Perking Up with Provigil
When it comes to the many symptoms that come along with Multiple Sclerosis, crippling, heavy, all-encompassing fatigue is often listed as one of the ones that has the most impact. Our own MS in America survey had 87% of respondents answer that they suffered from some form of fatigue related to their MS. So, it should come as no surprise that those with MS are always on the lookout for ways to fight fatigue. Over my close to two decades with the disease, I’ve tried numerous ways to lessen the life-sucking effects of fatigue. In fact, how I deal with fatigue is often one of the first things newly diagnosed patients ask me about, so I thought I’d discuss one of the treatments I use, Provigil (modafinil). While not a true cure, it has proven helpful for me and I wanted to share some of my thoughts on it. This is in no way an endorsement, remember, all of us react differently to each treatment. However, I believe my discussion of it can be beneficial when it comes to finding treatment for fatigue, particularly when it comes to setting expectations.
My background with fatigue
Like many people with MS, fatigue was an early symptom for me. I went from a vibrant 20 year old to someone who suddenly had the energy of a sloth (they don’t have much right?). Every effort I made felt like it took five times the energy that it once did. When I explained this to my doctors, they mentioned it was common and I started me trying the long list of medications that are often attempted. That long list eventually included Provigil (generic name modafinil, however, this was back when a generic was not available). At the time, it was not widely prescribed for MS and seen only as something for narcolepsy (which, as you might imagine, was a real fun experience when trying to get my insurance to cover it, but that’s another story). I tried it for a good period of time, but it really felt like it didn’t do anything, so I stopped. Over the next decade and a half, I would test out Provigil several more times (with numerous doctors) before I started to realize that it actually did something, just not what I expected.
True fatigue really stops you in your tracks, it swallows you, it traps you, and you want to do anything to get rid of it. This severity of my fatigue and the desire to escape my fatigue often blinded me to incremental improvements. You would think, well, if it’s so bad, wouldn’t you notice any kind of change? I thought I would, but that’s the thing about fatigue; even a medium amount of fatigue can be very hard to deal with. Even when I did have an improvement, I still felt fatigued and I hate that feeling so much, I was often willing to give up. My latest time when I was willing to give it up due to efficacy, I took notes. After weaning off, I also took notes. It was clear to me, not only by looking at my notes but by talking to friends and family, that Provigil did in fact help me. It did not fill me with energy. I still suffer from fatigue and some days it’s unbearable; however, I am much more productive with Provigil. The key thing that Provigil does, is provide wakefulness, which it does well. Wakefulness is not the same as energy, however, it’s still very important when you are tired all the time.
Energy vs. wakefulness
It took me a while to realize that I expected energy and got wakefulness and that was still a good thing. My expectation for a fatigue medication was that it would give me energy and I would feel like the old, vibrant me. That expectation may have been a bit too high for me and clouded my opinion of a medication that was actually helpful to me. It took me many years to figure all this out. Perhaps my doctors could have better explained what I should be looking for, but honestly, when I started it, I don’t think they were all that sure. With MS, doctors end up trying a lot of treatments meant for something else but have hope it will work for us, this is one of those examples.
This story may be about my attempts at using Provigil to fight fatigue, but certainly applies to other medications, treatments, and therapies. Not everything we try may make us the way we were, that’s probably not possible. Doing physical therapy may not help me to run marathons again, but that doesn’t mean that it isn’t beneficial. That doesn’t mean it won’t help me get around better or prevent a fall. Just like Provigil doesn’t give me the energy I used to have, but does help me stay awake and be a tad more productive. Expectations are important when it comes to treatment, it’s too easy to think something isn’t beneficial when we think about the past.
May is Mental Health Awareness Month. We want to check in. How are you feeling?