What brings you to our community?
To share my story so others may learn from my experience, and to read the stories of others so that I might also learn from their experiences.
Tell us about your current sleep
I was first diagnosed with moderate-severe obstructive sleep apnea back in 1997 at 25 years of age, 5’9", and 168lbs. However, I could not be compliant with CPAP and moved on to other types of treatment: dental appliance, 2 surgeries, and almost everything in between… to include nasal sprays, decongestants, supplements, nasal devices.
Around 2010 I started to gain weight even though I was still going to the gym quite regularly (3 or more times a week). I tried tweaking my diet, but I wasn’t seeing the results most people talk about when cutting back on sugar and refined carbs. In 2012 I became Type 2 Diabetic and was past 200lbs. By 2015 I was between 230-245lbs and started to hear about how poor sleep can get in the way of one’s ability to lose weight. This seemed to coincide with my own experience. So I decided to give CPAP another try. But after 3 mask types, I was still taking the mask of in my sleep and gave up. Since I had already paid for the machine, I kept it and just didn’t use it. My primary care physician got me a Rx for Armodafinil (Nuvigil) to help me stay alert during the day… but it was not a perfect solution.
By 2018, I was starting to slide out of bed and waking up on my hardwood floor. I would do this 2-5 times during the night until I would give up around 4:30 AM - 6:00 AM. Many times I would sit up on the edge of my bed, only to fall asleep and crash into my nightstand.
Then I started to sleepwalk… which led to falling down. Often I would catch myself, but sometimes I hit the floor. Twice I fell straight down and landed on my tailbone. Then finally one night I fell backwards in my bathroom and came within inches of hitting the back of my head. Had that happened, it might’ve been a few days before someone found me because I live by myself.
I went back to my doctor and said something had to change. I was also fighting drowsiness while driving, and I had my first accident in years (2017, age 45) when vacationing in Hawaii for the first time while driving a rental car. I was very lucky that I was not injured and that I was the only one on the road, so nobody else was involved.
We decided to try another sleep medicine doctor and at first I was going to try to qualify for InspireSleep. However, I needed to do a baseline sleep study and another one with a CPAP machine to prove I could still not be compliant. No problem; I was happy to do whatever it took because I really thought I was going to die.
My first sleep study told me that it was my sleep apnea causing the night time activities and not the Armodafinil. My AHI was over 100 and my oxygen saturation was down to 57%. The next week I went back for the CPAP sleep study and slept through the night for the first time in years! That was weird and very unexpected. So I was told to take home the mask and hose and try the CPAP again to see how it goes for a week. I waited for the weekend, very disappointed that I’m having to face this damn machine again. That weekend, the first thing I noticed was that the hose was very different from the hose I was giving back in 2015. Come to find out, the hose I have now is a ClimateLineAir which I was told later will help the machine better regulate the temperature and the humidity of the air flowing through the hose.
I believe this hose saved my life. Why I was not given this hose back in 2015 after trying THREE different mask types, I have no idea… because this hose existed back then. I would LOVE to file a lawsuit against the DEM supply company, which is now known as AdaptHealth (formerly Roberts Home Medical). But it would be hard to prove damages…
Since April 2019, I lost 15lbs by June, without yet having gone to the gym or further tweaking my diet. By December I lost an additional 10lbs. I’m now consistently weighing between 217-223lbs and plan on going back to the gym again soon. I’ve also seen my A1C drop from above 7 (and taking 3 different meds) to 5.7 as of mid-December. That number is significant because BELOW 5.7 is NON-DIABETIC!!! My doctor told me I could stop taking 1 of my 3 meds for diabetes. Also, my uric acid is back to normal. My triglycerides are now back in the normal range. My liver and kidney enzymes are back to normal. My vitamin D is no longer low and back to normal.
However, I still have low testosterone. And over the past year I started getting performance hits at work. I am an IT Project Manager (2006-present) with a large programming background (1993-2006) and was successful until 2018. Currently I’m experience some sort of cognitive deficits, short-term memory loss, and/or executive functioning disorder. I’ve used up all my “vacation time” on doctors visits between my PCP, sleep medicine visits, behavioral therapist, sleep neurologist, and neuropsychiatrist. I’ve been diagnosed with anxiety and depression. And currently I’m trying to get approved for Short Term Disability.
Which now brings me to the final statement…
Finish this sentence: “Sleep is
ESSENTIAL to live your best life! Without it, your body will not be able to repair itself, especially if it’s not getting enough oxygen to fuel all the various cells that allow them to perform their specific functions! Also, our brains require sleep to rid itself of waste as our lymphatic system does not include the brain. Without sleep, the brain literally is not able to clear out the waste bi-products left from the activity during the day.
And now I’m not sure how much of my cognition has been impacted by my sleep disorder vs my toxic manager at work who is unhappy with my performance vs I’m approaching 50. I used to think the weight gain was a result of just getting older. But if that were the case, how else have I been able to lose 25 pounds without stepping foot in a gym over the last 4 years and not changing my diet?
Here’s something else to think about… How many of us have had premolar extractions when we were children and/or orthodontia work done as tweens/teens? I did… In my case, I started out with a Frankle dental appliance in elementary school… and then braces in middle and high school. In one of the sleep apnea Facebook groups I belong to, I met a woman who has a theory that a lot of issues such as TMD, TMJ, tinnitus, sleep apnea, neck pain, are all related to dental work that was performed on an entire generation of kids… some perhaps unnecessary as many were made to wear braces for purely cosmetic reasons. There’s growing research that seems to indicate there is a direct link.
Remember, I was only 25, 5’9", and 168lbs when I was first diagnosed in 1997 with moderate-severe OSA. I was born in 1997.