Provigil

[Guest guest]

Hi phil: I took it but I went psycho on it. I mean I was throwing furniture

out my window onto the front lawn. My husband came home and mentioned it to

me... and I said to him " yeah, I threw it and whats it to ya " hahahahah.

Terrible. It was like sticking my finger into a light socket. It was rough.

Anyway, Ritalin jacked me into hysteria too so I am on a low dose of

dexedrine which works well for my narcolepsy and my fibro fatigue. xo Shell

[Guest guest]

In a message dated 10/15/99 11:59:38 PM, nebneb@... writes:

<<Has anyone used the med PROVIGIL? I haven't, but there was some talk about

it on one of the other newsgroups. It is suppose to help with energy and

brain fog. Any idea out there?

>>

Hi Robynn

It is used for narcolepsy, and is now being used for attention deficit

disorder.

It functions differently from the stimulant medications, yet has been found

to help those with ADD. I heard about it this summer at conference.

Here is a web site with information on Provigil: http://www.provigil.com/

Hope that helps!

Jane

[Guest guest]

Jane,

I know I sound like I get a kick back from this product, but NADH is a

wonder Co-Enzyme 1 (anti-oxidant) for energy especially for the brain. Have

you tried it yet. I didn't notice a difference for about a month, but

couldn't even form a full thought or sentence without it. I'll attach some

basic info on it.

Its been proven to help chronic Fatigue sufferers, and we all basically fall

into that category since most of us have not only Lyme, but due to the lower

immune system, we have several other viruses and co-infections, which they

are beginning to understand is what causes Chronic Fatigue Syndrome (a bunch

of stuff) not just one factor anymore. Good luck

Vicki

Re: [ ] PROVIGIL

>From: JVSPL@...

>

>

>In a message dated 10/15/99 11:59:38 PM, nebneb@... writes:

>

><<Has anyone used the med PROVIGIL? I haven't, but there was some talk

about

>it on one of the other newsgroups. It is suppose to help with energy and

>brain fog. Any idea out there?

>

>>>

>

>Hi Robynn

>It is used for narcolepsy, and is now being used for attention deficit

>disorder.

>It functions differently from the stimulant medications, yet has been found

>to help those with ADD. I heard about it this summer at conference.

>Here is a web site with information on Provigil: http://www.provigil.com/

>Hope that helps!

>Jane

>

[Guest guest]

Hi Al: I used it briefly when it first became available. I found it

reduced fatigue but discontinued it's use after reading the manufacturers

instructions which indicated it could be harmful to people with heart valve

problems (I developed mitral valve prolapse and trace mitral regurgitation

as a result of CFS). Steve Bullock

Provigil

>

> Hi all,

> Is anyone using using Provigil for CFS ? If so, is it helping with

CFS symptoms? This is the prescription drug that has been in the news today

and in the past for treating the fatigue in MS and for Narcolepsy.

> Al

>

>

>

[Guest guest]

on 9/08/00 12:02 AM, Al Melillo at melillo3@... wrote:

> Hi all,

> Is anyone using using Provigil for CFS ? If so, is it helping with CFS

> symptoms? This is the prescription drug that has been in the news today and

> in the past for treating the fatigue in MS and for Narcolepsy.

Al,

Yes I've tried Provigil (modafinil) before, since I also have narcolepsy

(plus ME). To be honest, although it helped to increase alertness or

'vigilance' (it's considered a 'vigilance enhancing substance', lacking CNS

stimulant-type effects such as increased motor activity), it generally made

me feel terrible!

It provoked headaches frequently, induced a constant sensation of

restlessness and anxiety, made me feel dysphoric and didn't help my low

blood pressure/orthostaic intolerance.

There is good reason to think that modafinil (Provigil) is not a good drug

for PWC: aside from its being an 'alpha 1 adrenergic agonist', it's also a

glutamate agonist--or put another way, it's an NMDA agonist (i.e., a

'ketamine antagonist'). The foregoing would suggest that modafinil is

particularly poorly suited to PWC because we apparently have upregulated

NMDA receptor activity/decreased GABA activity. Modafinil just adds fuel to

the overfiring NMDA receptors, possible inducing excitotoxicity.

