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How Do You Manage Your Narcolepsy At Work?

MyNarcolepsyTeam asked a question 💭
San Francisco, CA
September 16, 2022
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Answer Summary

Members shared deeply personal stories about managing narcolepsy at work, with many describing the difficult decision to retire early or seek... Read more

Members shared deeply personal stories about managing narcolepsy at work, with many describing the difficult decision to retire early or seek disability after falling asleep while driving or being unable to maintain focus in demanding jobs like nursing, teaching, and medical fields. Several members offered practical strategies that have helped them stay functional, including strategic napping during breaks, combining medications like Modafinil with Ritalin or Adderall, drinking coffee throughout the day, taking jobs that require constant movement, using FMLA accommodations, working from home with flexible hours, and being honest with understanding employers about the need for short rest periods. A recurring theme was the immense struggle of balancing full-time work with parenting and basic life enjoyment while managing unpredictable sleepiness cycles, with many members expressing frustration over medication limitations, financial pressures that make part-time work difficult to afford, and the emotional toll of feeling like they cannot keep up with what others expect.

A MyNarcolepsyTeam Member

I'm retired now, for 2.5 years (yay me!!) but I would nap on my lunch break and eat lunch at my desk while working. Sometimes catch a little microscope on a 15 minute break. I also had FMLA with time for naps built in when needed. I was fortunate to have a private office for some of my work time ...other times I napped in my car and hoped my alarm woke me!! It generally did. I somehow kept myself from falling into a deep sleep. Some days I had to pull over on my way home to catch a nap, and most everyday I fell into bed as soon as I got home for a nap.

January 6, 2023
A MyNarcolepsyTeam Member

I’m a teacher and I have an accommodation to take 2, 20 minute naps each day. They have been helping me. The days like day when I didn’t take them all goes to hell and I’m falling asleep standing while trying to teach. The students know to say “ wake up Ms.” The antidepressant Effexor saves me from the hundreds of cataplexy attacks I was having everyday. I’ve currently been off of it so that I can hopefully begin a clinical trial for a new medication becoming no medication seems to truly help the daytime sleepiness. I currently take 200 of the modifinal and it only takes the edge off. I also have severe ADHD so I take Concerta and ritilin too.

September 27, 2022
A MyNarcolepsyTeam Member

I've read different Meds work for all of us and some have no affect at all. Each individual differ. For ex: xyrem was prescribed for me....I suffered severe side effects and was recommended to be removed from the liquid.

September 22, 2022
A MyNarcolepsyTeam Member

Bring a nurse, I am honest about when I feel like I need to step away for 15 mins and shut my eyes. I find a coworker to keep watch over my patients. If it’s too busy to step away, I have a prn adderall to take. My cataplexy symptoms have gotten much much better since starting xyrem.

September 22, 2022
A MyNarcolepsyTeam Member

I also start my day with ( 2) Modfaninil 200 mg along with fluoxentine (20mg) and just 2wks ago because My Cataplexy had gotten severe I now take Adderall. I don't like taking medication anyway, I couldn't perform my duties as a CNA , I have to be focused at all times.

September 19, 2022

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