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+--- Thread: [CPAP] Diagnosis + prescription = Frustration... ApneaBoard + experimenting = Salvation! (/Thread-CPAP-Diagnosis-prescription-Frustration-ApneaBoard-experimenting-Salvation)
Diagnosis + prescription = Frustration... ApneaBoard + experimenting = Salvation! - OldVet - 11-27-2016
This is my first post. I know it’s a long one. I have been in the midst of a struggle with the medical system and my CPAP machine. My hope is that my story will help someone who is struggling with implementing CPAP therapy.
Thank you for the clinician's guide to my CPAP machine, which was provided by the Apnea Board staff. Additionally, the forum and its members have provided me with an incredible amount of practical information, which has enabled me to fix my CPAP issues. I am so very grateful for all of your efforts and the ground work you laid.
Here's my story!
Background: My name is Jim, I'm a 51 years of age with a wife and son at home. I have suffered from daytime sleepiness for most of my adult life. During the night, I snore incessantly and wake up gasping for air. My new PCP pushed for a sleep study. I’ve wiggle out of sleep studies in the past. Reluctantly I agreed.
Diagnosis: In August of this year, I went in for two overnight sleep studies. Right away the tech said, "We'll do the test, but you have sleep apnea." I was irritated with his declaration. I asked him what percentage of people that come through that clinic get diagnosed with sleep apnea. He said, "Pretty much everybody."
I completed two separate overnight studies. I never met the actual physician. As expected, I received a call indicating that I had been diagnosed with sleep apnea (details later in post). The gentleman said that I would be receiving a call from the DME supply company, so they could deliver my CPAP machine.
CPAP machine: I wasn't at home when the machine was delivered. This was my fault. He explained it’s operation to my wife. She had everything laid out and I read the materials. All I had to do was put water in the humidifier and hit the big button.
Philips Respironics DreamStation AUTO CPAP DSX500H11
Philips Respironics DreamStation Humidifier DSXHCP
Resmed Airfit F10 Full Face Mask, Large
Non-heated hose
I'm a mouth breather. During the night my mouth would open, teeth would dry out and I had condensation in the hose. The pressure was high to me, it was difficult to exhale, and I had trouble sleeping. I banished the machine to the closet.
Intervention: My wife said, "Oh no, everything is not Jim's way or the highway. You figure that damn machine out. I want you to be alive for years to come and I need to sleep too." The PCP put her cattle prod in as well.
Now what to do? I didn't feel as though the sleep clinic, or the doctor that I never talked to, would be of much help. I decided that my best option was "me". I needed to become educated on sleep apnea, my diagnosis and my CPAP machine.
Diagnosis revisited: I ordered a copy of my medical records from the sleep center. The two studies centered on stages of sleep and oxygenation. I had a face mask on for CPAP therapy at the second study. The technician's comment indicated, "He was placed on Auto CPAP of 15 with EPR of 3... maintained a SPO2 of 90 or greater once on the proper pressure setting."
The CPAP prescription indicated "CPAP pressure 15 cm H2O, ramp 10 mins, heated humidifier, Airfit F10 large mask."
Time for Jimmy to get educated!
Research: I started by researching sleep apnea. My first search led me to Apnea Board. What an amazing resource! I was able to get up to speed on ALL the information I sought - sleep apnea, CPAP, my diagnosis/prescription, mouth breathing, mask issues, my DreamStation, Sleepyhead and data analysis.
I requested the clinician's guide to my machine from Apnea Board. It was promptly emailed to me. Thank you again!
Putting the pieces together: Going back to the sleep study, the tech had me on Auto CPAP of 15 with EPR of 3. The doctor prescribed CPAP pressure 15 cm H2O, ten-minute ramp, but without any inhale/exhale relief noted.
I went into the clinician's menu on the DreamStation and went through EVERY setting. I then searched through Apnea Board for a technical description and usage experience for each setting. Once I had a better grasp of the machine’s capabilities, I then tried breathing with the machine at various pressures and settings.
The DreamStation uses Flex settings for inhale/exhale relief as opposed to EPR. After testing the machine, I felt I only needed relief on the exhale pressure. I decided on the following setup for a test night:
Auto CPAP
7.0 to 20 cm H2O
No ramp set
C-Flex set to 1 (lowest exhale relief setting)
Mask type OFF
AHI ON
Humidifier set to auto, the separate heat option set to 4
I chose to preheat the humidifier. Assume any other options are off.
Results: I woke up during the first night breathing through my mouth. I forgot to rig a strap to help keep my jaw closed. I grabbed a small velcro strap and attached it to the lower mask straps under my jaw. It worked perfectly and also helped to keep the mask sealed.
I pulled the SD card and ran the data through Sleepy head. AHI score of 2.67, high pressure reached was 11 cm H2O, average pressure 8.62
For the second night, I changed the Auto CPAP range to 8.5 to 15 cm H2O and did the strap under the chin. All other settings remained the same.