Also, from my contact with dozens of narcoleptics via another listserv,

modafinil provokes intolerable side effects in a large percentage of those

who try it (mainly bad headaches, migraines, nervousness, anxiety,

panic)--which is totally inconsistent with the information trumpetted by the

manufacturer based on clinical trials...

Thumbs down... But it may prove helpful to others--i'll admit that

possibility!

Hud

[Guest guest]

I tried Provigil at both 1/2 and a full tablet and it gave me the worst

headache of my life. One of my doctors gave me samples as my HMO will not

approve it for CFS. Since it didn't help I don't really care.It did nothing

for any of my problems.

Phil

Re: Provigil

>

> on 9/08/00 12:02 AM, Al Melillo at melillo3@... wrote:

>

> > Hi all,

> > Is anyone using using Provigil for CFS ? If so, is it helping with CFS

> > symptoms? This is the prescription drug that has been in the news today

and

> > in the past for treating the fatigue in MS and for Narcolepsy.

>

[Guest guest]

Jackie,

I used it a couple years ago for about a month. I believe it's a new type

of stimulant that acts on the brain in a different manner than the older

stimulants. It reduced my constitutional fatigue modestly but I

discontinued use because it is contraindicated in persons with mitral valve

prolapse.

Steve B.

Provigil

> Has anyone used this drug? I forget the generic name--starts with an

> " M " .

>

> Jackie

>

>

>

>

> This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

>

[Guest guest]

From: Jackie Naiditch [mailto:french10@...]

Has anyone used this drug? I forget the generic name--starts with an

" M " .

[Patti] Provigil=Modafinil Is now controlled substance in the US so you

cannot import it from another country. My doc wrote a script thinking it

would give me energy. It did not. I took a small amount and got extremely

jittery and hyper and felt like I was looking through a fish-eye lens. I

meant to experiment with smaller amounts, but other testing took precedence

for me. It increases wakefulness by increasing norepinepherine (one of the

big 3 neurotransmitters).

[Guest guest]

> Does anyone know if Provigil is a drug that can be stopped

abruptly?

> I have been taking 100mg daily for a month, then I reduced to 50mg

> for last 4 days. I now want to stop completely.

>

> Thanks for any guidance that anyone can provide.

Ask your doctor! I think the theraputic dosage is 200 mg, so you

were taking a reduced dose and then lessened it more, so perhaps that

may lessen any effects of withdrawal symptoms.

[Guest guest]

> > Does anyone know if Provigil is a drug that can be stopped

> abruptly?

> > I have been taking 100mg daily for a month, then I reduced to

50mg

> > for last 4 days. I now want to stop completely.

> >

> > Thanks for any guidance that anyone can provide.

>

> Ask your doctor! I think the theraputic dosage is 200 mg, so you

> were taking a reduced dose and then lessened it more, so perhaps

that

> may lessen any effects of withdrawal symptoms.

Thank you for your note. I have tried to ask my CFS doctor (the

prescriber) but he has been unavailable. My regular GP did not have

a problem with my stopping the medication but I don't believe

Provigil really falls within his area of expertise. I was hoping to

hear experiences from those who have taken and then stopped taking

Provigil as to how they stopped and if they had any problems.

Thanks again in advance to any in the group kind enough to relay

their experience.

[Guest guest]

I have made a search for you. Check this site

http://promini.medscape.com/drugdb/drug_uses_all.asp?DrugCode=1%2D10865 & Drug

Name=PROVIGIL+ORAL & DrugType=1

It says " Withdrawal of modafinil has not been associated with any

manifestations of dependency. "

Take care..

Nil

Re: Provigil

>

> > > Does anyone know if Provigil is a drug that can be stopped

> > abruptly?

> > > I have been taking 100mg daily for a month, then I reduced to

> 50mg

> > > for last 4 days. I now want to stop completely.

> > >

> > > Thanks for any guidance that anyone can provide.

> >

> > Ask your doctor! I think the theraputic dosage is 200 mg, so you

> > were taking a reduced dose and then lessened it more, so perhaps

> that

> > may lessen any effects of withdrawal symptoms.

