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Provigil


sarahmarie43
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Dr. Grubb prescribed Provigil for me since Propranalol and Midodrine did not help, and my insurance company is giving me trouble. They won't approve the Provigil since the dose I am supposed to take is twice the dose that is normally prescribed. Without insurance, it will be $500 a month, which is impossible for me since I am not working right now. I am just wondering if anyone else has had success with it so I can decide if it's worth the fight.

My BP is pretty stable with Florinef, but my HR is still out of control and my fatigue is still severe, so I am looking for something that will help me to actually feel better.

Thanks :blink:

Sarah

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They do have a promotional discount voucher thing for Armodafinil (Nuvigil) which is the R-enantiomer of Modafinil (Provigil). My doc was open to Provigil, but resistant so far to a traditional stimulant, which I think tends to be much cheaper depending on which form is chosen. I guess Provigil won't be generic until at least 2012 so unless NuVigil really distinguishes itself I don't think Provigil will be much cheaper too soon.

Adrafinil is unregulated (kind of a loop hole) and legal to get a hold of but is the older form and perhaps more prone to side effect than Modafinil which is one of it's isolated metabolites. I've tried Adrafinil with some modest alertness effect but I didn't push the dose too much. Despite being unregulated, Adrafinil does not end up being much cheaper than Modafinil for an equivalent dose... so it's of limited use. I've never taken a regular stimulant (other than coffee) so I can't form a comparison but it seemed tame to me (though everyone can respond differently of course).

Anyway, I will probably try a 1 week discounted NuVigil (see nuvigil.com) or just a month of Modafinil before too long. They also have discount promotions or assistance with longer term supplies, though it is still expensive no matter what. Might be worth looking at one of those promotions as a more economical means of trying it out, though. If it really really helps it might be worth finding some way to fund it... like if it lets one get back to work or something it could be worth it.

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Notgivingup, that's why I would like to try it, too. It is so frustrating that insurance companies have so much control over treatment- but I could talk about that all day. I hope you can find something else that helps. ;)

Erik, thanks for the voucher info. My sister was telling me last night that I should see if the drug company had any kind of assistance. I can't imagine ever paying that much for meds, but if it truly did help it would be worth finding a way. Dr. Grubb's office is putting through another appeal this week, so I am hoping it goes through but I'm not getting my hopes up too high. Let me know if you end up trying NuVigil or Modafinil and what it does for you.

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My son recently tried Provigil. I'm suspecting that he used it for a slightly different reason than you are. Mack is 16 y/o (155 lbs) and has NMH/NCS/CFS. He is very tired and his HR can run very low. He had already tried many stimulant type meds, like Adderall, Ritalin and Concerta. He found the Provigil pretty ineffective as a stimulant. He was OKed for a dose up to 400mg. He was supposed to start with 100mg for a week and work his way up. 100mg per week. After an hour of 100mg, he was BEGGING for more. I relented and have him another 100mg- so 200mg the first day. Mack found it somewhat comparable to 27mg Concerta. He seemed a bit more irritable/aggressive and his appetite was GONE. he is already very thin.

After 2 weeks, he asked to go back on to Concerta 27mg. He feels that it made him more awake, "stable," and better able to eat.

Our insurance Co. would supposedly OK the Provigil with "prior authorization" done twice a year- a form the prescribing doctor had to fill out. I didn't want to deal with all of that "begging" just to see if Mack liked the med. My husband travels overseas and he picked some up in India. You may want to consider ordering a small amount from overseas to check it out.

Based on my son's experience, I would recommend trying a more traditional stimulant drug, like Concerta before going to all of that trouble. You'll have a good idea if it will benefit you. I know Dr. Grubb is wonderful, but I'd start out with a very small dose, especially if you are prone to tachy.

All the best-

Julie

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Thanks, Julie. I'll have to look into Concerta. I am also very thin and have trouble with my appetite, so I certainly don't want anything that will make that worse for me. And the irritable part does not sound fun. I also have CFS and my main problem is fatigue. I have no idea if Provigil is supposed to help with palpitations, but if it gives me enough energy to return to work, I can deal with the HR issues or perhaps try Propranalol again in addition to Provigil (they took me off of it because they thought it was making my fatigue worse, but it didn't really make a difference).

I'm glad your son has found something that helps him to get through the day.

Thanks again,

Sarah

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Sarah,

The fact that you have heart palpitations makes me think you should proceed cautiously. Any stimulant could worsen that. How do you do with a strong cup of coffee? If caffeine helps, I'd feel much more comfortable trying it.

Let us know how it goes. Good Luck!

Julie

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I am a bit nervous about stimulants. Coffee makes me jittery but does nothing for my energy level, like I'm wired but still physically exhausted. I have not had coffee in several years, but I don't drink soda or tea or anything. Chocolate doesn't seem to give my any trouble (thank goodness), but I don't like the way I feel on caffeine. I am hopeful that I will find something that gives me energy but doesn't make my other symptoms worse- and it might be a long search still ahead. But I will be cautious. Thanks for the warning. I'll be sure to let you know what ends up happening.

Sarah

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  • 4 weeks later...

