My Not-So-Normal Realization: Part 2
This is the second article in a two-part series. In part 1, Lindsey shares how she came to realize her extreme sleepiness was not normal.
Driving home that morning, a million thoughts crossed my mind; I knew something wasn’t right. I knew this wasn’t just depression like I had been told for so many years. This was something more.
Unfortunately, due to a change with my insurance just a few weeks prior, I found out that my primary care doctor was no longer covered. Once I arrived home, I immediately began searching for new local doctors who were covered by my new insurance.
Talking with my new doctor
Shockingly, I found a new doctor with great reviews who was covered by my insurance and had availability the next week. The receptionist explained that prior to a physical, they would need to do a “New Patient Appointment.” I wasn’t sure what that was exactly, but I scheduled the appointment for the following week.
During the appointment, I sat down with my doctor and went over every inch of my medical history and my family’s medical history. Nothing too out of normal until we got to the part on sleep.
One question that made a difference
I explained to her I had been diagnosed with depression many years ago and that my previous doctors had tried various antidepressants. But regardless of whether I was on one or not, I was still sleepy.
She paused for a second and asked me something that had somehow never crossed my mind. “Are you only sleepy when you feel depressed?” she asked. No, I wasn’t. I was sleepy all the time.
Does narcolepsy run in my family?
I had no idea how this one question could change so much. I went on to also explain that my family members suspected my grandma had narcolepsy but was never diagnosed before she passed away. I also mentioned I have another family member who had been diagnosed a few years prior.
Despite them both having narcolepsy, I wasn’t quite sure if that was the same issue I had since our symptoms were so different. But either way, we decided it was best for me to see a sleep specialist.
Finding a sleep specialist who understood narcolepsy
One thing I did not immediately realize was not all sleep specialists understood and treated narcolepsy. When I finally found one that did, I got extremely excited that she had an appointment that afternoon. I was excited in hopes of finally having answers but nervous to end up at a dead-end again.
When I was called back from my appointment, I was expecting to see a normal exam room, but instead, it was more like an office. We sat across from my new sleep specialist at a large office desk. She began to ask me what seemed like normal questions about my sleep. But then she began to ask questions that I had not been asked before.
Questions from the sleep specialist
She asked me if I ever woke up in the middle of the night for no reason. Every single night I did. She asked me if I even had an overwhelming urge to move my legs, and I did. Some nights it was so bad my husband would go sleep in the spare bed or the couch.
“Have you ever had experiences when you were waking up or falling asleep when you were unable to move or saw or heard things that weren’t really there?”
I literally froze as she asked that question, and countless memories flooded through my thoughts. After she asked me about a dozen or so questions altogether, she scribbled down a few notes and paused.
“We definitely need to get you scheduled for a sleep study. But I suspect you have one of two things, or possibly both.”
I could feel myself on the edge of my seat. This was the first time my sleepiness issues would have a name.
“You definitely have restless legs syndrome, but I suspect you also have narcolepsy.”
Would I finally get answers?
She prescribed me a medication that would not interfere with the sleep study but would hopefully help with restless legs syndrome symptoms. This would help us to see during the sleep study if that was the only issue or if I also had narcolepsy.
For the first time in many years, it all made sense why I was fighting these symptoms. I was hopeful that after my sleep study the following month, I would finally have my answers.
Where are you on your narcolepsy diagnosis journey? What was your experience talking to a doctor about your symptoms? Can you relate to Lindsey's quest for answers? Tell us more in the comments below!
Do you feel that your doctor understands narcolepsy?