I'm going to beat this disease!!

By Black Feather Latest Activity February 6, 2012 at 3:27 am Views 7,168 Replies 15 Likes 12

Black Feather

Hi everyone,
I stumbled across this app today… Thank you so much!!! Can you believe I fell asleep as I was picking out my username…here I am back to introduce myself…
I'm Rachel, I was diagnosed with narcolepsy nearly 10yrs ago along with the cataplexy symptoms.
The first time I was diagnosed was after I collapsed from laughing on valentines day. Can you believe it.. Early dTe too, just when u want to lose it all. Since then Im aware I suppress my personality and hold back from laughing, not wanting to lose control in public..Not sure, the statement "laughter is the best medicine" in this case.

I am determined to beat this disease, and I will. I've found regular sleep patterns, meals make a difference. Ive tried lots of things, and knowing you are going to beat it, is part of it… If anyone wants to connect and join forces in beating this contact me…

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Replies (15 replies)

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  • nsaiisasidhar
    nsaiisasidhar May 2 at 2:13 pm   

    I too am suffering from narcolepsy and being frustrated with it trying all the possible ways to overcome it. It looks like muscle weakness is the cause for onset of narcolepsy in your case. It might be useful to check if you got any parasitic infections, because they trigger muscle weakness which in turn causes narcolepsy.

  • jobrizzi
    jobrizzi November 20, 2013 at 7:21 pm   

    Im only 13 and I've got both cataplexy and Narcolepsy and i know what its like. And Im willing to fight with you;)

  • bculpep
    bculpep November 6, 2013 at 6:33 am   

    Loved to hear your story. I'm 23 years old and just recently fully confirmed for narcolepsy. Since childhood I've had obvious narcolepsy with cataplexy but my parents refused to believe it ( don't believe in doctors) . Luckily I have found a job that allows me to take a quick nap to get my energy up but unfortunately I'm extremely ambitious. Can't wait to finally have something to keep me awake . I have totaled 4 cars in the past 5 years and am ready to finally be able to get around and live a somewhat normal life. :)

  • MarellaLouise
    MarellaLouise March 2, 2012 at 8:18 pm   

    Ihave had to use a Vipap machine most of my life. I find it to be useful when I have an Upper Respitory Infection and I can't breath correctly. It's not as powerful as I would like the air to come out of it. My Pulmonologist is not helpful to me about my problems so I feel that I will not be using the machine anytime soon till I get a different doctor.

  • MarellaLouise
    MarellaLouise March 2, 2012 at 8:23 pm   

    I know how others feel when they fall asleep uncontrollably during the day hrs. Either that or in a movie theater in the dark. My energy level is on an all time low. My activity level on a all time low. When they can come up with a machine that does all our breathing for us at night and I don't have to worry about getting to the point of ripping the machine off my face because it makes me feel that I have no breathing space then talk to me.

  • Aristarco Davila
    Aristarco Davila February 28, 2012 at 5:10 am   

    Good! I'm with you all the way! =)

  • cataylor
    cataylor February 18, 2012 at 1:48 am   

    I have never found that the drugs have eased the feeling of fatigue or exhaustion. The only thing they do, and am very grateful to them for it, is give me a window of time that I won't fall asleep uncontrolably. It is usually about 1 hour after taking them and last 1.5 to 2 hours. That is when I can drive or take the kids on an outing. I used to be on Ritalin about 80mg a day, but became told rent to it. Was on 20mg dex but just got prescribed 30mg a day on Wed after seeing specialist at annual check up. It I become intolerant to this the option is taking 2 different ones at same time or ????. I would hate to loose driving license. I don't drive much but that would suck.

    We have lived in Israel, Syria and Australia in last 6 years - as well as at "home" in Nz. I have always taken my drugs with me. They are in their labelled containers and I carry a letter from my specialist that states when I was diagnosed, what the condition is and what my current medication is.

    I am not sure what to suggest regarding work. A midday sleep - more than a nap - always helps my alertness. Not always possible in working situation. When the drugs aren't in my system I am sitting down I only get 2 minute warning and I am gone. I used to have a thin mattress under my desk to fall on to! If i have to stay awake I stay active and on my feet. Leaves u more exhausted at end of day though.

    Good luck. What an amazing career. I am still figuring out what I want to do when I grow up. Just enrolled to go back to University to see if I can figure it out.

  • AngelBlueEyes75
    AngelBlueEyes75 February 14, 2012 at 4:57 pm   

    I would live to follow you and support you all the way x

  • cataylor
    cataylor February 14, 2012 at 12:19 am   

    And u r down under too! I am in NZ. Am still reading your 2nd post and it is like reading my own story; same drug, same dreams - as I accepted the mother I would be was not going to be exactly what I wanted but was still ok the dreams went from horrific to none.

