PROVIGIL

[Guest guest]

Hi all,

Has anyone tried Provigil/Modafinil for their severe fatigue... ? Any

testimonials would be helpful. I've read the responses on

askapatient.com and researched it online. I'm not looking for too much

web info. I know that taking this drug as a person with CFS is very

different than taking it for a Sleep Disorder.

Thanks so much,

~ R ~

[Guest guest]

Hi ,

I took Provigil, for several months, and unfortunately, did not find it

effective. My CFS doctor has had success with other patients on it though. You

have to start out slow, and increase the dosage. I found my dizziness increased

and (coincidentally) my speech was highly effected. I did find that even after

stopping the Provigil, my speech was still effected (on occasions I still have a

hard jerking of the jaw, and I am unable to form audible words) that is why I

say coincidentally.

I don't know that this helps, but wanted to give you my 2 cents worth anyway.

Good Luck,

STL Jane

wrote:

Hi all,

Has anyone tried Provigil/Modafinil for their severe fatigue... ? Any

testimonials would be helpful. I've read the responses on

askapatient.com and researched it online. I'm not looking for too much

web info. I know that taking this drug as a person with CFS is very

different than taking it for a Sleep Disorder.

Thanks so much,

~ R ~

[Guest guest]

PROVIGIL

Hi ,

I am usually just a lurker, but when you mentioned Provigil I thought I must

speak up. I am a pwc for fifteen years. About seven years ago the doctor

thought we should try the drug. Yes, I was clear for a while. Yes, I had more

energy, but like speed it takes more and more to get the same effect. You

cannot stay on the drug forever and the crash when coming off of it was

horrible. It took weeks to get back to my normal " crappy " .

Please be careful.

Doreen

[Guest guest]

I have been diagnosed with FM and I'm pretty sure I have CFS also. My

rheumatologist gave me several sample scripts to try different meds for

fatigue and had me pick which one worked best for me. I took notes and

noticed when I was using Provigil, I was very productive, but it made me

feel jittery - like a drank too much coffee. I didn't take it every day -

only when I needed to get a lot done. As is the case any time we over do

it, I would crash as soon as the meds wore off. It was effective and the

side affects, for me, were mild enough to tolerate them.

My first choice of the 4 meds he had me try was Tennuate. It is considered

a diet pill, so insurance wont cover it. I still use it, but very sparingly

because it is expensive.

Shari

[Guest guest]

Hi R:

I have tried the Provigil. It made me feel jittery, but I am

sensitive to caffeine, etc...I have seen some have good luck with it,

but I would not use it everyday, as I believe it is making your body

work harder the day you take it. The next day you may need extra

rest, just have to see how you react.

Thanks, Jeanatte

>

>

> Hi all,

>

> Has anyone tried Provigil/Modafinil for their severe fatigue... ?

Any

> testimonials would be helpful. I've read the responses on

> askapatient.com and researched it online. I'm not looking for too

much

> web info. I know that taking this drug as a person with CFS is

very

> different than taking it for a Sleep Disorder.

>

> Thanks so much,

> ~ R ~

>

[Guest guest]

Jane, can you please tell me what your dizziness is from? I have been suffering

from chronic nausea and lightheadedness for months now and cant figure out why,

it has been terrible and i cant imagine living my whole life wiht this along

with my auto immune disease. thanks.

[Guest guest]

I have a script for Provigil and find that daily use does me no good at all but

if I just take it on days I have a lot to do or need to be really up all day, no

naps etc, it does help!

Re:PROVIGIL

I have been diagnosed with FM and I'm pretty sure I have CFS also. My

rheumatologist gave me several sample scripts to try different meds for

fatigue and had me pick which one worked best for me. I took notes and

noticed when I was using Provigil, I was very productive, but it made me

feel jittery - like a drank too much coffee.

[Guest guest]

I saved this article to give to my doctor to discuss adding the Provigil

to the Strattera and dexidrine I already take.

