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
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
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?
Looks like a new, timed-release version of Xyrem/Xywav might be available soon that will eliminate having to wake up and take a second dose.
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 do not take meds. To pursue the doctor route I would have to give up my license and be told I'm wrong until proven right. So I do caffiene. A lot of caffiene. I know there are others in my boat but in many casses people have said they take supplements. The caffeine is killing me. I consume on a good day 1200mg and on a bad day 3000mg of caffeine. Are there supplements I can take to take it's place or at least cut it back?
We never share your personal information with anyone.