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Can I Get Worse? This Fast?


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#1 karakedimarie

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Posted 21 July 2008 - 12:16 AM

I am recently diagnosed N with C and my EDS has gotten worse over the past 5 years, my cat attacks have increased but not dramaticaly. Until this week. Im often very tired but for the first time, i wasnt able to fight it! I went to dinner with my husband and I started to fall asleep while we were eating! he had to nudge me under the table to get me to sit up. then yesterday, while cleaning, i felt as though i was slipping into a cat attack; face drooping, legs buckling. Im pretty good at fighting them off but as soon as i did, i got hit again! I felt like I was in constant cataplexy limbo for over an hour! Sagging--fighting--sagging--fighting!! This has never happened...am I getting worse? It seems ever since I was officially diagnosed (last week) everything has been going downhill--fast! Does anyone have an idea whats going on?

#2 Damian

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Posted 21 July 2008 - 06:55 PM

QUOTE (karakedimarie @ Jul 21 2008, 06:16 AM) <{POST_SNAPBACK}>
I am recently diagnosed N with C and my EDS has gotten worse over the past 5 years, my cat attacks have increased but not dramaticaly. Until this week. Im often very tired but for the first time, i wasnt able to fight it! I went to dinner with my husband and I started to fall asleep while we were eating! he had to nudge me under the table to get me to sit up. then yesterday, while cleaning, i felt as though i was slipping into a cat attack; face drooping, legs buckling. Im pretty good at fighting them off but as soon as i did, i got hit again! I felt like I was in constant cataplexy limbo for over an hour! Sagging--fighting--sagging--fighting!! This has never happened...am I getting worse? It seems ever since I was officially diagnosed (last week) everything has been going downhill--fast! Does anyone have an idea whats going on?


you make attacks worse and the length of them by resisting them is one of the worst things to do, it is best to try and not fight it cause thats when you will bring on more episodes, i have the head sagging kneck limp no control over my eyes its just part of it. have you experienced any sleep paralysis yet?
do you allow for or have regular naps? (ciesta)

#3 karakedimarie

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Posted 22 July 2008 - 11:20 AM

QUOTE (Damian @ Jul 21 2008, 05:55 PM) <{POST_SNAPBACK}>
you make attacks worse and the length of them by resisting them is one of the worst things to do, it is best to try and not fight it cause thats when you will bring on more episodes, i have the head sagging kneck limp no control over my eyes its just part of it. have you experienced any sleep paralysis yet?
do you allow for or have regular naps? (ciesta)



Yes, ive had sleep paralysis for 5 years now, also HH, micro sleeps, all those fun things. I do allow for naps throughout the day, but I can't really schedule them, they kind of schedule me! lol. I just got put on Aderall and imiprimine while I wait for my Xyrem...

#4 RipVanWinkle

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Posted 12 August 2008 - 10:05 PM

I went from having tolerable narcolepsy with mild cataplexy and the odd sleep paralysis episode to full blown N&C where I'm not able to control where and when I sleep. I just go out and that's it, medication or not. This all happened suddenly about three months after turning 30. I had a weird episode with some numbness in my face and left side of my body and felt bad for a couple of days. My doctor sent me to see a neurologist who sent me for an MRI, and he said there was no change from the last one. The only thing I can relate to any of it is that I'd been under a lot of stress for quite a while and was not getting much rest. The weird thing is I'd already had really bad N&C in my teens but it seemed to fade in my early twenties. I thought I'd got away with it, no such luck.

#5 DayDreaming

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Posted 27 August 2008 - 09:33 PM

this is sort of on the same topic....i was just wondering i'm 17 and thankfully don't have the whole full fledged mismosh of symptoms that fall under Narcolepsy. I know that not everyone has everything but are the odds that I might stick with what i've got or is it more likely as I get older it will get worse/more symptoms crop up?



