by Elizabeth (This place IS my Soap Opera) O.

Member since:
January 18, 2009

I'ts Official...

July 30, 2009 05:11 PM EDT

views: 167 | rating: 10/10 (9 votes) | comments: 31

I have Narcolepsy. All of my life, I've had trouble staying awake in dimly lit areas. MY house is lit up like an xmas tree. Even then, I'd find myself fighting to keep my eyes open while reading, using the computer, watching TV, or driving. I just thought it was because I don't sleep well, because of my back.

I had a sleep study done earlier this month and was told that the results show that I fall asleep quickly and completly skip the first part of the sleep cycle and go dircetly into REM sleep. That's why there are times I wake up during "sleep paralysis". When you are in REM sleep your brain secretes a hormone that paralizes your muscles, this way you don't "act out" your dreams. I wake up, upon occassion, during this time of my sleep cycle. It's EXTREMELY unpleasant, but NOT dangerous, and it's a HUGE indicator of Narcolepsy.

My doctor prescribed Nuvigil, it's a new drug that lasts 12 hours, meaning that you only take it once a day. The older version was taken twice a day. I started taking it on Tuesday, and I have already noticed a HUGE difference. I don't feel like I'm dragging around my house, I don't want to take a nap, and I'm not nearly nodding off at wierd points of the day.

Now, I have to make an appointment for my oldest son. He came into the living room one morning and said that he'd woken up and couldn't move. He'd NEVER heard me discuss this with anyone, and I remember having it happen as a child. It tends to be hereditary and if treated in children can improve their attention, their school grades, and their over all feelings and life. I'd been thinking he might have ADHD, now I believe that it's Narcolepsy. Some of the symptoms are similar. Trouble being still, paying attention, doing things that take patience, etc. Hopefully, I can help him feel better too.

Tags: family, health, medical, doctors, medicine, narcolepsy, sleep, sleep difficulties, sleep disturbances, paralasis

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Comments: 31

Katie Scarlett (Site Bouncer Wanna Be) O. Jul 30, 2009, 5:20pm EDT

Wow! If it weren't for the paralysis, I'd think I need to be tested too, but I am a light sleeper and wake up often several times during the night. I'm so glad the medicine is working for you and now you may be able to help your son too. That is a blessing, (ok ok so you don't like my choice of words, but that's how I describe it) in itself that maybe you found his early and can help.

Elizabeth (This place IS my Soap Opera) O. Jul 30, 2009, 6:02pm EDT

Sleep paraysis is only ONE symptom/sign. There are 4 HUGE signs: Excessive daytime sleepiness, Cataplexy (sudden loss of strength in muscles), sleep paralysis, hypnagogic hallucinations (hallucinations that occur just before falling asleep, during naps, and/or waking up.

Everyone has sleep paralysis, it's the WAKING UP during it that's uncommon. If you think you MIGHT have a Narcolepsy, you should talk to your doctor. The first thing they'll do is a sleep study. After that, you may get a blood test.

Katie Scarlett (Site Bouncer Wanna Be) O. Jul 31, 2009, 9:09am EDT

I do suffer from excessive daytime sleepiness. I sometimes feel like I'm going to nod out while sitting at the computer. Again, I've always attributed this to not sleeping well at night, and do think this is my problem, as the other symptoms don't apply to me.
Again, I'm glad that you are feeling better now and at least one problem seems to have been resolved.

Elizabeth (This place IS my Soap Opera) O. Jul 31, 2009, 11:34pm EDT

That's a big sign of narcolepsy, I was doing that too. Go talk to your doctor, see if you can get a sleep study. At worst you'll have to take a pill, and you'll feel better.

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Howard b. Jul 30, 2009, 5:31pm EDT

I hope things work out for you and your son. I use to work with a man that was my foreman at a nuclear plant. He would be giving out the work orders for the day and would fall asleep in the middle of a sentence. His young son also worked there too. The son would drive his dad back and forth to work. While watching training films he would fall asleep in a second. That was a few years ago. It was the first time I had seen anything like this. I really hope the new medication works for you.

Elizabeth (This place IS my Soap Opera) O. Jul 30, 2009, 6:05pm EDT

That is almost DEFINATELY Narcolepsy, and a pretty severe case too!
So far, I feel a lot better then I have in a LONG time.

Howard b. Jul 30, 2009, 8:57pm EDT

I hope the meds help you out. I'm glad you are doing better. I like that icon. I'm from that era.lol. Have a nice evening.

Elizabeth (This place IS my Soap Opera) O. Jul 30, 2009, 9:41pm EDT

So far, and I'm only on the "begining" dose. After seven days it goes to 250.
I have peace signs EVERYWHERE, including tatooed on my chest!

Howard b. Jul 30, 2009, 10:12pm EDT

my wife wears a necklace and ankle bracelet all the time with a peace sign on each. We are just old hippies.

