Meds for MS fatigue?

[u/RaindropsNGlitter]

So, I’ve been talking to my neurologist about how bad my fatigue has been lately. I did many labs and basically ruled out fatigue from any other factors. It doesn’t matter how much sleep I get, it is so hard for me to get through the day. My neuro just prescribed me amantadine as it has the lowest risk. I’ve been taking it for a couple of days, haven’t noticed a huge difference yet. I am wondering what other people have been prescribed for MS fatigue, and if so, how is it working for you? I understand most of it is off label since there isn’t an exact med to fix this.

[u/Bloatedoldman]

Amantadine was a no go for me. It just didn't work. Recently changed to modafinil and now I only doze of occasionally. I can make it a whole day without a nap more now

[u/tippytoecat → u/Bloatedoldman]

Me, too. Modafinil has been life-changing for me. Now I am alert and have mental clarity all day long.

[u/lillidrawn → u/tippytoecat]

Same for me, modofinil for days I wake up already tired. I try to not take it on the weekends or when I dont need brain power for the day.

[u/waiex66 → u/Bloatedoldman]

Same here modafinil is my hero!

[u/RaindropsNGlitter → u/Bloatedoldman]

That’s awesome. Do you have any side effects from this?

[u/Flatfool6929861 → u/RaindropsNGlitter]

It’s normally given to people with narcolepsy to help them stay awake. Ms people complain about not being able to stay awake. So now we have it. I try and take it first thing my eyes open. It does help me feel more awake in the morning and get going. I’m not sure about all the side effects but I just noticed my heart rate being elevated the first couple days. You could always half it at first to see. It doesn’t make me feel like I’m ready to rage and run a marathon, but I am awake and cannot sleep, even if I wanted to

[u/thekaliebridgel → u/Flatfool6929861]

My heart rate was increased with every dose I took. I used to call it my MS M3th 🤣. Had to stop taking it because I felt so wild. So glad this one works for you 🥳

[u/IAmAnAngryGumball → u/Flatfool6929861]

How long does it help for, is there any issues taking later in the day? My fatigue really kicks in mid afternoon, but don't want to be up all night.

[u/MariekeOH → u/IAmAnAngryGumball]

I can't take it after 11 AM or I won't sleep at night. I only take modafinil occasionally bc it's so potent. I advice you to try it for yourself and take a low dose in the morning with breakfast. For me, the effect lasts all day

[u/Flatfool6929861 → u/MariekeOH]

^^^^yes

[u/IAmAnAngryGumball → u/MariekeOH]

thanks, I ask about it at my next Neuro visit

[u/Flatfool6929861 → u/IAmAnAngryGumball]

You gotta take it before noon or you won’t sleep that night.

[u/lrptky]

Have you had a sleep study? I had severe fatigue but what finally led to the sleep study was terrible morning headaches.

Surprise surprise, I was stopping breathing more than 30 times per night. Now with a cpap I have only minor fatigue and no headaches.

[u/Unusual_Bar_1065]

Modafinil user here but it raises my BP so only when I need to stay awake all day. I love it tho as it’s super good at clearing brain fog as well ⚖️

[u/liquidelectricity → u/Unusual_Bar_1065]

Modafanil is the way

[u/McDego4542 → u/Unusual_Bar_1065]

How long have you been on Modafinil? Ive been about 7 yrs and I think it’s losing it’s luster for me. Im dead ass by 2:00pm at work and it used to last longer into afternoon. I was going to ask neuro for a change if you have any suggestions?

[u/Unusual_Bar_1065 → u/McDego4542]

I’m a relative newbie - I’ve only been in this club for about two and a half years

[u/McDego4542 → u/Unusual_Bar_1065]

Worst club to be involuntarily inducted to. Welcome 😉

[u/Snowfairy7 → u/McDego4542]

Armodadafinil is longer lasting, I think the 150 mg is equal to 200 mg modafinil

[u/McDego4542 → u/Snowfairy7]

Thank you

[u/16enjay]

Caffeine for me...one to two cups in the morning and an iced cold brew in the afternoon if I can't take a nap

[u/Unusual-Sound-3902 → u/16enjay]

I might just say no more amantadine it just knocks me out  one in am lots of coffee to keep me going yet even then, if I am not busy...nappy time

[u/Hannahbalector585]

I tried basically everything, including amantadine and modafinil. I'm on adderall now and its been super helpful.

[u/RekkedNeckRalph → u/Hannahbalector585]

How... They seem determined to keep giving the placebo-nifil.

[u/TamerofMonSters]

I took amantedine for over a decade. I think it helped at first, but it wasn't at the end. IDK if I was just tolerant, or my fatigue advanced passed it. I was told that drug only works for about half the people who take it. And I am sorry, but it's been so long I can't even remember how long it took to start working.

