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Provigil stories?
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Provigil stories?

Hi, I've been AWOL because my neuro thinks I probably don't have MS and I wanted to not focus on it for a while.  But my brain has a life of its own -- not to mention polka dots -- so here's a question.

Do you take Provigil to stay awake?  How long have you been taking it?  Daily or as needed?  What side effects have you had?
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Today I took Provigil for the third time, and it's the third time in a week I've needed it.  I'm scared to take it daily because of the severe side effects some people have had, but it's a wonderful drug and I'm curious about what it's doing and how it works in MSers.

For me it's all about the "Winco Effect" -- the grocery store that always reduces me to a yawning zombie within 15 minutes (since October 08).  The overstimulation of this big, loud, busy store, plus the need to keep making decisions, makes my brain retreat to its den to hibernate.  Other situations that have brought on the Winco Effect for me are kids' parties, a raucous political activism group, and, today, a noisy school bus full of fifth graders on a field trip.  Why oh why did the bus driver treat the whole bus to his radio?  And keep changing stations?  

But bless those little white oval pills.  No buzz or jitters, just no yawning.  Enough energy to not only put the groceries away but to visit elderly relatives later with the pie we bought.  Enough energy to shepherd six kids through a 3-hour educational scavenger hunt and then the requisite gift shop.

And bless my neuro for working around the HMO that wanted to charge me $300 for 30 pills.  Provigil wasn't in the formulary. She got it reduced to $15.  

Side effects:  minimal.
Insomnia the first day.  Note to self:  don't take it in the afternoon.
Heat, sweat each day.  Note to self:  wear layers.
Less appetite.

But there are very scary side effects that can come on with repeated doses, and I'm curious about people's experiences here.  Also, can some of you clever chemists and physicians explain why the brain shuts down like this and why Provigil prevents that?

Octarine (a new member of Quix's On and On Anon)
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233622_tn?1279338505
I have been on it about 9 months now. I was taking it as needed but the problem is I need it every day.
I have 200 mg pills but break them in half.
I need to take the 200 mg because I am still needing a good long nap in the afternoon but I am also afraid of the side effects of that high of a dose.
As far I can tell I have had no side effects from the 100 mg's I have been taking on a regular basis.
But I do think that maybe a tolerance might be built to it.
It was great at first...no naps, but now I need them again.
But my symptoms are progressing so that may be the problem. Hard to tell
I go to my Ms doctor today.  

LA
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Hi O- just because you might not have MS doesn't mean you are excused to leave us!!! LOL

I think that is maybe good news that it isn't MS, but you haven't said what the neuro is looking at instead, so I will reserve judgement.  Whatever it is, I hope it is a better alternative to this MonSter.  

I don't take this drug yet, so  I can't comment.  i just wanted to stop here and tell you hello.

My best,
Lulu
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798671_tn?1238157488
i too am in limbo land and struggle with fatige and weakness. I have been taking the provigil for 7 months now. You are absolutly right. do not take them in the afternoon. I take 200 mg a day within an hour of waking up. It was doing a great job. then i had another attack on the 9th of march and it does not seem like it is doing anything anymore. as for the side affects well, there are side affects with any pill that you take. that is why i dont like to take pills, but sometimes we have no choice if we want to function. hope this helps

kenny
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Hi, all.  Thanks for your info.  Sorry to hear that Kenny and LA are doing worse.  

Lulu, my neuro has no alternative diagnosis, but lots of things have been ruled out.  I'll just deal with life and wait for the other shoe to drop and hope it doesn't.
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I too have no diagnosis but took Provigil for about a year, on an as-needed basis (not daily).

My neuro prescribed it not for fatigue (which I had only mildly) but for my dizziness-related "fog" problem (the feeling in your head like if you've just got off a 2-hour ride on the Tilt-a-Whirl).

It worked GREAT for the concentration problem--allowed my eyes and attention to "stick" on the world, and it also made my arms and legs feel lighter and more energetic.

I took one dose in the morning--I think it was 200 mg. By late afternoon I often noticed a kind of slightly unpleasant letdown effect--a sort of irritability as it wore off--but it really did help me through my day.

After a year or so it seemed not to be working so well as it had. I asked to switch to Ritalin (because he had originally said they used to prescribe Ritalin, but Provigil had fewer side effects), and Ritalin worked great for me (again, as needed) for a couple of years. Then, not so good.

Finally I switched to Strattera, an ADD med (which Ritalin is, too). I've been taking it five years with great success--it works all the time consistently, no side effects, refillable, and it gave me back my ability to think and focus (to a large extent). I'm extremely happy with it. It isn't a fatigue med, but I think it helps slightly with that, too.

