IT'S DEFINITE - I WAS JUST DIAGNOSED WITH NARCOLEPSY!!!! HELP!!!!

Discussion in 'Fibromyalgia Main Forum' started by BxGirl, Sep 14, 2005.

  1. BxGirl

    BxGirl New Member

    I saw my sleep doctor today. Yup, I have Narcolepsy. So on top of all the other crappy things I have, now I have a major sleep disorder.

    He wants me to go on Ritalin. There's got to be something else I can take that's more "natural". Maybe Ralph has a suggestion. I'm really scared of taking more drugs. What can I do? The woman who owns the health food store told me about DMAE. I don't know what that is. She said it's all natural. I really need help!!!!

    BxGirl
  2. catgal

    catgal New Member

    Well, at least now you know what is going on with you instead of feeling like you're losing it.

    So sorry this has to happen to you on top of everything else.

    Enada (Commercial name) or NADH (generic name) helped me in so many ways. It's totally natural; you can buy it on this website cheaper than anywhere else, and it has so many benefits.

    I took it for my CFS. I was always so endlessly exhausted. Then, several years ago CNN's Health Watch did a spot on it. Said that it was proving to be helpful in a mariad of ailments....depression, alzheimers, mental clarity, CFS, any others, and ESPECIALLY in boosting your energy levels.

    I'm 56 and throughout my life I had spent a fortune on every kind of vitamin or diet regeime, this, that, and whatever kind of "latest" fad was. But, nothing worked until several years ago when I saw that health report on Enada. I went to a good health store, ask for it, and bought a month's supply of 5mg little white pills. I started out taking 10mgs first thing every morning on an empty stomach (don't lay back down}, then you wait 30 minutes before eating or drinking anything, and then you get on with your day. For the first seven days--I felt no change--but the morning of the 8th day at 10:00*****I felt it kick in. Not a rush or a high. Just this incredible energy, heightened sense of mood, mental clarity, emotional stability, and gone was that constant dark cloud hanging over me & feeling of doom of gloom. I felt great. I had such a bright outlook on life; things didn't bother me anymore; I laughed easily; stress level went way down, and I had this incredible, marvelous energy! It was AMAZING*

    I don't know if it will help with narcolepsy or not, but it might be worth a try if you are wanting to avoid any more drugs.

    However, I would first suggest that you see a holistic herbalist as they can usually put together various herbs & minerals that will address your specific needs.

    A prescription stimulant drug is usually the course of action for ADD, ADHD, narcolepsy, and other such disorders, and after a trial & error stage of finding the right dosage for you--it often works, but does have its drawbacks.

    Just read everything you can on narcolepsy you can find. There is also a narco internet support group, and they can tell you from experience what has worked best for them. Just search the web for Narcolepsy Support Group. You will probably find your best information there.

    Hope you find something that works for you. Blessings, Carol--
  3. ilovecats94

    ilovecats94 New Member

    Sorry that you have a dx of narcolepsy now. Just wanted you to know I wish I could help you.

    My son has ADHD and takes Ritalin and does well on it. It does take his appetite away some.

    I wish you all the luck in finding something that isn't a Rx that will help your condition. I can understand that you are scared and I wish I could say something that would be helpful and wise to you.

    Best of luck to you, hon!

    Hugs,
    Faye
  4. jrose

    jrose New Member

    My daughter,25,has narcolepsy diagnosed when she was 14.She also had cataplexy which now has almost disappeared. She is on Provigil 200mg. once a day. She prefers that to other medications. You have to see for yourself which one is best for you. She is able to work but still has to sleep during the day. Good luck. Judy
  5. abbylee

    abbylee New Member

    I work for a company that was established for Narcolepsy and Narcolepsy with Cataplexy patients. They work with other sleep disorders too, but initially they supported N and N w C patients who take Xyrem.

    Since these conditions are rare, they were established to answer patients' questions about this drug. Many many people are taking Xyrem for these conditions.

    You can learn more about this at talk about sleep or advocates for sleep. They are easy to find and they have lots of information that you'll need since you have narcolepsy. Please check them out.

    You can also call the tollfree hotline at 800-823-8893.

