Re: Loretta - Provigil...for marti

[Guest guest]

hi marti,

i tried provigil after 2 overnight and 1 nap test found no apnea,no

narcolepsy, but just idiopathic cns hypersomnolence, and the provigil

made me extremely nauseated, so i quit it.

did you have any kind of side effects that you remember when you

started taking it? how long have you been on it so far?

thanks,

marg

>

> Hi, Like I said before, sorry to repeat myself, I take Provigil

because of Narcolepsy caused by Sleep Apnea. I take 400mg a day in two

doses of 200 mg. It took that much to keep me awake.

> Good luck to you with it,

> Marti

[Guest guest]

Hi Marg,

I have been taking Provigil for several years. I know I had some kind of side

effect when I first started taking it, but it went away - duh. Cause I can't

remember what it was.

I do know that my usual side effects of most drugs are being agitated and

antsy inside, shaky on the outside, with my heart pounding. That was probably

it. I don't usually get nauseus with drugs unless I don't take them with food.

I take Prednisoone for Sarcoidosis and that makes me nauseus without food so I

just take all my meds when I take it, in the morning. Except of course for the

ones I take to sleep. double duh.

I 'm sorry you are having such trouble with it. It has been a real life saver

for me. I wish you could benefit from it too. Maybe the nauseusness will go

away after a little while, or if you take it with food, unless you've already

tried that.

If you don't mind my asking, could you tell me what idiopathic cns

hypersomnolence is and if there is anything that can be done to help it, like

there is for sleep apnea. So far there isn't a CPAP mask that fits me so I have

it untreated, which scares me. I'm looking for an alternative now.

Take care,

Marti

idisnotok wrote:

hi marti,

i tried provigil after 2 overnight and 1 nap test found no apnea,no

narcolepsy, but just idiopathic cns hypersomnolence, and the provigil

made me extremely nauseated, so i quit it.

did you have any kind of side effects that you remember when you

started taking it? how long have you been on it so far?

thanks,

marg

>

> Hi, Like I said before, sorry to repeat myself, I take Provigil

because of Narcolepsy caused by Sleep Apnea. I take 400mg a day in two

doses of 200 mg. It took that much to keep me awake.

> Good luck to you with it,

> Marti

---------------------------------

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[Guest guest]

hi marti,

sorry, i only have a pc at work, not at home. but thanks for all the

info on your side effects. wow, sereval years on provigil, that is

great that it still works for you. i had to go back to

ritalin/concerta, which does stop working, i read, our brains stop

making the receptors for the drug after we take it orally for a

while...i guess that is how we need more to get the same benefit, not

sure.

i take all my meds with food, have to, too, except thyroids and supps

like dhea. so many meds make me nauseated or put me to sleep as a

side effect.

yes, i agree, untreated sleep apnea is scarey due to what the lack of

oxygen does to organs over time. idiopathic central nervous system

hypersomnolence just means " tired alot " , excessive daytime tiredness

which has no diagnosable cause, like apnea or narcolepsy. i think the

idiopathic just means of unknown cause. the only thing for it are the

stimulant meds or meds like provigil, nothing else. one cause could

also just be low dopamine levels, genetic or as we age, like

everything else, but i have complained of bad fatigue since the age

of like 11 years old.

so i guess i continue to be between a rock and hard place. i may try

provigil again soon.

take care,

marg

>

> Hi Marg,

> I have been taking Provigil for several years. I know I had some

kind of side effect when I first started taking it, but it went away -

duh. Cause I can't remember what it was.

> I do know that my usual side effects of most drugs are being

agitated and antsy inside, shaky on the outside, with my heart

pounding. That was probably it. I don't usually get nauseus with

drugs unless I don't take them with food. I take Prednisoone for

Sarcoidosis and that makes me nauseus without food so I just take all

my meds when I take it, in the morning. Except of course for the

ones I take to sleep. double duh.

[Guest guest]

hi marti,

sorry, i can't tell if my first reply was posted. and sorry, i only

have a pc at work, not at home, or i would have replied sooner.

several years on provigil, that is great it continues to help you

after that long. i can't remember if i took it with food or first

thing when i got up on an empty stomach, probably first thing, thanks

for mentioning about taking it with food. i have to take most other

meds with food, i probably didn't want to wait to feel like i was

waking up, so i took it right away. i may try it again, tho, with

food.

i currently take concerta (long acting ritalin, a stimulant) but

stimulants quit working after a time. i read we stop making the

receptors in our brain when we take it orally, which is probably why

we end up needing more to get the same response.

idiopathic (of unknown cause) central nervous system hypersomnolence

is just the diagnosis left over when the sleep/nap tests do not find

apnea or narcolepsy. gee thanks, huh? and stimulants or provigil are

the only options. i am sorry they can't find a mask to fit you,

untreated apnea is scarey due to not getting enuf oxygen to organs

over the long term...i think i read it is a real concern especially

for the heart.

i kindof wished the sleep tests would find i had apnea and i could

put a mask on at night and start feeling better, but no such luck for

me, ever!

sorry to hear of your sarcoidosis, it does not sound kind.

take care,

marg

>

> Hi Marg,

> I have been taking Provigil for several years. I know I had some

kind of side effect when I first started taking it, but it went away -

duh. Cause I can't remember what it was.