#6 Guest_~K~_*

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Posted 28 August 2008 - 09:41 AM

QUOTE (DayDreaming @ Aug 27 2008, 10:33 PM) <{POST_SNAPBACK}>
this is sort of on the same topic....i was just wondering i'm 17 and thankfully don't have the whole full fledged mismosh of symptoms that fall under Narcolepsy. I know that not everyone has everything but are the odds that I might stick with what i've got or is it more likely as I get older it will get worse/more symptoms crop up?


Remember that sleep deprivation accumulates over time -- so start now to have good habits about getting enough rest and following a healthy lifestyle. The severe problems that some of us older folks have are because we went for years without a diagnosis, so now we've got years of exhaustion and the attendant damage to undo.

Narcolepsy is not 'degenerative' meaning that it won't kill you in and of itself -- but it certainly could cause an accident that is fatal! Fortunately, people who are treated for narcolepsy are no more likely to have an accident than anybody else.

In other words, if you don't take care of yourself, you are likely to get worse -- the same as with any other medical condition. But if you start good habits now and take care of yourself, you should have a long and comfortable life (with the occasional challenge).

My teenage daughter has narcolepsy but won't admit it (in spite of proper diagnosis by a sleep lab), and I see her struggling with complications in her life because of it. I have narcolepsy myself and I have accepted my diagnosis and worked hard to find the coping mechanisms that work for me. So even though my narcolepsy was more severe and of longer duration, I am doing better than she is.

~K~



#7 mom always wants to sleep

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Posted 09 September 2008 - 12:38 AM

I know the feeling of falling asleep at the wrong place and at the wrong time. I've done it myself in resturants with the family while we were waiting for the food to be served. I have fallen asleep in places that I have to laugh after the face because I never dreamed that one day I would be doing something like this. My husband nudgging me, wake up your snoring!! I've fallen asleep just about everywhere, just to many to type!! When this sickness hit me, it hit hard and it has changed my life so much that I cry wishing that could get those days back when I was Narc Free!!! Being a mom of a disabled child whom has a twin is very hard cooping with my issue then his. There are days when I just want to run away from everything and everybody, but I know it would mot fix the problem that will always remain. I try so hard to fight the sleep attacks when they start to strike, my eyes get soooooo heavy the lids look like they are so heavy and ready to shut at any time, and I run to the nearest and safest spot for me to sleep even if it is 5 min. I had 2 episodes of sleeping behind the wheel of a car, and believe me, that was the scarest thing ever. That is why now I find somewhere where it is safe to doze for a few, if I make it in enough time I set my cell phone clock for 10 min to doze. I can't believe this!!! I could go on and on about all the wierd stuff that has happened to me since this Narc. started taking over my life, and you know what No One Understands, they think you have control of this or you are just lazy or just faking it, they have No Idea what we go through. Sometimes it is your own family who are the worse ones to!!! I try soooooooooo hard to fight this but I think as time goes on, it is winning and that's what scares me!!!!!!!!!!!!!!!!!!!

Lucille


#8 Mike M

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Posted 09 September 2008 - 10:56 PM

I think Lucille raises a huge point. I know that I too tried to fight my narcolepsy for a long time, before and after my diagnosis. What I have been working on for the past 6 months is learning how to live with it. A great friend (and fellow narcoleptic) reminded me a month ago, that the narcolepsy needs to keep up with me. That doesn't mean that I conquer it, rather by learning to know my limits, I come to understand what I can do and when. Realizing and owning that I am a person with a disability (even if most of the world doesn't recognize it) is freeing. I certainly have many awful days, but I also am able to be more at peace with myself and what I can accomplish. The fact that I rise each day and do something is a victory in itself. Lucille, your efforts are amazing, but I hope you can learn to forgive yourself for things that are simply out of your control. You didn't ask for this and didn't do anything to deserve it. You are a kind and caring person. I try to remember that I can't do anything for others until I have taken care of myself.