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 am thankful that after being diagnosed with NwC, I got educated and made changes to be able to function. Thankfully, I'm a fighter and I am no stranger to God's love ❤️ for us all. After many… read more
This past year I have come to realize that I have such a hard time getting myself in that mind frame to “go to bed”. Don’t get me wrong, it takes me only minutes to fall asleep, it’s just a matter of settling down to go to bed. I have tried no caffeine after a certain time, to no cell phone/computer use but I just have a hard time settling down. I have read where insomnia can occur. Does anyone else have this issue and if so, what medications (if any) can help this??? I do plan on talking to my… read more
My mind resists going to bed. I usually am up until 1 or later. It seems silly, just go to bed, but I resist consciously or not or or get downright panicky if I have had a really bad dream the night… read more
Don't judge me. This coming September I will have 4 years clean and sober. Since I was 25 and I have abused methamphetamine. And it didn't really get me high it just allowed me to function and do things that everyone else was doing my age. Has anyone else found that they were literally self-medicating with stimulants?
Having narcolepsy, does it make u angry or just a little upset when other people that really don’t understand you say “I wish that I could sleep like that” or is it just me? I’m saying “I wish that I could stay awake like u!”
I was dynose for Narcolepsy at a young age. I had to deal with it and on my own learned how to help myself. When in my 40tys I found out What I had and got on med. I would say being young in some ways coping was a learn g thing not saying it's easy young or older , but for some reason I would think it would be crazy finding out older. What you think - the ones that got it later in the years?
I feel very limited with the doctors that are "in network" and within driving distance. Does anyone have any recommendations on a good neurologist that specializes in narcolepsy that does virtual appointments?
I've had since I was young. I have gone into what seems a hybernation state several times for several months to years at a time since. I'm 56 now. If this has happened to me, why can't remission be figured out so that we can put Narcolepsy in remission always?
Automatic behavior is when your doing something and go into REM for a period ,when you come out, you can’t remember what you did, even though you still keep walking and talking. And no one can tell that no one is home unless you do something really stupid. It can last seconds or several minutes to like an hour. It’s just like sleep walking. It can happen once, or 100 times a day. You think it’s because your memory is bad, but it’s little black outs while you’ve slid into REM. I can’t find much… read more
I had something similar or it was what you are explaining it came at a time in my life when stress was high my sleep schedule was not being followed then the problem in my life was resolved and this… read more
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