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.

Great expectations

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.

Thanks for reading!

Devin

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Comments

View Comments (7)
  • loosetooth
    3 months ago

    I have been taking Nuvigil for quite a while and have found it very helpful. However, it wasn’t until this article made the distinction between wakefulness and energy as a result of taking it that I realized that yes, there IS a difference, and I should probably stop beating myself up for still not having a lot of energy (or inertia) to gets lots of things done each day. My experience has been that a certain period of time taking my Nuvigil every morning, my mind really revs up. Unfortunately, my body doesn’t get quite that manic or my house would be a lot cleaner .
    Thank you for pointing out this distinction! It was very helpful.

  • Devin Garlit moderator author
    3 months ago

    Thanks so much for commenting loosetooth! It took me so long to really realize that difference. Like you, I would absolutely beat myself up about it too!

  • BethSlusher
    4 months ago

    I never gave much thought to the difference between energy and wakefulness. This was extremely helpful for my perspective. I learn a lot when I read your articles. Thank you Devin.

  • Devin Garlit moderator author
    4 months ago

    Thank so much BethSlusher! It took me a while to think about that difference as well.

  • pbradam
    4 months ago

    Thank you! I have Nuvigil (armodafinil) for fatigue. Like you, I expected energy and was disappointed. Your blog opened my eyes to the fact that it provides wakefulness instead. Now I will try it again.

  • Matt Allen G
    4 months ago

    This is a good Segway into my question; I’ve noticed that it seems that people who have tried both modafinil and armodafinil say that one works for them but the other doesn’t. Obviously this can be attributed to the fact that everybody is different and just because one medication works for one person does not mean it will work for everybody else. But I am curious, have you tried Nuvigil? I definitely don’t feel like it gives me energy but it does make me feel like I need to hurry up and do something even though I’m too tired… It’s weird, and I don’t like it, but it’s one of the only tools I have to work with. Is that how provigil deals for you? Also, when I first started it, it used to make my heart feel like it was going to blow out of my chest!

  • Devin Garlit moderator author
    4 months ago

    I haven’t tried Nuvigil yet. Provigil is a weird sensation at times, I’m awake, but like my eyes are stuck open and my body is running, but still with a lack of energy. I may feel like I should be able to take advantage of it, but if I’m overly fatigue, I still can’t. In that case I’m just there, wide awake, unable to do much.

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