>

>

> Thank you for your note. I have tried to ask my CFS doctor (the

> prescriber) but he has been unavailable. My regular GP did not have

> a problem with my stopping the medication but I don't believe

> Provigil really falls within his area of expertise. I was hoping to

> hear experiences from those who have taken and then stopped taking

> Provigil as to how they stopped and if they had any problems.

>

> Thanks again in advance to any in the group kind enough to relay

> their experience.

>

[Guest guest]

Hi,

When I'm in a situation with a drug where there's no doc I feel is

savvy/experienced enuf, especially if the drug affects the brain, I

routinely go off it slowly. I've had the experience of doc's

(expereinced ones) saying you can go off quickly or on quickly but have

found it to be very hard for me to do so.

Something about our illness that makes us very sensitive to drugs is

probably involved. And generally it's worth whatever pain the drug is

causing (GENERALLY) to take the time and develop some gradual withdrawing

protocol.

Judith Wisdom

On Thu, 26 Jul 2001 21:32:48 -0000 genxattorney@... writes:

> > Does anyone know if Provigil is a drug that can be stopped

> abruptly?

> > I have been taking 100mg daily for a month, then I reduced to

50mg

> > for last 4 days. I now want to stop completely.

> >

> > Thanks for any guidance that anyone can provide.

>

> Ask your doctor! I think the theraputic dosage is 200 mg, so you

> were taking a reduced dose and then lessened it more, so perhaps

that

> may lessen any effects of withdrawal symptoms.

Thank you for your note. I have tried to ask my CFS doctor (the

prescriber) but he has been unavailable. My regular GP did not have

a problem with my stopping the medication but I don't believe

Provigil really falls within his area of expertise. I was hoping to

hear experiences from those who have taken and then stopped taking

Provigil as to how they stopped and if they had any problems.

Thanks again in advance to any in the group kind enough to relay

their experience.

[Guest guest]

hi! i don't even know what provigil is - but if you can't reach a doc,

you might try the pharmacist where you got it!

