Narcolepsy Info and Experiences

A bit of my story with narcolepsy.

Category:

Education

Tags:

• Health
• narcolepsy
• cataplexy
• story
• sleep
• tired
• medical
• safety
• doctor
• dreams
• girl
• student
• wakefulness
• awareness
• hopeful
• paralysis
• tests

[KristalynJ]

You need a spinal tap to check for if your body is prouducing "Hypro-cretin' in the brain. Hypocretin is the chemical produced in the brain that tell the body when to be awake and when to sleep. 90% of ALL Narcos tested have little or none. They are pretty sure it's an "auto-immune" disorder. They know our brain makes it but something is killing ot off-----we are getting closer!

[callieharlem]

@KristalynJ Thanks for posting, I read up on it after somebody asked about it and at the time I had no idea they were doing such things. Pretty cool really, although I really don't want a spinal tap!

[Shalixxa]

Hey Callie,Great job of explaining narcolepsy on your video. I have fibromyalgia. I don't know if you are familiar with fibro but it imitates a lot of other things like lupus, MS, etc. with a lot of "side dishes" like IBS, sleep apnea, RLS, etc. Lately I've been having some of the symptoms you describe when you were talking about narcolepsy and am not looking forward to finding out that I have more on my plate. Thank you for the information you provide. (Btw, I am a 54 yo male) ~Shalixxa~

[LadyRose1985]

I'm 26 and narcoleptic. I know how it is! My friends want to go out late and such, and they don't understand that it can take several days or even weeks for my sleep schedule to recover from something like that! People just don't understand that it isn't just being sleepy--it is the NEED to be asleep RIGHT NOW. I really can't describe it to anybody who hasn't experience it.

I also get the sleep paralysis and hallucinations. Used to be creepy--now just annoying.

[kraken111111]

well i tink the normal narcolepsy. not so bad as the narcolepsy pp get of the the vacine a lot of pp get sick off. Well usa got a vacine whitout that thing we get sick off. On me.

so pretty mutch pp was getting sick

[ashtravel]

I've been living with narcolepsy and cataplexy since I was a teenager.. I'm now 47....this is a very good video explaining our problem. I have never actually met anybody with narcolepsy so watching videos such as this are a great help in understanding the things we have to deal with on a daily basis.

[kandi4561]

Narcolepsy is a very frustrating disorder. I commend this young woman for speaking up about it. It is hard for those without it to understand how difficult it is for us to cope on a daily basis.

[giersy]

@callieharlem Hi, I also have Narcolepsie. I know so well what you talking about. I heared about that there is al medication for it. Is that stuff just help you with the sleeping of is that helping also in other sectors?

It would be cool, If you can help me with this information.

[marcymrp]

I'm SO glad for you that you had a good doctor who clued into your symptoms.

I'm 57 years old & until last year, could NOT get a doctor to listen to me. I didn't think to research narcolepsy as I thought cataplexy HAD to go with it! For 30 years, dr.s told me I was depressed. I finally got a dr to agree to give me adderall after I did all the research, but he didn't REALLY believe & AND didn't ever order test. Last last month, finally got the MSLT and finally PROOF! A LOT of wasted years!

[sweethindi]

I sometimes find myself super drowsy, if i dont sit or lay down, i will fall right asleep. When i was around 18, i had no idea about Narcolepsy. My parents have always called me lazy, telling me they were embarrased their daughter had to sleep so much. I stumbled upon a page a few years back and found out about narcolepsy. Now I understand, but they still don't :(.

[djsaintjoel]

FANTASTIC video! I just began the process of sleep diagnosis, and my doctor wants to spend a month treating my Restless Legs Syndrome before doing a sleep study to test for Narcolepsy, but I feel just like you described! The phrase "Tired to the very core" really does sum it up. I have missed work, missed parties, missed family events, fallen asleep in public, and even had to pull off of the highway for a nap so I wouldn't crash and kill myself. It is good to know that there is hope.