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LittlemsSkelly · 06-04-2011, 23:54

Hi, I'm new to boards and I'm not too sure if this is in the right place so mods, please feel free to close or move.

I'm currently being treated for RRMS with betaferon, and have my second bout of optic neuritis in the space of one year, for which I'm receiving IV methyl prednisolone (previous time I lost all vision in my right eye and began to lose vision in my left).

Anyway, my neuro wants to start me on provigil for extreme fatigue, but as I'm already on topamax 100mg for migraines and the betaferon, I really don't know what to do. I'm not looking for a yes or no answer because it is ultimately my decision or any medical advice but if anyone has any personal experiences of this drug for its marketed use for narcolepsy or uses it as part of their MS treatment or has prescribed it to someone and can give me an idea of what their reaction to it has been like, any advice would be much appreciated. I've looked up the literature, I've read the pro's and con's, now I just need opinions because my friends just laughed and said 'legal speed' which is ironic seeing as prior to september I didn't so much as take a painkiller!

Thanks a million

val444 · 18-10-2011, 14:10

Hi,

I am sorry to be bumping up an old thread, but I asked a similar question to this on another thread. Can I ask, did you end up trying it? I was only diagnosed a month ago, but the neurologist is already talking about provigil, as I am the most tired person in the history of time.

Thanks!

LittlemsSkelly · 19-10-2011, 08:50

Hi Val,

Nope, didn't get put on the provigil. I'm back to my neuro at the end of November for a check-up so I'm going to ask again. He was the one who brought it up in the first place but in his defence he did say that they do consult other neurologists in it's use because it's pretty hardcore and the drugs companies don't like it being used off label (for something other than what it's intended). Its coming up on a year since I was diagnosed and I'm still shattered and far too busy to be taking naps like a little aul one

Having said all that I'm not a fan of taking drugs and as I said above I'm already taking Topamax for migraines which have resulted in a twitching eye so I just take them at night when no one can see the oh so fabulous spasms around my eye socket... so just be wary about any weird, unlisted side effects from these drugs. Twitchy eye is not cool let me tell you....

val444 · 19-10-2011, 09:30

No, I can't imagine I would like a twitchy eye. People think I am strange enough without me winking at them! You sound like you have had a tough time of it, I'm sorry.

I will wait and see what the Neurologist says, she really seemed to be encouraging me to try Provigil the last time, so if she does the same, I might go for it. Now that I know not everyone is as tired as I am, I would really like to experience what it is like not to nod off at about 3pm every day!

06-04-2011, 23:54	#1
LittlemsSkelly Registered User Join Date: Apr 2011 Location: Dublin Posts: 39 Adverts \| Friends	Provigil advice Hi, I'm new to boards and I'm not too sure if this is in the right place so mods, please feel free to close or move. I'm currently being treated for RRMS with betaferon, and have my second bout of optic neuritis in the space of one year, for which I'm receiving IV methyl prednisolone (previous time I lost all vision in my right eye and began to lose vision in my left). Anyway, my neuro wants to start me on provigil for extreme fatigue, but as I'm already on topamax 100mg for migraines and the betaferon, I really don't know what to do. I'm not looking for a yes or no answer because it is ultimately my decision or any medical advice but if anyone has any personal experiences of this drug for its marketed use for narcolepsy or uses it as part of their MS treatment or has prescribed it to someone and can give me an idea of what their reaction to it has been like, any advice would be much appreciated. I've looked up the literature, I've read the pro's and con's, now I just need opinions because my friends just laughed and said 'legal speed' which is ironic seeing as prior to september I didn't so much as take a painkiller! Thanks a million

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18-10-2011, 14:10	#2
val444 Registered User Join Date: Jun 2011 Posts: 90 Adverts \| Friends	Hi, I am sorry to be bumping up an old thread, but I asked a similar question to this on another thread. Can I ask, did you end up trying it? I was only diagnosed a month ago, but the neurologist is already talking about provigil, as I am the most tired person in the history of time. Thanks!

19-10-2011, 08:50	#3
LittlemsSkelly Registered User Join Date: Apr 2011 Location: Dublin Posts: 39 Adverts \| Friends	Hi Val, Nope, didn't get put on the provigil. I'm back to my neuro at the end of November for a check-up so I'm going to ask again. He was the one who brought it up in the first place but in his defence he did say that they do consult other neurologists in it's use because it's pretty hardcore and the drugs companies don't like it being used off label (for something other than what it's intended). Its coming up on a year since I was diagnosed and I'm still shattered and far too busy to be taking naps like a little aul one Having said all that I'm not a fan of taking drugs and as I said above I'm already taking Topamax for migraines which have resulted in a twitching eye so I just take them at night when no one can see the oh so fabulous spasms around my eye socket... so just be wary about any weird, unlisted side effects from these drugs. Twitchy eye is not cool let me tell you....

19-10-2011, 09:30	#4
val444 Registered User Join Date: Jun 2011 Posts: 90 Adverts \| Friends	No, I can't imagine I would like a twitchy eye. People think I am strange enough without me winking at them! You sound like you have had a tough time of it, I'm sorry. I will wait and see what the Neurologist says, she really seemed to be encouraging me to try Provigil the last time, so if she does the same, I might go for it. Now that I know not everyone is as tired as I am, I would really like to experience what it is like not to nod off at about 3pm every day!