Medication

[PotatoLoafCats]

I am currently on Dimethyl Fumarate and it helps a bit so I'm a bit more active. However, I still have a hard time getting around, and I've been sleeping 20+ hours a day for the past few months. It isn't even good sleep, very interruped. I originally thought it was the Gabapentin I take for nerve pain, but that wasn't the only thing contributing to my sleeping. My physical therapist, who works with a lot of people with MS, suggested Ampyra for motor fatigue and Provigil for the feeing of fatigue. Has anyone been on these meds, one or both? Have they helped with being more active?

[lbenmaor]

I am so sorry you are going through this. Prayers are going out! Leslie

[hopeandgrace]

So sorry to hear. I take Ampyra (the generic kind) and even though it's the "walking medicine" and I don't walk anymore, I find that it helps me with having more energy!

[PotatoLoafCats in reply to hopeandgrace]

I definitely need more energy... I'm sorry you don't walk anymore. That is one of my fears. Is it bad not being able to?

[Xvettech in reply to PotatoLoafCats]

In a word YES!

[hopeandgrace in reply to PotatoLoafCats]

Definitely will depend on your circumstances! I live in a cool part of CA where it doesn't get too hot/ doesn't snow. I have the financial means to drive a car with hand controls and have a stairlift in my home. I have a job where my fatigue is documented from my doctor and my bosses and supervisors are all wonderful and accommodating. I have support from family and friends. Truly, I thank God that even though not being able to walk is heart-breaking, I still can do so much and am blessed. Lifting up a prayer for you - that even if your circumstances aren't like mine, that you have strength to press on and live each day the best you can.

[StacyHayward]

I’ve been on ampyra (generic now) for many years. It helps me a ton!! I take one tablet in the morning and one at three in the afternoon. I went from struggling badly especially after sitting a long time to mild struggles and a much faster recovery in walking when my “get up and go” does go into effect.

I tried provigil once but it made me nauseous. I take amantadine instead. It’s probably not as effective but it does ok.

[Frances_B]

If your sleep patterns and needs have changed to that extent in the past few months you need to talk to your neuro about it, rather than your PT. Even if they do work with other PwMS a PT is not qualified to recommend medications, and the problem should be investigated by your doctor/s to see if there may be some other cause than MS e.g. naroclepsy or ???

[PotatoLoafCats in reply to Frances_B]

I have already talked to Neuro and they sent me to physical therapy. My PT was giving recommendations based on their experience with other MS patients. I've also talked to sleep medicine. No one knows what is making me sleep so much. I had a sleep study and I don't have sleep medicine, but my legs are twitching. So, I was referred to pain medicine to see if they can find something to help. I see them at the end of the month. My PT also told me about this site and a disability lawyer.

[Frances_B in reply to PotatoLoafCats]

OK - it's good that your have already followed up with your neuro. Far too often people just blame MS for things that may have nothing at all to do with MS, but by the time that gets figured out what ever "it" is has become that much harder to treat because of being left untreated - if you get my meaning.

[CatsandCars]

I wonder if it could be depression or something. So many times I've had things investigated, hoping there might be a treatable condition behind the daytime sleepiness, but nope, no luck so far! Although I am up and technically conscious most if the day.

It is always good to have your doctors investigate or rule out sleep disorders or depression.

Provigil really helped me, but its effects didn't last very long. I got 3.5 hours of wakefulnes out of it in which to do things, though, which was helpful. Your mileage may vary, as they say!

Ampyra doesn't work for everyone, but it can really help with walking and heavy legs, and it is a stimulant(as well as some kind of channel blocker), too. So maybe try one at a time?

Absolutely talk to your neuro, and try whatever meds you can. I have a bag of them that didn't work out (side effects) but it's always worth a try! I hope they both work for you! 🙏

[PotatoLoafCats in reply to CatsandCars]

Thanks! I'll talk to my neuro about them. I wanted everyone's opinion on them before I talked to him. I have a ton of meds that didn't work out too. Depression is definitely part of it and I'm on anti depressants. I'm trying to force myself to stay awake and try to go outside, but it is very exhausting.

[CatsandCars in reply to PotatoLoafCats]

I struggle with depression, too. It's not terrible as in I'm not crying 24/7,but it makes life harder. Antidepressants give me awful side effects. I'm trying this new thing called TMS for the first time today. I should probably do a post on it. 😊

Anyway, I'm sorry you're so sleepy and exhausted. It's very hard to deal with, day in and day out.

Listen, I forgot my most useful piece of advice for new people. Check out Dr

Aaron Boster's MS videos on YouTube. He is an MS neuro, and he's kind, funny, and passionate about educating MS patients to help manage their condition. He has a gift for explaining things in a way that's easy to understand, and I've learned more from him in six months than I have in 22 years of having MS.

You might want to check out the newly diagnosed ones, and maybe the medication ones. Everyone is different... I'm sure your doctor had a reason for choosing your medication, and maybe you had input into that choice, but these days studies have shown that starting off the newly diagnosed with a high efficacy medication does a better job at slowing progession. Ocrevus and Kesimpta are popular ones with neuros. They have more potential risks, but many patients willing to accept that to help prevent disability. As one of my friends likes to say of MS, "Hit it with a hammer," so to speak! 😊

[PotatoLoafCats in reply to CatsandCars]

Thanks! I haven't heard of those meds. I'll definitely check out the youtube channel.

[CatsandCars in reply to PotatoLoafCats]

If you have questions, feel free to ask everyone, or you can message me. 😊

[TonyiaR7]

Dear PotatoLoafCats, I have not tried heard alDimethyl Fumarate for MS (DMT). I take gabenpatin for nerve pain. Ampyra is to help with your walking, like if you have foot drop. I have tried Provigil to deal with fatigue. It initially worked. Then I stopped it because it had me awake at wrong times; so my physician took me off. I didn't find it to work consistently. Or there other medications you are taking for your severe fatigue. You need to talk to your neurologist about managing your fatigue.

It can be even a sign of depression or other causes.

I pray you get answers and start feeling better.

[CatsandCars in reply to TonyiaR7]

Dimethyl fumarate is also known as Tecfidera.

[Tazmanian]

I take Ampyra my neurologist says it works

[GreatDanekids]

Make sure you take the Ampyra exactly as ordered, if taken too closely together it can cause seizures. I did this without thinking and ended up being life flighted to a major hospital after coding in the ambulance. A lot of rehab to walk again and never regained total bladder control. You never know…

[PotatoLoafCats in reply to GreatDanekids]

holy crap! thanks for letting me know.