The Trials and Tribulations of MS Medications
“Hey, man, I’m alive. I’m taking each day and night at a time/ I’m feeling like a Monday but someday I’ll be Saturday night.” — Bon Jovi
Multiple sclerosis (MS) medications can generally be separated into two categories: disease-modifying therapies (DMTs) and those that help to manage symptoms. While my approach is wholeheartedly “full steam ahead” for DMTs — after all, they’re designed to reduce disease progression — I am much more reserved when it comes to MS medications and symptom management.
Like the interlacing strands of a cobweb, symptoms also maintain an intricate balance. This becomes even more complicated when medications and their side effects are introduced. Plus, this balance is constantly changing — even down to the minute.
Take mobility, for example. Walking correctly requires the right balance between muscle tone, weakness, and spasticity — and that’s before considering what balance brings to the equation. At any given moment, I have increased spasticity and weakness, along with spasms. Throw in the sensory and pressure changes in my feet, and I have a whole host of uninvited strangers trying to get to know one another at the party. Inevitably, there will be conflict.
The effects of MS medications
I have a prescription for the muscle relaxer baclofen to dampen my spasms. In truth, I rarely take it, and not because I don’t need it. Rather, it throws that fragile combination of symptoms off-kilter for me. Dampening the spasms has an effect on my spasticity, which then shines a spotlight on my muscle weakness. This makes me more likely to fall, which I’d naturally like to avoid. So, it’s no longer about taking a medication because I need it, but rather of constantly evaluating and weighing the pros and cons.
Other things to consider about MS medications are how long the effects last and what side effects they may cause. Baclofen lasts about eight hours, and you don’t have to maintain it every day for it to work. I can handle that. Actually, I prefer it — if my weakness is exacerbated, I know it’ll be back to “normal” later that same day. It’s the medications that have to build up and then be maintained in the body that I struggle with.
After my diagnosis in 2017, I tried taking the anticonvulsant gabapentin for my nerve pain, which along with numbness includes hypersensitivity to pain and sensations of burning and wetness. Oh, and the actual nerve pain, which shoots down one side of my body or down my arm.
These are all caused by overactive nerves firing when they shouldn’t, so gabapentin is designed to slow them down. In turn, this causes a massive cloud of fatigue to descend upon me. At the time, I was blissfully ignorant of how cognitive fatigue felt.
I was still working at my job, but gabapentin turned me into a zombie and I could barely function. I ended up needing to take time off work because of the fatigue side effects. I asked myself: “What’s the point of taking something that forces me to take time off work due to the side effects, rather than the symptom I’m trying to treat?” I couldn’t justifiably answer this, so I stopped taking the medication.
Jumping through hoops for MS medications
Fatigue is one of the symptoms I particularly advocate awareness about these days, specifically cognitive fatigue. For me, this has been the most significant adjustment I’ve had to come to terms with. When the black clouds truly descended upon me in 2019, I was prescribed modafinil. Other than the prescription I have for baclofen, this is the only other medication I take for symptoms management. Here in the U.K., modafinil is a controlled medication, so there were hoops to jump through before the prescription materialized, but it was worth the wait.
My experience with modafinil had been fairly positive until recently, when it slowly became increasingly less effective. It still causes insomnia, as it lasts for 15 hours or more depending on the dose, and I can vary the dose depending on the day in question. Yet, the safe haven I used to find with modafinil in terms of focus and concentration has since evaporated. I am currently in a weird limbo between waiting to start amantadine instead and continuing to take modafinil to reap its now minimal benefits.
Returning to the previous internal tug of war between the pros and cons in terms of fatigue, I will never consider leaving fatigue untreated for the simple reason that my mind is who I am. It is central to my ability to have conversations and interact with people. It is necessary for me to pursue a degree in neuroscience. It drives my creativity, and without it, I would be an empty shell. And that is something I will fight to never have to experience again.
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.