I think I’m just an over-optimistic person - you were exactly on the mark about that study Karen, it was pants. It would be so lovely if an existing drug stopped progression but I suppose life’s not like that.
Anyway, I started on the Modafinil this morning and I feel absolutely brilliant. I had an hour with the physio this morning and am still feeling fine, rather than lying shattered on the sofa, which is where I normally am after my time with her.
Here’s my update on Modafinil, for anyone interested in this drug. I did seven days on 100mg a day and then went up to 200mg a day, a week ago. It has been absolutely brilliant for me. I feel like a different person. Not just less sleepy and with more energy, but happier as well. I did have a few days when I was a bit on edge and snappier with the children but that went away once I was aware of it (my husband pointed it out). Physically, I’m no better - a bit worse if anything (I think that’s just the ups and downs of the disease). But I’ve been getting loads more done, mostly because I’m more motivated to do stuff but also because I’m only sleeping at night and I’m up and about all day. No side effects to speak of, except a bit of a weird appetite suppressant thing, where I don’t feel hungry but if I miss a meal I get a horrible headache. I love this drug.
I’m retired with secondary progressive MS and I seem to spend a lot of time sitting around, but if I try to read a book I just fall asleep all the time, same with TV! Over the years I’ve been given tizanidine, baclofen, diazepam and Sativex for spasms but they all leave me fuddle headed and even more tired so I try to get by without them.
I read MJ Hyland’s article in the Guardian (May 3, 2013) and, feeling I had little to lose, bought some Modalert 200mg on the internet from what looked to be a respectable web site. The last order came to about £6 per 10 tablets plus £5 p&p and took a few weeks to arrive (was opened by customs too!). I’ve been taking 100 mg every morning for about a month now and the effects are good. Initially my head was a bit like I’d had a coffee overdose and my mouth was dry but that improved and my wife says I am much better company now and I no longer fall asleep constantly. I also finish a lot of those little tasks that I felt too drained to complete before. I also feel my mobility is improved and have a much more positive attitude now.
Next move is to try and persuade my Neurologist and GP to prescribe it. I wouldn’t recommend buying off the internet but it has so far been a turning point for me.
Modafinil is a stimulant that keeps you awake and puts off the need for sleep. It has legitimate medical uses and is also used as a “lifestyle” drug. There are no side effect using this medicine.It has been proved that it safe to use it when ever we would like to take it…