Questions & Answers

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 was on prednisone for 3 months last year and it's the only time I've felt normal energy, but it stopped working and cannot be taken longterm so I was just curious if anyone has seen improvements while on prednisone for other conditions. It would make sense if narcolepsy is an autoimmune disease.

Hi everyone, I haven't had time to check into seeing about my sleep study that my doctor wanted me to do after I told him my medication after 16 years doesn't do as well. He is a family practitioner and doesn't know that much about narcolepsy and told me to go get another sleep study done. The more I research about sleep studies the more scared I become. I've seen where some are not accurate. And another thing I dont think I can go without my anxiety medication and we have to stop all… read more

My narcolepsy has gotten much worse in the past few months and my dr and I are trying different things to find something that works. My boyfriend gets frustrated because he feels like I sleep too much and that I’m spending so much time and money on dr visits and medicine and it’s not helping. I fall asleep sitting up while we are having a conversation and that hurts his feelings like I don’t care about what he is saying which isn’t true at all. I don’t know how to make him understand. I’m about… read more

Hello
I was diagnosed with narcolepsy in 2017 and up until now it has been pretty well managed. Recently, I have been falling back to sleep immediately after I wake up. I will start dreaming and become aware that I am dreaming/have fallen back to sleep which prompts me to wake up in a panic. In addition to this, I set at least 3 alarms as well as a timer to wake me up in the mornings. Ive started to have zero recollection of any of the alarms going off and have been late to work 3 times in the… read more

Hello
So quite often I get off of my sleep schedule simply because my mind does everything to avoid it. I stay up until at least 3 a.m. sometimes because I just.. can't bring myself to sleep. If I put my head down I probably could fall asleep but I seem to have something pulling me away from it. I don't know if I'm bothered by my nightmares more than usual sometimes or what
Generally I try to keep on a very strict sleep schedule but when I get off of it it is very frustrating.
Does anyone… read more

Hello everyone
So this is a strange question but I slept walk when I was a child then one day that transferred over to sleep talking. I have noticed often around me sleeping, things seem to be done that I do not remember doing. My alarms will all be turned off, doors will be open, objects moved around a little, and I have been told often that people conversed with me in the morning when I was still in bed and I never remember it
I like to call this sleepy me! It's the easiest way of… read more

I found out years ago that if I was falling asleep if I ate something that was high carbohydrate it helped with energy. Unfortunately those carbs take their toll and cause liver issues obesity and diabetes. I would supplement with caffeine. Also, I used to dump in about 3 Tbs. of sugar to my cup of coffee. I am now trying to wby with fewer carbs now and am losing quite a bit of weight but it’s hard. To quit those carbs. Also low carb high protein is hard on my kidneys and does nothing but make… read more