Re: (and anyone with narcolepsy)

[Guest guest]

My sleep issue really got bad this year. Waking all night, people

finding me all over the house. Then falling alseep during the day.

Even fell asleep face first into a bowl of cereal. I found I had to

reduce meds I had been taking for almost 8 years. Suddenly, my 400mg

dose of topamax (100mg x4 per day) was the problem. For me it was

easy to figure out since I was also having problems speaking -- much

worse than when I started. Also, I retethered in a new location so

that nightly dose of pain meds was probably failing.

What worked for me was a combination of Ambien, Provigil, and a new

nerve pain med. It took 2 weeks or so to turn things around, so don't

expect a 'quick' fix.

M.

Wed, Aug 3, 2011 at 12:39 PM, Dybowski wrote:

> Hi ,

> I had my sleep study done last week Wednesday. It went okay. During the night

study I started smoking my e-cigarette, turning the pages of my book,

whimpering, and trying to get the sensors off! The day naps were BRUTAL. I slept

and had dreams during every single one, but it was so hard to stay awake in

between.

> I wanted to know if narcolepsy gets worse? Or if it's triggered by stress?My

issue now is that I can't seem to stay awake when I get home (on top of

car/work). I fall asleep on the couch from 6:30-9, then go back to bed at

11-6am...I have been doing things in my sleep because I find things everywhere.

> Have been setting 11 alarms, and still I have had days where I did not get up!

Then once I do get up and sit on the couch in the morning I have to set another

alarm, because I know I will fall asleep, coffee in hand.

> Just wondering why this is getting harder and harder instead of staying the

same? I used to have issues getting up, but not this severe, and not falling

asleep all over the place like I do now.

> My results come in on the 11th, was hoping you have some AM tips for me.

> Thank you!

>

>

>

>

[Guest guest]

Thank you ! I go in on the 11th.. hopefully they can figure something out.

I slept from 10Pm on Wednesday- 4pm Thursday!!! It's getting crazy

> Hi ,

> I had my sleep study done last week Wednesday. It went okay. During the night

study I started smoking my e-cigarette, turning the pages of my book,

whimpering, and trying to get the sensors off! The day naps were BRUTAL. I slept

and had dreams during every single one, but it was so hard to stay awake in

between.

> I wanted to know if narcolepsy gets worse? Or if it's triggered by stress?My

issue now is that I can't seem to stay awake when I get home (on top of

car/work). I fall asleep on the couch from 6:30-9, then go back to bed at

11-6am...I have been doing things in my sleep because I find things everywhere.

> Have been setting 11 alarms, and still I have had days where I did not get up!

Then once I do get up and sit on the couch in the morning I have to set another

alarm, because I know I will fall asleep, coffee in hand.

> Just wondering why this is getting harder and harder instead of staying the

same? I used to have issues getting up, but not this severe, and not falling

asleep all over the place like I do now.

> My results come in on the 11th, was hoping you have some AM tips for me.

> Thank you!

>

>

>

>

[Guest guest]

I too used to fall asleep with coffee in hand at the dining room

table, fully dressed, sitting straight up. I completely understand

your frustration. I learned not to stop in the AM. Get outside and

keep moving as much as possible. I seemed to stay awake if I kept

moving so I made sure I picked out all of my clothes, etc... the night

before. Got up, showered, dressed, and grabbed coffee and a pop tart

(like food) and headed out the door. Of course, the minute I walked

back in the house I would have a headache and would fall asleep.

Weird stuff.

I was lucky in that most of my sleeping was confined to my house or

when I was a passenger in a car. I slept through almost every movie I

went to, so movies were just a waste of money. Long boring meetings,

hahaha long winded speakers, almost anyone/thing that did not engage

me would put me to sleep. I am not 100% better about that stuff even

now.

I can't wait to here the results of your tests. Again, my advice is

to NOT STOP in the morning until you get to where you have to be.

That was the only thing that worked for me.

Be safe. If you start to fall asleep while driving, its time to not

drive. I would not, however, make a big issue of it to the drivers

license people. I have been told it is nearly impossible to get it

back when you are better. Use your common sense. If it starts to

effect your driving, put your license away in a drawer until you have

this thing licked.

M.

>> Have been setting 11 alarms, and still I have had days where I did not get

up! Then once I do get up and sit on the couch in the morning I have to set

another alarm, because I know I will fall asleep, coffee in hand.

