Huntington Disease Lighthouse Families

For HD families ... by HD families

Provigil and HD prescription mix

Posted by TylerFitz 
Provigil and HD prescription mix
January 24, 2011 10:05PM
I was just wondering if anyone else out there is aware of any PHDs having success with Provigil as part of their prescription "cocktail"? My wife uses Provigil, Risperidone, Effexor, and sertraline. It appears to be a pretty good mix.

When she recently went off of Provigil, due to Rx insurance no longer picking it up, we saw a drop-off with Ritalin in its place. I have since resumed the Provigil generic (modafinil) by way of India and we appear to be back on top, doing reasonably better.

Anyone else have a modafinil or Provigil experience to share? Ty
Re: Provigil and HD prescription mix
January 25, 2011 02:47PM
I am certainly no expert, but I remember reading a case study (it was in the Lighthouse section: [] ) about a child who wasn't known to have JHD until he was put on Ritalin and then there was a rapid decline. Based on this one incident, I decided I would never let my at-risk son be put on stimulant meds for ADHD. However, this is only one example and it was a child. So I'm not sure based on that the Ritalin is contra-indicated...but it makes me wonder?
Re: Provigil and HD prescription mix
January 25, 2011 07:21PM
It's just a shame that some of the insurance carriers don't want to cover Provigil for HD treatment, unless the patient were to have narcolepsy or shift work sleep disorder. They just don't understand that a patient can take Provigil for two years, off label, and have great results. But they only care if it's being prescribed in the most narrow sense. Not to be cynical, but it must come down to money. Really shameful. Provigil gets our thumbs up.
Re: Provigil and HD prescription mix
December 14, 2016 06:13PM
Bumping this oldie up because I am wondering if there is any new info about Provigil the generic modafinil. Does what Ty stated 6 years ago still hold true? Anyone have any luck with this. Laura has been zapped of all energy for some time now.

Re: Provigil and HD prescription mix
December 23, 2016 02:56PM
Pete, just now seeing your post, sorry for delay.

My wife has not been taking modafinil for at least a couple years now. In the end, I was basically getting the Rx in my name in which I was all the sudden suffering from my own swing shift disorder, so I was getting Provigil in my own name.

I eventually let that Rx lapse and I don't recall the timing of when and why, but I believe that once she started taking tetrabenazine, there was not much need for the Provigil. My wife has been taking afternoon naps, and that is fine.

Currently, she is in a nursing facility and generally awakens at 7:30 am, doesn't nap, and goes to bed around 8:30 pm. She is up in a Broda chair all day and does a limited amount of walking to the bathroom. So really no need for Provigil.

Good luck to you and Laura. Have a Merry Christmas!
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