The Double-edged Sword of Fatigue Medications

“I close my eyes/ Only for a moment then the moment’s gone/ All my dreams pass before my eyes, a curiosity.” — Kansas, “Dust in the Wind” 

The dark cloud of fatigue first swept through my mind toward the end of 2018. I was no stranger to physical fatigue, but cognitive fatigue? This was merciless.

Just like every other symptom associated with multiple sclerosis (MS), cognitive fatigue affects everyone differently. It has been a particularly challenging symptom for me to navigate purely because it can manifest in so many ways. Alongside the mental impact of feeling like the essence of who I am was evaporating, I’ve dealt with the frustration of being unable to remember simple words and forgetting I’ve paid a bill two days ago, only to try paying it again.

I’ve written about how my perception of the world has been affected. My feeling for time has altered, and I constantly feel like reality is just a touch out of my grasp — elusive, like dust in the wind.

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Remarkably, when I was experiencing a paralyzing MS relapse in 2018, I hadn’t yet been introduced to the masked thief of fatigue. In some ways I’m thankful. As I watched the seasons change from my red armchair — unable to move, let alone leave the house — I was grateful to still have my mind. I could still focus on television shows enough to watch something I’d never seen before and not get confused about the storyline. I could concentrate long enough to read a book without forgetting what was on the previous page. I could see a friend and not need to sleep after only two hours of catching up.

These are all things fatigue now has to answer for.

At the end of 2018, when I began experiencing these problems, I was lucky to be recommended modafinil, often known elsewhere by the brand name Provigil. This wasn’t without its obstacles, however. I was able to get it through the U.K.’s National Health Service, but it took some time because it is a controlled medication.

At the time, it was faster to get the prescription directly from a neurologist, which meant a trip to the hospital, an hour away in the next county. Eventually, after navigating through bureaucratic red tape, my general practitioner (GP) was finally able to prescribe it.

All was well until last summer, when I’d commenced studying for my master’s degree in neuroscience and attended the European Patients’ Forum in Brussels. It turned out modafinil wasn’t a perfect fix. There were days when it would keep me up with insomnia without the added benefit of the concentration and focus it usually gave.

Then I noticed the haze gradually creeping in again; my body began to feel heavy, and words were forgotten. Slowly but surely, I was having more days when this was the case — until it felt like the only thing modafinil was doing was keeping me awake without being able to function.

The dosage was increased, to no avail. As it’s recommended not to take it daily to maximize its efficacy, I would feel like I’d been hit by a truck on my days off . I view taking the medicine like it’s a balancing act, and what’s the point when the good days were barely passable and the bad days were really bad?

In January, it was decided that I should cease taking modafinil and try amantadine, also known under the brand name Gocovri. Following the usual delay (mainly because of a house move and changing GPs), I recently received my prescription.

I’m not sure what I had expected, to be honest. I knew I was unlikely to feel the same as in the early days of taking modafinil, since the medicines work in different ways. So far, it feels gentler than modafinil. It’s lifted the weight of fatigue, and I feel lighter. It’s very much separated fatigue and day-to-day tiredness in a way that modafinil didn’t.

At least for now, it appears that the fog has begun to dissipate.

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.