For those with fatigue treated by medication-which medication are you on please? Does it work? Many side effects? Unfortunately it looks like I can’t take amantadine as it interacts with my procyclidine so I want to suggest an alternative to the neurologist. Thanks
I took modafinil for years whenI was working. It isn’t a miracle drug but it did help a bit with cognitive focus.
1 Like
Thanks Alison
1 Like
This is from the Barts Blog and might be of interest.
Control of Fatigue a Placebo effect? – The MS-Blog (multiple-sclerosis-research.org)
I’ll have a read thanks 
good question.
modafinil sees me feeling good but actually doing lots of B or C or D grade stuff; not A grade. Not the really important tasks.
caffeine just leaves me wired and shaky.
I don’t have an answer.
I’m currently on Modafinil 200mg morning and 200mg in early afternoon. Now I do have a bit of a backstory on why I’m on so much, nearly can hear the gasp from a few people reading this. Firstly I do have M”RRMS it don’t feel like it though.
This is going on about two years after diagnosis with Rebif nearly wrecking my liver. I was cold Turkey on no medication for MS of any sort for just over a year and did MS do one on me when it got the chance.
Everything and anything started breaking down In a tiny year. It wrecked my bladder, bowel, blood pressure, sexual drive, mood, nerves, eye sight, hearing trouble and especially pain. Pain always was there before diagnosis of MS. For last two years that never leaves now for more than a few hours in between with burning and it’s nearly indescribable to be honest, how it affects your every day mental mood. With days I can hardly sit stand or lye. Which I cannot bear doing as MS robbed me of everything except for my wife and children. I’m really fortunate there.
And anyway getting to here and now why I’m on so much Modafinil I hope some are still here after the previous waffle. This monster MS and the grand finale present it gave me, as a loving parting gift of destruction is Narcolepsy folks. Yes I have narcolepsy caused by my ms in one horrible year. And a further 4 years before getting that diagnosis. I was sleeping everywhere and anywhere without any warning. As I don’t dream at all from this disease now. I also have from narcolepsy Non REM Par-Insomnia where I get up and wander or get up and collapse smashing my head of the bedside unit a few times too many.
So if anyone gets the chance to get Modafinil I can honestly tell you as someone on it. Without this medication I don’t know where I would be now. I don’t sleep while on it throughout the day, when I go to bed I take medicine to stop me waking up and wandering. But seriously it is a game changer for anyone who has any neurological condition as long as you get the original manufacturer not a generic brand.
Now why did I say this you ask? Generic medicines are NOT the same as original in the way they are bind together in the way they are absorbed. Every manufacturer must have a PL Code on the box of medicine you get. If you are getting different manufacturers from month to month and you wonder why you’re feeling horrible from one month to the next? It’s one of your generic brands isn’t agreeing with another. This was told to me by my pain management consultant who is an Anaesthetist Dr. They know their meds better than anyone?
There is a difference people that even Martin Lewis talked about many years ago too. I never paid any attention to it until this consultant told me of this on the PL codes need to match or they are not binding and breaking down like clinical trials even though they have same main medication. It’s how quick it’s released and broken down is crucial to how you may feel from month to month? Keep your boxes if you notice a lot of generic brands in your monthly mess. Then you’ll see for yourself the dangers of mixing more and more generics on top of each other.
This is killing people in the United States all the time. That’s why some meds over there have a black label on them, like Cipro the antibiotic. That nearly drove me insane with anger when on it.
Do hope that helps somewhat in a few different areas. Don’t forget you have the power as a patient to hold Dr’s. Accountable if they harm you. Especially if you ask for a particular brand that agrees better than another. Also get a pain management consultant inside now even if you’re only having pain on ands off. The backlog to see one is immensely long.
Do take care all as this is my first post on forum also.
P.S also just started Sativex after trying for two years to get it for the spasms and pain they bring.if anyone’s on it could they pass on how they feel on it? Bye xo
1 Like