Cognitive impairment and fatigue medications: Methylphenidate (Ritalin), Modafinil, Armodafinil, amantadine

I recently discovered this resources list in the Bateman Horne Center resources website.

https://batemanhornecenter.org/education/me-cfs/

Have any of you tried any of the following? What was your experience?

Cognitive impairment and fatigue medications:

Methylphenidate (Ritalin)
Modafinil
Armodafinil
amantadine

I guess I was intrigued to find something I hadn't tried yet.

 

Not Ritalin but dexamphetamine. I copied most of this from a post from 2020 -
A Trial of Solriamfetol in the Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Joel L Young, 2020

... my experience with 5 mg of dexamphetamine (family member's ADD medication) taken quite often over ten years or so. The alternative medicine doctor I was seeing in the 1990s would have been happy to prescribe it too.

I was able to think fast and get long periods of physically demanding outdoor work done with no effort, but of course paid for it afterwards for days. Another downside was that I ignored joint and muscle pain and ended up with injuries.

The last time I took it the immediate effect was the exact opposite: severe lack of energy and spaced-out feeling. That really frightened me off it for good.

 

Thanks @oldtimer !

I was wondering if stimulants would ultimately be a bad idea. I get revved up and do too much then crash if I even have a cup of coffee.

I do wonder if a little finesse with the right dose might be helpful for times when I truly have to do something... although it might not be any different than caffeine if I just crash in the end.

 

I was prescribed Modafinil and took it every day for quite a long time (can’t remember exactly but at least a year).
It was great and seemed like a miracle. I didn’t have to keep sleeping and the brain fog went away.

But then the side effects took hold - heart palpitations, diarrhoea, sweats. Basically what you would expect if you were taking speed.

I hadn’t really thought about it at the time as I wasn’t as knowledgable about how ME works, but you are forcing your body into overdrive the whole time so it is making your condition worse .

In the end I stopped and it was a huge come down but the right thing for my body.

however I did still take small doses if I had to do something where I needed or wanted to stay alert, such as if I had to drive anywhere further than I normally would, or if I wanted to meet someone for coffee and have a nice chat. In these instances I was happy to take the short term hit.

 

I was prescribed 200 and 400 mg of modafinil a while back, it did help me increase my daily activity and gave me enough energy for part-time remote school work.

But since it's a narcolepsy med it was a bit torturous on bad days when I needed to rest during the day. The medication would prevent me from being able to fall asleep at all until night time, so I was just lying there for hours and hours staring at a wall since I was too tired to distract myself with TV or anything.

I had much better results on vyvanse (dextroamphetamine), which I've been on for several years. Went from being homebound to being able to get out of the house for an hour or two without triggering PEM. Can do school or work for ~4-6 hours a day (non-consecutively) with remote accommodations. Was still prone to PEM if I stayed out of the house for too long, but the PEM was less severe than before--intense muscle pain and fatigue for several hours (usually until the next day), and would have to stay off my feet for the next day or two. Taking a beta blocker at night seemed to help me recover from PEM faster. The only time it wasn't great is if I got into a "wired-tired" PEM state for several days and wasn't sleeping well--then, taking the stimulant made it feel like my heart was going to explode.

Had to play around to find the right vyvanse dosage. Too high and I ended up needing to eat a full meal every 2 hours or I got a horrible migraine and nausea. Too low and I would have enough energy to start an activity but then crapped out in the middle of it. Found a sweet spot around 40 mg.

I've also been on adderall ER 20 mg when vyvanse wasn't available from my pharmacy, worked similarly to the vyvanse but it caused me to crash somewhat whenever I took a shower or did anything more active in the mornings.

Ability to tolerate stimulants seems to be highly variable in ME/CFS. I know others who say it gave them their life back, and some who couldn't even tolerate a tiny dosage.

 

I think stimulants are primarily if you don't need to rest much during the day , if you need to you can't as the on switch is on so I think in MS for example they used to help people in work feel more with it , which is completely different to helping people who are resting a lot get some mental function. My experience was total non-tolerance as a very severe-person