Narcolepsy and TC- I need help!!!

[Guest guest]

Is there any connection between the 2? Has anyone here developed narcoleptic

symptoms after surgery?*** These episodes were NOT present prior to surgery or

at any time in my life. I could never fall asleep if there was ANY noise or

light***

I started having these sleep issues where I almost lose control of my body and

start dozing off- driving, work... fall asleep for 1 second, wake up, fall

asleep... and it will continue for an hour or 2. I thought it was the morphine.

I was also going to bed at 10:30pm, and getting up at 2am- daily.

We switched to the Oxycontin, and I am still having the same issues, but now I

am not sleeping at night. I can stay up all night, go to work, and I am fine.

However on the weekends I sleep ALL weekend, when we had a power outage 2 weeks

ago and I had no work for 3 days, I slept on the couch all day...Then the

same dozing at desk, car. Hubby finding me upright sleeping sitting up on the

couch. Then when he is at work I sometimes have an " episode " while smoking- I

wake up because the cigarette is burning me or the couch. 

The car thing is scaring me. I lose control and end up in the " sleep " lane all

the time. 

This morning I woke up in a lot of severe pain. Guess what I was doing? Banging

my FACE on our kitchen counter and thrashing my arms. I broke 6 glasses and have

2 huge bruises on my cheek and chin.

Just called a sleep place and they think I may be exhibiting signs of

narcoleptic episodes, have an appointment for the 27th.

I have been on both morphine and Oxycontin on and off for the last 3 years,

never an issue. 

Anyone else?? Very scared

[Guest guest]

I have narcolepsy, but it reared its ugly head after a viral infection, not

surgery. It's now controlled for the most part, and just like the TCS, it's just

another part of my life.

The driving thing is scary. So is smoking and falling asleep. You shouldn't

smoke inside your house if your episodes are uncontrolled. Big pain in the butt,

but it's not as big a pain as burning down your house.

There are signs of the episodes. If you watch for them, you can learn to

recognize them and get some warning. I get about 15 minutes now. I get a very

thick feeling in my head, like there's jello around my brain. The tired isn't a

sleepy tired, but an overwhelming all body tired. After the head thing starts, I

can fight it for 15 minutes before I'm screwed and I have to sleep. I pull off

the road. I sit down on a bench (I have fallen asleep on my feet). I stop doing

anything that might be dangerous while sleeping. Turn the stove off, etc. It's

an adaptation thing.

And quite honestly, mine is controlled with medication and I'm barely affected

by it except in times of high stress. It's not a life ending diagnosis, unless

you keep falling asleep while you're smoking in the house!!

________________________________

To: Tetheredspinalcord <tetheredspinalcord >

Sent: Wed, July 6, 2011 3:22:23 PM

Subject: Narcolepsy and TC- I need help!!!

Is there any connection between the 2? Has anyone here developed narcoleptic

symptoms after surgery?*** These episodes were NOT present prior to surgery or

at any time in my life. I could never fall asleep if there was ANY noise or

light***

I started having these sleep issues where I almost lose control of my body and

start dozing off- driving, work... fall asleep for 1 second, wake up, fall

asleep... and it will continue for an hour or 2. I thought it was the morphine.

I was also going to bed at 10:30pm, and getting up at 2am- daily.

We switched to the Oxycontin, and I am still having the same issues, but now I

am not sleeping at night. I can stay up all night, go to work, and I am fine.

However on the weekends I sleep ALL weekend, when we had a power outage 2 weeks

ago and I had no work for 3 days, I slept on the couch all day...Then the

same dozing at desk, car. Hubby finding me upright sleeping sitting up on the

couch. Then when he is at work I sometimes have an " episode " while smoking- I

wake up because the cigarette is burning me or the couch.

The car thing is scaring me. I lose control and end up in the " sleep " lane all

the time.

This morning I woke up in a lot of severe pain. Guess what I was doing? Banging

my FACE on our kitchen counter and thrashing my arms. I broke 6 glasses and have

2 huge bruises on my cheek and chin.

Just called a sleep place and they think I may be exhibiting signs of

narcoleptic episodes, have an appointment for the 27th.

I have been on both morphine and Oxycontin on and off for the last 3 years,

never an issue.

Anyone else?? Very scared

[Guest guest]

I have stopped that practice...

So, and this may be a stupid thing to ask. When you get this " sleep attack " you

pull over and sleep? 

Subject: Re: Narcolepsy and TC- I need help!!!

To: tetheredspinalcord

Date: Wednesday, July 6, 2011, 2:38 PM

 

I have narcolepsy, but it reared its ugly head after a viral infection,

not

surgery. It's now controlled for the most part, and just like the TCS, it's just

another part of my life.

The driving thing is scary. So is smoking and falling asleep. You shouldn't

smoke inside your house if your episodes are uncontrolled. Big pain in the butt,

but it's not as big a pain as burning down your house.

There are signs of the episodes. If you watch for them, you can learn to

recognize them and get some warning. I get about 15 minutes now. I get a very

thick feeling in my head, like there's jello around my brain. The tired isn't a

sleepy tired, but an overwhelming all body tired. After the head thing starts, I

can fight it for 15 minutes before I'm screwed and I have to sleep. I pull off

the road. I sit down on a bench (I have fallen asleep on my feet). I stop doing

anything that might be dangerous while sleeping. Turn the stove off, etc. It's

an adaptation thing.

