A Long Road to Nowhere

Last updated: September 2021

I was diagnosed with narcolepsy in October of 1998. At 41 years old, I was driving from WI to IL every day to work and was falling asleep driving, mostly on the way home. One day, I fell asleep while talking with a customer, which is what prompted me to see a doctor. At that time, my daytime sleepiness was such that I would sleep at red lights. I was very lucky to have had no accidents at that time.

Visiting my doctor

When I saw my doctor after a sleep study, his one comment was "You are a very sleepy young lady!". At the time, modafinil was still experimental, so I was put on methylphenidate (Ritalin) to start. After months of increasing dosages, I was really horrified that I would have to be on stimulants for the rest of my life! I'm not sure that even now, 23 years later, I have fully accepted the fact that this is a lifelong illness and I must take "drugs" to live a somewhat normal life.

My symptoms have changed over the years

One thing I can tell you is that my daytime sleepiness and my nighttime issues have gotten worse over the years. I was led to believe, early on, that my symptoms would remain the same throughout my lifetime, but I can tell you that is not the case. I now suffer from insomnia frequently, which was not an issue in the early years. I also suffer sleep attacks several times a day, preventing me from holding a full-time job. Sigh.

My medication journey

Long story short, I have taken both methylphenidate and Adderall during the 20+ years since my diagnosis. I was horrified to discover that Canada, among other countries, had banned Adderall XR due to "sudden deaths"! My current doctor (I had to change doctors because I am now on Medicaid and my former doctor did not accept it) has me on methylphenidate, and he is trying to get me to lower the dose. I tried it for 16 days and it was a disaster!! Why is it that doctors think they know how much medication we need if the higher dose works? I am very familiar with the "lowest dose that works" line, and sometimes a lower dose just doesn't do it!

Present day

So, I am now 64 years old and have a mostly empty life. My partner of 17 years died from lung cancer in 2007, but that's another story. That person did not believe that I had to go to bed by about 10 so I could get up and drive to IL the next morning. Although I provided all kinds of information, it wasn't until a year before my partner's death that they finally chose to get informed about narcolepsy and realize that it is a real thing!!

So, it's now me and my cat(s) against the world. I am a caregiver for my mother (who is 93 1/2 in assisted living) and my uncle (who is 88 and in memory care suffering from Alzheimer's Dementia). Although I have six siblings, I am the primary caregiver, and most of them do not even attempt to contact our mother and uncle. Sad situation.

Finding joy and normalcy

I'm making every effort to live a life that brings me happiness and joy! Although my narcolepsy does prevent me from doing everything I might want to do, I am making do. I only hope that I can maintain enough wakefulness to continue my caregiving duties. Right now, I must take several naps a day despite my meds. I am thankful I do not have cataplexy, and my heart goes out to those of you that do.

Not sure what the future will hold, but I am hopeful I can maintain some semblance of normal life.

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