<<< Thank you for your note. I have tried to ask my CFS doctor (the

prescriber) but he has been unavailable. >>>

~~~~~~~~~~~~~~~~~~~~~~~~~

" Would they have found nothing, unless nothing was what they wanted to

find? " - Agent Dales, X-Files

@}{~{<<~~~~~~~~~~~~~~~~~~~~

@}{~{<<~~~~~~~~~~~~~~~~~~~~

debbie s. - dlsherman@...

[Guest guest]

Hi - I was taking 400 mg of Provigil and per MD's order reduced dosage to 200

mg for

1 week and then 100 mg for 1 week then off it completely. I had no

withdrawal

problems. Hope this helps. Thea

[Guest guest]

connie, i am so glad to hear about the good results.i just posted about this

medication a few days ago.... just tried it once so far myself......i didnt

have as good a outcome as you,( got a headache) but reading your post, i

think i am going to give it another try. thanx for sharing, and i hope you

continue to feel great. pj

[Guest guest]

Try only taking a small amount at first...........my tablets are

200mg............first week only in the morning.......1/2 the tablet......if

that gives you a headache try 1/4 of the tablet........and then stay on that

amount for awhile.............each week I'm supposed to add a 1/2

tablet.........until I'm taking one 200mg tablet in the morning and then one

200mg tablet at lunch.........nothing after then or it can disturb your

sleep...........It does something with brain chemistry..........certainly

that needs correcting in my head........

Conniek nwnj

Leave no stone unturned.......and ask questions!

[Guest guest]

Check this,It looks like it is like amphetamine..Nil

http://www.provigil.com/pi.htm

PROVIGIL

| Does anyone understand if Provigil has amphetamine- like jittery

reactions?

| Or is it different , as the drug company says. As a longterm cfs patient,

i

| trust other patients experiences over the drug. co. Thank you!

|

|

| This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

|

|

[Guest guest]

Hi Howie, No jitters. Just feel like the fog has been lifted. Carol

[Guest guest]

No , It is not an amphetamine. Just makes you feel normal.. carol

[Guest guest]

Its not for insomnia............its for the opposite Narcolepsy....(not

being able to stay awake during the day).

Any medication can have any side effect, even if it isn't listed on the

insert..........not one person is the same..........a side effect for one,

could not be a side effect for another. I don't have any side effects, with

this medication. I have been on it for over a year. I use diazepam

(valium) first developed for sleep......then found it help anxiety

too......it works for me wonderfully for sleep at night with Topamax (but

remember I have PLMD).

Conniek nwnj

Leave no stone unturned!

It must happen in your mind before it happens in your life !

[Guest guest]

<<<<<<Personally I wouldn't mess around with these kinds

of meds except as last resort (which sometimes it is).>>>>>>

I agree Kell,

I was one of those last resorts..........I have tried everything under the

sun.........you name it.......I have tried all of it...from liquid herbs,

capsule herbs, combinations of things, valerian root, passion flower,

Kava-Kava, melatonin, homeopathic, Calm Forte, Coffea Cruda, milk and

cookies, warm milk, turkey, tryptophan, shot of whiskey, meditation, aroma

therapy, lavender pillows, massage, reflexology, vitamins, accupuncture,

ambien, and other tons of sleeping pills and sedating antidepressants, a

warm bath, soft music, a slow walk, .....I became so sleep deprived, I was

a walking zombie........they took me out of my Homeroom..one day......and

walked me down to the nurses office and drove me home........that's all I

remember that day.

This morning, a co-worker came in complaining about only getting two hours

of sleep last night...........and how was she going to function all

day.........I chuckled to myself........ " Two hours in a row was a good night

for me back in those early days of lyme "

I still hate to hear about someone complaining about one night of bad

sleep...........I would look at them and say its really not that bad its

only one night......just think if it was five years of that????.......Most

of the time they don't question me further, especially if they know me, if

they don't they are shocked, when I tell them my story.

Finally I went to a neurologist........who put me on provigil during the

day, and diazepam at night.........it has worked.........and I find, I can

skip a day here and there, so perhaps balance is coming back to my sleep

pattern.......and what ever was out of whack is being retored to its regular

patterns.

I hope so........

As far as all those things mentioned above...........please don't disregard

them as not working..........remember, They didn't work for me...........

They could very well work for you!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Melatonin I understand in a small amount works wonders for a lot of

people.............My mom, uses Melatonin all the time, and she has to be

careful to take the smallest dose.

Conniek nwnj

Leave no stone unturned!

It must happen in your mind before it happens in your life !

[Guest guest]

My insurance carrier just started denying me payment for Provigil. I need it

to work. Does anyone know where it can be bought on line for less than the

$200 I paid for it this month?

[Guest guest]

> Dear Bob,

>

> I have been on Provigil off and on for a few years now.

> I have found it to be a wonder drug.

> It makes the difference between sleeping all day and having enough

energy to

> get up and function.

> Not all drugs are effective with all patients. In my case it works

well!

> Hope it does the same for you.

> Jenae

Jenae,

it does the same for me but I am scared of it. I am addicted to

SSRI's and I tried weaning off of them over a 9 month period but I

started back within 10 days. Since I don't know if it is " speed " or

how it actually gives me energy, I only use it in emergencies since I

am on disability. Probably would take it everyday if I still worked.

I know a man in Florida who provigil gave him back his normal life

for 6 months, then quit working?? You have used it for 2 years. I

wished my doctor knew how it worked. Thanks for you letting us know

about your personal use of it.

Bob Harrington

[Guest guest]

Bob: It's not bad enough we have a complicated disease with unknown causes, we

have these mysteries of treatment to deal with, too. I don't blame you for being

cautious. Too tricky!

Adrienne

I know a man in Florida who provigil gave him back his normal life

for 6 months, then quit working?? You have used it for 2 years. I

wished my doctor knew how it worked. Thanks for you letting us know

about your personal use of it.

Bob Harrington

This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

[Guest guest]

On or about Wednesday, December 31, 2003 10:02 PM [GMT+1=CET],

Cattttttt@... <Cattttttt@...> sprinkled letters onto the page,

saying:

> My insurance carrier just started denying me payment for Provigil. I

> need it to work. Does anyone know where it can be bought on line

> for less than the $200 I paid for it this month?

Possibly... In which dose???

Best wishes for 2004,

Kezzi. . .