>> Just wondering why this is getting harder and harder instead of staying the

same? I used to have issues getting up, but not this severe, and not falling

asleep all over the place like I do now.

>> My results come in on the 11th, was hoping you have some AM tips for me.

>> Thank you!

>>

>>

>>

>>

[Guest guest]

Here are the things I've found that help me not to sleep at inappropriate times.

1. No sugar/carbs in the AM. If I eat high carbs in the morning, I have

guaranteed myself a day of sleep issues. I often skip lunch because eating makes

it worse for me

2. 20 oz of coffee will keep me awake for about an hour when I'm unmedicated. I

would drink one every hour while at work, then another about half an hour before

I had to leave for home and I'd just get through the door before I'd be falling

asleep again.

3. Unlike , I can fall asleep even when walking. I learned the signals that

tell me I won't be able to stay awake and I don't ignore them. Ever.

4. Stress makes it much, much worse. I am going through a pretty ugly sitch at

home and I realized that on bad days, I need naps no matter how much medication

I take. Good days, I can go without the nap. The drugs work just fine.

5. I listen to my body. Learn the signals. Most important piece of advice. There

is an odd feeling I get when I'm about to have an episode. I yawn a lot, but

normal sleepy yawning. This is like a yawn that comes from the pit of my soul.

My head gets foggy. I get confused. When these things happen, I have fifteen

minutes to be lying down. If I'm on the road, I pull over immediately at the

first safe spot. I don't try to ride it out or push it. And I nap. Sometimes 15

minutes will be enough. Sometimes I need two hours.

, dreams during two naps during your MSLT is positive for narcolepsy. If

you dreamed through all of your naps, it's a pretty sure bet that's what you'll

be told. Provigil has saved my life. It's expensive, but will soon be generic

and hopefully not so bad.

Do NOT tell the licensing people that you have narcolepsy. I would even be

careful telling your doctor about falling asleep while driving. Some states have

requirements for doctors to report you to the DMV and they will pull your

license. Also, if you have an accident because of a sleep disorder, your

culpability goes way up. Be very careful while driving.

________________________________

To: tetheredspinalcord

Sent: Saturday, August 6, 2011 12:31 PM

Subject: Re: (and anyone with narcolepsy)

 

I too used to fall asleep with coffee in hand at the dining room

table, fully dressed, sitting straight up. I completely understand

your frustration. I learned not to stop in the AM. Get outside and

keep moving as much as possible. I seemed to stay awake if I kept

moving so I made sure I picked out all of my clothes, etc... the night

before. Got up, showered, dressed, and grabbed coffee and a pop tart

(like food) and headed out the door. Of course, the minute I walked

back in the house I would have a headache and would fall asleep.

Weird stuff.

I was lucky in that most of my sleeping was confined to my house or

when I was a passenger in a car. I slept through almost every movie I

went to, so movies were just a waste of money. Long boring meetings,

hahaha long winded speakers, almost anyone/thing that did not engage

me would put me to sleep. I am not 100% better about that stuff even

now.

I can't wait to here the results of your tests. Again, my advice is

to NOT STOP in the morning until you get to where you have to be.

That was the only thing that worked for me.

Be safe. If you start to fall asleep while driving, its time to not

drive. I would not, however, make a big issue of it to the drivers

license people. I have been told it is nearly impossible to get it

back when you are better. Use your common sense. If it starts to

effect your driving, put your license away in a drawer until you have

this thing licked.

M.

>> Have been setting 11 alarms, and still I have had days where I did not get

up! Then once I do get up and sit on the couch in the morning I have to set

another alarm, because I know I will fall asleep, coffee in hand.

>> Just wondering why this is getting harder and harder instead of staying the

same? I used to have issues getting up, but not this severe, and not falling

asleep all over the place like I do now.

>> My results come in on the 11th, was hoping you have some AM tips for me.

>> Thank you!

>>

>>

>>

>>

[Guest guest]

Thank you for the tips, I will try to implement some of them next week.

, that is good advice about not stopping during the morning, although

sometimes I will sit down on a chair/couch and just fall asleep! I did get a few

things done yesterday by making sure I keep busy

I was wondering about the 2 nap thing. I thought they said 4 to me, but then I

read 2.I always have dreams, even if I fall asleep for 10 min! 

- I think you may be on to something with the stress thing. My dad has

been ill and he had something else happen this week, made me stressed... and I

slept like crazy. Same thing today, hubby told me something  this morning and I

slept all day, besides a 3 hour window when I went to see a friend! 