Lapp, M.D., on the Effective Treatment of Chronic Fatigue

Syndrome and Fibromyalgia "

Lapp, M.D., is nationally recognized and sought after as a

medical consultant regarding CFS and FM. He is Co-Chairman of the

Clinical Affairs Committee for the American Association for CFS, medical

advisor to the CFIDS Association of America, and a board member of the

American FM Syndrome Association. Dr. Lapp is currently Director of the

Hunter-Hopkins Center, P.A., Medical Consultations, in Charlotte, North

Carolina, where he is a practicing physician, and is also Assistant

Consulting Professor at Duke University Medical Center in Durham, North

Carolina

" Low energy (combating fatigue): Start with high dose (injectible) B12

and NADH. Next step, consider Wellbutrin (a dopamine agonist) or a

non-sedating Selective Serotonin Reuptake Inhibitor (SSRI, like Prozac,

Zoloft, Celexa, Effexor). But the best therapy is to use low doses of

CNS stimulants like methylphenidate (Ritalin), dexamphetamine (Dexedrine

or Adderall), and modafinil (Provigil). The latter has an excellent

safety profile, minimal effect on the cardiovascular system, and little

abuse or habituation potential. Provigil not only improves fatigue

(alertness), but also somnolence, mental clarity, attention deficits,

and depression. "

[Guest guest]

hi, i have fibro and have alot of fatigue i also have sleep apnea central my dr

was giving me adderall and out of the blue stopped and gave me provigil 200 1-2

a day wel it helps slightly and is expensive i have ask for the adderall back

and they refused now they are trying to take my pain meds away. i am very

frustrated by this. any suggestions? thanks, lanay

veryniceblonde wrote: I saved this article to

give to my doctor to discuss adding the Provigil

to the Strattera and dexidrine I already take.

Lapp, M.D., on the Effective Treatment of Chronic Fatigue

Syndrome and Fibromyalgia "

[Guest guest]

hi, i have fibro and have alot of fatigue i also have sleep apnea central my dr

was giving me adderall and out of the blue stopped and gave me provigil 200 1-2

a day wel it helps slightly and is expensive i have ask for the adderall back

and they refused now they are trying to take my pain meds away. i am very

frustrated by this. any suggestions? thanks, lanay

veryniceblonde wrote: I saved this article to

give to my doctor to discuss adding the Provigil

to the Strattera and dexidrine I already take.

Lapp, M.D., on the Effective Treatment of Chronic Fatigue

Syndrome and Fibromyalgia "

[Guest guest]

I took Provigil for a month or two last fall. It was prescribed to

help with my brain fog. The cost was ~$300/month, but my insurance

company would not approve it, which meant they would not reimburse me

for it.

I didn't notice much (if any) improvement. I've stopped taking

Provigil. The cost/benefit aspect just didn't justify me continuing to

take it.

Of course, everybody's body is different, so your mileage may vary.

Marcia on

[Guest guest]

My doctor just gave me provigil today. I don't know if I'll be able to keep

on taking it after the free trial. It's just so expensive and my insurance

is really crappy. But he really feels it will help my fatigue. He's

wanting to do the tests so that he can officially diagnose me with the

Chronic Fatigue he feels I have along with the fibro but I just can't afford

it right now.

Bel

-- Re: Provigil

r u taking lyrica? i already posted something about it. I was a total spasz

and looked horrible esp under stress. Drs said it wasn't form any of my meds

either. Consider what youhave been adding that is new to you since youhave

started shaking? or if yu increased or decreased a med?

[Guest guest]

hi i also have fibro and have wondered if i have cfs of course when i ask the dr

they blow it off i often wonder if i have other related problems that can go

along with fibro as far as the knots all over my body i no you do with fibro but

others have sent me things on myofacia which i have the symptoms of as well

because my pain never goes away and gets worse quite often even in the warmer

weather.but i have found when you talk about fibro they tend to close there ears

and dont wanna persue it. i also have sleep apnea (central) they was giving me

adderal for my tiredness they took that away gave me the provigil 200mg 2 a day

i could stand to take 3 but havent ask. do you no of anyone taking more? thanks,

lanay

Bel wrote: My doctor just gave me provigil today. I

don't know if I'll be able to keep

on taking it after the free trial. It's just so expensive and my insurance

is really crappy. But he really feels it will help my fatigue. He's

wanting to do the tests so that he can officially diagnose me with the

Chronic Fatigue he feels I have along with the fibro but I just can't afford

it right now.

Bel

[Guest guest]

hey i am new here i've only wrote a few times, but i have sleep apnea too,i

just got my cpap machine and i hate it! i am also very tired all the time, i

always feel like i have weights on my arms and legs. i also have the shakes

too! and i thought it was just a result of being tired. but i am a dental

assistant and when i get the shakes it is very hard to do my job, no one

likes to get poked! lol. i have cut back work, i am only working 3 & 1/2 days

a week, but i still feel like i need more rest. even typing takes alot out

of a person. any way i kinda go off like that i lose my train of thought

constantly. my best to you all!

amy

>

> Hi Pam!!! I have FMS and also Narcolepsy, Sleep Apnea & others wonderful

> things lol.