And quite honestly, mine is controlled with medication and I'm barely affected

by it except in times of high stress. It's not a life ending diagnosis, unless

you keep falling asleep while you're smoking in the house!!

________________________________

To: Tetheredspinalcord <tetheredspinalcord >

Sent: Wed, July 6, 2011 3:22:23 PM

Subject: Narcolepsy and TC- I need help!!!

Is there any connection between the 2? Has anyone here developed narcoleptic

symptoms after surgery?*** These episodes were NOT present prior to surgery or

at any time in my life. I could never fall asleep if there was ANY noise or

light***

I started having these sleep issues where I almost lose control of my body and

start dozing off- driving, work... fall asleep for 1 second, wake up, fall

asleep... and it will continue for an hour or 2. I thought it was the morphine.

I was also going to bed at 10:30pm, and getting up at 2am- daily.

We switched to the Oxycontin, and I am still having the same issues, but now I

am not sleeping at night. I can stay up all night, go to work, and I am fine.

However on the weekends I sleep ALL weekend, when we had a power outage 2 weeks

ago and I had no work for 3 days, I slept on the couch all day...Then the

same dozing at desk, car. Hubby finding me upright sleeping sitting up on the

couch. Then when he is at work I sometimes have an " episode " while smoking- I

wake up because the cigarette is burning me or the couch.

The car thing is scaring me. I lose control and end up in the " sleep " lane all

the time.

This morning I woke up in a lot of severe pain. Guess what I was doing? Banging

my FACE on our kitchen counter and thrashing my arms. I broke 6 glasses and have

2 huge bruises on my cheek and chin.

Just called a sleep place and they think I may be exhibiting signs of

narcoleptic episodes, have an appointment for the 27th.

I have been on both morphine and Oxycontin on and off for the last 3 years,

never an issue.

Anyone else?? Very scared

[Guest guest]

Yes. I pull off the road and sleep. I have to. If I don't, I could kill someone.

Once it starts, I know I have no choice. It once took me three hours to take a

one hour trip, but that was before I was diagnosed and treated. It happens very

rarely now. But I don't take long road trips by myself. If the drive is longer

than an hour, I won't go alone. It's just something to manage and I do.

________________________________

To: tetheredspinalcord

Sent: Wed, July 6, 2011 3:56:20 PM

Subject: Re: Narcolepsy and TC- I need help!!!

I have stopped that practice...

So, and this may be a stupid thing to ask. When you get this " sleep attack " you

pull over and sleep?

Subject: Re: Narcolepsy and TC- I need help!!!

To: tetheredspinalcord

Date: Wednesday, July 6, 2011, 2:38 PM

I have narcolepsy, but it reared its ugly head after a viral infection, not

surgery. It's now controlled for the most part, and just like the TCS, it's just

another part of my life.

The driving thing is scary. So is smoking and falling asleep. You shouldn't

smoke inside your house if your episodes are uncontrolled. Big pain in the butt,

but it's not as big a pain as burning down your house.

There are signs of the episodes. If you watch for them, you can learn to

recognize them and get some warning. I get about 15 minutes now. I get a very

thick feeling in my head, like there's jello around my brain. The tired isn't a

sleepy tired, but an overwhelming all body tired. After the head thing starts, I

can fight it for 15 minutes before I'm screwed and I have to sleep. I pull off

the road. I sit down on a bench (I have fallen asleep on my feet). I stop doing

anything that might be dangerous while sleeping. Turn the stove off, etc. It's

an adaptation thing.

And quite honestly, mine is controlled with medication and I'm barely affected

by it except in times of high stress. It's not a life ending diagnosis, unless

you keep falling asleep while you're smoking in the house!!

________________________________

To: Tetheredspinalcord <tetheredspinalcord >

Sent: Wed, July 6, 2011 3:22:23 PM

Subject: Narcolepsy and TC- I need help!!!

Is there any connection between the 2? Has anyone here developed narcoleptic

symptoms after surgery?*** These episodes were NOT present prior to surgery or

at any time in my life. I could never fall asleep if there was ANY noise or

light***

I started having these sleep issues where I almost lose control of my body and

start dozing off- driving, work... fall asleep for 1 second, wake up, fall

asleep... and it will continue for an hour or 2. I thought it was the morphine.

I was also going to bed at 10:30pm, and getting up at 2am- daily.

We switched to the Oxycontin, and I am still having the same issues, but now I

am not sleeping at night. I can stay up all night, go to work, and I am fine.

However on the weekends I sleep ALL weekend, when we had a power outage 2 weeks

ago and I had no work for 3 days, I slept on the couch all day...Then the

same dozing at desk, car. Hubby finding me upright sleeping sitting up on the

couch. Then when he is at work I sometimes have an " episode " while smoking- I

wake up because the cigarette is burning me or the couch.

The car thing is scaring me. I lose control and end up in the " sleep " lane all

the time.

This morning I woke up in a lot of severe pain. Guess what I was doing? Banging

my FACE on our kitchen counter and thrashing my arms. I broke 6 glasses and have

2 huge bruises on my cheek and chin.

Just called a sleep place and they think I may be exhibiting signs of

narcoleptic episodes, have an appointment for the 27th.

I have been on both morphine and Oxycontin on and off for the last 3 years,

never an issue.

Anyone else?? Very scared