9 replies to this topic

[Diane in North Carolina]

I'm looking for anyone else like me.............................

Before being finally being diagnosed with narcolepsy with cataplexy about 6 months ago. . . in 2001 I was sitting at my desk at work on my computer, when my head suddenly fell over on my shoulder and I couldn't move. I called out my assistant's name as it happened. By the time she got to me, my eyes were open but I couldn't speak. It lasted for a few minutes.

Following that initial collapse episode, I had trouble moving in the mornings, my body felt like a tuning fork ringing. I sometimes had blurred vision, wild, graphic dreams, and I would sometimes wake up shaking like I was being shocked. I would stand up to walk and not be able to move. I simply fell over a couple of times. I had a couple of automatic behaviour episodes and woke up in my laundry room in the middle of a dream. When I started dreaming while I was awake, I thought I had lost my mind or that I was seeing visions. My feet would sometimes drag when I walked.

The neurologist at first thought it was MS, rans all kinds of tests, ruled that out, and then wrote me off saying they couldn't help me. I gave up in 2003.

In late 2006, the symptoms came on with a venegance. My husband got involved this time around. He took me to Wake Forest University Baptist Medical Center, and I finally got a diagnosis, although it is a presumed diagnosis. Because all my chemical tests are normal, my doctor tells me that I am in the 10% of individuals who have narcolepsy with cataplexy with normal hypocretin levels. When he first told me the hypocretin levels were within normal limits, I didn't even have time to burst into tears out of frustration, before he immediately showed me a chart from Stanford explaining that didn't mean it wasn't narcolepsy with cataplexy. No one wants this disorder, but just finally being told what's wrong with you is a blessing.

I don't fit the classic narcolepsy with cataplexy profile. I have never actually fallen asleep in a meeting or in a class, although I did "lose time" several times while driving back in 2001. I have had all the narcolepsy symptoms except excessive daytime sleepiness for years. Sometimes I think I would have that too if I didn't stay contantly on the move mentally or physically. Lately, I've begun to wonder if perhaps I keep moving in a subconscious effort to stay awake.

Here lately I have to admit that it's becoming much more difficult to hold my head up. My neck muscles just feel too weak to hold my head. I have to rest my head on my hands most of the day. But just because my head may fall over, I don't always go to sleep. Sometimes I wish I could, so I wouldn't hear what people say about me when they think I'm unconscious.

My cataplexy triggers are:
- Being startled
- Unpleasant, loud, or repetitive noises
- Bright or blinking lights
- Windshield wipers
- Fear
- Being too hot or too cold
- Being still for too long without moving or talking

After the cataplexy came on full blown last year, I also develop a stutter when an attack is threatened to come on. My husband says I sound like Foghorn Leghorn on Loony Tunes.

Recently while in my boss's office while we were on a conference call with the president and another VP, the speaker phone was near me and very loud. I slid right out of my chair, hit on my bottom, and fell over with my chin to the floor. What a sight that had to be. I was mortified when my boss had to stop the call and come around to pick me up.

A few weeks ago when a managment meeting was gearing up to start, someone grabbed my chair from behind and wheeled me around like a carnival ride. I promptly fell over in the chair. Luckily two of my colleagues who understand my condition, grabbed the chair and me. They discretely put me on the floor behind the table cloth until I recovered.

If I try to fight a cataplexy attack, I look like I'm having a seizure. I had an ambulance called on me three times in one week last year because of that. Now I've learning if I give into it, it passes much faster.

I take Xyrem with success. I tried Provigil, but it seemed to make my neck hurt.

Is there anyone else out there that feels as strange as me?

[greatbig47]

I'm looking for anyone else like me...........
Is there anyone else out there that feels as strange as me?

My new friend, Diane...

You are SO (!!!!) not alone. Most of us can relate to what you are going through. We all have walked similuar paths, and yet have not walked the exact same path you have...which is what makes each of our testimonies personal. Thank you for sharing yours!

You are not alone.

This condition we have has the ability to be slightly different among us. Most of us experience the Cat when we laugh...some when scared...some when stressed...some during orgasm...The condition seems to attach on to different things among us.

You are not alone.

I've had Cataplexy as long as I can remember. When I was five I remember going to Disneyland with my family. While walk down Main Street USA, something made me laugh while holding my Dad's hand, and I lost it. I dropped to the ground, and HARD! My parents had never heard the term "Cataplexy" before. My Dad's reaction was to yell at me, kick my ass and tell me to "knock it off".

