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This letter to the Editor will make you furious! [1]
['This Content Is Not Subject To Review Daily Kos Staff Prior To Publication.']
Date: 2023-06-17
A trip to the ER for stroke-like symptoms failed to result in a diagnosis; medical providers would often gaslight me or accuse me of faking symptoms “for attention.” Fortunately, after meetings with neurologists and other specialists, I underwent a sleep study and was diagnosed with narcolepsy with cataplexy, although it wasn’t explained to me what cataplexy was until 2018. My diagnosis came with little education or support, as I was simply given a stimulant and sent on my way.
For most of my life, I’ve lived in a hazy fog — fighting to stay awake, falling asleep in random places, and struggling to remember things. As a child in a farm family, when I’d beg to nap, they told me I was just lazy. I had one of my first cataplexy episodes at the age of 12 when I went limp while jumping on my bed (I was alone). When I tried to tell my parents what happened, they told me to “stop making things up.” I spent years only working part-time as an adult because I couldn’t stay awake long enough to complete a full shift. I didn’t know what was wrong until I was first diagnosed with narcolepsy at age 36.
The symptoms left untreated made it impossible to function in life — at one point, I had dropped out of college and hadn’t left my house for months. But then came hope with a new drug treatment. A doctor prescribed a medication that had a challenging, two-dose regimen. After taking the first dose at bedtime, I was required to wake myself up to take the second dose two-and-a-half to four hours later. If I overslept and missed the window for the second dose, my day would be lost. I’d have to wait six more hours after the second dose to be cleared to drive again, forced to choose between a functional day at work or arriving late because it wasn’t safe to get behind the wheel.
Little did I know, I could have been on an easier drug regimen. I learned about a clinical study for a similar medication but taken only as a single, once-at-bedtime dose. I was ecstatic when I was accepted to the study and began sleeping soundly through the night for the first time in years. No more waking in the middle of the night, no more side effects. It was truly life-changing — I felt as though I was truly waking up for the first time. If I had continued the treatment path I was on, I wouldn’t be able to spend as much time with my then-17-year-old daughter or enjoy watching movies each week like I do now.
But my joy turned to anger when I found out this drug was not widely available because there was a monopoly blocking it from being on the market.
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