Familial Fatal Insomnia

Discussion in 'Fibromyalgia Main Forum' started by matieofleaves803, Jul 13, 2010.

  1. matieofleaves803

    matieofleaves803 New Member

    I really don't want to be up. I really don't want to. But seeing as how I am....I thought I'd tell every body something I learned tonight. I was watching The National Geo channel, a show about the subject line. It was about people who died of insomnia because the thalamus, a little organ deep in the brain, had leisons in it. The thalamus sends "shut off" signals to another part of the sleeping part of the brain and if it is damaged, there is no sleep. Ever.
    Now what interested me was another show I saw that featured a doctor who had her own Fibro/CFIDS center and she said "We know it is a thalamic disease."
    Don't panic. Only 80 families in the world are known_ to have this disease, FFI, But I think that it's interesting to us, anyway. Just another piece of the puzzle.
    TRhey're redoing my kitchen, and the smells and the fumes and the over-stimulation...
  2. heapsreal

    heapsreal New Member

    ditto to that too aussie
  3. kat211

    kat211 New Member

    I can send you one of my accounting text books. That will put you right to sleep! Works for me every time (and that's about 4 times a day)!

    Have you worked on your 'sleep hygiene?' I have found that I am sleeping much better now that I tool the tv out of my room and when I don't allow myself to take my laptop to bed with me. I watched a movie on my laptop last night in bed and I had a terrible night's sleep and feel like poop now.

    I also found that my pre bed routine has a lot to do with how well I sleep. If I follow my routine, including all of my lotions and anti-stretch mark stuff, I feel relaxed enough to turn off the light and nod off. If I don't follow my routine, I end up playing a game on my phone for hours. I also sleep with an organic cotton sleep mask. It helps relax my face muscules.
  4. u&iraok

    u&iraok New Member

    My husband has extreme insomnia which he's had since a blow to the head as a child. He goes nights without sleeping, most was 3 or 4 I think, and never sleeps more than a few hours a night, never more than 6 total, not consectutively,and 6 is woweee! When he gets worried about it he says he thinks he has Fatal Famalial Insomnia and I have to reassure him, no dear, you don't. :) Nothing works on him though Ambien helped but the side effects he got after a while were scary!!!

    But how horrible to have FFI, to wait until you're in your 30's or 40's and you stop sleeping. I read a recent article about two sisters or cousins who has it in their family and one got tested and doesn't have it and the other doesn't want to get the test.

    I'll take my sleeping problems over this and my husband's terrible insomnia.
  5. kat211

    kat211 New Member

    HAHAHA! I just woke up from a nap and had some under garments on my head. My son was laughing hysterically. Laundry is my biggest battle as far as house work goes. I would rather clean the toilet than do laundry.

    While many people day dream about winning the lotto, I dream of being able to pay someone else to do my laundry and put it away.

    BTW, good job at getting it folded!