This Is MS Multiple Sclerosis Community: Knowledge & Support

I've taken Provigil. It didn't work for me at all.
I've been taking Amanatine for the last three years (100mg 3xday) and up until a month ago, it worked relatively well.

Now it's as if I'm not taking anything. Fatigue is always present.

Any ideas?

Sleepily,
Niko

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"Avoid making irrevocable decisions when tired or hungry." -- Robert Heinlein

Niko,

My wife has used Prokarin for over 5 years and it has helped her fatigue a great deal. It also relieves several of her other MS symptoms. It doesn't work for everyone but it does work for her.

You can read up on it at www.edmsllc.com and click on the "research" text. It isn't inexpensive but is painless to use (transdermal patch) and you usually know within a couple of weeks whether it will do anything for your fatigue. It can be difficult to obtain a prescription and only certain licensed compounding pharmacists are able to make it. If nothing else is working you might consider it.

Harry

Hi Niko!

Don't forget about ALCAR, that is unless you've already tried it.

It's over the counter in the US.

Sharon

Another med that people forget about is Prozac. It has a stimulate that seems to help with fatigue. It has helped mine.

Have you tried any alternative treatments other than medications? Physical therapies alike? I've heard it helps alot in getting rid of fatigue in MS.

Hi andrea (and all),

Just as an FYI in case no one noticed yet, this thread is from July, 2005, which is 7 plus years ago. There have been lots of older threads bumped lately, likely due to the "suggestions" that appear at the bottom of the screen. Like I said in another post, often it's good to revisit an older thread, but it helps to note the date, since the original question may no longer be relevant to the original poster(s).

I always look at the date first, because I've wasted a lot of time creating detailed responses to posts before and then felt silly when I saw the poster hadn't been here on TiMS for years. And that's why I often note the date on bumped threads.

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Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS or MS symptoms except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)

Hi,

I take coenzyme Q10 as part of a broader approach to staying free of MS problems but I'd be interested if taking it on it's own helps for you.
The critical thing is the quantity. To work out the dose will take a couple of days. Start at 150mg and increase by 150mg the next day and 150mg the following. After that go up in 50mg doses as 450mg is a lot.
Take them just before bed not any other time. If you find you are waking wide awake in the middle of the night then stay around that dose for a while. I expect you will find the fatigue diminishes and the brain fog clears up.
I'd be really interested to see how you go. I do other things as well but I think this should help with fatigue. A healthy person can get the same effect on tiny doses but I think we need a lot.

Regards

I should also say, don't buy a cheap brand. They don't seem to work. Although it shouldn't matter it does. A practioner brand seems to work well.

Regards

Scott - what type of CEQ10 do you use? I use 50mg of Ubiquinol a day. Haven't noticed much difference. Ubiquinol is quite expensive so I have thought about increasing my dosage by adding cheaper ubicarone.

Hi MrBarlow,

I get mine from a chemist shop. The brand I think works best for me is called FitBioCeuticals. It's marketed as a practitioner brand (which is really just hype) so they sell it from behind the counter than off the shelf. It shouldn't matter where you get it from but it seems to make a difference to me.

50mg wouldn't touch the sides. I'm taking 450mg before before bed. We should have this substance throughout our bodies but as peroxynitrite knocks out some enzymes we end up short and are hence short ATP.

As the substance is ubiquitous (hence ubiquitone) the dosage can't really hurt us. Try cranking the brand you take already to, say, 300mg, and see what happens. It took me a couple of days to notice that I slept better and was more refreshed when I awoke.

regards

Thanks Scott. What I'll try is a combo of 100mg Ubiquinol and 150-200mg of Ubicarenone

Ok. I think it's the same stuff.

See http://www.epic4health.com/ubandubareth.html

In Australia it's usually just called Coenzyeme Q10.

I found after a couple of days I felt brighter and more energetic. A couple of people at work tried smaller doses and thought it was very funny when they started waking up in the middle of the night. One of them still uses a 50mg dose in the morning but she has always been well and another girl found a high dose at night helped her. I thought the latter had quite obvious issues with EBV as she had previously had glandular fever and was really struggling with fatigue. Both of them are converts to using it.

regards

Not to rock the natural bandwagon, but a can of redbull (sugar and caffeine) helps me exercise harder / longer; but I am caffeine sensitive, in that a coffee after midday will keep me up all night.

Very different effect to coenzyme Q10

Im in Australia as well. I can't get Ubiquinol here so I get my Dad to send it over from the UK.