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Chances Of Developing Cataplexy?!?


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Poll: Narcolepsy+ cataplexy (15 member(s) have cast votes)

What was your diagnosis?

  1. Just Narcolepsy (5 votes [33.33%])

    Percentage of vote: 33.33%

  2. Narcolepsy and Cataplexy (7 votes [46.67%])

    Percentage of vote: 46.67%

  3. Developed Cataplexy after diagnosis (3 votes [20.00%])

    Percentage of vote: 20.00%

  4. Slight EDS, Mainly Cataplexy (0 votes [0.00%])

    Percentage of vote: 0.00%

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#1 wayne

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Posted 03 June 2009 - 09:19 PM

Ok.. So i was diagnosed with narcolepsy about a year ago and was put on provigil. It kinda works but my doc has been steadily raising my dosage from 100mg to 400mg a day. The only problems ive had with the provigil is bad anxiety problems and lack of appetite (which isnt that great when your already 115lbs at 18) My diagnosis was Narcolepsy w/o Cataplexy but i was wondering what the chances are of developing it later down the road? Has anyone developed it after their diagnosis?

mellow.gif It really worries me that one day ill wake up and have an attack and im just trying to get an idea of what the odds are. Please vote and/or reply. Thank you

#2 jenji

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Posted 03 June 2009 - 10:32 PM

QUOTE (wayne @ Jun 3 2009, 10:19 PM) <{POST_SNAPBACK}>
Ok.. So i was diagnosed with narcolepsy about a year ago and was put on provigil. It kinda works but my doc has been steadily raising my dosage from 100mg to 400mg a day. The only problems ive had with the provigil is bad anxiety problems and lack of appetite (which isnt that great when your already 115lbs at 18) My diagnosis was Narcolepsy w/o Cataplexy but i was wondering what the chances are of developing it later down the road? Has anyone developed it after their diagnosis?

mellow.gif It really worries me that one day ill wake up and have an attack and im just trying to get an idea of what the odds are. Please vote and/or reply. Thank you



That's a tough one to call, wayne b/c if you're 18 it would seem that you have been diagnosed early, as opposed to some of us who had to mill around for 5, 10, 15, 20 years until we found the proper diagnosis. Being diagnosed early is a good thing.

Although it may help you to know that I have N w/Cataplexy and over the past 15 years it has in fact gotten much better as far as full out drop to the floor episodes go. I still have mild to moderate cataplexy almost everyday, but I haven't completely lost myself in at least 5 years, while I wasn't even properly diagnosed with N until just about a year ago. And so I think much has to do with my adjustment to my illness and how I handle my time, stress etc.

My advice would be to focus on what you do know, as opposed to what might or might not happen. You're young and you have your whole life ahead of you and in fact you're ahead of the game if you've already been diagnosed, so make proactive adjustments to your illness as best you can and try not to worry about what-if; worrying will only exacerbate your condition and create a sort of self-fulfilling prophecy.

best,
jenji

#3 sunrisemoon

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Posted 04 June 2009 - 06:04 AM

I had symptoms from my mid teens. Who knew sleeping in class and staying awake all night wasn't normal. tongue.gif

But I wasn't diagnosed till I was almost 30. I'm now 37. I have narcolepsy w/out cataplexy. Having said that, I have had two major instances where I had, if not cataplexy, something very similar....started feeling 'drunk' then like there were no bones in my body. I lost all motor skills on both occasions for a number of hours. The docs say no to cataplexy, because it was only twice, but they can't say what it actually was. I have to add that both were on extremely hot days at work, I was emotionally distressed or stressed, I was overworked...just a bad combination of stuff going on. Once was in 2004. Once in 2008. Who knows.

I do know one thing though...my symptoms lessen the fitter and healthier I keep myself. They've worsened gradually over time (or maybe it's bugging me more, because it stops me doing more?), but the better I make myself feel mentally and physically, the better I'm able to cope overall.

Unfortunately, this narcolepsy thing is not a one size fits all disease so it's difficult to say what will or won't happen for you. In a way, you're lucky you know what you're dealing with so early. Educate yourself as much as you can. You may need to adjust/change your meds along the way to see what works best *for you*. Most of all, stay positive.

#4 Irishhh

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Posted 04 June 2009 - 02:17 PM

My sleep doctor didn't really tell me just narcolepsy or narcolepsy w/ cataplexy. I think he wants to wait and see before he fully says. That might be weird, but we're used to that here!

