Hey Jennifer. I read your question and saw where the team explained the medical side of this disorder. I can try to explain a little from a patients side.I was diagnosed with Narcolepsy in 2021. I had been having terrible problems with falling asleep and falling down. Talking to people while I was asleep. (I don’t mean talking in my sleep) I mean sleeping while I’m talking. I broke several bones the first year. I finally got a dr and he put me thru 2 sleep studies. He thought it was sleep apnea till I did the first test. When he realized it wasn’t he gave me the 2nd study. That is when I was diagnosed. My advice is talk with your primary and ask for a referral to a neurologist . Good luck to you!
June 16
Diagnosing narcolepsy can be a long journey — on average it can take up to 15 years to get a definitive diagnosis, partly because symptoms develop slowly and can look like other things. The process usually starts with a detailed conversation with a sleep specialist or neurologist about your symptoms and sleep history Show Full Answer
Diagnosing narcolepsy can be a long journey — on average it can take up to 15 years to get a definitive diagnosis, partly because symptoms develop slowly and can look like other things. The process usually starts with a detailed conversation with a sleep specialist or neurologist about your symptoms and sleep history. Here's a breakdown of the typical steps involved:
- Epworth Sleepiness Scale — A questionnaire that helps measure how likely you are to fall asleep in everyday situations
- Sleep diary or actigraph — You may be asked to track your sleep patterns, or wear a wristwatch-like device that monitors sleep activity
- Polysomnogram (PSG) — An overnight sleep study that records brain activity, eye movements, breathing, and muscle activity while you sleep
- Multiple Sleep Latency Test (MSLT) — Done the day after the PSG, this test has you take five short naps throughout the day to measure how quickly you fall asleep and how fast you enter REM sleep
- Hypocretin level testing — A lumbar puncture (spinal tap) may be used to measure hypocretin levels, which are low in type 1 narcolepsy
- Genetic testing — Sometimes recommended when symptoms and other test results are unclear It's worth knowing that narcolepsy is frequently misdiagnosed, so if something doesn't feel right about your diagnosis or treatment, it's always okay to seek a second opinion from a sleep specialist.
June 13
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