Coping with knowing this is forever? How do you do it

[tierdal]

sometimes I can't believe I have to strap stuff to my head EVERY night

buy distilled water every few weeks

follow up with DME constantly, cause they are always messing something up

anyone else feel the same? how do you deal with it?

[Big Guy]

sometimes I can't believe I have to strap stuff to my head EVERY night

buy distilled water every few weeks

follow up with DME constantly, cause they are always messing something up

anyone else feel the same? how do you deal with it?

Back in August of 2018, I was diagnosed with moderate to severe Sleep Apnea. I also had a two night in house sleep lab study done locally.

I started my CPAP journey in early Sept. I took to it w/o any problems or issues. From the very 1st night, all went well. My #'s were good and my sleep doctor was pleased with how it was going. 

What I realized was, that it wasn't doing anything for me. I went back 2, maybe 3 times and discussed it with my sleep doc. He told me to be patient and give it more time.

After three years and still no change, I sad enough was enough. I stopped cold turkey. I turn 69 this coming October and I'm doing fine. I retired back in 2010, so if I feel tired during the day, I take a short (60 min. or so) power nap. THAT does wonders for me. 

I sleep thru the night and my wife hasn't complained about any snoring. I get up a couple times a night to use the restroom, then it's back to bed and to sleep. We're usually up and about by 8 am or so. Sometimes earlier. 

I still have all my CPAP equipment and it's stored nearby. I just don't feel or see a need to start back up. I'm well aware that many struggle with CPAP on a nightly basis. I feel for them! That just wasn't my experience though. 

Maybe I was misdiagnosed or something? Sleep labs and sleep doctors don't make any money by telling you that you don't need CPAP treatment. Looking back, I question my diagnosis. I was referred to a sleep doc by my primary care physician. 

He hasn't once asked me about it and I've seen him a handful of times since he referred me. I'm sure that others will be along shortly to weigh in on the matter as well. 

BTW.....I quit using distilled water within a few months and used good ole tap water. If you can drink yours, you can use it in your machine. Also, the CPAP equipment lasts longer than a DME supplier would have you believe. Just keep it in good repair and clean as necessary. 

Best of luck to you on your CPAP journey. 

[Jay51]

I felt the same way when I first started.  It felt overwhelming.  Fast forward a few years.  It is now 2nd nature (habit).  Part of my daily, nightly, and weekly routine.  Once the right combinations are found (mask, supplies, etc.) it is easier IMO. 

Some DME's are better than others I have found from experience.  Once you find a good one, try to keep it.  You might want to try a different DME for better results.  

IMO, the small amount of "extra things to do" beat having a heart attack or stroke, etc. that can occur from untreated sleep apnea.  I hope it gets better for you.

[tierdal]

I felt the same way when I first started.  It felt overwhelming.  Fast forward a few years.  It is now 2nd nature (habit).  Part of my daily, nightly, and weekly routine.  Once the right combinations are found (mask, supplies, etc.) it is easier IMO. 

Some DME's are better than others I have found from experience.  Once you find a good one, try to keep it.  You might want to try a different DME for better results.  

IMO, the small amount of "extra things to do" beat having a heart attack or stroke, etc. that can occur from untreated sleep apnea.  I hope it gets better for you.

Thanks, what's the best way to find another dme? I'm in new York

[Sleepster]

sometimes I can't believe I have to strap stuff to my head EVERY night

You could die early of a heart attack or stroke. That's a realistic alternative.

buy distilled water every few weeks

follow up with DME constantly, cause they are always messing something up

You don't have to do those things. But you do have to keep your gear clean.

[tierdal]

You could die early of a heart attack or stroke. That's a realistic alternative.


You don't have to do those things. But you do have to keep your gear clean.

I clean the nasal pillow, that's about it. Nothing the gets dirty and I replace the stuff every 3-6 months

[LookingForACleverHandle]

Coping with knowing this is forever? How do you do it?
Like an alcoholic staying on the wagon... One day at a time. Don't think about forever.

I started somewhere around 25 years ago, and when my GP asks if I'm still using the CPAP nightly, I tell him it is my best friend.
I can't sleep without it. I've forgotten some pieces to the rig when on travel, and had a worse than miserable night.

I dumped the DME years ago, manage my own care, and buy masks, hoses, etc. online.

[NotADr]

I'm a stomach sleeper who can't get comfortable sleeping on my side or back, so my nasal pillows bother me during my sleep 9 times out of 10 nights. On the other hand, I no longer wake up with a headache from a lousy night of sleep. Even better is that my spouse no longer needs to leave the bedroom at night due to my snoring and irregular breathing. My dad had horrible sleep apnea and died from dementia (I can't prove those two things are related, but many they are). Agree with others that distilled water isn't necessary.

[Cpapian]

I am thankful for every day, and if a mask and machine help me have more days. .... weeks   .... months.  ... years. ......

[staceyburke]

I found out I had to use it when I fell asleep at the wheel of a 16 passenger van filled with high school wrestlers on our way to a tournament in Denver.

That was 45 years ago and the difference I felt when I used it made me MEVER to miss a night. Now it has been 40+ years without missing a night.