Help...Narcolepsia/Provigal/Chronic Fatigue ???????

Discussion in 'Fibromyalgia Main Forum' started by sharon5650, Dec 8, 2005.

  1. sharon5650

    sharon5650 New Member

    Hi there, narcolepsia and chronic fatigue are the same, what do you think?? I was reading on it, they use provigal for narcolepsia. I actually get so tired, I can fall asleep on trains, buses, and end up at the end of the line and have to come all the way back. I can fall asleep when I am awake with my eyes open at times, if you know what I mean. I start to haulicinate if I am talking to someone for to long and I am getting tired, I actually see there faces becoming distorted. So who knows maybe I have narcolepsia, almost the same, what do you think? I am so curious to know what others are thinking of this....please answer me???
  2. sharon5650

    sharon5650 New Member

  3. sofy

    sofy New Member

    from the 2 day sleep test. That was just one of many diagnosis. Now I know its lyme disease. I use to even fall asleep standing in a line.

    When I had the sleep test I was still trying to hold onto my business but lost it within a couple of months due to the fatigue that made me only too tired to stay awake but unable to do any math or reading.

  4. ScooterD

    ScooterD New Member

    The key symptoms for narcolepsy are excessive day time sleepiness (duh!); cataplexy which is the sudden loss of volunary muscle control usually triggered by emotion; hypnogogic hallucinations - vivid realistic often frightening dreams and sleep paralysis or the inability to move usually upon falling asleep or waking up.
    Symptoms can also include performing routine tasks and not even realize your doing so and multiple sleep arousals.

    I suffer from all of the above except the cataplexy; and the hallucinations come and go.

    I've been on Provigil for about a year and my experience is kinda weird because it effects me differently every day. Some days it keeps me from falling asleep while working (i'm still very tired - just not fatigued); some days it doesn't do a darn thing; and some days (rare)it zips me and I can almost be like my old self.

    It's probably the most difficult part of my illness and I'm hoping someday a medication will work so I can have more than three days a month of wake time. :>)

    Best of luck to you!
  5. springrose22

    springrose22 New Member

    They are not the same at all. One Dr. tried to put me on progivil, but I did research on it with the pharmacist, and decided I wasn't going to be taking a drug for Narcolepsy, because I don't have that, I have CFS. They are not the same, do a bit of research online, and you will see. Take care. I have to go lie down. Marie
  6. kalaya

    kalaya New Member

    These two illnesses are different but the bone crushing fatigue of cfids is easy to mistake as narcolepsy because we feel as though we could lay down on the cement and fade off to a contented 8 hour slumber.
    This is not narcolepsy.I myself pondered if I did have narcolepsy during bouts of being so fatigued that I was nearly nodding off during normal waking hours while at work or in the car.We do not suffer from narcolepsy but some of the symptoms are similar.This is one of the dillemas with cfids and this is that this illness mirrors several other illnesses.God bless.
  7. elsa

    elsa New Member

    But they are different illnesses. Some CFS people also have narcolepsy, but they are not interchangable ...

    You are on a correct path thought-wise though ... just got the wrong sleep disorder. CFS/FMS patients have specific sleep disturbances ... Alpha Intrusion and/or Abnormal REM. These are easily diagnosed with a sleep study that includes an EKG. (I say easy, but as always, some of us have a difficult time pinpointing their exact sleep disorder.)

    Provigil is approved for "excessive daytime sleepiness" which is a characteristic of narcolepsy and CFS/FMS. It is also approved for swing shift workers and off label. Our illness includes EDS in it's criteria for diagnosis. Provigil is a logical choice for us. It doesn't work for everyone, but it has been greatly helpful for many of us.

    Not taking provigil because it is a narcolepsy pill and we have CFS, not narcolepsy, is painting yourself a bit in a corner. There are no pills "created" for CFS ... does that mean we can't take anything until there are some rx'es approved for CFS? That could mean a long wait without relief from our symptoms.

    Since the words excessive daytime sleepiness show up in provigil's list of things approved for, we are covered for it's use.

    Take care,

    Elsa
  8. sharon5650

    sharon5650 New Member

  9. springrose22

    springrose22 New Member

    I know that there is no one pill to cure CFS, but I also know that there are pills to avoid if you have CFS. LOL My Dr. suggested Progivil but I didn't want to take it because it is stimulant. Sometimes stimulants and people with CFS don't mix very well. However, after some discussion, I thought I would give it a try. Then, I didn't sleep for 3 days, became very ill, bedbound, in fact. That's where I am coming from. I do best when I watch very carefully what I put in my mouth. Later. Tired. Marie