Narcolepsy.. (/ or anyone w/ it)

[Guest guest]

I went to see my doctor yesterday, and as I suspected have a firm diagnosis of

narcolepsy.

In the naps my average time to sleep was 3.26 min, with one time falling asleep

in 65 sec! I had REM in 4 out of 5 naps.The sleep walking/doing is automatic

behavior, or at least that is what she suspects.

I started on Nuvigil this morning, taking 125MG for 1 week as a trial, but I can

take 250 if I need to. If the sleepiness in the afternoon does not resolve with

the Nuvigil I see her in 3 weeks (due to my vacation!) and we can add some

Ritalin for the afternoons.

I guess the Nuvigil is supposed to last 24 hours, but it usually doesn't.

Overall I'm happy to be moving in the right direction. The last 2 weeks have

really been terrible and hopefully things can just get better from here.

Any thoughts or tips.. I would love to hear them.I guess my main questions are-

 does this contribute to your TC issues? Are you still drinking some coffee etc?

 Is it typical to be experimenting with different medication?

Thank you and hope you are all having an awesome day! 

[Guest guest]

I take Provigil, 200 mg twice a day. Max dose. It depends on my stress levels

whether it's enough or not. I don't take anything extra, but I drink a ton of

coffee.  A ton of coffee. I've considered adding Ritalin to the mix, short

acting something to keep me through the late afternoon.

This hasn't bothered my TC at all.  I think experimentation with medication is

normal.

 

________________________________

To: Tetheredspinalcord <tetheredspinalcord >

Sent: Friday, August 12, 2011 3:29 PM

Subject: Narcolepsy.. (/ or anyone w/ it)

 

I went to see my doctor yesterday, and as I suspected have a firm diagnosis of

narcolepsy.

In the naps my average time to sleep was 3.26 min, with one time falling asleep

in 65 sec! I had REM in 4 out of 5 naps.The sleep walking/doing is automatic

behavior, or at least that is what she suspects.

I started on Nuvigil this morning, taking 125MG for 1 week as a trial, but I can

take 250 if I need to. If the sleepiness in the afternoon does not resolve with

the Nuvigil I see her in 3 weeks (due to my vacation!) and we can add some

Ritalin for the afternoons.

I guess the Nuvigil is supposed to last 24 hours, but it usually doesn't.

Overall I'm happy to be moving in the right direction. The last 2 weeks have

really been terrible and hopefully things can just get better from here.

Any thoughts or tips.. I would love to hear them.I guess my main questions are-

 does this contribute to your TC issues? Are you still drinking some coffee

etc?  Is it typical to be experimenting with different medication?

Thank you and hope you are all having an awesome day! 

[Guest guest]

,

I'm on day 2 and wow I went to bed like a normal person, and slept all night,

and I read a book this morning without falling asleep!

I even went to get my reception dress picked out for my wedding.. and I

cleaned!!! Hubby is amazed!

So.. this is what " normal " people feel like lol

Subject: Re: Narcolepsy.. (/ or anyone w/ it)

To: " tetheredspinalcord " <tetheredspinalcord >

Date: Friday, August 12, 2011, 3:25 PM

 

I take Provigil, 200 mg twice a day. Max dose. It depends on my stress

levels whether it's enough or not. I don't take anything extra, but I drink a

ton of coffee.  A ton of coffee. I've considered adding Ritalin to the mix,

short acting something to keep me through the late afternoon.

This hasn't bothered my TC at all.  I think experimentation with medication is

normal.

 

________________________________

To: Tetheredspinalcord <tetheredspinalcord >

Sent: Friday, August 12, 2011 3:29 PM

Subject: Narcolepsy.. (/ or anyone w/ it)

 

I went to see my doctor yesterday, and as I suspected have a firm diagnosis of

narcolepsy.

In the naps my average time to sleep was 3.26 min, with one time falling asleep

in 65 sec! I had REM in 4 out of 5 naps.The sleep walking/doing is automatic

behavior, or at least that is what she suspects.

