Riluzole Question

[hgsunny]

My Dad was just diagnosed with ALS. He started taking Riluzole. We noticed that he was able to stay awake a full day recently, when in the past he was so fatigued he couldn't.

Would Riluzole do that? The only other recent change is that he started drinking this super concentrated antioxidant juice.

I am skeptical at times about natural remedies, so I am wondering if it was the Riluzole and not the juice.

Does Riluzole lessen fatigue so that you could stay awake, when in the past you couldn't?

I'm confused, as I thought you couldn't notice the effects of Riluzole.

Also . . . .

1) Does anyone take CoQ10?
2) Does it help?

Thanks.

 

[joelc]

Different things help different people - go with what works.

Everyone is so different there is no right or wrong answer. I may help some and cause problems for others.

 

[BethU]

Hi, HGsunny ... I'm so sorry about your dad's diagnosed, but glad you joined us, as there are wonderful caregivers on this forum who can help you along.

Riluzole seems to have different effects on different people. I have heard from people on this forum who feel beneficial effects, and others (like me) who experienced unpleasant effects. I think most people don't experience anything one way or another. Since there could be two contributing factors to your dad's increase alartness, I'd continue taking both.

Yes, I take CoQ10, and have for several years (before ALS, I took it for my heart). I've never had any good effect from it, but have never had ill effects either, so I continue to take it.

Take care.

 

[Jennifer51]

HGsunny, sorry you need us...when I started riluzole I noticed an immediate reduction in my horrific twitches..still twitch like crazy, but they did reduce...and funnily enough, now you mention staying awake...I would love to snooze in the afternoon, I always used to, since taking very early retirement and lazing in the sun. All the heath professionals and doctors keep asking if I am sleeping during the day and are surprised that I generally dont sleep....I do try to sleep, tv on, recline my chair, hubby sleeps and I just rest, very frustrating. I had not associated it with riluzole but who knows.

 

[DgtofTNfan]

Hi HGsunny.

I am so sorry about your Dads diagnosis and that you need to be here to learn more of how to help him.

My Dad was recently diagnosed with ALS too and started on Riluzole as well. We have seen improvement however he started Riluzole at nearly the same time as getting his PEG/starting tube feeds and the bipap so it would be difficult to differentiate. However I think there is a mental health positive in taking the medicine if does not provide side effects. I am guessing since there is no cure it helps that there is at least a hope that you are trying something.

He tried the CoQ10 but was unable to swallow the pill.

Just my 2 cents.
Dana

 

[JamesMcC]

Hi HGsunny,sorry to hear of your dads diagnosed.Riluzole side effects from their website says it may make you drowsey,fatigued, which it did for me.But everyone is different.I stopped taking it a few days ago and have had so much more energy.I will go back on it soon.I'm off it not by choice just new health insurance gap.I do take CoQ10 400mg/day but can't tell you if it helps.I did my own research on supplements and then compared what I came up with to what different neuros and neuro websites recommended for ALS,then took what was in common.
I take
CoQ10 400mg
Creatine
b12 60mg/day
Vit C ,E ,D
fish oil
Chlorella
mutli vitamin
coral calcium
N-Acetyl Cysteine (NAC)
Beta Carotene
Astragalus Root 12mg/day
Whey Protein drink...60g
My daily protein intake is at least 100g and up to 140g
calories at least 2000/day

take care

James

 

[asantiago]

When my mom started Riluzole she notice an immediate decrease in energy and lost her appetite completely. She stopped taking it and she felt better, had more energy and developed a better appetite. By no means a scientific study or any evidence here, but she decided not to take it an more because she just felt much better without it.