Sleepy head data was as follows - AHI score of 0.78, high pressure reached was 10 cm H2O, 90% pressure 8.5
I woke up twice during the night, but I don't think it had anything to do with the CPAP. I awoke the first time at 1am. I would have gone right back to sleep, but I couldn't help myself. I ran the five hours of data through Sleepyhead. The AHI was around 0.6! I fell asleep without the mask, but put it back on an hour or so later when I woke up the second time.
After making the adjustments to the CPAP machine, I can see the light at the end of the tunnel. I can sleep comfortably with the machine at the new settings. I understand it's only been two nights of results. However, I feel like everything is gelling together quite well.
They say luck is where preparation meets opportunity. I was able to properly assess the situation and make intelligent informed choices because of the efforts of those on this board. In case I forgot to mention it, "Thank you all!"
As a side note, I am pleased with the DreamStation Auto CPAP and Resmed Airfit F10 full face mask. The condensation problem in the mask hose went away. I’m assuming that has to do with changing the humidifier to Auto mode and preheating before use.
Hopefully my AHI stays in its current range. I have reviewed the other metrics provided by Sleepyhead. Once I have a couple weeks of daily CPAP therapy, and the required number of posts on Apnea Board, I'll post the Sleepyhead screen shot. I’d also appreciate some insight on my sleep study and prescription. I can't wait to have some input from real life Sleep Technicians!
Thank you and God Bless!
P.S. I hope I’m not in a heap of trouble for changing my prescribed settings. If I am, let’s see them argue against an AHI < 1.0 ! Obviously I need a larger data set to know where I’m truly at. Then again, they may not even notice I adjusted the prescription.
RE: Diagnosis + prescription = Frustration... ApneaBoard + experimenting = Salvation! - OpalRose - 11-27-2016
OldVet,
Wow, that's a great story! Thank you for sharing.
Seems like you are figuring it out. Don't make too many changes. Try to collect a couple weeks of data, then take a look at where your 90% pressure reading is, and set a range of 2 to 3cm below that number and 2cm above.
You will need at least 4 posts to send us some data.
Here are some tutorials to help show you what we need to see and how to post.
http://www.apneaboard.com/wiki/index.php?title=SleepyHead_Chart_Organization
http://www.apneaboard.com/wiki/index.php?title=Attaching_Images_and_Files_on_Apnea_Board
RE: Diagnosis + prescription = Frustration... ApneaBoard + experimenting = Salvation! - Crimson Nape - 11-27-2016
The important thing is; How do you feel?
RE: Diagnosis + prescription = Frustration... ApneaBoard + experimenting = Salvation! - trish6hundred - 11-27-2016
Hi OldVet,
WELCOME! to the forum.!
It's great to hear that you have taken charge of your sleep apnea, keep up the good work.
Hang in there for more responses to your post.
RE: Diagnosis + prescription = Frustration... ApneaBoard + experimenting = Salvation! - Galactus - 11-27-2016
Good job. You're your best advocate, and treatment sponsor, keep up the good work. Many of us have been there, done that, and have the receipt to prove it.
RE: Diagnosis + prescription = Frustration... ApneaBoard + experimenting = Salvation! - chill - 11-27-2016
Welcome! I am gratified that the ApneaBoard was able to help you so well! It sounds like you are well on your way to successful CPAP. It may not be the most fun in the world, but it sure beats the alternative!
I don't think that any of us are real life Sleep Technicians, if you mean professionals by that. At least none of us admit it here that I know of. We are just experienced *PAPers with inquisitive minds.
I doubt you will get in trouble for changing your pressure. Your insurance and DME just care about compliance. When I first changed mine, I told my RT "Don't yell at me, but I...". She replied that she did not yell at adult men and went on to congratulate me on improving my therapy. My sleep doc felt the same way. If yours does not, I'd be looking for someone with a more open mind.
RE: Diagnosis + prescription = Frustration... ApneaBoard + experimenting = Salvation! - holden4th - 11-28-2016
This is all about what works for you so well done for researching and experimenting. There will be other tweaks you can do but run with what you've got for a few weeks and to quote Crimson Nape - how do you feel? The aficionados on this board, despite their modesty, know a hell of a lot about this so post some Sleepyhead data in a few weeks and see what they think.
RE: Diagnosis + prescription = Frustration... ApneaBoard + experimenting = Salvation! - OldVet - 11-28-2016
OpalRose,
Thank you for the reply. I'll tweak the pressure range and then run with it for at least two weeks w/o any adjustments. I will also review the links you provided.
Much appreciated!
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Crimson Nate,
I feel much better now that I'm on the road to figuring the CPAP out. I'm also thankful that I found this Board and the members here. I'm still not sure how the CPAP therapy is impacting me. I need to give it a couple weeks I think.
Thank you!
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RE: Diagnosis + prescription = Frustration... ApneaBoard + experimenting = Salvation! - OldVet - 11-28-2016
trish6hundred, holden4th and Galactus,
Thank you for the words of encouragement! Will post data in two weeks.
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Chill,
Thank you for the reply. I realize that the members here aren't actual sleep technicians. However, the knowledge here on this Board is amazing. I was just trying to give you guys/gals some well deserved props. Thank you!
Posting data in two weeks!!