Hi and a very happy new year to you all!
I’m curious to hear of peoples experiences with modafinil for fatigue. I’ve been taking it now for over 6 months and I think it’s causing more problems than it’s solving. My sleep is severely disrupted, I suffer with anxiety and I feel short of breath . I think the fatigue is actually worse due to lack of sleep. I will be speaking to my gp this week but I’m just wondering if anyone here has any experience ?
Hi
You need to make sure you’re taking Modafinil early enough in the day. It will definitely affect your sleep if you take it too late.
I used to take one first thing in the morning and the second at about 1pm. That way I avoided sleep disruption.
That wouldn’t help with anxiety and/or breathlessness though. It might be that the drug just doesn’t suit you. Talking to you neurologist or MS nurse would be sensible so they can advise you how to stop taking it (assuming that’s what you do). It’s one of the drugs you should perhaps taper off rather than just stopping.
There is another drug you can take for MS fatigue: Amantarine. You could talk about that?
If you either decide not to take a drug at all, or have already tried Amantadine (assuming you stop the Modafinil) have a look at https://mstrust.org.uk/a-z/fatigue in particular look at fatigue management.
Sue
No personal experience, but this article on the Barts Blog is worth reading.
Hi,
I’ve been taking Modafinil (1 x 200mg a day) for about 13 years. I tried Amantadine first but it made me quite poorly - very nauseous. I can’t really say I’ve noticed any bad side effects of Modafinil but I have sometimes wondered if it’s doing any good. So I’ve tried not taking it a couple of times and the fatigue did hit me pretty hard. I’ve come to the conclusion that, although Modafinil won’t completely rid you of fatigue, it does seem to just take the edge off it. I think you should just wait and see what your GP says next week.
Hope this helps. Xx
I used to take modafinil and found it helpful. I always took it first thing in the morning. These things are always a trade-off of risks and benefits, aren’t they?
It seems to me that good sleep has such therapeutic power that the benefit of any drug that disrupted it would need to be pretty damned impressive. I assume that you do all the usual sleep hygiene things - wind-down before bed, regular bed-time, avoid screen time in the couple of hours before bed-time, don’t eat too late, keep a cool and dark bedroom etc? If there’s room for improvement there, you might try to give your body a better chance. You might like ot talk to your prescriber about, maybe, halving the dose to see whether that helps. But at the end of the day, there’s nothing wrong with deciding a symptom drug just isn’t for you, particularly if you have (as you have) given it a good trial period.
Alison
I took modafinil in the early days and for me it didn’t matter when I took it, it effected me the same way as you, it just made things worse, so I came off it, not all meds suit everyone, shame I know, but that’s a fact.
Jean x
Are they still ‘Prescribing’ this now? I thought that there were some problems with it and it was taken off our list of possible meds, then? Ty Anna
thanks for your replies. I take the second pill no later than 1pm and try to do all the bedtime stuff that I should and still my sleep is disrupted. I’m so tired from lack of sleep that I have no idea how the fatigue is. I will definitely try to come off modafinil and then we can see where we are. I did read recently that modafinil is now considered to be not useful for MS. Unfortunately with the current crises it is difficult to get answers. My MS nurse has been redeployed and getting to speak to my GP is not easy. If I don’t get to speak to someone soon I will do some research and withdraw from modafinil myself.
Clinic told me I can try Modafinil but the feedback from other patients at the clinic was that the side effects far outweigh the benefits.
I tried Amantadine but it did absolutely nothing for me, yet my cousin who also has MS swears by it.
We are all so very different, but all linked together by this crappy disease.
I spoke to my GP and we decided I will come off the modafinil gradually over a couple of weeks and then see where I am with the fatigue. I read the article about fatigue medication vs placebo, very interesting.