>

> I have been taking Provigil for 6 yrs now. I take 2-200mg tablets a day.

> Without it I would be asleep right now at my desk. I can tell a big change

> when I miss it. I take about 10 different RX's a day so I probably could

> blame 1/2 of what is wrong with me on side-effects.

> The one thing I've noticed lately though is that I'm shaking alot.

[Guest guest]

sometimes, i can tell the difference and sometimes not. OF course it depends on

what I am doing and what I am doing physically. If I have to stay awake driving,

yes it helps. but otherwise, i find, i DO LESS . I went fishing today , and am

more motivated when I do takeit. thinka bout it. do youget more done?

Marcia wrote: I took Provigil for a month or two

last fall. It was prescribed to

help with my brain fog. The cost was ~$300/month, but my insurance

company would not approve it, which meant they would not reimburse me

for it.

I didn't notice much (if any) improvement. I've stopped taking

Provigil. The cost/benefit aspect just didn't justify me continuing to

take it.

Of course, everybody's body is different, so your mileage may vary.

[Guest guest]

i know I could fel the muscles tightening before a jerk. can you? i would say at

the doctors office, no , no here comes a big one. they would look at me like I

was crazy and my head would completely be pulled to the side and tilted and be

there til the spasm stoppped. Looked at me like a deer caught in a cars

headlights. Literally, like ( in their heads thinking, OMG! WHat have I gotten

myself into now? I have to stay calm!) They do not much to say the least. like

now I just threw the right arm to the saide and knocked over the pill bottle.

NOW look whatyou made me DO! hehe

vickie englebright wrote: I have had what

I call tremors for years... I find they get worse if I am tired. I also have

what I call fits.... when my muscles jerk all of a sudden for no reason. I have

thrown a cup of coffee on my son before... he didn't appreciate that LOL At

least once a day I am picking up stuff from the floor that I have knocked off my

computer table because my arm has went flying by itsself LOL

Vickie

Connie wrote:

Hi Pam!!! I have FMS and also Narcolepsy, Sleep Apnea & others wonderful things

lol.

I have been taking Provigil for 6 yrs now. I take 2-200mg tablets a day. Without

it I would be asleep right now at my desk. I can tell a big change when I miss

it.

[Guest guest]

hi connie, thanks so much for replying i appreciate it. i took lyrica and it was

of no help also i have heard it makes you gain weight. i habe taken the

ultram...no help the nerontin...no help i did try a muscle relaxer that helped a

little along with the methadone it was skelaxin i found that helped with my neck

pain a bit. i cant remember all the ones they had me try first before the

narcotics. injections and therepy. like i said they wanna take it all away and

give us the meds for nerve pain well it may help some but its not for everyone.

what makes me the madest is they no i made a honest effort with the other meds

and therepies first before asking for the other actually i took vicodin first

told them it wasnt enough they suggested the methadone and also said and if that

dont work we can try the oxycotin hell if i mentioned that now they would flip

out like i was a crack head!.lol and it was there idea to start with.lol gonna

go crazy soon.lol well i hope all is well

and i would love to keep in touch. lanay

Connie wrote: Lanay that is terrible. My dr

took my pain meds away (Lortab) and put me on flexeral (sp)... I bugged him so

much that he gave it back.... the other meds weren't working. I do take the

flexeral in the am since it's more of a muscle relaxant.. the Soma would put me

under lol

I can't believe what they charge for meds.

[Guest guest]

My dr sent me to that " specialist " in FMS... They just wanted me on what they

wanted me on .. and he wanted me to start PT.. walking etc... hell, i can't

walk much... walking from the car to my office wears me out... I've gained

weight but on the one sheet i saw about FMS, it said weight gain. I had the

gastric bypass 6 yrs ago and i've gained 40lbs back.. makes me so upset... This

shaking i'm having is driving me nuts... my dr said it could be from the

narcolepsy... go figure...

Connie

lanay skeels wrote:

hi connie, thanks so much for replying i appreciate it. i took lyrica

and it was of no help also i have heard it makes you gain weight. i habe taken

the ultram...no help the nerontin...no help i did try a muscle relaxer that

helped a little along with the methadone it was skelaxin i found that helped

with my neck pain a bit. i cant remember all the ones they had me try first

before the narcotics. injections and therepy. like i said they wanna take it all

away and give us the meds for nerve pain well it may help some but its not for

everyone.

