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TheAspiringSleeper [Therapy Thread]
#1
TheAspiringSleeper [Therapy Thread]
I'm a 41 year old male with a BMI of 24.4 and a deep love of outdoor physical activity (mountaineering, bicycling, skiing, etc.).

I was diagnosed with atrial fibrillation (afib) in September of 2020. At that point I quit drinking alcohol and caffeine, and I had a catheter ablation in January 2021. Six months out my cardiologist ordered a follow-up study (which showed no signs of afib) and a home sleep study.

The home sleep study was based on 4 hours 14 minutes spent in bed.  Here's the results:

Quote:During that time there were 50 respiratory events recorded including 11 apneas, majority of which were obstructive in etiology.  The respiratory event index was 11.8 per hour.  The supine REI was 29.3 per hour.  The oxygen desaturation index was 11.3 per hour.  The minimum saturation was 86%. Saturations were less than 90% for 1.2% of the night.  Snore index was 0.5%.  The average heart rate was 71 beats per minute.

The sleep doctor prescribed CPAP and said "sleep with it for the rest of your life."

I'm now 5 weeks in to CPAP usage. I originally started with a Philips Dreamstation 2 with ResMed P10 Nasal Pillow mask. The original pressure settings of 5-15 cm H2O were adjusted after about 10 days of usage and is currently set at 9-12 cm H2O. I've switched to a ResMed AirSense 11 (arrived yesterday) after determining that I could not look at my sleep data on the Dreamstation 2.

I'm sleeping worse than I ever have in my life & I'm getting desperate. The sleep doc tells me I "need to treat my underlying mental health condition" and my primary care physician tells me I need to follow the advice of the sleep doctor and "just get used to CPAP."

I've struggled with depression/anxiety in the past, but I've never had problems sleeping like this for so long. I have a 5+ year relationship with a therapist, and she told me today that my mood has been as stable as she's ever seen it over the past year (probably due to cessation of alcohol)... until I started CPAP.

I've tried different masks (full-face, nasal, nasal pillow) and the nasal pillow is the least bothersome. I typically sleep on my stomach (prone), and have found the low-profile mask is best for maintaining this position.

I've managed to adjust to the mask while falling asleep - I can fall asleep pretty reliably - but I consistently wake up after about 2-3 hours of usage. When I'm able to fall back asleep (not a sure thing by any means), I wake up again after another 2-3 hours.

I've twice taken a "break" from CPAP for a few days and immediately went back to sleeping "normally" (for me) and feeling human again.

Over the last three weeks I've used the machine 21/21 days for >7hrs / night. The sleep specialist tells me my apnea is "controlled" but my wife tells me that she's watched me change into a different person  - I look different, am not as motivated to exercise, I'm irritable all the time, and I'm keeping her awake at night.

I am absolutely miserable and am looking for any help I can get. Both the PCP and sleep specialist have so far declined to order a full in-clinic polysomnography; I'm in the process of looking for someone who can do this.

My next appointment with the sleep specialist isn't until January 2022. I know I can't go on like this but all the doctors tell me is CPAP, CPAP, CPAP, and I'm afraid if I don't manage to use it I'll just end up with afib again. Every time I stop using the machine it gets harder to start again.

I feel so stuck & like nobody is listening to me. Any advice is deeply appreciated.

If you've read this far... Thank You!! ...& sorry for the sob story. Based on the available emojis I'm guessing this is a not uncommon refrain! :/ Cant-sleep-well  Doctor-no-get-it Hate-cpap



Cross-posted to reddit.com/r/sleep-apnea
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#2
RE: New CPAP User - Not Sleeping
Welcome to the board. Many of us have been through this until we get the machine tuned in.  Please post an Oscar (downloaded free at the top of the site) and post the charts as in my link at the very bottom of this post.  There are many people here that are very knowledgeable and will help you if they can see the data from Oscar.
Apnea (80-100%) 10 seconds, Hypopnea (50-80%) 10 seconds, Flow Limits (0-50%) not timed  Cervical Collar - Dealing w DME - Chart Organizing
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#3
RE: New CPAP User - Not Sleeping
About your 2-3 hour sleep shifts, I've adapted to find a balance between getting good data results and my personal feeling about my previous night's sleep. I'm not the model sleep specialist, even though I've been using CPAP for quite some time, so you'll get much more credible responses from our group of sleep scientists. I know that I should probably get into another category of machine. Over time, I've found pressure settings that are a little lower than a setting that would create "better" data results. As a result, I can survive the next day just fine. Meanwhile, my sleep is less "disturbed" and I'm not waking every 2-3 hours.

