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Fatigue & Treatment

Posted: Mon Mar 01, 2004 10:52 am
by VirtuallyFine
:?:

I was wondering who has fatigue as their worst symptom, and if you are taking any medication to help with it. I am seeing my Neuro in two weeks to discuss this, and I am considering one of the three following medications:
  • provigil (modafinil)
    acetyl l-carnitine (ALCAR)
    pemoline (cylert)
I would really like to hear any opinions or experiences anyone has had with these.

thank you!

Posted: Mon Mar 01, 2004 12:03 pm
by Niko
Fatigue... yuck. That's my worst symptom.

I am currently taking Amantadine 100mg 3 times a day.
It works for me.

My neuro first prescribed Provigil. That worked for less than a week. So he switched me to Amantadine.

Before starting any of the fatigue meds, the fatigue was so bad that every day was a battle. So tired, I couldn't think straight to make a cup of coffee. I could easily fall asleep at the dinner table. Pretty bad.

Now... fatigue is much more quiet. While it does flair up on occasion, it's not forever present.

My body gives warning signs about fatigue. My right eyelid will dip according to the strength of the fatigue. And I will yawn incessantly if I've forgotten to take my Amantadine.

But everyone reacts differently to the meds. Just like MS, everyone is different.

Hope you find something that will work for you,

Cheers,
Niko 8)

Posted: Mon Mar 01, 2004 2:23 pm
by VirtuallyFine
Thanks for your input...I was wondering if you had side effects?
I have ALWAYS had problems sleeping (trouble falling asleep, wake up easily, and then again trouble falling asleep...bla bla bla)...I am also a bit high strung so I don' want to take something that will me be more agitated...

These are listed as side effects:

blurred vision
dizziness
light-headedness
faintness
trouble sleeping

Can you relate to any of these? Any adverse effects you can describe?

Posted: Mon Mar 01, 2004 3:45 pm
by Niko
I have not experienced any side-effects with the Amantadine.

I'm a light-sleeper as well. I get an average of six hours of sleep at night. When I started the Amantadine, it was a gradual process. 1 pill per day for a week, then two pills a day for the second week and finally three a day at the third week. I've not found any problem with the meds and sleeping.

I experimented with various times as to when to take my meds. My days are very long but I try to keep to the clock. 7am, Noon and 5pm. Works for me :)

From my experience, the Amantadine is a fatigue-blocker. It's not something for added energy. But that's my experience. Everyone is different.

Talk with your doc. I'm sure you'll be able to find something that will help you out.

Cheers,

Niko 8)

Posted: Wed Mar 03, 2004 5:55 am
by fightingms
Hi there........I used Amantadine several years ago. It worked for me for about 7 months.........and then nothing.......Fatigue came back with a vengeance.

Over a year ago my Neuro put me on Provigil 200mg. It was great, I felt like a new person, but I could not sleep at night.

I had the dose lowered to a 100 mg. tablet which I cut in half and take 50 mg. a day. It is the perfect dose for me. I no longer feel the need to take a nap when I get home from work.

Also I have no problems sleeping at night like I did with the higher dose.
So, remember, it is not always just the provigil, but the dose of provigil that you may have to play with.

The only side effect I have is Weight loss, which I needed. I am just not hungry at lunch and usually just have a yogurt and a banana or an apple.
Good luck to you..........Kim

thank you Kim!

Posted: Wed Mar 03, 2004 7:43 pm
by VirtuallyFine
Thank you Kim! Every little bit (or lot of bit!) helps me make an informed decision. :D

Posted: Tue Mar 09, 2004 9:08 am
by lottydotty
I took amantidine for one month. It did nothing for me. I just laid around all day. I told my neuro and he put me on provigil. I seem to be doing alot better on that. I also take klonipin to help me sleep.

Posted: Tue Mar 09, 2004 9:22 am
by dawny
I haven't started on any med. I try and control fatigue with exercise. It works most of the time. Dawn

one week to decide...

Posted: Wed Mar 10, 2004 4:24 pm
by VirtuallyFine
one week to decide...

In one week I see my neuro to discuss this fatigue issue (it is causing me to miss work)...was hoping to get some more input on the meds topic...please leave any thoughts ~ all opinions welcome and much appreciated!

Posted: Wed Mar 10, 2004 7:02 pm
by Shayk
Hi vf

I thot I posted a reply earlier this week but now I can't find it, so maybe it didn't work. My computer is acting up...

Ok, will try to make it succinct. I'm the one who voted for acetlyl l carnitine (ALCAR). Unfortunately, my circumstances are such that I don't know what's impacting what so can't be of much help.

I'm on Avonex 3 months, 3 days before I did a round of oral steroids for my first relapse, I began taking compounded HRT, ALCAR and alpha lipoic acid (ALA).

The pharmacist recommended the ALCAR as neuroprotective and the ALA for the numbness, burning, MS hug of left leg symptoms. (It really seems to be working.)

I am taking 1/4th the dose (500 mg day) of the ALCAR used in the Italian study (1 g 2 x a day if I remember correctly.

Overall, I'm feeling much better and definitely more alert.

Since you are struggling with this, you might consider trying the ALCAR at the recommended dose before you see your neuro. ALCAR is readily available over the counter in the US, so I think it would be in Canada too.

Maybe by the time you see him you'll know if it's working :)

Good luck and let us know what you decide.

Sharon

I had no idea...

Posted: Thu Mar 11, 2004 6:43 pm
by VirtuallyFine
I had no idea ALCAR was over the counter - I just assumed it was a prescription drug...thank you for enlightening me...I will look into this over the weekend..

thanks so much!

Posted: Thu Mar 11, 2004 7:05 pm
by Shayk
:oops: I should have put the over the counter info in when I sent in the story.

I'd say check out natural food or health stores for the ALCAR.

There is L-Carnitine, which is easier to find in drugstores than ALCAR.

Search for the Acetyl L-Carnitine.

:oops: Again and don't forget to let us know if it works for your fatigue.

Thanks

Sharon

THANK YOU AGAIN!

Posted: Fri Mar 12, 2004 6:46 pm
by VirtuallyFine
thanks for the info...every bit helps.

I LUV THIS PLACE!

:D

Posted: Fri Mar 12, 2004 7:22 pm
by Shayk
:)

I love this place too! Good luck finding the ALCAR and kudos to the

This is MS Unbiased Web Team...

I'm so new to this MS stuff, but this is by far the best site.

Sharon

Posted: Mon Mar 15, 2004 9:49 am
by lottydotty
I take Provigil wich seems to help. Can you take ALA and ALCAR if your on provigil?