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Ami,
Hello Ami. I am new to this group as well. I haven't had a chance to really become involved, but I have wrote to one other person that E-mailed me. I also have been diagnosed with Narcolepsy with cataplexy in 2003. I have all of the side effects also. I hate the hallucinations in my dreams, and the cataplexy. I think that scares me the most. Do you have cataplexy? I also have sleep apnea. I have the CPAP and hate it, so I got a mouth device that does the same thing as the CPAP. It slides your job forward and opens up the passage way so you can breath better, without snoring. I wore it during the day because I could feel the difference. I currently can't wear it because I have braces and my teeth have moved so quickly, to wear the mouth piece doesn't fit. You might want to look into that.
I was also diagnosed with another neurological disorder called Pseudotumor Cerebri. Which means my brain is acting as if
I have a tumor, but I really don't have a tumor. I have the symptoms, but can't find one. I hate it. I have to have spinal taps done to release the pressur I can feel in my head. I get headaches so much and they are painful.. I always tell myself this motto I made. I will not let this take over me,......I will take over it. Sarah
jackdanielsmom <jackdanielsmom@...> wrote:
jackdanielsmom <jackdanielsmom@...> wrote:
HI.....Just signed up for this group....doesn't look like there has
been much activity lately...everyone sleeping??....well anyway, I am
31 years old diagnosed with narcolepsy in 1992. suffer from every side
effect due to narcolepsy and just recently found out i have sleep apnea
as well. I have a full time job, house , a 3 year old son and absolutly
NO energy to cope with these things. My last episode of sleep
paralysis ivolved me not being able to wake myself knowing i had to be
awake to watch my son......I eventually was able to tell him to pour
water on my face which brought me around. Nothing seems to be
working.....CPAP machine, 300 ritalin a month, and gen-chloriprimide( or
something like that) My workplace recently stripped me of 2 titles,
1.25 an hour and i am so unhappy with things lately i just thought if I
signed up for this chat.........just maybe I'd feel better knowing I am
not the only one suffering. Please somebdy share your story with me
so I don't feel like there is no hope.............Thanks. ...AMI
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