I Have Found My People
Last updated: September 2023
Currently, I am washing my medication out of my system, in order to participate in a clinical trial for a new medication that is believed to be a potential cure for Narcolepsy, imagine that?! This would actually be round two for me in this study.
Finding relatable articles
I stumbled upon this site as I was googling ways to increase my energy levels without medication. I read an article about how one community member scrolls on their cell phone in order to stay awake. I had never related to something so much before. I always thought that I was just addicted to scrolling and reading the comment section of controversial social media posts and also adding unnecessary items to my Amazon cart. I started reading article after article, finding myself reacting to the post using the "same" reaction more than anything else!
Sleepy since childhood
A little about my story: I am 28 F, and I was formally diagnosed with Type 1 narcolepsy at the age of 15. I have been sleepy my entire life, from my mom bringing me home from the hospital and I slept for 24 hours straight, to my mom asking the doctor is it normal that a 6th grader still take naps every day after school. I had never fallen asleep in school.
My first sleep attack
I had my first sleep attack my freshman year during mid-year exams. I was writing an essay and next thing I know my friend is waking me up telling me that I had fallen asleep! I looked at my paper and I had wrote about two lines of my dream that I was having. I crossed it out and finished my essay and went on Christmas break where I slept as usual. When I returned to school, I could not stay awake in class at all! I was new to this school, recruited for diversity, and now I just look like the lazy Black kid here on a free ride. I was so sad and felt so defeated. I cried to my mom and saved my lunch money so I could buy a Red Bull, that did not end well!
Narcolepsy diagnosis and medication
At some point I had H1N1 flu and I believe that triggered the onset of my narcolepsy. My grandmother has it so from my understanding, it is hereditary. From that semester on, I had to go home and teach myself everything that my peers had learned in class in order to have a fighting chance. Thanks to networking, I was able to get an appointment with the neurologist within a month versus the original 9 month wait that was quoted. I was had my sleep study completed and by the time I started 10th grade, I had both the diagnosis and medication. Earlier on I was prescribed Ritalin and Concerta, these medications were harsh and terrible for my moods. Eventually I was prescribed Nuvigil, but the doctor failed to mention how expensive this drug was, especially compared to Ritalin. I assured my mom that I would make do with the Ritalin, because I knew she could not afford to pay $600 a month for Nuvigil. I went on to college and struggled tremendously, but I am happy to say that I am finally going to graduate this December! It has been 10 years since I started my undergrad degree. It is not a race, I know that now. I struggle to have a desk job, but have no energy to perform laborious jobs, so working is always dreadful for me.
Onset of cataplexy
Cataplexy has never been a huge issue for me, until I did my first round of the clinical trial medication. After the trial concluded, cataplexy was hitting me like no other!! I informed the study doctor he prescribed Armodafinil and Impramine to help with the cataplexy. This is the medication duo that I am weaning myself off of right now. Any medication that I have tried never has given me energy or motivation to get up and be productive. I am hopeful that with my help, researchers can actually find a cure so one day I can live a normal life.
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