Elizabeth (This place IS my Soap Opera) O. Jul 30, 2009, 10:39pm EDT

I'm a hippie, just a relatively young one. (G)

Chuck L. Aug 4, 2009, 10:03pm EDT

And I'm SO proud! (Really - I am)

Howard b. Aug 4, 2009, 11:02pm EDT

Hey Chuck. I'm an old hippie. And I'm proud too.lol.

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Elle L. Jul 30, 2009, 5:44pm EDT

Oh wow. I didn't know that sleep paralysis was part of narcolepsy. I hope they get it all figured out with your son. I am glad that you seem to be responding well to your medications.

Elizabeth (This place IS my Soap Opera) O. Jul 30, 2009, 6:06pm EDT

Sleep parlysis is normal, it keeps you from "acting out" your dreams. Without it, you could get badly hurt, or hurt someone else. It's the WAKING UP during it that's uncommon. However, that's just ONE symptom. The doctor doesn't usually see kids under 13 (he'll be 12 in October) but since I'm a patient and he seems to have the same symptoms he'll see him.

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Danielle P. Jul 30, 2009, 6:01pm EDT

I'm so glad you found a reason for your lethargy and I do hope your son gets diagnosed and feels much better like you do.

Elizabeth (This place IS my Soap Opera) O. Jul 30, 2009, 6:07pm EDT

Thank you. I hope so too. So far, it doesn't seem to have affected him to badly, but I wasn't as bad as a kid either. Although, they DID have me on Ritalin for a long time as a kid.

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anne ( way 2 crazy of a life ) c. Jul 31, 2009, 9:17am EDT

i am happy you are feeling better, I often wake up durning that paralyzing part of sleep, but I don't fall sleep that easy once I am up I am up. It freaks me out everytime i wake up durning that part.

Elizabeth (This place IS my Soap Opera) O. Jul 31, 2009, 11:32pm EDT

Yep, me too, scary but, luckily unlike apnea, not dangerous. You should get a neurologist, that's a HUGE sign of narcolepsy.

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Denise B. Jul 31, 2009, 9:20am EDT

glad the med is working - hope your son is ok

Elizabeth (This place IS my Soap Opera) O. Jul 31, 2009, 11:32pm EDT

So far, so good.

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Ron (in complete sheeple overload) W. Aug 1, 2009, 12:11am EDT

I just don't sleep well,...or long, so I know what my problem is. Glad you found a solution that works for you, though.

Elizabeth (This place IS my Soap Opera) O. Aug 1, 2009, 12:46am EDT

Hey, Ron, WHERE ya been, buddy?

I need to write a post about Narcolepsy. I didn't know how bad I felt, until I didn't feel that way anymore.

Ron (in complete sheeple overload) W. Aug 1, 2009, 1:32am EDT

Been a rough year, Elizabeth. Our family's taken a lot of hits, and I haven't been too inspired to write, or comment much, of late. Trying to come back from that, though. I had a guy that worked for me once that used to fall asleep with a lit cigarette in his fingers all the time, till it burned his fingers and woke him up. He got diagnosed, finally, but I don't think he ever got it under control...

Elizabeth (This place IS my Soap Opera) O. Aug 1, 2009, 4:08pm EDT

I'm sorry to hear that, I'm glad your Ok and that you're back.
It can be difficult to get a diagnosis, and I'm sure that there have been significant developments over the years for treatment.

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Kathy W. Aug 1, 2009, 2:52am EDT

Back in the 60s we had a lady on the street who was a very strong narcoleptic. She'd be sitting at my mom's kitchen table with the other neighborhood moms, drinking coffee and talking, and then, poof, she'd fall asleep mid sentence. Just drop off. She could be walking down the street, and stop to chat, and blam, she was napping.
She couldn't drive, of course, and we watched out for her, I don't know what it was like, we used to ponder whether she had really exceptional dreams during the sleep phase? Like she couldn't resist sleeping because the dreaming was calling her.
Sending Blessings for restful nights,
Wilka

Elizabeth (This place IS my Soap Opera) O. Aug 1, 2009, 4:09pm EDT

Wow, that IS severe. My problems have just gotten worse over the years. I always thought it was a combination of not sleeping well, low blood pressure and low blood sugar.

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*Carol ~Bronx Southern Belle D. Aug 1, 2009, 8:28pm EDT

I have it as well, and extreme insomnia. It's horrible. I sleep when I'm not supposed to, and can't sleep in bed. Go figure. Lot's of luck.

*Carol ~Bronx Southern Belle D. Aug 1, 2009, 8:28pm EDT

Then, come the drugs.

Elizabeth (This place IS my Soap Opera) O. Aug 1, 2009, 8:59pm EDT

I have NO problem sleeping, which WAS the problem. At least I know I'm not going to cause an accident falling asleep while driving, and I can do a lot more now, and I FEEL better. If that means I have to add another drug to my "repetoire" ce la vie.

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