Teen with Narcolepsy?

I don't mean to "poo poo" what the doctor said, but don't be 100% about a diagnosis of narcolepsy. In my early 20's... I went through a phase of falling asleep, having a scary dream (usually about a ghost in the house that would linger in my room), not being able to MOVE/talk/wake-up/NOTHING. It really was a living hell, and I dreaded going to sleep and would stay up to prolong the inevitable. I would explain it to friends and family and I know they thought I was nuts. I would explain it as being fully awake and aware of your surroundings on the inside and COMPLETELY paralyzed on the outside. I would fight myself to wake up and my body just wouldn't...by the time I finally came out of it, my heart was pounding and I felt like I ran a marathon. I lived with a boyfriend at the time and he had no idea it was happening. It simply appears as though you are sleeping peacefully and soundly. I didn't even know there was something you could do about it. Kudos to you for listening to him, researching what it is and working toward getting him relief. I wonder if an Angel Care baby monitor would work to detect when his heart rate increases so you could wake him up...? Your poor son is much younger than I was, but the great thing is that it was a passing phase of strange phenomenon that can't be explained. I haven't had an episode in ages... THANK GOD! Reassure him that he's not the only one that has gone through this and that IT WILL get better.

OMG, your poor son! He must have been terrified! I have no advice to offer just a prayer that he get better, soon. Good job listening and reacting.

I had a student, a senior in high school, two years ago who had narcolepsy. I knew his mom fairly well because she was an active volunteer at the school for years until her son graduated. Her son didn't have the nightmares your son has, but he did have narcolepsy. He took medication, and that helped him quite a bit. I don't know what medication it was. If he forgot to take it, he would fall asleep at random times. He would just be sitting in class and fall asleep sitting up straight.

I hope your son gets the help he needs. It certainly sounds like you are doing everything you can to help him.

My dd has secondary narcolepsy. She doesn't have the nightmares, but has the severe sleep deprivation, extreme daytime sleepiness, insomnia, no REM sleep stage, etc. She's 19. She also has narcolepsy without cataplexy. I'm assuming the sleep study you're having done is a Multi-Sleep Latency Test (MSLT). Our doctor sent her blood test to the Mayo Clinic where they did a gene test and found out that my dd has the narcolepsy gene (the doctor said it was like her body has permission to have narcolepsy). It doesn't mean she has true narcolepsy, but that she can develop the symptoms. For her, it came after two viral infections, and it's called Post-Infectious Secondary Narcolepsy. You might ask about that gene test. And you also might look back and see if your son had any viruses or infections or illnesses before all this started. Trazodone has helped. We've tried everything else. I know, it's frustrating and exhausting and frightening. Good for you for listening to your son!!!