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Fear, Exaustion, And Paranoia


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#1 Snoreasaur

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Posted 16 June 2008 - 06:06 PM

Hi. I'm new. Got diagnosed with minor narcolepsy after years of beng told I was depressed, manic, bi polar, add, etc. I began on Provigil which worked fine for the first 6 months. But now, I am starting to experience more and more of the narcolepsy. I followed my dr's advice and lost 40 pounds, became more active, stopped drinking diet coke aka my lifeline, and tried to become much healthier in the hopes it would stave off the narcolepsy getting worse.

But, I am heading back to do my masters. I barely got through my undergrad as I slept through most of it. Fortunatly, I had understanding professors who took pity on the poor sick girl. I had my first unannounced sleep attack and cataplexy spell the other day, and my dreams during even my sleep attacks are getting more violent every time I close my eyes. I have to use the bathroom religiously before I go to bed as the night terrors are becoming gripping. My fiance has a bruise on his arm from where I tried to punch him thinking he wa a serial killer.

I'm 24, and I felt like I had my whole life ahead of me, but now I am saddled with this crippling exaustion that I can't explain to anyone.I used to be a professional speaker, but now I can barely string together a sentance without stuttering. I forget simple words like fork and hair. Without my blackberry, I don't know what I am doing. They don't warn you about this part of narcolepsy. I feel like I have been robbed of my intelligence. People ridicule me becasue they say, "well, I'm tierd all day, I could have narcolepsy too. Anyone could have narcolepsy". My fiance is really understanding and gracious, but it's hard not to think you are creating this in your head sometimes.

So. My question. There is so little research and so little information out there. Can anyone tell me what I can expect from this disease? How fast did people's symptoms get worse? Is it common that my meds do ever feel like they are working? I know no two cases are the same, but I feel like I am loosing grips. Can anyone give me any tips to help me in class? I am getting special exemptions for time and exams, but I need help on the day to day stuff. Anything to gain back control would help.

I am exausted from being exausted. I am scared because there is no information telling me what's going to happen next. I'm paranoid that I have forgotten something or that I am possibly still asleep, and that scares me the most.

Thanks for listening.
Emily

#2 greatbig47

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Posted 17 June 2008 - 10:18 AM


Hi Emily!

Thanks for joining us!

Going for your Master's? AWESOME!!!!! Give yourself credit
for how far you've already gone. Be proud because you should be.

What to expect? Hopefully more than I think you are thinking of...and I mean it in a good way (If that even made sense). smile.gif

Consider a life without the fear. Fear will walk into your life...plant it's big butt right in front of you getting anything (and everything) out of life.

What if you got your Master's, and were able to grab all those things you want?
Truth is you will and you can once you tell "Fear" to get out of your way.

Picture what you want and grab it!
Don't picture the consequences of fear...it's not constructive and it's not fun like envisioning what you want.

As I get older, my typical narcoleptic urges to nap seem to increase, so I know how that feels.

The bad dreams and terrors are so easy to carry with us. I stared to really try and hold on to my good dreams lately. I mean, really...do ALL dreams have to be bad?

Yeah, our condition sucks...But maybe there is more to it than being something that gets in the way.

Stick with us, Em...we want to see you get your Master's....That will be cool!!!!

-Stu




#3 Jayebird

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Posted 18 June 2008 - 08:32 PM

Emily: There is so much in your post. I can address how I handle the dreams. I am new to this site but not new to SA and N. I do not call them night terrors because that makes them seem scary. They are dreams and some of them just happen to be bad dreams. First, I have a comfortable and inviting bedroom. I painted the walls a dark burgundy in a faux pas painting style which makes the room very dark. The bedroom should be a haven to take your body for resting. You might look up "sleep hygiene" while surfing the Web.

I could not explain these things for years until I did a sleep study questionnaire and they asked what I thought were silly questions at first. I have learned not to fight them. One of my problems was trying to awaken and not be able to because someone was intruding into my house, coming after me, killing me, etc. These things can invoke a fear in you that you never knew you had. I got a dog who protects me from these night time curses. I have learned in my sleep that if the dog is not bothered then it is a dream and to relax. These dreams have lessened over the years. You might try something like telling yourself that your partner is not bothered, etc.

