Sleep Apnea and Narcoleptic-like Episodes

Hi everyone,

I figured I would share my story to shed some light on how sleep apnea caused me to have symptoms of narcolepsy. I struggled with severe hypersomnia for 2-3 years that became horribly disruptive to my life. I started noticing I had difficulty with staying awake in 2020 and it got progressively worse over the next two years. I couldn't stay awake at work, would begin to fall asleep while standing, and no amount of caffeine, diet changes, or morning exercise would improve the excessive daytime sleepiness. No matter how much sleep I got the night before, I would still be so tired during the day and it seemed like nothing I did changed that.

Hypersomnia

There were days I spent my whole work day just struggling to stay awake and would have such bad brain fog that I wouldn't be able to remember what happened throughout the day. I tried everything I could think of to help and it made no difference. I began to feel pretty hopeless and was scared I might lose my job for being so sleepy at work or that something bad would happen because I couldn't remain alert enough. What finally became the turning point where I decided I couldn't live like that anymore was when it became unsafe for me to drive as I started having difficulty staying awake if driving more than 30 or so minutes.

Sleep studies

After multiple home sleep studies and one in lab that included the narcolepsy sleep testing where they have you take a series of naps throughout the day, I was told that I met the diagnostic criteria for narcolepsy but also had sleep apnea with both obstructive and central apnea episodes. I was having upwards of 10 episodes every hour where my breathing was interrupted. I was told that my sleep apnea was both obstructive and central since sometimes my airway would become obstructed during sleep but other episodes were because my brain was not sending the correct signals to stimulate breathing. I started positive air pressure therapy and using an APAP machine which adjusts to my breathing and only stimulates airflow when I need it. I have been using my APAP machine at night for almost a year now and it's been absolutely life changing.

Sleep apnea

My narcoleptic-like episodes were stemming from the sleep apnea and treating the sleep apnea treated my hypersomnia. It was only after I started on my APAP that I realized how much strain I was putting on my brain and body when I was sleeping. If I don't use my APAP machine enough or forget to use it for a night or two in a row, I experience hypoxic headaches which sometimes last for hours due to the lack of oxygen to my brain overnight. I will have hypersomnia and be desperate for a nap the whole day. I noticed an immeasurable difference with APAP therapy. It felt like my brain was finally able to fire on all cylinders for the first time in years. I was focused and attentive at work. The brain fog and constant fighting to stay awake diminished. I was able to plan a day out knowing I could actually stay awake for the whole thing and napped only when I actually planned to. Now, I average .5 -1 AHI episodes per hour with my APAP.

Still struggling, looking for help

I still struggle with sleep at times and take medication to help since I also experience bouts insomnia and nightmares, but getting treatment for my sleep disorders has greatly improved my quality of life. I'm so grateful I was able to get help for my sleep and I hope everyone who struggles with sleep is able to find the same relief.