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[Diagnosis] Any Suggestions?
Any Suggestions?
Hello all. I have been browsing this forum for some time. You are a fantastic community and the journey in dealing with my sleep apnea has really come from reading the posts here. 

I have had apnea for about 20 years. My sleep studies almost all indicate that I stop breathing 100 times per hour. I am told this is extremely high. Not by my doctors, but I read. I take pills to offset the symptoms related to getting almost no REM sleep for sometimes weeks at a time. AI take anti depressants and ADHD meds for the fact that I can't concentrate very well and my short term memory problems are significant. I am not usually sleepy during the day even when I go on a long streak of getting less than 30 minutes of REM a night. It's not the ADHD meds because I didn't take those for years at a time. I'm a very driven professional but it still seems uncanny that I am not nodding off all day.

I have seen three different ENT's and while all three of them claimed to be experts at sleep disorders, I have had to explain basic things to them like the difference between central and complex apnea, the basics of the different CPAP and APAP machines and other things that they really should know. Am I a Tuesday morning armchair doctor? I dunno. They have sent me to two different sleep centers to have my studies done. Both are exceptional and I have had about 6-7 studies done in the last 15 years, 2 in the last 3 years.

All three of my doctors agree that I do not have anything that is physically blocking my airways. I have semi-large tonsils but they are extremely healthy and they don't seem to contract when I sleep. It seems I have central apnea but I have never had a stroke or heart problems. 

I have tried many PAP machines. Always brand new top of the line stuff. I've had the sleep centers and my doctors make adjustments for me for years before I decided to make adjustments myself especially now that software makes the analysis very simple. Numerous masks of all different styles, socks on my hands to keep myself from tearing my masks off my face while I "sleep" and so much more. But I have given up on PAP therapy. 10 years of hard work and while the machines just don't compensate for the times where I gasp for air to the point of panic which happens 4-5 times a night. 

Next I will be trying guided meditation specifically geared towards breathing. Even while awake I have to "remind" myself to breathe deeper. I am going to the gym a lot more lately with a focus on cardio. I do watch what I eat pretty well and my portions are reasonable but I am a big man and my metabolism is so slow that it seems to go in reverse. Someone told me that getting no REM will do that. I mean, it affects everything else, so why not, right? Smile

I am told that despite my apnea being extremely bad in the last couple of years that my snoring isn't that bad. 10 years ago my ex wife threw me out to the couch because I was like a lawnmower. And I could feel it too. I don't feel that grinding in my throat and nose like the inside of my head has been a blender all night. 

The last couple of nights I have used this anti-snoring thing that is basically two little plastic tubes connected to each other. The first night I slept like I was in a coma. I ripped about 9 phone books in half I felt so strong that morning. (kidding). Last night they popped out of my nose but I still slept a lot better. Not a very good sample size, I know, but I am hopeful. I'll try anything at this point.

Thanks for listening. Happy to hear any input or suggestions that you might have. Acupuncture, voodoo, cage fighting, I'll try anything at this point. Please don't say cage fighting though.
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RE: Any Suggestions?
So after all that were you ever put on an ASV machine?
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RE: Any Suggestions?
Welcome to Apnea Board.

Quote: It seems I have central apnea but I have never had a stroke or heart problems.

I too have central apnea without having had a stroke or heart attack - they are not a necessary adjunct of central apnea. But if that's the case, then a ASV machine may be a suitable treatment option. ASVs are expensive, and not without their own problems, but for a large majority of central apneacs the ASV is spectacularly successful.

It would be very interesting to see your sleep study results if you would care to post them here - our collective (amateur) wisdom might spot something the professionals have overlooked.
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RE: Any Suggestions?
Download and install SleepyHead, get your data off the PRS1 60 series, post a chart attachment. Answer will quickly follow.
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RE: Any Suggestions?
Hi ZeroREMSteve,
WELCOME! to the forum.!
You have come to the right place for guidance.
Good luck as you continue CPAP therapy and getting it fine-tuned.
Post data, and you will get more suggestions.
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