These dreams can also be good dreams that are not scary. I let go of the bad ones knowing that is what they are. There have been times when I had to search out someone to discuss something that was especially bothersome. But there have also been beautiful ones also that are quite enjoyable. This did not work overnight but this has been something that worked for me.

I hope I have helped. Keep me updated on how you are doing. I got my Masters with SA and unknown narcolepsy at the time, so it is doable. If you need to power nap, then do it. It is unbelievable what it can do. Yes, I probably slept through most of college but the Masters was something completely different. I loved it. Tape record your classes. Keep lists, notes, things to do. Break projects into small tasks. IT or whatever you want can be done.

Jaye

PS: Talk with your doctor about your Provigil dosing. I have taken a holiday from it only to go back again. I was using up to 400 mg a day 2 years ago but then it seemed to stop working when my insurance stopped. wink.gif Go figure.



#4 xiola23

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Posted 21 June 2008 - 11:37 PM

Hi Emily! This disease is all about compromise and learning to do things differently.
You seem to have the coping mechanisms set in place already such as blackberry and bathroom rituals and extra support from your professors. Just keep on keeping on. Be very proud of your accomplishments thus far...I promise you none of your time and energy put into schooling will be a waste. I truly believe that when one door closes, another opens. We may not be on the same path that we originally thought we would be at this point, but there are so many other opportunities that will arise.
I like to think that just as a blind person or deaf person, their other senses are heightened, so are certain senses of Narcoleptics. If you used to be a public speaker and don't feel like you can handle that anymore, then maybe it's time to pursue writing a book. Many public speakers have gone on to write about their conferences and/or seminars and have been just as or even more successful.
I wish you all the best looking forward. Stay positive! Blessings.
Kat

QUOTE (Snoreasaur @ Jun 16 2008, 07:06 PM) <{POST_SNAPBACK}>
Hi. I'm new. Got diagnosed with minor narcolepsy after years of beng told I was depressed, manic, bi polar, add, etc. I began on Provigil which worked fine for the first 6 months. But now, I am starting to experience more and more of the narcolepsy. I followed my dr's advice and lost 40 pounds, became more active, stopped drinking diet coke aka my lifeline, and tried to become much healthier in the hopes it would stave off the narcolepsy getting worse.

But, I am heading back to do my masters. I barely got through my undergrad as I slept through most of it. Fortunatly, I had understanding professors who took pity on the poor sick girl. I had my first unannounced sleep attack and cataplexy spell the other day, and my dreams during even my sleep attacks are getting more violent every time I close my eyes. I have to use the bathroom religiously before I go to bed as the night terrors are becoming gripping. My fiance has a bruise on his arm from where I tried to punch him thinking he wa a serial killer.

I'm 24, and I felt like I had my whole life ahead of me, but now I am saddled with this crippling exaustion that I can't explain to anyone.I used to be a professional speaker, but now I can barely string together a sentance without stuttering. I forget simple words like fork and hair. Without my blackberry, I don't know what I am doing. They don't warn you about this part of narcolepsy. I feel like I have been robbed of my intelligence. People ridicule me becasue they say, "well, I'm tierd all day, I could have narcolepsy too. Anyone could have narcolepsy". My fiance is really understanding and gracious, but it's hard not to think you are creating this in your head sometimes.

So. My question. There is so little research and so little information out there. Can anyone tell me what I can expect from this disease? How fast did people's symptoms get worse? Is it common that my meds do ever feel like they are working? I know no two cases are the same, but I feel like I am loosing grips. Can anyone give me any tips to help me in class? I am getting special exemptions for time and exams, but I need help on the day to day stuff. Anything to gain back control would help.

I am exausted from being exausted. I am scared because there is no information telling me what's going to happen next. I'm paranoid that I have forgotten something or that I am possibly still asleep, and that scares me the most.

Thanks for listening.
Emily