Modafinil

[gii]

Did any of you ever tried to experiment with modafinil? Did it help with the fatigue and brain fog? Did you feel it restored you to normal state as if you didnt have SS?

thanks

[Sharon]

I tried it once and reacted very badly to it: became extremely dizzy and nearly fainted.
It didn't help with my fatigue at all- quite the opposite!
I do have strange reactions to many meds though, so best to try for yourself.

[Linda196]

I haven't tried it personally, but I know a few who have with the brand name Provigil, and results have varied. The most common report was that they were energised in a sense, but it was more like "feeling wired but still tired", too mind-busy to sleep but too physically tired to do anything else for any length of time. Bursts of physical energy did happen, but not long term.

As far as brain-fog, one person in particular told me "my mind is much clearer, I can see thousands of things clearly now, just can't focus on any of them!"

Of the four people I've talked to about it, none had Sjogren's; two had hypothyroidism, one had "chemo-brain" following treatment of ovarian cancer, and one had a great many complications of diabetes.

[wendyoh]

I tried Provigil the summer of 2006 I believe it was......I started out with a 1/4 of dose (which for me is quite a lot actually) and the first week I thought it was really helpful for energy and mind in positive way and was really happy it reduced my pain and didn't need analgesics as much......but then I started having side effects which involved my eyes and psyche. I became incredibly photophobic, and increased photosensitivity has continued to this day but not nearly as severe as it was while I was on it. I tried lowering the dose and coming at it a number of different angles over the summer to try to retain the positive effect, but the longer I was on it the more sensitive my eyes got and then I began to become more introverted and even felt anehdonia at times, was "painful" to try to socially interact except in small groups where very comfortable with old friends. So............that was a bust. A guy friend of mine with CFS and depressive type issues has loved it and been on it for years but he has excellent tolerance to chemicals compared to me, he is also on gabapentin and couple other things with it for sleep etc

[wendyoh]

actually too I just remembered, that summer I took Provigil/modafanil I went to my eye doctor because was getting increased dryness eye pain and photosensitivity that I connected to my trial of this med (it was a bizarre photosensitivity--the light bouncing off the silver dials etc on dash if my car felt like blinding radioactive rays on my eyes) and she did schirmers test and what was when I had confirmed eye dryness. It was before had antibody test confirming SJS, I don't recall if I suspected it then. I did have corneal erosion start before modafanil tho, had my first unexplained corneal abrasion ( a painful one!) a couple years before that.