    I struggle with not giving in to craving rich, sweet foods - especially at 2am when I'm up for the 3rd time with one of kids! If I am fit and eating healthy the effects of the narcolepsy seem less. If I have a few bad nights with kids the effects seem accentuated. I struggle with my right side! Wrists and knees especially.

  • cataylor
    cataylor February 14, 2012 at 12:10 am   

    I wrote a discussion on this site a month or do ago called "narcolepsy a new start". Since I was diagnosed 10 years ago I have: lost 36kg, run 2 half marathons, competed in 2 triathlons, got promoted at work faster, had 3 kids putting on and loosing 30kg each time, lived in 4 different countries, got married…
    Narcolepsy will NEVER stop me from doing what I want - it might alter the way I do it, but it won't stop me.
    Am so eased to read something by someone e with a positive outlook.
    Go for it!

  • Black Feather
    Black Feather February 14, 2012 at 11:02 pm   

    Wow. How inspiring, you go-getter. That's great to chat to someone that has shared similar experiences. I've thought about doing all those things.. kids, marathons. Do you think dexamphetamine has helped you do more of what you love over and above. I find being on the drug for so long I have built up a tolerance to it.
    I don't know how many suspicious looks I have been given over the years going for a new script
    . I feel like saying at times.. " hey you have narcolepsy do you?"
    You mentioned you lived in different countries, I am about to go to Bangkok to work. having been there before, I understand I am not allowed what so ever to take the medication with me. I am hoping I can see someone over there. I seem to get more tired in the hot, humid conditions, and don't want to find myself wanting to nap during directing a tv series.. Any thoughts or suggestions would be much appreciated. Keep in touch and love to hear more about yr story!!

  • Black Feather
    Black Feather February 9, 2012 at 7:47 am   

    Thank u for your warm welcome, and interest in my story. Im not used to sharing my story, and for many years I thought by ignoring the problem that it would go away one day.. I have had Narcolepsy for 9 years. At the time I felt special having such a unique disease that no one seemed to know anything about here in Australia. When I started telling people, that I lose control of my left side when I deeply laugh, in shock, or if Im very upset. They just look at me puzzled. As ive held back most of my attacks they dont really know how disabling it is.
    A lack of sleep (a few nights with less than 7 hrs in a row) seems to intensify the weakness on my left side.
    The medication Im on now is just the one tablet dexamphetamine. This is the hardest tablet for me to stop completely. I have come to rely on it too much at times. As a director, designer and have worked so many different shift work cycles. sometimes with ridiculous hours. I have never had regular hours. I was taking an anti depressant for the cataplexy for 6 months. I didn't like the brain zaps this drug gave me.. It felt like the zaps were happening so one would never want to go off the drug. As it turned out after i had made the decision not to let the drug affect me, i was angry about the zaps, and I just stopped one day, and never went back. The nightmares were worse on the anti-depressants as it turned out
    A couple of times I distinctly remember waking up after a horrible nightmare at the front of the house. my partner was next to me, running with me. He thought i was being attacked in my sleep. He'd never heard me screaming like i was in my sleep. Another dream I remember was so vivid, even now I remember. There was a big bright blue scaly hand trying to grab me and take me never to return… I found my dreams were so bad at times I didn't want to sleep. I was afraid to sleep and started working day / night. Until I had a breakdown where I was forced to stop.
    I stayed in a smaller town, was with family, and rested, ate healthy, regular meals, and had an energy clearing for the very first time.
    I think this is where I noticed for the very first time, a shift. I went in expecting nothing, after 2.5 hours I came out. The dreams stopped a couple of days later.
    Now, I hardly have a bad dream. I am trying meditation at the moment. See how that goes. Im struggling getting into an alpha state though,as I keep falling into a very deep sleep.
    I'm still trying lots of things to see what works. I i didn't say it would be easy, I'm confident it will happen. It's lovely to read and share with others that have similar experiences. I have never had a conversation with someone else suffering with the same thing… as me..thank you, for reading. Time for bed for me!! :)

  • tahohugh
    tahohugh February 7, 2012 at 9:04 pm   

    Hello and welcome. Please share more about your meals. What you eat and when. Do you ever diviate from your times of day you eat or what you eat? Which meds are you on and do you suffer other sleep disorders as well. I only know one person who has Narcolepsy and this would help me pass it on. Thank you.

  • kristinmv
    kristinmv February 7, 2012 at 8:03 pm   

    Hey! You said meals made a difference - could you tell me more about that. Is it what you eat or when?
    - Kristin :)

  • Tracy
    Tracy February 6, 2012 at 11:41 am   

    hello and welcome to sleep connect, glad you found us!
    Thanks for sharing your story and for mentioning how helpful regular sleep patterns are to assist in controlling day time sleepiness. Scjeduled daytime naps are very important for narcoleptics.
    What are your medications of choice for helping with your cataplexy and daytime sleepiness?

    tracy

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