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  • Narcolepsy/Catplexy

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    Old 03-01-2008, 03:47 AM   #1
    hiram2008
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    Narcolepsy/Catplexy

    I am interested in chatting with anyone suffering from long term Narcolepsy with side effects of Cataplexy. I have had these chronic disorders for nearly 40 years. The Narcolepsy remains about the same, maybe even a little more severe with age; however the Cataplexy has been getting less severe over the past two or three years. I seldom have an episode, unless I allow myself to get extremely fatigued.

     
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    Old 03-03-2008, 04:47 AM   #2
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    Wink Re: Narcolepsy/Catplexy

    Quote:
    Originally Posted by hiram2008 View Post
    I am interested in chatting with anyone suffering from long term Narcolepsy with side effects of Cataplexy. I have had these chronic disorders for nearly 40 years. The Narcolepsy remains about the same, maybe even a little more severe with age; however the Cataplexy has been getting less severe over the past two or three years. I seldom have an episode, unless I allow myself to get extremely fatigued.
    i am 20 years old and have sufferd with all 4 syndromes of narcolepsy all my life even as a newborn baby,narcolepsy does get worse as u get older it is degenerative so i have been told from my neurologist,my cataplexy gets worse when i am nervous or if i am not feeling very well it tends to take over more

     
    Old 03-03-2008, 09:07 AM   #3
    hiram2008
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    Re: Narcolepsy/Catplexy

    Sleepbug, I guess I should consider myself lucky, as my disorders did not begin until I was over 40, or at least i was not aware til then. The neurologist, whom I have only seen once, was very vague and in so many words just told me I was doing fine, and to just get on with my life. He did tell me that there were medications for the narcolepsy, but that they were worse than the disease, so I never medicated. I am curious, you mention four (4) syndroms connected with narco. What are they, other than drifting off to sleep, and the cataplexy? I will soon be 79, so have gotten on with my life. I don't seem to notice any degeneration connected with the disorder, other than it is much harder to stay awake in relaxing situations, maybe some of that is just old age. I seldom drive anymore, and then only when my wife is also along. At my age, I just thank God every day for allowing me to live as long as I have.

    Keep posting, as information from others in our situation may prove helpful, and sometimes is encouraging. It is nice to chat with someone who knows what you are going thru.

    Hiram, USA

     
    Old 03-04-2008, 09:42 AM   #4
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    Smile Re: Narcolepsy/Catplexy

    Quote:
    Originally Posted by hiram2008 View Post
    Sleepbug, I guess I should consider myself lucky, as my disorders did not begin until I was over 40, or at least i was not aware til then. The neurologist, whom I have only seen once, was very vague and in so many words just told me I was doing fine, and to just get on with my life. He did tell me that there were medications for the narcolepsy, but that they were worse than the disease, so I never medicated. I am curious, you mention four (4) syndroms connected with narco. What are they, other than drifting off to sleep, and the cataplexy? I will soon be 79, so have gotten on with my life. I don't seem to notice any degeneration connected with the disorder, other than it is much harder to stay awake in relaxing situations, maybe some of that is just old age. I seldom drive anymore, and then only when my wife is also along. At my age, I just thank God every day for allowing me to live as long as I have.

    Keep posting, as information from others in our situation may prove helpful, and sometimes is encouraging. It is nice to chat with someone who knows what you are going thru.

    Hiram, USA
    hi Hiram, The 4 syndromes of Narcolepsy are,Cataplexy,Hypnogocic hallucinations these are caused by the fatigue of the narcolepsy,Sleep paralysis which entails the hallucinations and automated behavour which is as seen to everyone around you as you are awake but in your minds state it is asleep so its similar to sleep walking but i think can be more dangerous because it just happens anytime of the day i cant control but you get on with life at the moment i would say my narcolepsy is at its worst it has been in a while but i have a 6 month old baby boy so its expected.As far as medicating it i would say be happy with what your doctor as suggested i was medicated at 16 years old, thats how long it took to find out what was up with me,the meds for the narcolepsy have give me other illnesses that i also tried medication for narcolepsy but none of them agreed with me one actually made me that ill i nearly died when i was 17! if i could of choose now to not be on them i wouldt be but they are so addictive that you cant do without them,i dont know if half of it is just phsycological but i do stress if i run out of my meds xx

     
    Old 03-04-2008, 01:53 PM   #5
    hiram2008
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    Re: Narcolepsy/Catplexy

    Sleepbug, thanks for the info on the syndroms. I was not aware of the last two. Thank God, I do not suffer from either of them, at least at this time. I suffer from sleep apnea, which is sometimes linked to the narco. Yes, I am glad [I] never started the meds., as it sounds like they could make your life miserable. I sure hope you don't become so addicted that you cannot live without them, sometime in the future. I am sure that an infant in your life, although a wondersous thing, can be stressful at times.

    all I can say, is hang in there, trust in the Lord, and live your life one day at a time.

    Take care of your child and yourself, and post replies any time you feel like unloading on me. I check the website almost every day.

    God Bless you, Hiram

     
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