I did the nuVigil (armodafinil) trial offer mentioned above in post#3. It is pretty subtle but helpful nonetheless. Hard to describe but it does contribute to wakefulness and mental focus (for me in a gentle but noticeable way). It is a different effect than caffeine, though perhaps comparable in "strength" to a cup or two of coffee (and lasts longer) to put it in some context. I've not tried an actual stimulant yet, but I have to assume this is less potent in effect. If one is leery of stimulants but insisting on seeing if they can help symptoms, this is probably a good quasi-stimulant option to get a sense. Of course, responses will vary and you must use your own best judgment in this.

As for battling fatigue, I didn't personally feel much of a "physical" side to it, mostly "cognitive" (though this family of drugs is apparently tested for in endurance athletes... and tends to be given away by the sulfur urine smell). There could be a little assistance to physical activity, just nothing extreme. I typically have my thoughts peter out early and also have trouble with extended mental activities (at worst, having to take breaks every 10 minutes from exhaustion... like mini-naps over and over to keep going). NuVigil seemed to help subtly but significantly with both of those things. Nothing night & day... I won't be designing a working fusion reactor any time soon... but I read & understood longer & better than I have any time recently.

I personally felt calmer mentally despite it having "alerting", "vigilance" & pseudo-stimulant effect. Something akin to being more "contemplative", but not meditative or anything... just a little more "penetrating" thoughts and focus. I think this matches an expected ADHD benefit... where a "stimulant" can be "calming". In a way, it was mildly anxiolytic. This contrasts with caffeine, which can be helpful but leaves me a bit more prone to distraction and even agitation after too much or too long drinking it. There was no "wired" or hypervigilant feeling from my dose of armodafinil. Caffeine suites me fine for enhancing endurance while "doing", performing mental activities I already know... nuVigil seemed to actually improve focus necessary for "learning", which I don't personally get from caffeine (or only briefly).

I felt no drive to "get out and boogie" (a.k.a. be more social) but felt more "present" and comfortable in the few social experiences I had. After a few days in a row, there was a very mild boost to mood... good mood, that is :) Didn't notice any extra "intensity" in feeling other than a mildly "more present" sense (ProVigil apparently helps some folks slightly with derealization). My trial was about a week, so I don't know about longer term effects yet. I didn't notice any crash as it wore off. Was just eventually back to normal and perhaps a bit tired (in a normal healthy way from modest "mental exertion"). Benefit might have tapered a little after several days, though its hard to say.

I did not happen to experience notable side-effects. I did not have insomnia, but was up a little late on the first day taking it (was noon dose rather than AM). I did have some mild headache but this was after pushing my focus & endurance further than normal. I could see there being an increased tendency to palpitations. When I combined with a little caffeine I got more palpy... as I also tend to get from pseudoeffedrine/caffeine which I can get away with if I am cautious. The nuVigil was less palpy prone for me than pseudoeffedrine and probably less than significant coffee, but there is some mild "pressor" effect along those lines... I might have had a slight boost in HR and very slight in BP if any. For example, I'm typically BPM of 40's or low 50's when supine but was more likely to be in the 60's when supine on nuVigil. I might have felt a little quicker to go tachy upon standing, but extent and impact wasn't made worse for me. Maybe it was like a 2 out of 10 for making tacky & palpy worse... and a 2 or 3 out of 10 for reducing chance of hypotension on standing. For me, basically akin to a little coffee in those regards.

I took the larger dose available, 250mg (rather than 150mg), once daily in AM. I weight 220 lbs or so. Perhaps being a brain med means body weight doesn't matter, I don't know. As you mention, a rather high dose of ProVigil would tend to be used for our circumstances rather than typical. I did not happen to try a double dose (or partly overlapping dose, which is what I'd try first).

Not sure if nuVigil dosage translates to a ProVigil (modafinil) dosage of not. Armodafinil is the R-enantiomer of Modafinil (which is racemic). I've also tried Adrafinil which aside from taking the extra hour in the body to be metabolized into modafinil, is "dirtier" feeling and I notice it more in my heart and very little in "cognition" just a bit more awakening. I've not tried modafinil yet. I may end up with that as my regular prescription depending on how they cost out nuVigil in comparison. They may go cheap on it to help get people to switch to the newbie, or maybe they'll go "premium" on it since isolating the active isomer can sometimes clean up side effect profile (it certainly seems better than the old old original).

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I should add briefly that one of nuVigil's attributes is said to be it's longer half-life of something like 15 hours. Half of a ProVigil dose is identical, the other half is metabolized quicker so one would expect a bigger peak and trough effect (and perhaps need of/opportunity for multiple dosing).

Also, I did have some blips of short term memory loss but I get that on my own from time to time. Others have mentioned this as side effect so maybe mine was such or maybe it was just me being me or being fatigued!

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My doctor gave me a voucher last year for a trial of Provigil. It really helped the brain fog and mental fatigue, and I didn't notice any more palpitations than the usual. My insurance wouldn't pay for it, though, so I couldn't keep taking it. Too bad there's not an affordable generic!

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Very interesting to hear your experiences Eric & Sam. My (then 16 y/o) tried it w/o success, but he's a "man" of little words. I love hearing about all of the nuances... Part of the reason that Mack takes a stimulant med is for bradycardia. Maybe THAT's why the provigil wasn't a good fit OR maybe he didn't give it a long enough try. Hmmmm.

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