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Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS) |
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#1 | ||
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In Remembrance
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Provigal.
I was given it after I acquired my tbi, to help keep me awake. (maybe to keep me alive)? It was only marginally helpful. But, it Drove my RSD Pain and tos so badly, I really just had to stop it. After all, now, if I take just half of one, I get a vicious migraine the next day. (obviously, I haven't taken half of one for quite some time)! I think it's an evil med, now. Just wondering how others with RSD fare(d) with this med? If any at all? All it did was hurt me, and I could get all the "waking" effect I need now, with just caffeine. Thanks, Pete |
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"Thanks for this!" says: | loretta (09-26-2009) |
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#2 | ||
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Member
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I've been on Provigil for about 6 yrs now. Sometimes daily, other times just PRN (as needed).
I was started on it long before my RSD/CRPS diagnosis. My neuro put me on it to help keep me functioning and awake. By brain and body does not get much restortive rest-- due to a combination of day time seizures, nocturnal seizures (seizures in my sleep) and medication side effects. So, I have severe daytime sleepiness, and at the time I was put on it, was beginning to fall asleep at work and school (yes, I had a sleep study to rule out sleep disorders). I HAVE to be able to function. It does not give me any sort of "high" or extra energy, but has been a true Godsend in terms of helping staying awake to get most daily tasks done and improving quality of life. As for it helping or hurting the RSD/CRPS, I haven't seen any effect on it all. So, Its still on my med list. ![]() |
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"Thanks for this!" says: | AintSoBad (09-25-2009), Twinkletoes (10-25-2019) |
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#3 | |||
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Elder
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I have Provigal, as needed, it works wonders and keeps me from falling asleep when I need to be awake...ie---driving. But, for me, it is TORTURE for RSD symptoms.
I feel it magnifies my RSD symptoms majorly... on a pain scale of 1 to 10... I say oh... a million... truly when I have to take Provigal... I pay for it in pain increases for several days. ![]() Abbie
__________________
My avatar pic is my beautiful niece Ashley! . Rest in Peace 3/8/90 ~~ 4/2/12
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"Thanks for this!" says: | AintSoBad (09-25-2009) |
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#4 | |||
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Senior Member
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What a difference a couple of years make. In 2004 or so I tried Provigil, but it greatly aggrevated my spasms. Last year, as I was complaining to the same doctor who had given me Provigil four years earlier, of how tired the meds were making me and he suggested that I give it another shot. And it hasn't aggrevated the RSD/CRPS a bit, but then, for me, neither does coffee.
BUT, a few months ago, around the time I was bumped up to Methadone* by my pm doc and not even Provigil wasn't cutting the mustard, so my shrink suggested that I try a varient of the molecule by the same manufacturer (and I don't believe its patent is set to expire anytime soon, but I may be wrong) this one called Nuvigil (armodafinil). It worked wonderfully, the only problem was that a month later, both ends of my blood pressure had jumped 30 points. I stopped taking it at once (the only new drug in a long time) and the BP went back to normal: using a very slick home health monitor that wasn't terribly expensive, all things considering. Then, as an experiment, I took one more pill a few days later and up again everything went. The physician's insert (which someone intentionally made impossible to block and copy) mentions that: Blood pressure monitoring in short-term (≤ 3 months) controlled trials showed only small average increases in mean systolic and diastolic blood pressure in patients resceiving NUVIGIL as compared to placebo (1.2 to 4.3 mmHg in the various experimental groups). There was also a slightly greater proportion of patients on NUVIGIL requiring new or increases use of anti hypertensive medications (2.9%) compared to patients on placebo (1.8%). [Only a 37.9% increase.] Increased monitoring of blood pressure may be appropriate in patients on Nuvigil.http://www.nuvigil.com/media/Full_Pr...nformation.pdf What's odd is that while I apparently tollerate Provigil, its prescribing information sheet has not only the same admonition regarding the monitoring of blood pressure, but even worse stats on the increased use of blood pressure meds, especially in patients with obstructive sleep apnea - which I've got - going from 1.1% with patients on placebos to a whopping 3.4 with Provigil, or an increase of 67.6%. Finally, in a condensed form, here are the basic warnings for Nuvigil. Note that most if it is based on studies on modafinil (Provigil) but there's some scarrier stuff in there than a mere rise in BP although the "consolation" for me is that once you're on it for more than a few weeks, you're highly unlikely to get the potentially fatal rashes of which they speak, only thing is, they have yet to figure out who's at a greater risk going in: Important Information for Physicianshttp://www.nuvigil.com/hcp/index.php I've got to say, the last line about never studying its use with alcohol (which also appear in the Provigil literature) would crack me up if it wasn't for the fact that some people could conceivably become quite ill (or worse) because of what could be described as an extreme case of willful blindness on the part of Cephalon. It's like a judge once admonished me after I asked the opposing party/witness a question in a bench trial and got response that completely undercut one of my lines of attack: Never ask a question to which you don't know the answer! Mike *For me, an unmitigated disaster. |
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"Thanks for this!" says: |
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#5 | ||
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In Remembrance
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Thanks, Michael.
We can always count on you to bring some facts to the conversation! Be well, Pete |
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"Thanks for this!" says: | Abbie (09-26-2009) |
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