The Bumpy Road to Diagnosis
Narcolepsy is notorious for being a difficult disorder to diagnose. It can take years for patients to be diagnosed, and they can often be misdiagnosed in the process! I want to share my story openly so that anyone who is struggling to be heard and understood knows that they can keep fighting for answers. You are not alone.
It's hard to know exactly when my symptoms started because the progression was so insidious. Looking back I had been experiencing some symptoms of narcolepsy since about age 17. However, I would say it started taking over my life at the age of 22.
When I realized something was wrong
At this stage in my life, I was driving over an hour each way to work every day. I noticed that most days I couldn't remember my drive home, and sometimes I couldn't even remember leaving work and getting in the car. It felt like some form of amnesia!
One day I decided to turn my dashcam around and film myself instead of the road, and watching the footage back, I realized something was very wrong. Throughout my drive, my eyes would flicker, open and close, and even roll backward. I wouldn't even know that I was falling asleep. There was no warning so I couldn't pull over and have a power nap. I was completely running on autopilot.
Searching for answers, my first sleep study
I spoke to my GP, and we decided it was time to look in to see a sleep specialist and get a sleep study done. Two months later I was sitting in the office of Sleep Specialist #1, and discussing the results of my first polysomnograph. I had mild sleep apnea and was instructed to start CPAP therapy. So I got my own machine, had my CPAP study done, and really believed that this was going to be the answer to my problems. I could not have been more wrong...
After months of using CPAP successfully every night, and reducing my number of hypopneas, I somehow was feeling worse. I had this overwhelming sense of tiredness that made it impossible to wake up in the morning, and I was napping even more than I was before! This was not what I had been promised at the start of my CPAP journey, and I quickly became disheartened. I went back to my sleep specialist and he decided to explore more options, so I was booked in for an MSLT (multiple sleep latency test).
Unfortunately, I went on to have 2 more MSLTs in the coming months, and they were repeatedly coming back negative despite the fact that we knew something was wrong. I took my results to Sleep Specialist #2 and was diagnosed/treated for periodic leg movement disorder. But surprise, surprise, this didn't help any of my symptoms either!
My MSLT false negatives ended up being attributed to the fact that I was on antidepressants at the time, and they have the ability to suppress REM sleep. However, that was not pointed out to me until I found Sleep Specialist #3.
Finally, I felt heard
I remember the day I was diagnosed so clearly. Nervously sitting in the waiting room of my final sleep specialist thinking this could be my final hope for answers. I was tired of fighting and searching, and I had lost my entire year to specialist appointments and sleep studies!
He took me into the office and greeted me with an incredibly kind and caring demeanor. I was asked a series of questions regarding my symptoms and daily life. I felt like for the first time I was actually being heard. Like my experiences mattered.
Validation and a life-changing narcolepsy diagnosis
My struggles had finally been validated and I had answers for all the things I was experiencing. I wasn't crazy, and my tiredness wasn't my fault. I had narcolepsy.
Do you feel that others judge the severity of your narcolepsy based on how you look?