Check out the MyNarcolepsyTeam Resource Center if you need a place to start - https://www.mynarcolepsyteam.com/resources

I want to know about one of your best days you have had with your narcolepsy. Tell me how you felt, who you were with , everything.

Narcolepsy can be associated also with less conspicuous problems, including introversion, sorrowfulness, feelings of inferiority, impaired affectivity modulation, emotional lability, irritability, aggressiveness, and poor attention that some authors have defined as the “narcoleptic personality” (4).Mar 18, 2020

Since the hypothalamus gland is affected what type of symptoms have you experienced besides excessive sleepiness?

Not sure if all of my bizarre symptoms are directly related to narcolepsy but some might be.
The symptoms I am trying to figure out are :

Low grade fevers (10-15 per month)
Subclinical hypothyroidism with normal t3 &t4
Extreme chocolate milk craving (about 40oz a day)
No appetite, without weight loss , no thirst either

Very interested in others symptoms, sometimes patients can… read more

I’ve have sleep apnea yet after 21 years of dealing with sleepiness I’m getting frustrated on which sleep disorder is happening. Starting to have a paralysis upon awakining each morning k

I don't know - selecting people for my "team" seems playing favorites with people I don't know. That seems weird to me.

I have a teenager with narcolepsy who is really struggling. He has had averse reactions to medications and has a hopeless attitude. I can see how much he is struggling and suffering. When I try to help him and make suggestions, he gets angry with me and frustrated. He has a lot of supports in place but he is in the worst place right now. How do I support him and support myself at the same time? It is so hard to be a mother and feel this helpless.

Interested in advocating for better social awareness, medication/care access, and research on conditions. Anyone with any tips on how/where to get started?