What works for me now is trazadone at night, and Adderall during the day.

If it doesn't work, ask for something else. No need to suffer in silence.

[u/RaindropsNGlitter → u/TamerofMonSters]

My friend takes adderall for her MS tiredness and says it works wonders on her work days. Do you take it everyday as routine, or as needed? I think she takes the immediate release but I know there’s extended release as well.

[u/TamerofMonSters → u/RaindropsNGlitter]

It's not extended. I usually only take it in the morning on work days. If it's been a bad day, and coffee isn't helping, I take an afternoon dose. I very occasionally use it on a the weekend, for special events or kids' sporting events where I need to be present instead of spaced out

[u/kerberos69]

I take adderall and sip on coffee all day till about 4pm to help soften the crash. But it works wonders.

And then I take Flexeril for sleep, so that I don’t wake up in the morning feeling like I ran a marathon overnight.

[u/No-Armadillo-7393 → u/kerberos69]

Do you take IR or XR?

[u/kerberos69 → u/No-Armadillo-7393]

I take XR 30mg

[u/Dramatic_Solution630 → u/No-Armadillo-7393]

I took IR for about ten years. Fairly high dose twice a day at the end. I built a tolerance even not taking it everyday. But 10 years isn’t bad. I’ve been off of it for over a year now and hopefully start it again.

[u/No-Armadillo-7393 → u/Dramatic_Solution630]

Same here but I've been back on it since 2024. I've never tried the XR, I just wonder about it actually lasting because on the IR if I get that 230pm crash I can take my 2nd dose and be alright for the rest of the day.

[u/Turbulent_End_2211]

I take Vyvanse and have adderall for an afternoon breakthrough if I need it.

[u/Fun-Wheel-842 → u/Turbulent_End_2211]

I also use Vyvanse only 10mg when I need it. Works wonders, it’s like the light turns back on in my brain.

[u/Turbulent_End_2211 → u/Fun-Wheel-842]

I take 50mg every day and then 10mg adderal in the afternoon, as needed. I’ve been doing this regimen for about 15 years. It works well for me.

[u/Correct_Wheel]

Doc wrote me a script for Adderall so fast I couldn’t say thanks you.

[u/jarnpil]

Not recommending this route at all, it’s just what worked for me.

Was Rx Ritalin for fatigue, but it wasn’t working — I would just fatigue but with gusto, or in taking the Ritalin, would end up overdoing it, and be in bad shape on top of general fatigue. With a ton of digging around, and checking all my meds a dozen times for every oddball side effect, I landed on the difficult decision to basically get off all my meds except for baclofen and my DMT. I needed a new baseline, and the meds had put 120lbs on me over the course of a year and a half, so like… everything was a mess.

It was the best decision I could make. I got off the Lyrica and Cymbalta last, both of which took weeks and left me feeling wildly strung out. When you get off nerve meds, it can do nutty things to your system on the way out, pain feels worse than it actually is (additionally I have fibromyalgia).

When everything finally was out of my system, I was actually able to start working out again, slowly at first. When I say slowly, I mean insanely slowly. Over time, and with ample weight training, I lost weight but more importantly I put muscle back on that I had lost. More muscle meant I strained less during general activities and had more stamina before needing to take a break.

I would never recommend getting off meds without your entire medical team in support of it, including a pharmacist to help you with titration scheduling, because sometimes my dr would give me a schedule that the pharmacist would wince at before suggesting a much slower one. It is okay to go back on meds you discover you needed — that is not a failure, either.

I’m just saying… that is what worked for me, trying to figure out what of the 12 medications I was on were triggering worse fatigue symptoms, and getting off them if possible. And it did turn out that I didn’t need 10 of those 12 meds, but that’s not going to be everyone’s case, either.

[u/doloresgrrrl]

I take Modafinal as needed. In truth I need it most days, but I only take it when I have a long busy day, or need to really get stuff done. I'm hesitant to take it daily, though I'm not sure why. I do know that some days I take it I have a harder time getting to sleep.

[u/RaindropsNGlitter → u/doloresgrrrl]

I totally get not wanting to take it daily. For me, I love the idea of an as needed med rather than having to rely on it daily but, it’s getting to that point where it’s not just an occasional thing. Ugh. Wishing you well!

[u/4oh4error]

I tried Amantadine but it didn't work, so I use Armodafinil as needed.

[u/here4pain]

I've used Modafinil for the last three years. I like it much better than adhd meds. It usually gives me enough energy without jitteriness or too many problems falling asleep

[u/Turbulent_End_2211 → u/here4pain]

I wish it worked for me, but it has zero effect. It’s like taking a sugar pill.

