Narcolepsy too?

Discussion in 'Fibromyalgia Main Forum' started by s--raquel, Apr 21, 2007.

  1. s--raquel

    s--raquel New Member

    Anyone else also diagnosed with Narcolepsy? I am sorta in shock...I have been diagnosed with so many things that I cant even tell my husband or daughter....Im not sure why.Having it would make most of my other diagnoses and symptoms worse...and so treating it could probably really help. Its just that everytime I find out I have something else...I think "I'll treat this and will be sooo much better!" Im sure my family feels the same....and then it's always something else!! So many Doc's have had different opinions...maybe I don't trust the diagnoses myself? Maybe I don't trust trying more meds,etc? I am going to probably start treating this soon and so I'll need to share this with at least my husband...Im usually very open about everything...very extroverted...but this seems really hard this time...and it's not even such a horrible thing. Anyway, anyone else have it and how are you treating it? Any help would be great! THANKS TO ALL!!!!
  2. mujuer

    mujuer New Member

    that picture you have on your bio is worth a million bucks. Those two would definetely keep me going. You poor thing to have so much wrong. How did you get diagnosed with narcolepsy? Did you do a three day sleep study? I did and they said that I had narcolepsy. It took me a few months to play detective and figured out that it wasn't narcolepsy at all. It was a side effect from all of the strong med's they had me on to sleep (xyrem) and some duragesic patches just to name a few of them. As soon as I went off, no more narcolepsy. This was like in the springtime. At the end of the summer when the heat really cranked up here I did have letharagy but it was due to my fibro and would have to take cat naps and couldn't drive during the mid afternoon. When the weather cooled down then it was gone unless I overdo myself.

    There is an older gentelmen in his late 70's at my church who does have narcolepsy though and I know he told me that he takes something and it really turned his life around but I can't remember what it was. Sorry.

    Hope they find some relief for ya' soon. P
  3. s--raquel

    s--raquel New Member

    Thanks for the reply mujuer! That pic does say it all for me!! My Blessings!! I love them with all my heart!! I got diognosed after 2 sleep studies...but wasn't diognosed by a sleep doc! But in both sleep studies I went to sleep immediatly and never went to stage 3 or 4 sleep...also was in dream state most of night. I could sleep all the time and still be sleepy! Ive treated the sleepyness with stimilants...but am hoping to get a better(deeper) nights sleep b/c this is what my dr says is making me so ill,so often, with sooo many different things!! He says my body cant heal itself, no growth hormone released, if I cant get stage 3 or 4 sleep...so im trying to decide the best way to go about getting deeper sleep. Im taking it one step at a time and counting my blessings as I go!