"Knock it off"...yeah...as if I could control it. Happiest place on earth? whatever.

I'm 40 now, and I was diagnosed a short 4 years ago. Up until then, life was a battle. I spent months homeless and brain-fried from anti-pyscotics handed to me. Like so many of my brothers and sisters on this board, I was mis-diagnosed with "Bi-Polar Disorder". It took my house, my family and all shreds of self confidence away.

You've entered an online community full of people whos daily lives have been affected by cataplexy, and they are not alone either.
You are not alone. We are here for each other.

Imagine the best day possible after reading this...and have it! Hunt it down and make it yours!

-Stu

[Shambo]

I don't fit the classic narcolepsy with cataplexy profile. I have never actually fallen asleep in a meeting or in a class, although I did "lose time" several times while driving back in 2001. I have had all the narcolepsy symptoms except excessive daytime sleepiness for years. Sometimes I think I would have that too if I didn't stay contantly on the move mentally or physically. Lately, I've begun to wonder if perhaps I keep moving in a subconscious effort to stay awake.

Now I know this is off topic of the cataplexy but I was wondering about the 'losing time'. I often find my self driving and all of a sudden realizing I can't remember anything about the last few miles I drove. Especially on the freeway with no turns or traffic lights. Is this similar to what you've experienced?

[Julie A]

Well, this might open a can of worms here but my first Cataplexy attacks came without an obvious trigger at all. My neuro told me they were CAT attacks, but some people argued because I wasn't laughing, frightened, etc. I just out of nowhere would become paralyzed, fall on the floor, jerk afew times, and all while conscious. He said it couldn't have been a seizure, which I thought it was, due to the fact that you cannot be conscious during a sezuire as the brain kind of shuts down. After my MSLT, and knowing that sleepiness and unbearable sleep attacks were a part of my life since, well, forever, he agreed they were CAT attacks. Only later did I develop classic triggers. But it is the same attack I had without any trigger as a child...Standing in line for the bathroom, sitting at my desk listening to the teacher in school, even walking up to the TV to change the channel were all time when I had the CAT attacks. No trigger at all. Very strange. I have heard the argument that it cannot be a CAT attack without the emotional trigger, and I have nothing to disprove. But I know, that in my experience, the trigger was either not there, or not obvious.

[Diane in North Carolina]

Stu,

Sorry to just now answer, I guess I didn't know how to use the site. I've been checking the "New Messages," which still says "0" and I didn't see your reply until just now.

Thanks for your kind words. I truly appreciate you.

Diane

[Diane in North Carolina]

Shambo,

Yes, the lost time is most frequently on the freeway. I could be driving, or my husband. It's like you snap your fingers and, bam, you're five miles further down the road.

Diane

[Some1whocares]

My new friend, Diane...

You are SO (!!!!) not alone. Most of us can relate to what you are going through. We all have walked similuar paths, and yet have not walked the exact same path you have...which is what makes each of our testimonies personal. Thank you for sharing yours!

You are not alone.

This condition we have has the ability to be slightly different among us. Most of us experience the Cat when we laugh...some when scared...some when stressed...some during orgasm...The condition seems to attach on to different things among us.

You are not alone.

I've had Cataplexy as long as I can remember. When I was five I remember going to Disneyland with my family. While walk down Main Street USA, something made me laugh while holding my Dad's hand, and I lost it. I dropped to the ground, and HARD! My parents had never heard the term "Cataplexy" before. My Dad's reaction was to yell at me, kick my ass and tell me to "knock it off".

"Knock it off"...yeah...as if I could control it. Happiest place on earth? whatever.

I'm 40 now, and I was diagnosed a short 4 years ago. Up until then, life was a battle. I spent months homeless and brain-fried from anti-pyscotics handed to me. Like so many of my brothers and sisters on this board, I was mis-diagnosed with "Bi-Polar Disorder". It took my house, my family and all shreds of self confidence away.

You've entered an online community full of people whos daily lives have been affected by cataplexy, and they are not alone either.
You are not alone. We are here for each other.

Imagine the best day possible after reading this...and have it! Hunt it down and make it yours!