[u/here4pain → u/Turbulent_End_2211]

I was on Adderall, and Vyanse for over decade before and I hated them

[u/Turbulent_End_2211 → u/here4pain]

That’s too bad. I love them. They help my fatigue and ADHD simultaneously.

[u/Far_Restaurant_66]

I take Modafinal regularly - but try to play on my schedule to take a medication vacation every few months. I usually take off a few days around my Ocrevus infusion.

I’ve been taking it for about three years and if you’re taking regulate definitely buildup and intolerance, and it becomes less effective. I’m at the maximum dose thats advised.

[u/Fine-Ad-8362]

Honestly, Wellbutrin!

[u/SilverHammer1979]

I tried modanifil first but then learned it can make birth control pills ineffective. My neuro switched me to Ritalin and it helps a lot.

[u/splendidgoon]

I used amantadine and it made me feel like a superhero for 3 months then suddenly it stopped working.

Modafinil has never worked as well, but it works. Got me through a crazy 20 hours in 2 days major incident at work. 

[u/Caleb5600]

Let's see Bupropion, Adderall (after Ritalin wasn't cutting it) and ammatadine. Im tired all day with a delicious but you bet your behind that im not able to truly sleep unless its past midnight.

[u/sowinScotty]

Personal schedule will make a difference. I’m not sure of your schedule but if you have the opportunity to take a break before you hit that wall, it may help. One of the other responses recommended Modinafil, I have that in my daily regimen as well and it has been helpful.
Some days of fatigue will be tougher than others and you will have some days of none.

It is a sucky diagnosis to live with, just keep pushing and fighting!

[u/SilentMood6194]

My Neuro has me on daily/every other day b12 and a big dose of vitamin D each week. Is there any vitamins that could help? I also really like how much better I feel on mushroom supplements, if youve ever considered exploring those, I think they might be something to try. Wishing you well!

[u/RaindropsNGlitter → u/SilentMood6194]

You know my neuro was also recommending that I start taking vitamin D too. I will definitely try this!

[u/RaindropsNGlitter → u/RaindropsNGlitter]

Also wishing you well❤️

[u/-taradactyl-]

I took modafinil. Then needed a sleeping pill…

[u/Simple-Boat-4242]

Ampyra and MOTS-C peptide

[u/diomed1]

Low dose Naltrexone

[u/Ok-Wedding4570]

I take 10mg of Adderall one to two times a day depending on the day. I would not be able to function without it. Before I started taking it, I struggled to get up off the couch.

[u/sunsinger99]

My life would be so sleepy and still riddled with naps throughout the day if it wasn't for modafinil 💝

[u/daddy-b-2188]

Co-Q10

[u/ZookeepergameIll7173]

I tried amantadine first and it didn’t help me. I’m on Modafinil now and it does help. I take one in the morning and can take a second in the afternoon if I feel like I’m starting to dip and need it.

[u/Unusual-Sound-3902]

I take amantadine. It makes me groggy. I want to sleep after I take it. Everytime

[u/Ok-Wrangler-9506]

I take Wellbutrin. Prior to it being used for depression, it was and still is used as a smoking cessation drug and has a mild stimulant in it. Been on it for 10 years and it really helps me function with the fatigue.

[u/Designer-Buffalo8644]

Bupropion (wellbutrin) keeps me functional. It doesn't remove the fatigue, but it makes it tolerable.

[u/BubblyBear0]

For me its all about my sleep… though, vitamin D seemed to help for a bit too.

[u/Hawkgirl8420]

Ritalin works wonders for me. And power naps at lunch on very bad days.

[u/Pure_Perspective6919]

Surprisingly what worked long-term for me is long-term low-dosage aspirin (100mg), it has been efficient and consistant for brain fog and fatigue.

[u/Witty-Atmosphere-211]

Amandine made me irritable. Adderall works, but it interferes with my sleep so I don’t take it every day. I just had a script for Modafinil to start this weekend. Heat intolerance and fatigue are my two main symptoms.

Edit. Last time I took Amantadine was when I was exposed to Influenza. I didn’t get sick.

[u/thesparkqueen]

I also take Modafinil and it has been quite good. I have an appointment with my neuro in a few weeks and I intend to ask her about it, as good as it has been I think I need something a bit stronger (or a higher dose). It wears off for me by midafternoon.

[u/lilfuzz]

After trying most of the meds listed above ended up settling on 21mg nicotine patches. Its helped me immensely, and unlike smoking or nicotine tablets it's a consistent dosage throughout the day. $15-17 bucks for a 30 pack though effectiveness is different for everyone