I started on Nuvigil this morning, taking 125MG for 1 week as a trial, but I can

take 250 if I need to. If the sleepiness in the afternoon does not resolve with

the Nuvigil I see her in 3 weeks (due to my vacation!) and we can add some

Ritalin for the afternoons.

I guess the Nuvigil is supposed to last 24 hours, but it usually doesn't.

Overall I'm happy to be moving in the right direction. The last 2 weeks have

really been terrible and hopefully things can just get better from here.

Any thoughts or tips.. I would love to hear them.I guess my main questions are-

 does this contribute to your TC issues? Are you still drinking some coffee

etc?  Is it typical to be experimenting with different medication?

Thank you and hope you are all having an awesome day! 

[Guest guest]

That's fantastic, ! Narcolepsy is manageable. I use it to full advantage,

knowing I get the good drugs and could probably stay up on a three day bender if

I so chose to. Not that I would, but it's kind of nice knowing I could. And my

favorite time of day is about 30 - 40 minutes after I've taken my meds, when the

awake kicks in and I have energy again.

Don't let anyone make you feel bad about the things you can and can't do.  No

one is allowed to do that. Just because you aren't in a wheelchair, or wearing

braces, or visibly disabled does not mean there isn't something there that has

to be accommodated. That goes for everyone with any hidden disability.

Narcolepsy is very misunderstood. I had a staff member of mine ask me if he

scared me in the middle of a meeting, would I fall asleep. I laughed. It was an

honest question. I told him I'm not a fainting goat, so no. People think it's

one thing when it's another, and the most frustrating thing for me is how many

times I have to tell someone that I have it when I have to close my door for a

few minutes or I can't go out after work because that is exactly the time my

attacks usually start. Admitting weakness is a problem for me, and I sometimes

forget to take my own advice about being kind to myself.

I'm SO glad you're getting your life back! That is wonderful news!

________________________________

To: tetheredspinalcord

Sent: Saturday, August 13, 2011 4:49 PM

Subject: Re: Narcolepsy.. (/ or anyone w/ it)

 

,

I'm on day 2 and wow I went to bed like a normal person, and slept all night,

and I read a book this morning without falling asleep!

I even went to get my reception dress picked out for my wedding.. and I

cleaned!!! Hubby is amazed!

So.. this is what " normal " people feel like lol

Subject: Re: Narcolepsy.. (/ or anyone w/ it)

To: " tetheredspinalcord " <tetheredspinalcord >

Date: Friday, August 12, 2011, 3:25 PM

 

I take Provigil, 200 mg twice a day. Max dose. It depends on my stress levels

whether it's enough or not. I don't take anything extra, but I drink a ton of

coffee.  A ton of coffee. I've considered adding Ritalin to the mix, short

acting something to keep me through the late afternoon.

This hasn't bothered my TC at all.  I think experimentation with medication is

normal.

 

________________________________

To: Tetheredspinalcord <tetheredspinalcord >

Sent: Friday, August 12, 2011 3:29 PM

Subject: Narcolepsy.. (/ or anyone w/ it)

 

I went to see my doctor yesterday, and as I suspected have a firm diagnosis of

narcolepsy.

In the naps my average time to sleep was 3.26 min, with one time falling asleep

in 65 sec! I had REM in 4 out of 5 naps.The sleep walking/doing is automatic

behavior, or at least that is what she suspects.

I started on Nuvigil this morning, taking 125MG for 1 week as a trial, but I can

take 250 if I need to. If the sleepiness in the afternoon does not resolve with

the Nuvigil I see her in 3 weeks (due to my vacation!) and we can add some

Ritalin for the afternoons.

I guess the Nuvigil is supposed to last 24 hours, but it usually doesn't.

Overall I'm happy to be moving in the right direction. The last 2 weeks have

really been terrible and hopefully things can just get better from here.

Any thoughts or tips.. I would love to hear them.I guess my main questions are-

 does this contribute to your TC issues? Are you still drinking some coffee

etc?  Is it typical to be experimenting with different medication?

Thank you and hope you are all having an awesome day! 

