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About april22

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  • Interests
    Celiacs,Narcolepsy, Sleep, Weight, <br />
  • Location
    Beverly Hills
  1. OMG- didn't even occur to me that medications have gluten in it! Thank you! My doctor recommended I consider Provigil. I am temporarily on Xyrem- which I am fairly convinced has no gluten, as I feel great. I was on ritalin for years and later on dexedrine. Ritalin is far better of the two. How much Ritalin do you take? I think Dexedrine messed me up. I quit cold turkey when I graduated school. Gained 45 lbs in two months and have had a few miserable years. It has taken me years to realize that the main cause of my narcolepsy attacks is gluten and possible msg. None of that - no narcolepsy. The repair of my metabolism has been slow and painful...so my advise to you is that if you ever plan on coming off of it- follow the orders of tapering off slowly, maybe you can avoid my struggles.
  2. Hi Candy I got a little worried when I read your post. I have narcolepsy and used to do just what you did. I binged on coffe and caffein for years. As Sjogren's is an autoimmune disorder - adrenal burn out - which huge amounts of caffein causes, is of concern. I am sure you must have thought of getting tested for narcolepsy? I am not for drugs - but sometimes one type of drug might be less damaging than others - and some of the narcolepsy drugs are not stimulants. How is your nightsleep? and what do you do for a living. Is wheat all you have cut out and what other things have you tried. Did your doctor test your vitamin D levels, Hb1Ac, Iodine and RBC magnesium? Have him do an adrenal test just so you don't make yourself worse in the long run. I did a number on myself and have worked years to try to repair the damage- not easy...
  3. When I read what you all are writing - this will sound a little strange...- I almost get jelous! I was diagnosed with narcolepsy - but after years of trying to figure myself out, I have come to realize that I think i really have celiac, with mostly brain symptoms. I now know how important it is for me to stay off gluten, but my association of pain and being sick, is not there. It would be easier for me if they were. When I eat gluten, I will fall asleep within the hour, or at least be more or less tranquilized. It will dramatically reduce my energy levels and ability to focus. It takes a good week of complete avoidance before my energy is up to normal. And yes - the dreams. Vivid dreams with sensations of touch and pain. Both amazing experiences and horrible nightmares. Sometimes I am not able to figure out if it is happening or if it is a dream. I know that gluten mimics opiates and I think they attatch to the same neurotransmitters- maybe it is an addicted brain talking? It does cause an addictive behavior in me.. When I look back on my childhood I realize that most likely the recurrent ear infections, the severe menstrual cramps and abdominal pains were probably a reaction to gluten. For one month no I have been 100% off gluten! It is a first for me. I had not one single narcoleptic attack. My energy levels have been strong. I have been hiking every day and felt great. That was up until I went to Wholefoods and had tea. It smelled soooo good. Sugar Cookie Sleigh Ride it was called! One would think that should have gotten my alarm to go off. I had a cup - and 15 minutes later I had to sleep. when I later read the ingredients it had roasted barley, "natural sugar cookie flavor and other natural flavors" and also clearly state contains gluten..... No more Celestial seasonings tea for me...
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