He asked me all kinds of questions about muscle tone/weakness/etc, and if I wake up unable to move - he was really interested in that part for some reason.

I am still not sure if what I experience is cataplexy, but maybe it is and the definition of such doesn't apply. I know in the past I have had times where I had to sit down from laughing because I couldn't hold myself up before, there have also been times when I felt like my facial muscles were loose and weird when laughing.

I once got really angry and stressed and had a full body collapse. I had to sit down and barely had enough time to do it. I think that was definitely cataplexy.

I have something very cataplexy like every single day. It involves me being very tired and I get almost into a paralysis. I'm awake, but I just lose my energy. Nothing has really caused it, I'm just tired. I've layed there or sat there, whichever and kept telling myself to move, but I couldn't. I wanted to, but my body wouldn't. So I'd concentrate really hard on moving just a finger to see if I could. Thinking maybe I'm just so tired and thinking of doing too much is just too hard right now (I know. too much to get up? lol) This usually lasts for a couple minutes and then like magic I can move again. It is the weirdest thing. I think this is either cataplexy or some kind of cousin to cataplexy that no one has made clear yet.

I think there is a lot with narcolepsy no one has made clear yet.

I don't think I developed cataplexy later, I think it's something I've had, but didn't realize til now.

I was diagnosed this past March, and turned 23 the day after. I'm fairly young too, so you're not so alone smile.gif

#5 BaRb79

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Posted 04 June 2009 - 03:37 PM

Honestly I did not just wake up one morning and fall to the floor the first time I laughed. Mine started gradually. It started with weakness in my legs and arms then turned into something much more. But I really wouldn't stress about it... It doesn't help...
Before you had N or even knew about it you probably didn't worry about getting it. I know this is different but I really wouldn't worry about it. If it does develope then they have great meds that can help you lead a "Normal" life.(What is that?) It's not the worst thing in the world to happen really.
biggrin.gif

#6 BaRb79

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Posted 04 June 2009 - 03:38 PM

My C symptoms started when I was about 22.

#7 malachi777

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Posted 05 June 2009 - 07:34 PM

I was diagnosed with narcolepsy without cataplexy but the last 2 years I had been suffering with slurred speech, mumbling, forgetting simple words, and when laughing very hard, I feel like I am going to pass out or my head spins for a couple seconds. I decide to try an antidepressant to see if those symptoms could be minor symptoms of cataplexy. Since starting the meds, I no longer have the symptoms above. I do on occasion have the pass out feeling when I laugh really hard. Otherwise, I still have average 2 hours naps per day to keep me going. I never really felt I had cataplexy because I never fell down. I have since learned that they can be a minimal as slurred speech, weak neck or knees, or blurred vision. Keep an eye out for those symptoms.

#8 jenji

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Posted 05 June 2009 - 09:52 PM

Oh, yes C can be very slight.

Michael, I'm just curious, what antidepressant did you take that worked for you? I've heard many recommend Prozac, but I can't take that or any other drugs in that family or else I fly over the moon with manic symptoms.

Anyways, just curious.

best,
jenji

#9 Marcianna

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Posted 06 June 2009 - 12:51 AM

looking back I had C as a kid but it was so slight it was not noticeable. it wasnt till my late teens early twenties that it got severe like it has now. I dont know if you can develop it later...but I know for me it got worse over time.

#10 malachi777

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Posted 06 June 2009 - 05:40 AM

QUOTE (jenji @ Jun 6 2009, 02:52 AM) <{POST_SNAPBACK}>
Oh, yes C can be very slight.

Michael, I'm just curious, what antidepressant did you take that worked for you? I've heard many recommend Prozac, but I can't take that or any other drugs in that family or else I fly over the moon with manic symptoms.

Anyways, just curious.

best,
jenji


I take Prozac but there are many types one can take. Wellbutrin is cheap and I believe it is one on the list. It takes time for you to adjust to the medication, so be patient. The prozac gave me about 8 waking spells per night but those have since stopped. I am now on month 4. I still have the narcoleptic sleep attacks but the cataplexy symptoms have diminished drastically.


#11 jenji

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Posted 06 June 2009 - 11:35 AM

Yes, I've heard many folks say that Prozac gave them some significant relief. I've already been on Wellbutrin for the last 8 years, I was just curious as to what was working for you.

Glad to hear that it's helped.

best,
jenji