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Do You Experience Insomnia With Narcolepsy? Any Ideas To Help With Insomnia?

MyNarcolepsyTeam asked a question ๐Ÿ’ญ
San Francisco, CA
October 28, 2022
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Answer Summary

Members overwhelmingly confirmed experiencing insomnia alongside narcolepsy, with many describing the frustration of being exhausted during... Read more

Members overwhelmingly confirmed experiencing insomnia alongside narcolepsy, with many describing the frustration of being exhausted during the day yet unable to sleep at night, often due to stimulant medications taken to stay alert. Several members shared practical strategies that have helped them, including taking certain medications at night instead of morning, using melatonin or magnesium supplements, establishing calming bedtime routines with essential oils or herbal teas, playing low calming music, engaging in quiet activities like puzzles or video games when unable to sleep, and for some, using prescription sleep aids like Doxepin, Prazosin, or Lexapro. A recurring theme was the isolating nature of trying to explain this paradox to others who don't understand how someone can be both chronically sleepy and chronically unable to sleep, with many members finding comfort in knowing they're not alone in this maddening experience.

A MyNarcolepsyTeam Member

Yes. I take magnesium before I get under the covers. Tried melatonin but developed resistance to it quickly. I also have a lavish nighttime routine that helps my body know Iโ€™m winding down. I also enjoy solitaire or word puzzles to help me sleep. My phone also goes on sleep mode by 11. I also smoke weed or use a cbd tincture to knock me out.

November 26, 2022
A MyNarcolepsyTeam Member

I hear you on that. I have been diagnosed with depression and anxiety and I get suicidal thoughts with that when I have an episode occur(about two to three times a week). I sometimes can't sleep because of that. However, when I take the prescription medicines for that along with everything with the antidepression medicine I may sleep(and have slept)as much as 16 hours in one day.

February 1, 2023
A MyNarcolepsyTeam Member

I battle times with insomnia.. it isn't bad but there are times my mind just won't stop. That is different than what triggers the narcolepsy. It is hard to explain to others. I get it.

January 4, 2023
A MyNarcolepsyTeam Member

It makes you feel insane to explain that to others who don't suffer from it. I don't know about anyone else but I also suffer from sleep Paralysis with hallucinations on the nights I crash. That truly makes me feel insane.

October 30, 2022
A MyNarcolepsyTeam Member

I was diagnosed with insomnia since I was around 7, then at 38 I fell asleep for 18+ hours a day for around 6 weeks. The past two years have been a struggle with narcolepsy type 1 diagnosis earlier this year. Despite classic narcolepsy symptoms I still have bouts of insomnia that last a few weeks. Then I go back to the narcolepsy sleepy all the time during the day and tossing and turning and scared at night from vivid dreams and hallucinations. I prefer insomnia and that feeling much better than narcolepsy 1.

October 29, 2022

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