Anyone on this drug and if so is it working for you?
Fatigue is my worst symptom at the moment and my Nuro has promised to give me something for this and as I’ve alread tried Amentadene without success wonder if he’s going to suggest Modifinal as I’m not aware of anything else that has been released to help with it.
any ideas?
Thanks
Ann x
On the basis of my own experience: if you’re offered modafinil, go for it. If it doesn’t suit, then it doesn’t suit, but if it does it can be really good. I’ve been on it, off and on, for years and find it makes life so much easier.
Alison
Hi Alison
yes Fatigue just makes every day things impossible like just Looking around the shops usually get fatigued after about half an hour and then there’s the fatigue with just getting ready to go out with to start with.
Mines not the tired type, I dont feel like I need asleep or anything like that I know some people get this type though. I’m usually ok by just pacing myself but sometimes I just want to do normal things!
I was getting my food shopping delivered as worn out walking are supermarket but found I was staying in more and more and then losing confidence in driving as hadn’t done any for ages so started going again was really nervous first times getting used to the car again I would worry that I couldn’t get parked and stupid other things but after a few weeks I could finally start to relax when driving, but to start with my heart would pound so bad and my hands would shake. Now I’ve come out in hives all of my body not sure what I’m allergic to but something doesn’t agree with me. I’ve just finished 3 days of steroids and I still have them I had to come off my previous medication cold turkey to take them, had no sleep since starting them on Monday until I rang doc who fast tracked me a few sleeping tabs to take which I’m thankful they worked and I slept for 7 hours solid last night he also enclosed another 3 days supply of steroids to take again if they haven’t gone which as they haven’t I guess I’ll have to take them. I gues it’s safe to take them again I could remember exactly what he said being sleep deprived is awful. What if after taking this next course they still don’t go what’s next! I’m red raw from itching tonight I had to get up to focus on something else to break the itch cycle, I’ve not been given any cream to apply to help with the itching and to be honest I wouldn’t know where to start, there are so many to choose from. Sorry I’m going on a bit. How are you today?
Ann x
Hi Ann
Modafinil is, strictly speaking, only licensed for narcolepsy. But neurologists used to be able to prescribe it ‘off label’ for MS fatigue.
The problem is that it apparently caused cardiac problems in some people so neurologists became unable / unwilling to prescribe it for fatigue. It was also becoming abused by people without medical need of it who wanted the extra sharpness it brought to their cognition (eg students doing exams).
But some neurologists are still finding ways of prescribing. If you get it, be aware that for the first few weeks it can cause a sort of teeth clenching edginess, I also felt quite nauseous. But after a month, I had no side effects at all.
As Alison says, if you’re offered it, take it. It does work. And it’s miles better than Amantadine.
Sue
Modafinil, that I have used for the last 15 years now, seems to take the edge of that bl**dy tiredness, so certainly worth a try Ann!
A 22year MS veteran. Been on Provigil for years and it absolutely positively changes your life! It helps you live life because you don’t feel the MS fatigue during the day and gives you a chance to be involved in things and feel positive. It isn’t prescribed for depression however once you begin taking it your depression lessens because your active again. I’m in a wheelchair and it allows me to enjoy my life again.