2 replies to this topic

[tabster1]

I am newly diagnosed N with mild C. One of the things that I worry about is that the C will gradually get worse. Right now it is just when I laugh or get very upset/nervous I feel very heavy and weak, and my eyelids feel heavy and my neck feels like jello or something and my head droops a bit. Is it common for it to get worse over time, to where it gets to full body collapses? Also, would other aspects start appearing/disappearing? Like the microsleeps and hallucinations and such.

[angeline]

I am newly diagnosed N with mild C. One of the things that I worry about is that the C will gradually get worse. Right now it is just when I laugh or get very upset/nervous I feel very heavy and weak, and my eyelids feel heavy and my neck feels like jello or something and my head droops a bit. Is it common for it to get worse over time, to where it gets to full body collapses? Also, would other aspects start appearing/disappearing? Like the microsleeps and hallucinations and such.

I'm not sure what it's like for others but my symptoms have gotten worse over time. I hope it will not turn out that way for you. Maybe I'm having a bad relapse because I also have apnea w/ N & C; so that complicates things. I have had the symptoms for 22 years but the last year has been very hard for me. For years the VA told me I had chronic fatigue and adjustment disorder but this year I went to a civilian doc and found out I have sleep disorders. I went to new doc bcuz my symptoms were getting out of control. Some say it's because I am premenopausal. My doc says that the first 6-12 months after diagnosis is difficult becuz you are trying to find the right meds and get used to any lifestyle changes. I asked her what my life will look like when I am 70 or 80 years old. She said she has patients that are doing well; they often need less medicine or need to change medicine but they are doing well.

[Sleepingcrow]

Maybe this will help.... I started off with mild tremors, or what I call "the shakes" in the morning. A year later, with the help of an enormous amount of stress and mourning for the death of a few loved ones, I fell to the ground in a major C attack. That was what I thought was the beginning at the time, although I ha been diagnosed with narcolepsy for about 4 years before that. Now my cataplectic attacks are similar to yours, and doesn't happen very often.

As you said, it gets triggered by things, so what can you do in your life to alleviate your life of the triggers. I'm lucky, happy emotions and laughter don't trigger mine, stress, anger, a broken heart, or my body temperature being too low can do it though. So I've learnt to react to stress differently, to keep my core temperature up, and let myself go and feel the broken hearts and disappointments, cataplexy and all, so I can get it out of my system.

Because of this, I have cataplectic attacks more in clumps, which means I'll have a bad weak in the beginning of spring and the middle of fall, or if I've had a difficult moment in life. So all in all, I get about 4 to 6 clumps a year.

I tjhink the best thing you can do for yourself, is to start to recognise the warning signs. When I start to feel the fuzzies in my wrists, that's when I know I have to not only slow down but stop altogether. this is what's made it actually better for me, not worse.