[Guest guest]

We were on our motorcycle and my left leg jerked.. he yelled back at me... " are

you trying to kill us " ? i feel like duct taping myself to my chair. lol.... i

throw food all the time.. and when my hands are bad, i type extra letters and

deleted something i was working on at work .. sheesh. it's nice to know that

there are others that do this... in my family my sister has femilia tremors.. i

think my mom and i have it too... people look at me like i'm nuts... hehe..

almost hit some old lady with my cane... my knee is bad and my right arm went

kaflooey.. lol. it's like body turetts.

" Acrol F. " wrote: i know I could fel the muscles

tightening before a jerk. can you? i would say at the doctors office, no , no

here comes a big one. they would look at me like I was crazy and my head would

completely be pulled to the side and tilted and be there til the spasm stoppped.

Looked at me like a deer caught in a cars headlights. Literally, like ( in their

heads thinking, OMG! WHat have I gotten myself into now? I have to stay calm!)

They do not much to say the least. like now I just threw the right arm to the

saide and knocked over the pill bottle. NOW look whatyou made me DO! hehe

vickie

[Guest guest]

OMG Connie! lmao! I am dieing here from your post...your so funny!

I know it's the truth and love this board for this reason. We can

share all the stupid things related to this illness and laugh at each

other. By the posts lately, I have a pic in my head now of you

almost killing yourself trying to ride on a motorcycle, another one

throwing food...me whipping lit smokes across the room! Makes you go

crazy! I play a game on the net and the jerks get so bad that I can't

even play because it makes me right click at random and that can get

me killed in there! The things we put up with ....honestly! It

makes me wonder...what's next?

About scripts, My husband pays for his insurance in part at work and

we had deductible on scripts for 2600.00. In Feb, I will meet that

deductible as my scripts are in excess of 1300.00 a month! I had to

charge it..what else can one do? I'm disabled, hubby doesn't make

that much and yet we make too much they say for any help. (just above

poverty~!) I am on lunesta too and hate how it seems I do more at

night without knowing half of it and it's driving me crazy.

Anyway, it's great to hear others with their stories. If you gotta

live with it, may as well laugh at what you can!

God Bless!

> We were on our motorcycle and my left leg jerked.. he yelled back

at me... " are you trying to kill us " ? i feel like duct taping myself

to my chair. lol.... i throw food all the time.. and when my hands

are bad, i type extra letters and deleted something i was working on

at work .. sheesh. it's nice to know that there are others that do

this... in my family my sister has femilia tremors.. i think my mom

and i have it too... people look at me like i'm nuts... hehe.. almost

hit some old lady with my cane... my knee is bad and my right arm

went kaflooey.. lol. it's like body turetts.

[Guest guest]

Hi All Provigil is a very expensive med as most of you know and is commonly used

for MS patients however you can derive the same effect by using a medication for

ADHD such as Ritalin or Concerta these medications are cheaper because they have

been around longer and doctors are more willing to prescribe them. One this to

remember is that CFS and FM patients often have attention dificulties due to the

fatigue. This is called Fibro-Fog. I take the ritalin and find it very

helpful. When my energy level is higher my pain is more tolerable. Good luck.

KAthy

Re:PROVIGIL

hi connie, thanks so much for replying i appreciate it. i took lyrica and it was

of no help also i have heard it makes you gain weight. i habe taken the

ultram...no help the nerontin...no help i did try a muscle relaxer that helped a

little along with the methadone it was skelaxin i found that helped with my neck

pain a bit. i cant remember all the ones they had me try first before the

narcotics.

[Guest guest]

I take Provigil every day for fibromyalgia. I used to fall asleep at my

desk in the afternoon. I have no problem taking it and it keeps me

awake. I have to be very careful, however, to take it right away in the

morning. If not, it keeps me up at night. I find no side effects from

the medication and it has really helped. Hope this helps! Barbara

>

>

> Hi all,

>

> Has anyone tried Provigil/Modafinil for their severe fatigue... ?

Any

> testimonials would be helpful. I've read the responses on

> askapatient.com and researched it online. I'm not looking for too

much

> web info. I know that taking this drug as a person with CFS is very

> different than taking it for a Sleep Disorder.

>

> Thanks so much,

> ~ R ~

>