I am embarrassed to admit the shower/getting ready thing is very hard for me

right now. I hope I can get on medication soon so that I can take care of myself

better. Have not styled my hair in weeks and dry shampoo is my new BFF.Was also

wondering about the DMV. Told the doctor I am not driving anymore, which is

true, I placed an ad and have been carpooling ever since you told me ()

to pull over and sleep. I'm worried that if something were to happen it would be

a DUI based on the medication I am on currently. We have a friend who took a bit

more pain meds (her hubby was dying in hospital) and had a minor fender bender.

She lost her DL last year, and is charged with DUI. Your warnings and her story

scared me straight

Will update on the 11th in the evening , should have results then.

Take care and thanks again

Subject: Re: (and anyone with narcolepsy)

To: " tetheredspinalcord " <tetheredspinalcord >

Date: Saturday, August 6, 2011, 3:59 PM

 

Here are the things I've found that help me not to sleep at inappropriate

times.

1. No sugar/carbs in the AM. If I eat high carbs in the morning, I have

guaranteed myself a day of sleep issues. I often skip lunch because eating makes

it worse for me

2. 20 oz of coffee will keep me awake for about an hour when I'm unmedicated. I

would drink one every hour while at work, then another about half an hour before

I had to leave for home and I'd just get through the door before I'd be falling

asleep again.

3. Unlike , I can fall asleep even when walking. I learned the signals that

tell me I won't be able to stay awake and I don't ignore them. Ever.

4. Stress makes it much, much worse. I am going through a pretty ugly sitch at

home and I realized that on bad days, I need naps no matter how much medication

I take. Good days, I can go without the nap. The drugs work just fine.

5. I listen to my body. Learn the signals. Most important piece of advice. There

is an odd feeling I get when I'm about to have an episode. I yawn a lot, but

normal sleepy yawning. This is like a yawn that comes from the pit of my soul.

My head gets foggy. I get confused. When these things happen, I have fifteen

minutes to be lying down. If I'm on the road, I pull over immediately at the

first safe spot. I don't try to ride it out or push it. And I nap. Sometimes 15

minutes will be enough. Sometimes I need two hours.

, dreams during two naps during your MSLT is positive for narcolepsy. If

you dreamed through all of your naps, it's a pretty sure bet that's what you'll

be told. Provigil has saved my life. It's expensive, but will soon be generic

and hopefully not so bad.

Do NOT tell the licensing people that you have narcolepsy. I would even be

careful telling your doctor about falling asleep while driving. Some states have

requirements for doctors to report you to the DMV and they will pull your

license. Also, if you have an accident because of a sleep disorder, your

culpability goes way up. Be very careful while driving.

________________________________

To: tetheredspinalcord

Sent: Saturday, August 6, 2011 12:31 PM

Subject: Re: (and anyone with narcolepsy)

 

I too used to fall asleep with coffee in hand at the dining room

table, fully dressed, sitting straight up. I completely understand

your frustration. I learned not to stop in the AM. Get outside and

keep moving as much as possible. I seemed to stay awake if I kept

moving so I made sure I picked out all of my clothes, etc... the night

before. Got up, showered, dressed, and grabbed coffee and a pop tart

(like food) and headed out the door. Of course, the minute I walked

back in the house I would have a headache and would fall asleep.

Weird stuff.

I was lucky in that most of my sleeping was confined to my house or

when I was a passenger in a car. I slept through almost every movie I

went to, so movies were just a waste of money. Long boring meetings,

hahaha long winded speakers, almost anyone/thing that did not engage

me would put me to sleep. I am not 100% better about that stuff even

now.

I can't wait to here the results of your tests. Again, my advice is

to NOT STOP in the morning until you get to where you have to be.

That was the only thing that worked for me.

Be safe. If you start to fall asleep while driving, its time to not

drive. I would not, however, make a big issue of it to the drivers

license people. I have been told it is nearly impossible to get it

back when you are better. Use your common sense. If it starts to

effect your driving, put your license away in a drawer until you have

this thing licked.

M.

>> Have been setting 11 alarms, and still I have had days where I did not get

up! Then once I do get up and sit on the couch in the morning I have to set

another alarm, because I know I will fall asleep, coffee in hand.

>> Just wondering why this is getting harder and harder instead of staying the

same? I used to have issues getting up, but not this severe, and not falling

asleep all over the place like I do now.

>> My results come in on the 11th, was hoping you have some AM tips for me.

>> Thank you!

>>

>>

>>

>>