It's a philosophy that I got from another poster many years ago. They advised someone to try choosing the settings that best make you "feel" that you had a decent sufficient sleep (or something like that).

Happy to hear that you've gone to a machine that you can actually pull data out of. Blah to the DS2's encrypted data. Looking forward to seeing you post some graphs.
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#4
RE: New CPAP User - Not Sleeping
11.8 events per hour is not severe. Many of us has over 40 events per hour and we cannot sleep without the CPAP.

I think it is most important if you feel good after using the CPAP. What’s the point to continue the therapy if it make you feel worse?

Discuss with your doctor and ask him what the risk is without the CPAP. Ask whether your case is severe and how likely your situation witll worsen.
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#5
RE: New CPAP User - Not Sleeping
Thank you. I didn't get any good data last night - kept waking up as soon as I drifted off, and eventually hung up the mask to get what sleep I could. I'll post some OSCAR data once I manage to collect it.

The doctor tells me the point is protection against further episodes of arrhythmia, and says I shouldn't expect to feel any different, given that daytime sleepiness has never been an issue for me.

Discussed this with the doctor today & she recommended I try a fixed pressure of 9 cm H2O instead of an auto-titrating 9-12 cm H2O, so it sounds like she's on the same page with your suggestion. Will reply with graphs as I'm able.
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#6
RE: New CPAP User - Not Sleeping
Welcome to the circus.

IMO any OSCAR data is better than none. If you have anything I'd post it. It could be something obvious.
Dave

OSCAR
Standard OSCAR Chart Order
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Dealing With A DME
Soft Cervical Collar Wiki
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#7
RE: New CPAP User - Not Sleeping
I will bet the odds that with your BMI and health history, your Oscar data will show us hypopnea and central events. Just an educated guess. Looking forward to your data. If you are having problems falling asleep, please limit the pressure on your CPAP. If my above guess is correct, your pressure may be getting elevated and causing centrals. Just limit maximum pressure to 10.0 and focus on comfort for now.
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

____________________________________________
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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
Mild Sleep Apnea - How Important to Treat?
Has anyone tried to quantify the risk of leaving mild sleep apnea untreated, or treated by other means than CPAP? I'm trying to escape the looming specter of sleeping with CPAP for the rest of my life.

Relevant stats: home sleep study - 11.8 AHI. Underwent ablation for atrial fibrillation in January 2020. Origin of afib considered multifactorial, including alcohol, caffeine, nicotine, antidepressants, Adderall (legally), and endurance overtraining.

I quit all the drugs & scaled back the training regimen. Do I really need CPAP too?
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#9
RE: Mild Sleep Apnea - How Important to Treat?
I suppose you're at the high end of mild Apnea. You could treat this with CPAP, which has the highest success rate when used and setup correctly. Surgeries have a far lesser success rate, more recovery pain, high cost, and then later you need CPAP anyway.

Have you posted your actual full, detailed diagnosic report? Do you have it yet? If not, get it ASAP. You need it for yourself, but you can post a redacted copy here. We can see what's going on that way.

Risks? You have Apnea that's needing treated now. Delay while in denial and it will get worse. Then you can't not treat with CPAP.
Dave

OSCAR
Standard OSCAR Chart Order
Mask Primer
Dealing With A DME
Soft Cervical Collar Wiki
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#10
RE: Mild Sleep Apnea - How Important to Treat?
In addition to posting your sleep study, could you post a recent Oscar chart?

Your sleep is being disrupted on average every six minutes. It’s difficult to get adequate deep and REM sleep with that kind of nightly disturbance, and you need both for optimal short-term functioning and long-term health.

When did you start PAP? And how is it going? I’d recommend you give it a fair trial before you try to decide what to do. It may turn out to be less of a big deal than you anticipate.
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