Jen DeTracey shares stories about the three medications she took to reduce her fatigue. She also shares a truth bomb about these medications as well as what they are actually used for other than MS fatigue.
I'm going to share with you MS fatigue medication pros and cons. Then my experience of taking medication to help improve my situation with MS fatigue. I'll talk about the side effects, the benefits and the negative side of things. I'm going to truth bomb something to you. I'm going to share the three medications I've used.
I wake up in the morning with fatigue and I go to bed with fatigue. And one of the things that I tried were different medications to boost up my energy because we live with MS.
Our little electrical wires in our brain are attacked by the MS. It means that we have to work so much harder just to do the same things energy wise than others. Energy management can be a challenge. That's why medications are prescribed by neurologists.
The reality is that we can do a lot of different things to deal with the fatigue today. I'm simply talking about my experience with these medications for MS fatigue in this blog post.
But first here's the truth bomb. All medications that are prescribed for MS fatigue are not approved by the FDA for this specific usage. What they're called "off label drugs." This means in the USA that price for a prescription of any of these medications is more than if you are using them for their oriental purpose.
Now I'm going to go through each one on the specific purposes as to what they were initially to be used for, and how there have been studies around which of the three drugs that I've taken seems to be the most common and the best that is prescribed to help MS fatigue.
The first medication is called amantadine. Amantadine is an antiviral and it is used in some cases for some types of flu, as well as for Parkinson's so very different than MS fatigue. Neurologist discovered this by giving it to people with MS fatigue that it had a little bit of a spike in their energy levels. Supposedly there have been many studies done on amantadine, and there's no one study that really indicates that it's super effective.
That was the first medication I was on. And I'll come back to my experience.
The second medication is modafinil. Narcolepsy, is the first reason this medication is prescribed. I remember having this math teacher when I was in college. I was taking statistics. Anybody take statistic? He would get up and teach him. Then he'd sit down in his chair and he would fall asleep and start snoring. Narcolepsy is when people fall asleep at the drop of a hat during the daytime or evening. The second reason is for shift workers who constantly change shifts and need to stay awake.
The third medication is Vyvanse. It is used for ADHD. It creates greater focus by slowing down the brain. It's actually a stimulant and amphetamine, but has a reverse effect on kids by slowing them down. It's also used for people that are stuck in the habit of binge eating.
Amantadine was the first prescription medication that I took. With any of these medications, it recommended that you take it early in the morning. Otherwise you're going to have difficulties sleeping at night. That is one thing that you do not want to have happen. You know you want to have energy during the day, but you want to be able to sleep at night.
I did notice a little pop of energy. I took that for about six months and it worked really well. I think the first month it was pretty good. And this is early on in my MS diagnosis, I'd say about two years in. I took it and it felt okay. It didn't upset my stomach or anything like that.
I didn't have any side effects from it whatsoever. Yet over time it didn't really do anything. So I went back to my neurologist. She give me Modafinil.
When I used to go to MS support groups, this seems Modafinil is the most commonly precribed. It's really interesting because sometimes I have a weird reactions when I take medication. I experience reverse effect. And so I took the Modafinil it was in the morning before going out to a party in the afternoon. I wanted to have more energy. I knew I was going to be around a lot of people.
Can I handle going to this party with fatigue? It was my first time taking Modafinil. I think that was, you know, a clue do not take a new medication for the first time when you're going out somewhere. Try it at home first. That's my advice to you. So I took Modafinil and what happened was I started to get this in anxiety which is one of the side effects.
Internally, I started to feel really freaked out. So I decided it was time to leave the party. I think I might've been there for 45 minutes to an hour, but it just really messed up my system. After that, I did not take any Modafinil. I do not need to have additional anxiety in my life.
So you might be in the camp where Modafinil is going to work great for you like many others. You might have intense side effects like me.
The third medication I took to help MS fatigue was Vyvanse. I have to say the first day that I took Vyvanse, I felt so high and so energized. It was wacky. I was like, oh my goodness. I happen to be out for a bike ride.
Usually I have fear going down this one hill because I had had many bike accidents since my MS diagnosis. having an accident. In this case, I had gotten to a point where I was feeling more confident about it, with the exception of this one hill. And so, as I was going down that hill, I was like, yahhhhhhhhhh.
It was so wild, my confidence, my energy, my unstoppable state of being. You'd think from that, I would still be on that medication now. Note, at the time it was probably three years after living with MS. It was after I'd gone through the others medications for MS fatigue.
But here's the thing, I was to start at 20 milligrams a day and then after a month, move up to 30 mg a day, and then up and up and up from there. What I found is that it was hard, even if I took Vyvanse in the morning to fall asleep at night.
In fact, I was having naps every afternoon. When I'd go to lay down for my nap around two o'clock,
I couldn't sleep. I was still buzzing. At the same time, I also felt the beginning of a very heavy fatigue coming on. It was like a contradiction. I'm tired. I want to rest, yet there's buzzing happening in my body and brain.
I thought, okay, I'll just try Vyvanse for three, four or five days and see how it goes. But as I took it each day, it became harder and harder for me to sleep at night.
It was disappointing. But I have to say, I was quite out of control on that medication. I was unstoppable until I crashed but couldn't sleep. You and I know that sleep is so important to function wiht MS. So if I'm not sleeping, as I'm building up this drug in my system, then it scratches Vyvanse off my list as an option for reducing fatigue.
After that, I decided that I was not going to go on any more medication. I'd gone through the three key medications: Amantadine, Modafinil and and Vyvanse. I these are not for me.
I'm going to find other ways to manage. This is what I started to focus on and will share in another video and blog post.
Jen DeTracey is the founder of Women Thriving with MS and a certified coach. Women Thriving with MS is an online community for women living with MS. You can join the private Women Thriving with MS Facebook group it's free and YouTube channel. Jen offers online courses, a membership and coaching.
Jen's been living with multiple sclerosis for over 11 years. She went through this process of surviving with MS to striving MS to thriving MS. She is a guide, coach and teacher who helps you move forward on your journey from surviving to thriving with MS.
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