Old 10-27-2015, 09:58 PM #1 (permalink)
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Default Energy Drinks for Fatigue

I am guessing this has probably been discussed before, but is it ok to use energy drinks while taking rilutek? I am having huge issues with staying awake during the day and have started using energy drinks. They work but I do remember something about caffine and rilutek not being good for you.
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Old 10-27-2015, 10:12 PM #2 (permalink)
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Default Re: Energy Drinks for Fatigue

http://www.drugs.com/cdi/rilutek.html

Caffeine may increase the actions or side effects of Rilutek. Avoid large amounts of caffeine-containing foods and beverages, such as coffee, tea, cocoa, cola drinks, and chocolate.
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Old 10-27-2015, 10:14 PM #3 (permalink)
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Default Re: Energy Drinks for Fatigue

Caffeine can increase the blood levels of riluzole in your system which could cause more side effects or possibly stress your liver. I have never seen or heard a recommendation for a maximum amount of caffeine a day but those energy drinks can contain a lot.
Are you possibly having some breathing issues? perhaps that is part of it. I also find I get very tired though and my breathing is still good. My take is I use so much energy doing small things.
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Old 10-28-2015, 06:23 AM #4 (permalink)
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Default Re: Energy Drinks for Fatigue

Perhaps you need to just rest more and do less. I cant imagine those drinks are good for anyone
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Old 10-28-2015, 11:18 AM #5 (permalink)
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Default Re: Energy Drinks for Fatigue

Vincent, I recently started a thread about dramatic change in my level of fatigue. I can't speak in regards to riluzole as I opted out for the time being.

However, I was given loads of good advice here regarding fatigue and encouraged not to take energy drinks but to rest more instead. I figured if I popped energy drinks, I could continue to push as hard as I have been doing. The irony is that pushing too hard is the major contributor of my relentless fatigue.

I too have problems staying awake in the day. How well do you sleep at night? For some reason, I get woken up every two-three hours every night. Thus, I don't think I'm getting a solid sleep and I am assuming that is tied to my daytime sleepiness.

This past week, I've tried to go to bed an hour and a half earlier. I've been sticking to a precise time, whereas before it was random. I think its helping a bit. I'm still exhausted but have only slept once during the day in the past seven. Food for thought. Wish I had more advice.

We are getting lashed with the tail end of Hurricane Patricia. Are you getting it in Barrie?

Cee xx
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Old 10-28-2015, 03:23 PM #6 (permalink)
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Default Re: Energy Drinks for Fatigue

Energy should be gained by taking in calories.

Energy drinks stimulate the pituitary glad to release a hormone to stimulate the adrenal gland to produce adrenaline and cortisol. These chemicals are meant to allow us to respond to imminent danger, not give us the energy to carry on past fatigue.

Add to this that in ALS you are consuming calories at a super rapid pace, and if you are not sleeping well it's not surprising you are fatigued.

You need to think about the long term and sustainability. If you want to stick around as long as possible with the best quality of life possible then you need to:
1. take in heaps of calories, conserve energy and
2. let go of doing things you don't have to so you can put your energy into the things you enjoy most.
3. sleep as much as you can when you can - if you don't sleep well at night try taking power naps through the day - 15 -30 minutes. If you have a bipap always power nap with it on to give you a good O2 infusion and CO2 clean out.

ok I feel like I'm lecturing like a mum now lol
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Old 10-28-2015, 07:28 PM #7 (permalink)
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Default Re: Energy Drinks for Fatigue

Thanks for the replies. I thought I was doing something too easy to be good for me. I guess I'll just have use the bipap more and see what that does. Other than foot drop and a 50%ish FVC I'm in pretty good shape. If I can just get a handle on fatigue.
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Old 10-30-2015, 06:19 PM #8 (permalink)
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Default Re: Energy Drinks for Fatigue

There is a drug that helps with fatigue, its called modafinil: Fighting Off Fatigue | MDA/ALS Newsmagazine
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Old 10-31-2015, 03:48 AM #9 (permalink)
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Default Re: Energy Drinks for Fatigue

Really interesting Roger.

I would be concerned still that a PALS may take this, then do more than they should and be paying for it later.

Are any of our PALS using this? I'd be so interested to know how they find it?
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Old 10-31-2015, 07:17 AM #10 (permalink)
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Default Re: Energy Drinks for Fatigue

I do not take it but I do know a couple of people who do. They take it only occasionally for a special event not every day. Which I think is probably the way to use it if you choose to. I do agree that it is important to listen to and respect the signals your body sends but sometimes there is something really important that we want to enjoy.
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