I don't know why Provigil works as it does--I think it has a stimulant effect on the brainstem's arousal mechanism. Staying aroused keeps you focused (which counteracts the "Winco effect"--although I'm not sure if that's the case for people whose "Winco effect" is caused by inner-ear problems) and energetic. Strattera works on the neurotransmitter norepinephrine, a stress hormone involved in the fight-or-flight response, so it too heightens your attention and focus.

Paradoxically, small doses of Ritalin--which is essentially speed, and makes normal people jittery--made me feel RELAXED, because being ABLE TO FOCUS takes away that kind of woozy-yawny-scattered feeling that makes you want to slap yourself across the face to wake up.

Nancy
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Thank you for all this great info!  I'll save it for future reference.  One question:  if you took it as needed, in the morning, how did you decide which days to take it on?  Did your symptoms start in the mornings usually, or were you anticipating what you had to do that day?
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I have taken Provigil every day for the last two years.

When I started there was a medical emergency with my sister and I had to do the driving and errand for me, her, and some for my parents.  I needed 300mg a day to manage that.  It was a miracle for me that suddenly after more than three years I could get up and out of the house.  I took that dose for about a month and then started feeling overstimulated by it.  I dropped down to 200mg for a while and then pretty promptly to 100mg.

Harsh side effects?  Not me.  If I take it too late in the day I am awake well into the morning hours.

The cats and I get up about dawn for various and sundry things.  I take it then and go back to sleep for another 5 or 6 hours.  If I forget and miss it, I can tell because I feel draggy, fogged and wasted all day.  The only reason I am able to be on the forum is the Provigil!

Beyond the mental alertness and ability to get going, the med stabilizes a lot of my chronic vertigo (which is now manifested by severe unsteadiness) and allows me to think much more clearly.  I would say that it really helps the cog fog.

I still occasionally use a higher dose.  This is totally dependent on if I need to have a longer, productive day.  The few times I've taken an extra 100mg later in the day I have paid for it with a bad bout of "bright eye" that night.

BTW - I have a tendency toward getting benign extra heart beats.  Provigil does not cause those in me.

I have also started back (after 8 years "clean") on a little caffeine.  I drink one small cup of coffee only after I get up.  This also has helped me function.  There is a bit of increased tinnitus, but it is usually tolerable.  Heck, I have so much roaring in my head, I don't notice a little extra, lol.

That's my story and I'm sticking to it.

To those users of 100mg.  You might request the 200mg and get twice as much for your copay - build up a little cache for if times get tight.  This stuff is expensive!  Darned, greedy Pharmas.

Quix
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And I DID miss you!  I understand the needing to walk away, but I'm sure glad you came back!

Quix
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Gee, I wish I could get my neuro to talk my insurance company into covering my Provigil!  She just said to take Ritalin if I can't afford Provigil.

I tried that, and Ritalin makes my tremors worse, tends to make me short-tempered, gave me terrible facial tics the first day I took it, and has increased my benign irregular heartbeats.

With Provigil, the only one of the above side effects I experience is a bit of short-temperedness after I've spent a day doing a lot after 200 mg.  I find that 100 mg. doesn't work as well, though is sufficient if I don't have a lot I need to do.

I take 200 mg. if I plan on driving any distance, have plans for both morning and evening or all day.  It really helps with mental clarity so I can drive, discuss things intelligently with doctors or whoever, and being able to check off things on my to-do list.

I took 200 mg. yesterday, and must have taken it to late in the morning, as I found myself lying in bed thinking, thinking, thinking, planning on what to discuss with my cardiologist next week; all sorts of stuff, until well past midnight.

Today I took Ritalin.  I did my PT exercises and some other stuff, took my second dose, and I'm getting cranky and just want to lie down and rest.  I planned on making some lentil soup for dinner, but I don't feel like chopping veggies when my hands are shaky.

I vote for Provigil; I really haven't experienced any truly bad side effects.   I've been taking it for about 3 months with a few days off, and then a few days of trying to get the less-expensive Ritalin to do the same job.  

I'll have to work on my PCP and neuro, see if they can get my insurance to cover it for dizziness/brain fog or SOMETHING.  They can't actually approve it only for sleep apnea, shift worker sleep disorder, and narcolepsy; there must be a way to get it approved, as it's the only thing that has helped me to lead a somewhat normal life in the past year.

Kathy
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Hi Octarine, sorry I missed your question. I can't remember too well how I decided which days to take Provigil, but one reason was when I had to be very functional (such as the week I was training for a new job that involved a lot of physical activity).