-Stu

[Some1whocares]

Dear, Diane

[Some1whocares]

Dear, Diane

[xiola23]

I don't have the common triggers such as laughter. but being startled is A HUGE trigger for me. My cataplexy started when i was about 24 and out of nowhere, my eyes started to droop and my skin kinda felt like it was sliding off my face. My bottom lip and jaw became limp and I could no longer hold my mouth closed, causing me to drool...I couldn't feel my tongue and thought i was going to swallow it. It all kind of felt like a mini stroke seems like it might feel. My hands became weak, but i could still move them. After 2 or so minutes everything was normal again. I can't speak or form words at all during this time. Its quite annoying. Since then, the cataplexy has gotten alot worse and I know suffer full on collapse at times...always seems to happen in the freezer section of the grocery store too.? My neuro told me just recently that I probably wouldn't have spent 10+ years looking for answers if I would have only said "I lose muscle control" rather than "my face becomes paralyzed."
Funny how wording things can make all the difference in the world.

I'm looking for anyone else like me.............................

Before being finally being diagnosed with narcolepsy with cataplexy about 6 months ago. . . in 2001 I was sitting at my desk at work on my computer, when my head suddenly fell over on my shoulder and I couldn't move. I called out my assistant's name as it happened. By the time she got to me, my eyes were open but I couldn't speak. It lasted for a few minutes.

Following that initial collapse episode, I had trouble moving in the mornings, my body felt like a tuning fork ringing. I sometimes had blurred vision, wild, graphic dreams, and I would sometimes wake up shaking like I was being shocked. I would stand up to walk and not be able to move. I simply fell over a couple of times. I had a couple of automatic behaviour episodes and woke up in my laundry room in the middle of a dream. When I started dreaming while I was awake, I thought I had lost my mind or that I was seeing visions. My feet would sometimes drag when I walked.

The neurologist at first thought it was MS, rans all kinds of tests, ruled that out, and then wrote me off saying they couldn't help me. I gave up in 2003.

In late 2006, the symptoms came on with a venegance. My husband got involved this time around. He took me to Wake Forest University Baptist Medical Center, and I finally got a diagnosis, although it is a presumed diagnosis. Because all my chemical tests are normal, my doctor tells me that I am in the 10% of individuals who have narcolepsy with cataplexy with normal hypocretin levels. When he first told me the hypocretin levels were within normal limits, I didn't even have time to burst into tears out of frustration, before he immediately showed me a chart from Stanford explaining that didn't mean it wasn't narcolepsy with cataplexy. No one wants this disorder, but just finally being told what's wrong with you is a blessing.

I don't fit the classic narcolepsy with cataplexy profile. I have never actually fallen asleep in a meeting or in a class, although I did "lose time" several times while driving back in 2001. I have had all the narcolepsy symptoms except excessive daytime sleepiness for years. Sometimes I think I would have that too if I didn't stay contantly on the move mentally or physically. Lately, I've begun to wonder if perhaps I keep moving in a subconscious effort to stay awake.

Here lately I have to admit that it's becoming much more difficult to hold my head up. My neck muscles just feel too weak to hold my head. I have to rest my head on my hands most of the day. But just because my head may fall over, I don't always go to sleep. Sometimes I wish I could, so I wouldn't hear what people say about me when they think I'm unconscious.

My cataplexy triggers are:
- Being startled
- Unpleasant, loud, or repetitive noises
- Bright or blinking lights
- Windshield wipers
- Fear
- Being too hot or too cold
- Being still for too long without moving or talking

After the cataplexy came on full blown last year, I also develop a stutter when an attack is threatened to come on. My husband says I sound like Foghorn Leghorn on Loony Tunes.

Recently while in my boss's office while we were on a conference call with the president and another VP, the speaker phone was near me and very loud. I slid right out of my chair, hit on my bottom, and fell over with my chin to the floor. What a sight that had to be. I was mortified when my boss had to stop the call and come around to pick me up.

A few weeks ago when a managment meeting was gearing up to start, someone grabbed my chair from behind and wheeled me around like a carnival ride. I promptly fell over in the chair. Luckily two of my colleagues who understand my condition, grabbed the chair and me. They discretely put me on the floor behind the table cloth until I recovered.

If I try to fight a cataplexy attack, I look like I'm having a seizure. I had an ambulance called on me three times in one week last year because of that. Now I've learning if I give into it, it passes much faster.

I take Xyrem with success. I tried Provigil, but it seemed to make my neck hurt.

Is there anyone else out there that feels as strange as me?