Nearly two years on CPAP (and what happened when I quit)

You may recall I had a health issue about two years ago and since then I’ve been advising people check via any means for sleep apnoea. You can do it via smartphone, smartwatch, just recording your breathing, app, etc.

I ended up opting for the 47 sensors two times sleep study. It was terrible. You’ll probably have to do one in order to get a CPAP machine covered through insurance in the US though.

The scare part

Of course sleep apnoea doesn’t kill you, it’s the stress that not getting enough air does. Struggling to take breaths, heart working overtime, bad sleep constantly, etc.

I previously mentioned I knew a teacher with a fairly new baby who died. His wife had to fight the medical examiner to get an autopsy done as evidently his age dying = heroin overdose. It wasn’t heroin. He’d had sleep apnoea and been diagnosed and was on a CPAP for a couple of months but the damage had been done.

Had another friend her husband, same general scenario. Sleep apnoea related heart failure.

Have a friend of a friend we suspect that was also the case, but not completely sure.

I’ve had some quite serious motivation as people who seemed in better health than me have been dropping. I’d also been feeling more of a sense of well being lately.

Then I stopped the CPAP

Paul likes testing things out so he quit to see what damage it would do.

No, not really.

I had to temporarily stop due to a sinus infection and the thing literally sounding like a tiny trumpet was being played in my nose. I really tried, really I did. But no amount of ibuprofen, mucinex, sinus wash, Flonase, Zyrtec & Claritin, or praying to the nasal gods would stop me from waking 20 minutes into sleep to a little bugle going off in my sinuses.

Tweeeeeeeheheheeeeeeheeeeeeeheeeheeeeeeeclick* or worse “sheeplep plep hiss hiss hiss plep plep plep plep”.

I had to stop using the CPAP if I wanted to sleep. I can usually do this for a couple of days without feeling anything negative, but here’s what’s happened over the past month+ as I’ve been off it. This is temporary as a note.

First three days I felt terrible, however I was feeling terrible anyway so I don’t think this had anything to do with the CPAP or lack thereof.

As we reached about a week off, I noticed I was extremely tired when I woke up. I got more so as week two of crazy sinus event happened.

Week two was probably not the same thing. I had a 103F fever at one point, kids were horking, I was horking, pretty sure it was the flu or funk. This lasted four days and took out a box of tissue, we had to steam a couch from kidsplosion, not a fun time. Nose probably produced about a gallon of green gunk.

At the end of week two I started thinking that I was pretty miserable with the sinus thing and realized I was also having some pretty self destructive thoughts. That’s what lack of sleep and two weeks of sick will do to me.

Week three started, I managed to CPAP it up for a good two days in a row before something else hit. I don’t know what this was. It started out feeling like allergies, I was sneezing, but the pollen count was low. Antihistamines did nothing. People at the office building looked like they were using red eyedrops or smoking entirely too much weed. Either could probably be the case. Someone mentioned there was a weird cold going around and that this was not allergies. I believe them. Nose decided to start flooding the world again. Sinuses were mostly just swollen.

I started having insomnia. Not just little insomnia, stay awake until 3am staring at Facebook showing the same crap insomnia. Would like to do something more fun but I have no brain so let’s look at the same updates insomnia.

This is something I suffered through my entire life up until relatively recently (2016). It went away about two or three months into the CPAP. I’d now be awake until 3AM and getting up at 6.

Late week three I took off a day for some reason from work (went to work, went back home.) I don’t remember it. It’s not like I did anything fun, I remember getting some food and then waking up after probably sleeping six additional hours. I talked to a couple of coworkers who said I looked tired but was otherwise competent and solved some problems, functioned fine. I just don’t remember it.

My sinus hell decided to go on hiatus and I was able to use the machine a couple of days in a row again. Unfortunately I had full raging insomnia at this point and I was only getting about three to four hours of sleep at any given point.

I woke up on night three feeling like I was snorting bleach. I dropped the cpap and went to the bathroom to see if I was bleeding or looked like the death I felt. I’m not really sure what was going on. I used the sinus rinse but still felt like battery acid going on. Had to mouth breathe to sleep that night. Air in the nose was painful.