    You may need your daytime meds, too, but you really need Xyrem for sleep. I'm surprised the doctor didn't prescribe it for you.


    abbylee
    [This Message was Edited on 09/15/2005]
    [This Message was Edited on 09/15/2005]
  6. Rosiebud

    Rosiebud New Member

    to hear of your sleep disorder, as if you dont have enough to contend with.

    I wish I could offer advice but I dont know much about nacrolepsy.

    Thinking of you

    Rosie
  7. TXFMmom

    TXFMmom New Member

    It is my understanding that Provigil has replaced Ritalin in treatment of narcolepsy. That is what it was developed for.

    Ritalin is addictive and an amphetamine and has quite a few side effects. Weight loss is one of them, and I could sure use that.

    However,it is addictive and people can develop paranoia and things with it.

    Provigil should be the first thing tried, but one must take it EVERY DAY.

    Also Xygrem, which you see discussed here on the boards, is used to get narcoleptics into the proper sleep patterns and I AM VERY, VERY SURPRISED THAT THEY HAVE NOT RECOMMENDED IT.

    Seek AN IMMEDIATE SECOND OPINION.
  8. gnanny

    gnanny New Member

    Thankyou all for the time you put into sharing this. Was too much for my foggy brain to grasp so I printed it out to refer to.


    Nanny
  9. BxGirl

    BxGirl New Member

    The reason my doctor prescribed Ritalin first:

    He said that the other drugs are very expensive and if I try them first and they fail, my insurance may not cover me for other medications. He wants me to try Ritalin first.

    Naturally I'm scared of it. But I would be of the other drugs too. I'll probably start taking it on a weekend, so if I do get bad side effects I'll be at home with my husband who can take care of me. I need to lose weight, so I'm not upset about that side effect.

    I have to be careful, because I'm very suggestible, meaning I might have a reaction if I hear about it. I had bad luck with Cymbalta, Prozac and Prednisone. Very bad reactions. Hopefully I wont' get one with this.

    I may try the DMAE in the meantime because I have to send away for my prescription and it'll probably take about 2 weeks.

    What bums me out is that there is no cure for this and I'll have it the rest of my life. I feel like such crap now, you can just imagine! I can't wait to see the new "pain" doctor next week. I wonder what he'll come up with?

    Love,
    BxGirl

    Zzzzzzzzzzzzzzzzzzzzzzzzzzzzzz..................
  10. BxGirl

    BxGirl New Member

    Oh, THANK YOU to everyone who wrote. I love you all!!!!

    About DMAE - I saw that one of the side effects is drowsiness. How can this be used for narcolepsy if one of the side effects is drowsiness?

    BxGirl
  11. mommysisland

    mommysisland New Member

    Hi BxGirl,

    I was diagnosed with narcolepsy w/cataplexy years ago. It is frightening since it is a truly chronic disease.

    However, it has some "Pro's." It is largely treatable, and it is a "real" diagnosis. It is therefore easier to explain than CFS, FM, MCS, etc... Plus, many people with narcolepsy go on to lead fairly typical lives. There are many nastier diagnoses that make narcolepsy look flat acceptable!

    I wanted to chime in that I agree with Abbylee, (hey, that rhymes). :) Xyrem continues to be one medication that I really need. I no longer need Provigil on a daily basis, but the Xyrem is a must have. It provides for deep, restorative sleep that narcoleptics (and many others) lack. If you have narcolepsy with cataplexy it will be easy for you to obtain this otherwise heavily restricted drug.

    Xyrem is actually GHB, which got a horrible rep as a date rape drug. (This still puzzles me a bit as it is a SALTY liquid, but I guess anything can be abused). A nice fact about GHB/Xyrem is that it mimics a natural compound our bodies make (or should make). They had to alter it some to obtain a patent, but it is more natural than synthetic. To my way of thinking, it is a kinder, more natural, drug than most, including Ritalin. Hopefully, you can ask your Doc about it.

    Narcolepsy is caused by the loss/death/damage of orexins in the hypothalmus. The hypothalmus also helps regulate body temp., heart rate, hunger and other autonomic functions. A messed up hypothalmus seems to also be at the heart of CFS. All of it seems to be tied together somehow.

    I hope the mystery is solved in your case.... soon.


    Jessica

  12. BxGirl

    BxGirl New Member

    Thank you for the explanation. I don't know what orexins are though.

    Maybe this messed-up hypothalmus explains why I can't lose weight, why I'm always hungry, etc.

    BxGirl