The other reason had to do with sleep. My dizziness is weird--when I've only had 6 or 6.5 hours of sleep (but have slept normal amounts during previous nights), my head feels considerably clearer. So, if it was a time when I'd had 7-8 hours a night for more than 2 nights in a row, I'd take the Provigil (or, later, Ritalin), because shortly after getting up I would get hit with the "fog" (the fog would hit right about 8:30-9:00 a.m. after getting up at about 7). On the less-sleep days, I simply didn't need the medicine as much, so tried to avoid it.

Nancy
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I don't have an MS diagnosis (and from the feedback folks are giving me here, I'm thinking it's unlikely anyways) but my PCP prescribed Provigil for my extreme fatigue.

Because my insurance wouldn't cover it and I couldn't afford the cash price, I had to make the samples my PCP gave me last, so I saved them for days I really needed the extra boost. For me, that mostly meant using them on days I wanted/needed to participate in something my daughter was up to, like a birthday party, or when I wanted to have energy into the afternoon/evening for socializing.

I think I took it about a dozen times over three months, rarely more than twice a week and occasionally skipping a week. It was great for giving me the energy I needed to accomplish things, but I always had a letdown the next day where I seemed to pay for the energy I'd spent. Sometimes those "hangovers" lasted several days, which sucked.

The last few times I took it, my husband commented on how red-faced I was and my skin on my face started burning. The last time I took it, my cheeks looked like they had raised, red welts on them and the burning was very painful. Both the pharmacist I called and my PCP said I had to discontinue taking the Provigil because it might be an allergic reaction.

I still miss it. We've talked about my trying Ritilin or Adderall (adderrall), but the pharmacist says that because I take Cymbalta, and especially because I take the max dose of 120 mg per day, drugs like Ritilin and Adderall (adderrall) are contraindicated. Apparently they work also inhibit seratonin uptake or something, and the combination of that and the Cymbalta could make me dangerously manic.

I do get a slight energy boost from the Cymbalta, but not nearly enough to be functional.

If Provigil works for you without side effects -- and insurance will help make it affordable! -- then it can be a great drug!!

Oh, and for those whose insurance won't cover Provigil, you can appeal the decision with the help of a doctor to explain why it's necessary to use P instead of Ritilin or Adderall (adderrall). But if your doc won't do the paperwork for the appeal for you, you're pretty much stuck. You can try asking another doctor though if you have one who's more sympathetic ... And always, always ask for samples when you visit your doctor!
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As Quix suspected, I'm very glad to be back. Thank you, all of you, for helping me (and, I suspect, lurkers).

The side effect I fear is that rash SickMomma had.  It's good you stopped right away. The FDA has issued warnings about Provigil due to people nearly dying from rashes so bad they put the patients in burn units.  

But Quix's years on Provigil are very encouraging.  And thanks for the details about how you time your doses and on making a prescription stretch.

I'll add one other tip about working the system.  My HMO covers 1 - 3 months of most* prescriptions on a single copay, but you have to ask for the 3-month supply or they just refill the initial amount.  Once you get the 3-month refill, that will be the default!   I found this out by asking for 2 months one time for convenience, and a pharmacist actually called me up to ask didn't I want it for three?  

Sometimes people really do look out for each other.

*So far the only ones refused are my mother-in-law's sleeping pills (duh) and her Fortical, a nasal spray osteoporosis drug that needs refrigeration.
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Kinda late comment, more FYI. I've been on Provigil for 3 years. I have Narcolepsy, pretty bad sleep apnea. I was taking it everyday untill January this year. I need 1200 mg to have any effect at ll, partially because I have a very high tolerance to any drug, always have and I'm sure that being 6'4" and 385 pounds has a lil bit to do with it!!  LOL

The reason I stopped taking it everyday is I lost my job in January and my health insurance for a bit. At $1200 per 100 pills, it just was not happening!!   Funny thing, I found while I was home much more being out of work, my daytime sleepiness was not nearly as bad as I frequently would fall asleep sitting up in the living room where 2 things happened. 1) My sleep apnea was much better sleeping sitting up and 2) I could sleep a whole lot more when not working!! GO FIGURE!!

Plus I found on days that I'm home, if I am nodding off, who cares if I'm on the couch??  When I'm driving or riding my motorcycle, THEN I CARE!!

Also FWIW I found that the more I tookffective it got!!  I started on 1 200 mg pill and by the end of 6 months I was up to 6 200mg pills to get any effect. I just refused to take anymore then that as I figured it couldn't possibly be good to take more then 1200 mg's a day longterm. Oh yea, while I was taking it regularly I usually skipped Sunday to let my body cleanse a lil bit. Only problem with that was WOW what a crash!!  Didn't get much done on Sundays!!!!

I don't know if all this babble helps or informs anyone, but I stumbled onto this and wanted to comment

Good luck to all taking these meds for whatever your illness is!!
Peace
DOC
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