Narcolepsy and falls

Discussion in 'Fibromyalgia Main Forum' started by mumsiej, Aug 16, 2006.

  1. mumsiej

    mumsiej New Member

    Hello,

    I have had a sleep study and been diagnosed with narcolepsy. All I know is that I get so tired that I simply cannot keep my eyes open. During three episodes I hurt myself--put a gash in my head, cracked a rib and broke a wrist. I was standing up when I broke my wrist, sleepwalking when I fell and gashed my head.

    My sleep doctor has put me on Ritalin and Allderal and Provigil--they either made me more tired or so wide awake I felt like I had a buzz or high. The most recent thing he told me is to take power naps--huh???? I can't control when these episodes occur and all I have learned is to recognize the symptoms and head for the sofa and sleep.

    This really scares me and I am afraid one of these times I am going to fall and kill myself.

    Thanks~mumsiej
  2. PVLady

    PVLady New Member

  3. Shannonsparkles

    Shannonsparkles New Member

    Mumsiej, I'm glad you can tell sometimes when you are about to have an attack of narcolepsy and lie down safely.

    This may sound crazy, but have you heard about the dogs that are trained to help epileptics? They can sense a seizure approaching and get the person to stop what they are doing and lie down before a seizure occurs. Then they stay with the person until they are able to get up again.

    I also read about a buisinessman who had narcolepsy. He had a dog with him constantly, even at work. The dog's job was to wake him up when he would fall asleep.

    All dogs aside, it sounds like your doctor may not have a good understanding of narcolepsy if he is suggesting power naps and doesn't understand that your episodes are involuntary. Could you ask to be reffered to a specialist for this? There may be information available on the internet about what kind of treatments are available, so that you can be more informed.

    I'm sorry you have this scary and dangerous condition. I hope something will help. Has the narcolepsy just started?
    ((( )))
  4. Shannonsparkles

    Shannonsparkles New Member

  5. jrose

    jrose New Member

    My daughter, who is now 26,was diagnosed with narcolepsy at age 14. She has the whole works-the cataplexy(falling down),sleep-onset hallucinations,sleep attacks. The doctor gave her elavil at bedtime. She doesn't take it anymore and rarely has cataplexy now. She still has to take naps. She said that she is more likely to fall asleep when she is bored. She has found that she functions better when she divides her Provigil dose in 2. Hope you find help. Judy
  6. Daisys

    Daisys Member

    There is a very active community of people with narcolepsy at the Talk About Sleep site. I think you would find them very helpful.

    I go there to get info about xyrem, since many of them are on it. For fibromyalgia, the best help is right here, of course. ;-)