAR - The Guide





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
RE: Newbie Greetings to the Apnea Nation
Welcome to Apnea Board!   
  I had about fifty-eight events/per hour.    Severe obstructive apnea.    I drank a lot of coffee, for years.    It was always hard to wake up.    I 've had   three sleep studies over the past  ...thirty years?    OK, so I'm not young.    I probably should have had CPAP therapy years ago, even when diagnosed with  "mild" obstructive apnea.     
I guess I had a lot of DENIAL--like an alcoholic not wanting to believe he has a problem.    And of course I didn't see myself  NOT BREATHING  at night.   I scared my husband .      He sleeps better now, too.   
I 've had my machine three years,   but I still feel NEW at this.    I've learned a lot since I really found Apnea Board,   maybe six months ago.     My sleep therapy has improved.   
 It is so good that you are learning about these things already!
There is such a wealth  of information here, and a willingness to help, too.    Keep us posted.   Shy
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#9
RE: Newbie Greetings to the Apnea Nation
Welcome SlumberQueen.......

This is the place to get help with tailoring the machine to your personal needs. Wish I had found this board a few years ago, instead of getting vague answers from techs and doctors on what I should be doing. I am enjoying my new mask and machine and find myself sleeping much better than I did on the old machine.

I feel the same way about the humidity. Think I turned mine to '2' to add just the right amount of humidity to the air flow. On my old machine the humidity warmer settings were on the top, and when dusting it was easy to move the dial higher. First rain-out I ever had!!

On the DME front....I inherited my previous (2nd) machine, and with various DME suppliers, I found it easier to buy online too. I was able to talk a couple of my insurance companies into paying part of my expense. Always nice. We'll see how things go with the new supplier. Always had good service from Supplier #1.

A statistic I read when I started this 20 years ago stated, "The largest group of drivers involved in single car accidents suffered from sleep apnea." Accidents lead to fatalities, so I had no problems getting used to wearing a damn mask all night.

Post a couple of daily charts from Oscar when you get a chance. I even post from my Linux

Welcome!!
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#10
RE: Newbie Greetings to the Apnea Nation
martyedb, it's nice to see there is another Illinoisan here. Of course, you'll probably say that I'm not from Illinois, I'm from Chicago. LOL! To everyone else that's wondering what I'm talking about... it's an Illinois thing.... just pay it no mind. Actually, even though I was born and raised in Chicago, my father is from southern Illinois so I've spent a lot of time down your way.

I'm a big coffee drinker too. Coffee is like one of my best friends. Coffee makes you whole, as I always say. But maybe that was because I was always so tired.

I'm in the same boat. I had people suggest for years that I had sleep apnea, but I would never take a sleep study. I was too afraid of the diagnosis, and I dreaded having to sleep with that machine forever. It was especially relevant years ago because I hold a Commercial Drivers License and worked as a truck and bus driver. I was afraid I'd be fired if I had a sleep apnea diagnosis. I still maintain my commercial license, but I no longer drive professionally, except occasionally for friends who need me to drive their moving truck down to Florida for retirement. LOL! Nevertheless, the apnea got so bad I couldn't ignore it anymore, and strangely enough, it wasn't as difficult as I feared to adjust to the machine. I could really kick myself for not facing this problem twenty years ago when I really could've had a better quality of life.

Thanks for sharing your AHI. Based on the numbers people have mentioned, I guess I really DID have a severe case. At first, I was just kind of thinking that the doctors probably say that to everyone just to get the patient to take it seriously. In my case, it seems to have been true. Nonetheless, I was still taking it seriously anyway because life was just unmanageable for me.

Look forward to talking to  you again.

The Slumber Queen    Bed
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