NeuroTalk Support Groups

NeuroTalk Support Groups (https://www.neurotalk.org/)
-   Multiple Sclerosis (https://www.neurotalk.org/multiple-sclerosis/)
-   -   Finally did it. (https://www.neurotalk.org/multiple-sclerosis/103092-finally.html)

karousel 09-15-2009 03:30 PM

Finally did it.
 
I broke down and asked my neuro for something for my fatigue today at my appointment. He prescribed Amantadine. He also wants me to go for an MRI since it's been three years. He just wants to make sure the fatigue I am experiencing isn't just MS activity going on that is presenting itself as fatigue. I'm dreading the MRI :Noooo: because I can't stand to be trapped in that tube. But I gotta do what I gotta do.

My appointment was at 10 but I didn't get to see him until 11:45!!! One of the neuros passed away a short time back and they are short handed. There was another neuro that sat in on my appointment and I guess he's the new neuro. Hopefully I won't have to wait this long again next time I go in six months!

Dejibo 09-15-2009 04:36 PM

I too hate the MRI. I find that covering my eyes helps a lot! I make sure to bring my sleep mask or eye goggles, or have them put a wash cloth over my eyes BEFORE they snap on that head thing. :eek: With a bit of Xanax, or some Ativan, i can usually get through it.

Glad you got something for the fatigue. :hug:

SallyC 09-15-2009 06:44 PM

I loved Amantadine. Since I have been using LDN, I don't seem to need it any longer. A is a nice anti viral, too.:)

karousel 09-15-2009 06:58 PM

My neuro explained it used to be used for the flu before Tamiflu (??) came out. He stressed it is not good for Swine flu. He said it's been around for a long time.

He was reluctant to prescribe it to me - I have to really push him to prescribe anything! I'm glad he did and I hope it works for me.

Niko 09-15-2009 07:10 PM

Quote:

Originally Posted by karousel (Post 566729)
I broke down and asked my neuro for something for my fatigue today at my appointment. He prescribed Amantadine.

You might want to keep a journal/diary of how you react to the Amantadine i.e. hour you take it, the dosage and when you notice a difference or not

The reason I suggest that is that there are several anti-fatigue meds. out there are everyone reacts differently.

I've taken Provigil, Amantadine (separately and together), now just on Ritalin-SR.

I wish you well!

Niko:cool:

karousel 09-15-2009 08:19 PM

Niko - thanks for the idea of keeping track of when I take it and how I feel. I will do that!

Twinkletoes 09-15-2009 10:10 PM

What a Co-inkydink!
 
I started Amantadine today too! :p

Probably a good thing I had to go pick it up, because I had a nurse look at my ears while I was there: ear infection. :eek: Bleh.

My hearing lately is similar to when you're underwater and everything is muffled. The antibiotic should help that.

I take LDN and it did give me a measure of energy. But lately I'm just tired of being tired, so I asked for something from my family doc. It was the PA who suggested it and I'll be very happy if it gives me an added boost.

Hope it works for you, too, Karousel! Good luck with that MRI. :hug:

Twinkletoes 09-15-2009 10:18 PM

Oh, phooey. I just found info on this site http://www.geocities.com/HotSprings/...ations-ms.html

that says Amantadine only works in about 33% of people (it was referring to MSers who needed energy).

Well, maybe we'll get lucky!

PolarExpress 09-16-2009 12:02 AM

Good luck to both of you with the Amantadine!

jackD 09-16-2009 12:30 AM

Dreams
 
Amantadine caused me to have VERY VERY VERY vivid dreams.

They were so vivid that I could not seperate dream events for real ones.

I found myself quoting some "long dead" folks on "current events".

Had to stop taking the Amantadine.

jackD

p.s. Started taking some Acetyl-L-Carnitine next.
.
.
1: J Neurol Sci. 2004 Mar 15;218(1-2):103-8.


Comparison of the effects of acetyl L-carnitine and amantadine for the treatment of fatigue in multiple sclerosis: results of a pilot, randomised, double-blind, crossover trial.

Tomassini V, Pozzilli C, Onesti E, Pasqualetti P, Marinelli F, Pisani A, Fieschi C.

Department of Neurological Sciences, University of Rome "La Sapienza", viale dell' Universita 30, Rome 00185, Italy.

Treatment with acetyl L-carnitine (ALCAR) has been shown to improve fatigue in patients with chronic fatigue syndrome, but there have been no trials on the effect of ALCAR for treating fatigue in multiple sclerosis (MS). To compare the efficacy of ALCAR with that of amantadine, one of the drugs most widely used to treat MS-related fatigue, 36 MS patients presenting fatigue were enrolled in a randomised, double-blind, crossover study. Patients were treated for 3 months with either amantadine (100 mg twice daily) or ALCAR (1 g twice daily). After a 3-month washout period, they crossed over to the alternative treatment for 3 months. Patients were rated at baseline and every 3 months according to the Fatigue Severity Scale (FSS), the primary endpoint of the study. Secondary outcome variables were: Fatigue Impact Scale (FIS), Beck Depression Inventory (BDI) and Social Experience Checklist (SEC). Six patients withdrew from the study because of adverse reactions (five on amantadine and one on ALCAR).

Statistical analysis showed significant effects of ALCAR compared with amantadine for the Fatigue Severity Scale (p = 0.039). There were no significant effects for any of the secondary outcome variables.

