At 62 I still have those in my life that reguardless of drug test, doctors reports or any of the many items provided to help them understand. There are some who are going to believe what they want to believe. They still talk behind my back about it and some of my own family have chosen to keep their distance so they don’t have people think they are on drugs. People with little understanding and no ability to learn the truth are quick to place a label on anyone who is not exactly just like them… read more

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

Okay. Hello America, I mean USA. I'm from Poland. From the real one across the ocean. I'm human too, so I guess it doesn't matter
Well, I have narcolepsy and cataplexy, etc
I just got up and I just had "these experiences" that I would like to share with you and ask you a question.
Apart from all the sleep paralysis, dreams and side effects. My assumption/theory. "My body is connected to another physical body"
Regardless of whether it's another dimension, aliens, or a mysterious experiment.
To… read more

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.

so for the people that take xywav/xyrem, and happen to live in tornado alley, what do you do when the weather is bad overnight, and you have to work the next day? luckily, im off work right now but the way the recent storms are hitting, if i was working, it would be messing up my medicine schedule and im not lucky enough to have bosses that understand. how do these factors impact you?

L.A area
Need Sleep Study
Narcolepsy type 1 ( Dr. refer)
Daily attacks

I am so sorry for all of us with Narcolepsy plus a lot of us come with many other health issues. I think we have gone through a lot and if only the ones that don't get it would only go a day in our shoes. My friends here I would like to say I am proud of you getting by and doing what you have to to complete your days. This is our life and we have to except how difficult some days can be. Do you know we don't no how strong we are until we have to be. So fell good inside because I know you guys… read more

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

I currently live close enough to work that I can come home to nap if needed (1-3 times daily), but will be moving soon and will live over 1 hour from the office. Has anyone worked out a sleeping arrangement in the office? If so, what did your setup look like?