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Real members of MyNarcolepsyTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Treatment For Narcolepsy Without Diagnosis

A MyNarcolepsyTeam Member asked a question 💭
Fitzgerald, GA

Has anyone ever in the past been told by a doctor they think you have narcolepsy and put you on meds for narcolepsy. This happened to me years ago. Just wondering if anyone has ever been diagnosed with narcolepsy with a physicitrist when you told them all of your chronic health issues . Mine ask alot of questions about all my disorders and concluded that I did have narcolepsy in his judgment because as a child the mental issues I had up until adulthood was linked to narcolepsy. Physicitrist if… read more

June 13, 2021
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Answer Summary

Members shared their varied experiences with narcolepsy diagnosis and treatment, with some receiving medications like modafinil, Adderall,... Read more

Members shared their varied experiences with narcolepsy diagnosis and treatment, with some receiving medications like modafinil, Adderall, Paxil, and clonazepam based on psychiatric evaluation alone, while others emphasized the standard requirement of sleep studies showing REM sleep within specific timeframes. Several members described managing multiple overlapping conditions including narcolepsy with cataplexy, sleep apnea, depression, and anxiety, coordinating care across multiple specialists who often don't communicate with each other. A recurring theme was the life-changing impact of finding the right medication combination and the importance of self-advocacy when navigating complex diagnostic journeys and skeptical providers.

A MyNarcolepsyTeam Member

I have narcolepsy with cataplexy. Sleep apnea and bipolar depression. I’m on several meds & sleep with a bipap. With all this I’ve been able to work full time. I still have some sleepy episodes but few & far between. Also I put my car in park at red lights.

July 19, 2021
A MyNarcolepsyTeam Member

Recently it is you have to hit it 2/5 times, and I think you have to hit it within 15 minutes of falling asleep (as of late 2020)

June 14, 2021
A MyNarcolepsyTeam Member

I'm pretty sure (at least in the USA) you require a sleep test to be diagnosed with narcolepsy. A psychiatrist can't diagnose it especially because there are many sleep disorders. If you have cataplexy then that is definitely more telling but I think you still require a sleep test to look at your REM.

June 14, 2021
A MyNarcolepsyTeam Member

I see several specialists in addition to my primary dr. They don’t talk to each other but I keep them informed.

July 19, 2021
A MyNarcolepsyTeam Member

I was diagnosed 20 years ago. I was put on medicine. My new doctor decided she didn't want to refill them anymore, she sent me to a neurologist who didn't think I had narcolepsy. He sent me to a pulmonary doctor. They did and over night sleep study.
Went back to discuss the results. I saw another Doctor in the team. He believes me!!! He said I do not need another study to prove I have it. My PCP wants me to do though. ugh. All night and all day.

June 27, 2021

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