The results of this study show that ALCAR is better tolerated and more effective than amantadine for the treatment of MS-related fatigue.

Publication Types:
• Clinical Trial
• Comparative Study
• Randomized Controlled Trial

PMID: 14759641 [PubMed - indexed for MEDLINE]

Niko 09-16-2009 08:59 AM

Like I mentioned earlier: everyone reacts differently ...

keep track of what's going on or not.

keep in touch with your doctor.

My doc. has learned to listen to me :)

good luck everyone!

Niko:cool:

barb02 09-16-2009 09:03 AM

Hope amantadine helps the two of you. Unfortunately, it only made me extremely constipated. LOL! I also tried acetyl - carnitine, but my "delicate" tummy could not handle it. I am such a mess when it comes to meds or supplements!

karousel 09-16-2009 01:35 PM

Quote:

Originally Posted by Twinkletoes (Post 566844)
I started Amantadine today too! :p

Probably a good thing I had to go pick it up, because I had a nurse look at my ears while I was there: ear infection. :eek: Bleh.

My hearing lately is similar to when you're underwater and everything is muffled. The antibiotic should help that.

I take LDN and it did give me a measure of energy. But lately I'm just tired of being tired, so I asked for something from my family doc. It was the PA who suggested it and I'll be very happy if it gives me an added boost.

Hope it works for you, too, Karousel! Good luck with that MRI. :hug:


Twink- that's funny we both started it today. Race you to see if it works...on your mark, get set, go :Zzzz:

karousel 09-16-2009 01:39 PM

33%...phooey...maybe we'll be lucky and be a part of the crowd. Thanks for all the input I will watch for signs of things mentioned. Problem is I'm already loopy, don't need any meds making it worse. :D

Twinkletoes 09-18-2009 10:37 AM

Well, K, you noticed any difference yet?

I'm still battling an ear infection, so I haven't noticed any change in energy. Just tired and lazy most of the time.

My dreams haven't changed. They are vivid anyway because of the LDN, but not disturbingly so.

NurseNancy 09-18-2009 06:35 PM

i hope the med helps you. and twink.

drs need to really listen to their pts more.

karousel 09-18-2009 08:44 PM

Quote:

Originally Posted by Twinkletoes (Post 567874)
Well, K, you noticed any difference yet?

I'm still battling an ear infection, so I haven't noticed any change in energy. Just tired and lazy most of the time.

My dreams haven't changed. They are vivid anyway because of the LDN, but not disturbingly so.

Twink I hope your ear infection clears up quickly. Maybe then you'll notice a difference in energy?

I am so jittery, anxious and restless. My legs, feet and hands are cramping. My dry eyes are so dry they feel like there is sand in the sockets. I have a headache and a stomach ache. I am having difficulty sleeping at night even though I'm exhausted.

It's hard to explain. I am still very tired and my legs hurt and I need to sit down and rest and I just can't do it because I am hyper!!

I don't think this is the medication for me. I called my neuro's office to get some information such as should I keep taking it? Will it work better after taking it for some time? Of course they closed the office early today and it's Friday.

So I decided not to take it anymore. I would rather be tired than feel like this. I'll call the neuro on Monday.

Can you tell I'm a bit over the top right now?? I hate feeling like this.

Twinkletoes 09-18-2009 11:25 PM

Well, darnit! Sorry Amantadine isn't working for you. :(

I was of the understanding that it takes a month or so for the side-effects to let up, but I can see why you'd want to stop taking it, K.

You're such a little person; I wonder if you could take a smaller dose to begin with? I'll be interested to know what the doc tells you.

jackD 09-18-2009 11:37 PM

Purple Legs
 
Amantadine will also cause you to develop some nasty Purple and Red Lower Legs.

i.e. "livido reticularis" - which is a weird kind of blotchy rash thing.

For me it became a permenant thing. I now have some little ulcers from this condition .. 12 years after I stopped taking the stuff. It is worse in the winter time.

jackD

karousel 09-19-2009 12:11 PM

Quote:

Originally Posted by jackD (Post 568134)
Amantadine will also cause you to develop some nasty Purple and Red Lower Legs.

i.e. "livido reticularis" - which is a weird kind of blotchy rash thing.

For me it became a permenant thing. I now have some little ulcers from this condition .. 12 years after I stopped taking the stuff. It is worse in the winter time.

jackD

It's so horrible and scary the kinds of side effects we can suffer from by taking medication to help us. I feel so much better today. Guess I'll just increase my caffeine for now!

karousel 09-19-2009 12:23 PM

Quote:

Originally Posted by Twinkletoes (Post 568127)
Well, darnit! Sorry Amantadine isn't working for you. :(

I was of the understanding that it takes a month or so for the side-effects to let up, but I can see why you'd want to stop taking it, K.

You're such a little person; I wonder if you could take a smaller dose to begin with? I'll be interested to know what the doc tells you.


Twink I don't think I could put up with feeling like that for a month! Let alone a few days. I sure hope it works for you though. I'll see what the office says on Monday.


All times are GMT -5. The time now is 05:14 AM.

Powered by vBulletin • Copyright ©2000 - 2025, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise (Lite) - vBulletin Mods & Addons Copyright © 2025 DragonByte Technologies Ltd.