Teen with Narcolepsy?

Updated on February 02, 2012
T.F. asks from Mulberry, FL
4 answers

So my son has been telling me he thinks he has ADD for like twoyears. I've been telling him that he has never shown signs of it, and maybe if he got decent sleep at night, he would be able to concentrate better. He often stayed up late and said he had trouble sleeping because of bad dreams. Little did I know what he was describing as nightmares that keep him up were actually bouts of sleep paralysis with hypnopompic hallucinations. In other words he would wake up, unable to move from being paralized, and see horrifying things around him. I didn't know this is actually what he was dealing with at night until recently. He came to me a few weeks ago practically in tears telling me I have to find a a way to make these nightmares go away and I started really listening to him and realized he as NOT having run of the mill bad dreams. I did some reaearch, came across sleep paralysis and hypnopompic hallucinations and he agreed this was exactly what he was dealing with. Basically your brain paralizes a normal person during REM so they dont act out their dreams, but when this system is not working properly you can wake up, while still paralized and actually see your nightmare unfolding in the room around you, unable to fully wake, scream etc...it can last 5 minutes but seems to last longer. This leaves him scared to fall back asleep, hence his insomnia.... He has seem shadow people, demons, just scary scary stuff. We saw a nuerologist on Monday who told us that these were symptoms of narcolepsy. He also, thankfully assured my son it is a nuerological problem and that he was not losing his mind, nor was anything he experienced going to hurt him. Now he could have a REM disorder in and of itself with just the paralysis and hallucinations which will go away if he takes a med that suppresses his REM. Or, because of the lack of concentration and falling asleep all the time plus these symptoms he could actually have narcolepsy without cataplexy ( when people lose muscle control and seem to just " go out" suddenly) He is having a sleep study done 02/15 followed by a daytime sleepiness study the next day. Anyone out there have a teen with narcolepsy??? What am I looking at ? Any info would be helpful. Anything I need to know about meds? Thanks in advance.

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answers from Los Angeles on

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.

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answers from Miami on

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.

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answers from Dallas on

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.

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answers from Denver on

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!!!

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