Narcolepsy Support Group
A sleep disorder (somnipathy) is a disorder in the sleep patterns of a person or animal. Some sleep disorders can interfere with mental and emotional function. If you are having trouble falling asleep or having some other kind of sleep disturbance, this group is for you.
I have Type I Narcolepsy. I just want to communicate with people who have narcolepsy. I’m on other sites and can’t get people to talk. I’m not on Facebook so this is the only avenue I have. My wife and kids are great helping me through this but sometimes they don’t understand what I’m going through. I’m an open book. I’ll tell ya how I got to where I am and what’s being done to help me. Outside of my doctors and family I don’t discuss having narcolepsy. Let’s have a conversation about what we experience being narcoleptics.
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I did the dumbest thing today. I charged my earbuds, unplugged the block and put the block in my little bag instead of the earbuds. I wasn't happy about that when I got to the gym. What a dummy!
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Ever since I stopped doing therapy because of insurance, I've been feeling that old tense and irritable sense of anxiety and stress. I hate that. I was making so many strides and changes during therapy, my therapist would acknowledge all of my progress and accomplishments, and I miss that reassurance. Today I thought about it, and I made those changes! She would always tell me that I chose to...
Does 1998 qualify as old to this? 20 years after the formal diagnosis of Narcolepsy entered my life, I am still trying to get the conversation going. Nobody seems to want to talk about ^it^ for long enough to get to anything meaningful. The snippets of dialogue I've gotten going over that 20 years have been short-lived and ungratifying.
Still. . . Hope springs eternal.
Listening. . .
"Type 1" is a new qualifier for me. What does that mean?
My son's adolescent onset of narcolepsy seems to be a classic, all the way to long, tedious, expensive and volatile hunt for an explanation of the sudden shift in his behavior. By the time he was diagnosed in 1998, he was 18 and pretty anti-mom. The last I knew, he was still with the same sleep doctor who diagnosed him, but I have still never met him. I have respected his right to privacy --as best I can while living with him and paying his bills-- for that full 20 years.
As long as it is offensive to my son, I will continue to resist pursuing further investigation, but. . . I still believe narcolepsy runs through my blood-line like a freight train.
I too have Type 1 Narcolepsy(with Cataplexy). I am more than willing to share my experience with another. I was diagnosed in 1989 30 years ago!! It's hard for family and friends. My children when young I observed them both playing "mummys and daddys". Whilst most children would role play making tea, or going to the shops etc. My eldest daughter was observed to be on the floor after laughing having an episode of cataplexy and my younger daughter was seen trying to.bring her round. The impact is great it really is and takes so much patience and understanding. For us it is almost like being trapped in a lonely world and quite depressing at times. I have always pushed myself to keep going and to keep.positive, however I can relate to the deterioration and the severity of your disibility. I too have a severe case, I am medicated at the maximum dosage and currently off work. It would be great to hear from you.
Take care.