> If you don't mind my asking, could you tell me what idiopathic

cns hypersomnolence is and if there is anything that can be done to

help it, like there is for sleep apnea. So far there isn't a CPAP

mask that fits me so I have it untreated, which scares me. I'm

looking for an alternative now.

> Take care,

> Marti

[Guest guest]

Thanks Marg,

Marti

idisnotok wrote:

hi marti,

sorry, i can't tell if my first reply was posted. and sorry, i only

have a pc at work, not at home, or i would have replied sooner.

several years on provigil, that is great it continues to help you

after that long. i can't remember if i took it with food or first

thing when i got up on an empty stomach, probably first thing, thanks

for mentioning about taking it with food. i have to take most other

meds with food, i probably didn't want to wait to feel like i was

waking up, so i took it right away. i may try it again, tho, with

food.

i currently take concerta (long acting ritalin, a stimulant) but

stimulants quit working after a time. i read we stop making the

receptors in our brain when we take it orally, which is probably why

we end up needing more to get the same response.

idiopathic (of unknown cause) central nervous system hypersomnolence

is just the diagnosis left over when the sleep/nap tests do not find

apnea or narcolepsy. gee thanks, huh? and stimulants or provigil are

the only options. i am sorry they can't find a mask to fit you,

untreated apnea is scarey due to not getting enuf oxygen to organs

over the long term...i think i read it is a real concern especially

for the heart.

i kindof wished the sleep tests would find i had apnea and i could

put a mask on at night and start feeling better, but no such luck for

me, ever!

sorry to hear of your sarcoidosis, it does not sound kind.

take care,

marg

>

> Hi Marg,

> I have been taking Provigil for several years. I know I had some

kind of side effect when I first started taking it, but it went away -

duh. Cause I can't remember what it was.

> If you don't mind my asking, could you tell me what idiopathic

cns hypersomnolence is and if there is anything that can be done to

help it, like there is for sleep apnea. So far there isn't a CPAP

mask that fits me so I have it untreated, which scares me. I'm

looking for an alternative now.

> Take care,

> Marti

---------------------------------

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[Guest guest]

Hi Marg,

I take Ritalin too for AADD. It doesn't keep me awake or make me hyper, it

just helps me focus. At least it does when I'm not in a fibro fog, then nothing

helps.

The Provigil does still keep me awake and I have to be careful to not take it

very late in the day or it will keep me up at night, no matter how tired I am.

Thanks for all the explanations.

Marti

idisnotok wrote:

hi marti,

sorry, i only have a pc at work, not at home. but thanks for all the

info on your side effects. wow, sereval years on provigil, that is

great that it still works for you. i had to go back to

ritalin/concerta, which does stop working, i read, our brains stop

making the receptors for the drug after we take it orally for a

while...i guess that is how we need more to get the same benefit, not

sure.

i take all my meds with food, have to, too, except thyroids and supps

like dhea. so many meds make me nauseated or put me to sleep as a

side effect.

yes, i agree, untreated sleep apnea is scarey due to what the lack of

oxygen does to organs over time. idiopathic central nervous system

hypersomnolence just means " tired alot " , excessive daytime tiredness

which has no diagnosable cause, like apnea or narcolepsy. i think the

idiopathic just means of unknown cause. the only thing for it are the

stimulant meds or meds like provigil, nothing else. one cause could

also just be low dopamine levels, genetic or as we age, like

everything else, but i have complained of bad fatigue since the age

of like 11 years old.

so i guess i continue to be between a rock and hard place. i may try

provigil again soon.

take care,

marg

>

> Hi Marg,

> I have been taking Provigil for several years. I know I had some

kind of side effect when I first started taking it, but it went away -

duh. Cause I can't remember what it was.

> I do know that my usual side effects of most drugs are being

agitated and antsy inside, shaky on the outside, with my heart

pounding. That was probably it. I don't usually get nauseus with

drugs unless I don't take them with food. I take Prednisoone for

Sarcoidosis and that makes me nauseus without food so I just take all

my meds when I take it, in the morning. Except of course for the

ones I take to sleep. double duh.

---------------------------------

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[Guest guest]

hi marti,

i was wondering,too, nothing seems to help when i have the brain fog,

nothing! hmmm, thanks for mentioning that, too.

take care,

marg

>

> Hi Marg,

> I take Ritalin too for AADD. It doesn't keep me awake or make me

hyper, it just helps me focus. At least it does when I'm not in a

fibro fog, then nothing helps.

> The Provigil does still keep me awake and I have to be careful to

not take it very late in the day or it will keep me up at night, no

matter how tired I am.

> Thanks for all the explanations.

> Marti