[Guest guest]

, and other great sleepers

I take Provigil, gallons of cola, tea, etc... and avoid these things

after 3 pm or I then have different sleep problems --- waking all

night, sleeping late into the morning. I take Ambien at night if the

Provigil and other measures keep me awake or I begin to sleep walk.

Again, I had to lower my 9 year dose of Topamax which has almost

completely stopped the sleep 'ramblin' LOL. So, yes, it will take

some adjusting and mixing to get things perfect.

As far as TC issues, it sure doesn't help. I could be doing really

well; regular therapy improving things -- then sleep hell will leave

me wobbly, weak and all off track. I do so much better with a good

schedule of rest along with exercise. Nothing blows it all away

quicker than sleeping off and on all day for a couple days and missing

my swimming/water walking classes. Chores get away from me then and

things feel so overwhelming. Then depression starts to creep in and

it becomes even harder to get moving.

I recently was told I have not only retethered but have become

tethered at a second location. I haven't had a chance to find out

what or even where the second location is. I just couldn't believe

it. My youngest kids are on their way to college and I have decided

not to tell them since they are having a hard enough time dealing with

leaving home for the first time. But, it has been extremely stressful

for me, making the sleep thing hard to manage.

M.

> I went to see my doctor yesterday, and as I suspected have a firm diagnosis of

narcolepsy.

> In the naps my average time to sleep was 3.26 min, with one time falling

asleep in 65 sec! I had REM in 4 out of 5 naps.The sleep walking/doing is

automatic behavior, or at least that is what she suspects.

> I started on Nuvigil this morning, taking 125MG for 1 week as a trial, but I

can take 250 if I need to. If the sleepiness in the afternoon does not resolve

with the Nuvigil I see her in 3 weeks (due to my vacation!) and we can add some

Ritalin for the afternoons.

> I guess the Nuvigil is supposed to last 24 hours, but it usually doesn't.

> Overall I'm happy to be moving in the right direction. The last 2 weeks have

really been terrible and hopefully things can just get better from here.

> Any thoughts or tips.. I would love to hear them.I guess my main questions

are-  does this contribute to your TC issues? Are you still drinking some coffee

etc?  Is it typical to be experimenting with different medication?

> Thank you and hope you are all having an awesome day!

>

>

>

[Guest guest]

Ugh.. I am sorry about the second tether. I know that must be driving you

bananas. Did they give you any options? I am a bit worried that eventually I

will retether also. I think someone mentioned that they did after pregnancy, so

I am a bit freaked out! Dr. Frim told me I have a 10% chance.. but who knows?

The stress does not help sleep, I know that for sure. 

I noticed I had trouble falling asleep last night, but I took the med very late

(11am) so maybe that was it. I also have insomnia and the sleep walking, so I

don't really want to aggravate that.

I have central sensitization, which is kind of like Fibro.. and when I would

sleep for a long period of time I would wake up feeling like I was 100! I was

applying pressure to all those area's for so many hours. I hope that gets better

for me too. 

> I went to see my doctor yesterday, and as I suspected have a firm diagnosis of

narcolepsy.

> In the naps my average time to sleep was 3.26 min, with one time falling

asleep in 65 sec! I had REM in 4 out of 5 naps.The sleep walking/doing is

automatic behavior, or at least that is what she suspects.

> I started on Nuvigil this morning, taking 125MG for 1 week as a trial, but I

can take 250 if I need to. If the sleepiness in the afternoon does not resolve

with the Nuvigil I see her in 3 weeks (due to my vacation!) and we can add some

Ritalin for the afternoons.

> I guess the Nuvigil is supposed to last 24 hours, but it usually doesn't.

> Overall I'm happy to be moving in the right direction. The last 2 weeks have

really been terrible and hopefully things can just get better from here.

> Any thoughts or tips.. I would love to hear them.I guess my main questions

are-  does this contribute to your TC issues? Are you still drinking some

coffee etc?  Is it typical to be experimenting with different medication?

> Thank you and hope you are all having an awesome day!

>

>

>