Week four hit and actually have allergies finally. This was controllable. I’m in complete insomnia mode at this point. Even being on the CPAP I’m only on it for three or four hours a night. This means I’m passing out at my desk.

I start having that weird thing I had all my life where my right leg starts wanting to run a marathon (RLS) and I get extremely hot. This causes me to toss and turn which when you have a cord attached to your nose can be problematic. Let me tell you I was on no less than 12 different medications to stop my leg twitching and nothing worked. I also tried soap in the bed, thing tied around ankle, washcloth on the foot, etc etc etc. CPAP killed my RLS in a month.

I realize at week five I’m probably not getting better quicker because I’m simply not sleeping any more, wife’s ticked off about my leg twitching being back after a nearly two year hiatus, and walking up one flight of stairs is a daunting task. I look in the mirror and I look like a gray haired goth.

So yeah…

For me the month mostly off has meant RLS returned (twitching leg, extremely hot at night,) insomnia, memory problems, exhaustion, and most likely the reason I’m still sick. Immune system’s said eff it, I’m taking a nap.

For me, this feels like most of my life. I’d learned to handle insomnia. I’d been sick for months at a time. Other than a couple of days of sickness during the past two years up until I stopped the CPAP I’ve been pretty good.

Grab an app, see if you have sleep apnoea, and if you do get it treated as the past couple of years have been the first in my life where I felt pretty good, wasn’t twitching, and had topped out at two or three days being sick as opposed to months.

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Paul E King

Paul King started with GoodAndEVO in 2011, which merged with Pocketables, and as of 2018 he's evidently the owner. He lives in Nashville, works at a film production company, is married with two kids. Facebook | Twitter | Donate | More posts by Paul | Subscribe to Paul's posts

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2 thoughts on “Nearly two years on CPAP (and what happened when I quit)

  • Thing I’m wondering is, what is the root of these issues?
    My wife has had RLS all her life, and in the past few years joint pains and more. She finally found a specialty doctor (after multiple tests with other doctors) for Lyme. That is what she has.
    Since she has it, we thought we test my son and me.
    My son no, me yes (starts to answer all the little things I always thought was me just getting older).
    There are two tests, a blood test (looking at white blood cells, but, your body may not be fighting Lyme if it is dormant) and a urine test (this looks for the DNA of Lyme and his cohorts).
    My wife and son took the urine because of their symptoms (looked likely) , I took the blood test (looked unlikely).
    So, for me, I’m doing an herbal remedy (I would have to be on antibiotics for months, and that would be too damaging; but I can try that later if needed), and I’m getting more symptoms (like RLS). But, doing detox to remediate those.
    I’m not saying you have Lyme, but it is more prevalent that people think, and your regular doctor will not really take it that seriously.
    I hope you get better in the immediate, and figure out a long sustainable path for the future (I’m working on mine).

    • I think two things –

      I have very messed up sinuses. Tiny air entry, constantly inflamed sinuses due to allergies. I was tested for allergies last year and found that pretty much everything I’m around I’m allergic to. Cats, english plantain, several weeds, dust mites, etc. Went through a huge cleaning and sealing of my bedroom and with dustmite pillowcases, sheets, boiling the curtains, etc things got better.

      Second thing is my immune system sucks. I had a doctor giving me antibiotics for allergies for most of my childhood. He kept giving them thinking I was faking some of my illness to get out of school and antibiotics couldn’t hurt (that was the belief in the 1970’s-80s). Never tested me for allergies. This went on for years. I’d walk in, be diagnosed with bronchitis when it was probably hay fever, given amoxicillin, sent home, not get better, go back be given something else, come back, etc. I probably spent a quarter of the year on antibiotics from age 5-13.

      But my immune system also sucks because at age 8 I became homeschooled. Nasty divorce thing, not religious thing. Cue eight years of not really being around all those colds, germs, and things that make you build up an immune system. This was manageable as an adult with friends who had no kids. This became problematic when I had two kids. I’m now getting everything.

      Side note I had a Lyme test 19 years ago when I first started actively attempting as an adult to stop being the sick kid. Doc said the sinus inflammation, joint issues, and RLS (which was called something else then,) could be caused by that. Might get tested again however before my insurance disappears.


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