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

[Guest guest]

Hi ,

Thank you!My drive to work is usually 1- 2 hours long, I live far away and won't

be able to move until next year or so. I really wish I could because it's

killing me.

I will try the sleep.

Have you ever had a violent episode like I did? 

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]

No. I've had hypnogogic hallucinations, where I thought my eyes were open but I

was really sleeping. I also have episodes of cataplexy, where I laugh too hard

and I just go limp, but not nearly as severely as some I've heard of. But I've

never had any violent episodes. I've walked in my sleep and sprained my ankle,

but never what you described.

________________________________

To: tetheredspinalcord

Sent: Thu, July 7, 2011 4:14:07 PM

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

Hi ,

Thank you!My drive to work is usually 1- 2 hours long, I live far away and won't

be able to move until next year or so. I really wish I could because it's

killing me.

I will try the sleep.

Have you ever had a violent episode like I did?

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]

I have researched a bit and it looks like there are sleeping disorders linked to

chronic pain patients.Today I woke up at 11am (went to bed night before at 1am)

and then woke up at 7pm again! Then went back and woke up 30 min ago. It's

really causing a strain on my relationship. My husband hates it because we end

up staying at home every weekend. Does that happen to you?When I don't have work

that is my typical sleep schedule, otherwise at work I'm constantly having

sleep attacks, or when I drive to/from work.

I think I' m sleep walking, I find my toilet not flushed, water by nightstand,

energy bar eaten etc...

Could you tell me what I can expect diagnosis wise and med wise? Is it pretty

easy to manage while diagnosed? Is diagnosis easy? 

It took me 2 1/2  years to get TC dx, then after about 8 months to get " central

sensitization " diagnosis (like fibro) from uncontrolled pain... I don't know if

I can handle going through the diagnosis hoops again!

Thank you

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]

This caused a huge strain on my marriage. It amazes me still how intolerant

people are of sleep disorders. He thought I was just being lazy. My answer to

that was " Yes, darling. This is EXACTLY what I want to do, sleep my entire

f***ing life away. This is the choice I've made for myself. " It used to drive

me nuts. I would fall asleep mid-sentence. At one point, I was sleeping every

moment I wasn't at work. Then I had a three year stint of really bad sleeping

habits. I'd sleep approximately 2 hours a night, 11 pm to 1 am. I couldn't sleep

any longer than that. I got so sick from it. I think I ended up weighing 98

pounds before I got sleeping pills to help.

You should definitely see a sleep doctor and a neurologist. The diagnosis came

in the form of two sleep studies, a night time one and a day time one that

showed that I dream within minutes of falling asleep. I sleep walk too, though

clumsy me, I tend to hurt myself and wake myself up before I get too far. I take

Provigil, which is REALLY expensive. Even with insurance, it costs $582 a month.

Luckily I only have to pay $1000 a year for meds, so after two months, mine are

free for the rest of the year. But there are other meds, cheaper meds. Ritalin,

any of the ADHD meds really. And yes, it is manageable with medication. Before I

was put on meds, I drank 160 oz of coffee a day to stay awake - 20 oz every hour

during my work day. But the medication is better. I prefer not to overload on

caffeine.

I guess because of my personality, I've not ever seen my diagnostic path as

being all that atypical. I had narcolepsy for 5 years before it was diagnosed.

They tested me for MS a few times because of it. Of course, I never really told

the doctor of the extent of falling asleep at the drop of a hat. After I told

the doctor, it was a matter of a month, two sleep studies and done. My

fibromyalgia diagnosis was accidental. I wasn't complaining. I was seeing a

massage therapist for a year, every two weeks, and my muscles weren't getting

more slack and she noticed inflammation and I happened to have a doctor's

appointment right after a massage and she told me to tell my doctor and have him

feel my muscles. He was stunned that within half an hour of a massage, my neck

muscles were like rock and I had all these trigger points still. But I never

would have complained about the issues I have related to fibro. My entire life

has been filled with quirky stuff, so I tend to just blow most of it off.

Good luck. If you need to vent or just get a reality check on anything, let me

know. I actually think narcolepsy is one of the better disorders to have. We get

the good drugs.

________________________________

To: tetheredspinalcord

Sent: Sun, July 10, 2011 3:13:54 AM

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

I have researched a bit and it looks like there are sleeping disorders linked to

chronic pain patients.Today I woke up at 11am (went to bed night before at 1am)

and then woke up at 7pm again! Then went back and woke up 30 min ago. It's

really causing a strain on my relationship. My husband hates it because we end

up staying at home every weekend. Does that happen to you?When I don't have work

that is my typical sleep schedule, otherwise at work I'm constantly having sleep

attacks, or when I drive to/from work.

I think I' m sleep walking, I find my toilet not flushed, water by nightstand,

energy bar eaten etc...

Could you tell me what I can expect diagnosis wise and med wise? Is it pretty

easy to manage while diagnosed? Is diagnosis easy?

It took me 2 1/2 years to get TC dx, then after about 8 months to get " central

sensitization " diagnosis (like fibro) from uncontrolled pain... I don't know if

I can handle going through the diagnosis hoops again!

Thank you

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