drugs and side effects

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gjbuddy

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Sep 11, 2013
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15
Reason
PALS
Diagnosis
07/2013
Country
US
State
ohio
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Cap City
I wanted to find out if others have had side effects from Riluzole and Neurontin. I was on both and now off both. I went off one at a time to try and figure out where the side effects were coming from. When I took the Riluzole in the morning, within 30 minutes, I could hardly walk. I was numb all over and my eyes half closed. I looked like I was drunk. I am still working so I could not take and drive. I stopped taking it. I also started having dizzy spells when getting up from a seated position and my ankles were swelling. That is a side effect listed for Neurontin. So I stopped taking it. I guess, if these drugs are not necessary, I don't want to feel worse for the time I have left. Any others with side effects?
Thank you!
 
Never took any Neurontin so I can't comment

On Riluzole for a bit over 2 years now.........never any side effects
 
I probably won't be working much longer so maybe I'll give the Riluzole another try when I don't have to drive. Can you tell whether or not it's doing anything for you?

Thanks for the info.
 
On Riluzole since 8/2013, never any side effects that I know of.

>Can you tell whether or not it's doing anything for you?

nope, Sandy gives me a collection of 'em twice a day, I just consider a twice-daily swallow test:

ProCardia XL 60mg TAB 1 tablet by mouth every 12 hours Hypertension
Losartan 100mg TAB 1 per day by mouth Hypertension 6/6/2012
Low Dose Aspirin 81mg TAB 1 per day by mouth Hypertension 10/31/2012
Allopurinol 150mg TAB 1 per day by mouth Gout
Riluzole 50mg TAB 1 tablet by mouth every 12 hours ALS 9/17/2013
Baclofen 20mg TAB 1 tablet by mouth twice daily Muscle cramping 9/1/2013
Glycopyrrolate 1mg TAB 1 tablet by mouth every 6 hours as needed Secretions (excessive saliva) 9/1/2013
Centrum Silver Men 50+ TAB 1 per day by mouth Over the counter multi-vitamin
Vitamin C 1000mg CAP 2 x per day ALS 10/1/2013
Vitamin E 1000 IU CAP 2 x per day ALS 10/1/2013
Vitamin D3 2000 IU CAP 1 x per day ALS 10/1/2013
Folic Acid 800 mcg (0.8 mg) TAB 2 x per day ALS 10/1/2013
Dexilant 60 mg CAP 1 per day by mouth ALS 1/13/2014
Tussin 30 ml Liquid 3 x per day ALS 1/13/2014 1/20/2014
Mucinex 1200 mg Gel tab per day spread over 2 to 3 doses ALS 1/13/2014
 
My side effect from Neurontin was extreme anxiety attacks. That's pretty funny because my staff used to say I gave them anxiety attacks. I do have some peripheral neuropathy and I'm taking amitriptyline at night, which has the great advantage of knocking me out, helping with the peripheral neuropathy and helping with the depression that I think is normal with ALS.
 
I have been using Riluzole for 6 mos or so and never had any side effects. I never used Neurontin so I can not comment on that.

Rick
 
I'll give the Riluzole another try when I don't have to drive. Can you tell whether or not it's doing anything for you?

Thanks for the info.

Tough to say if it does anything or not.........it certainly won't make you feel any better. It's been said that it works to slow the progression, but I can't say for sure. My progression has been on the slower side of the scale but I can't guarantee that it is because of the Riluzole. On the off chance that it does something I'll keep taking it.
 
My PALS took Rilutek for 3 years before stopping last month. No difference as far as we can tell. No probenm taking it. He also takes Nuerontin for Tigeminal Neuralgia (2700 mg/day), and that has left he tired and mentally scattered. We are not sure how the Neurontin has affected his ALS, since he began the Neurontin a 16 months before the ALS diagnosis.
 
That is a high gabapentin dose, Will. Typical research max is 2400. Has he tried the ER form, its newer cousin (pregabalin/Lyrica) and/or another AED? Several are effective in TG.
 
That is a high gabapentin dose, Will. Typical research max is 2400. Has he tried the ER form, its newer cousin (pregabalin/Lyrica) and/or another AED? Several are effective in TG.

Yes this is a high dose (although Docs give up to 3600 mg/day in Trigeminal Neuralgia situations). Since my PALS had a allergic reaction to Tegretal, Lyrica and newer related drugs are probably not going to work.

Our big question is: Does Neurontin act as an antiglutamate inhibitor (like Rilutek), and if we go off Neurontin, will that affects my PALS progression unfavorably. We don't want to rock the boat, but we are tired (excuse the pun) of the side effects of the Neurontin. And the brain operation will eliminate the need for any Neurontin.

That is our dilemma; cure the Trigeminal with surgery, risk accelerating the progression with ALS.
 
I'm having some of the same problems take Riluzole. I have tried it for 4 weeks, three different times with the same results. Extreme weakness and my legs feel like I'm walking with water boots on. I have just gotten off of Riluzole last week and feel much better.

I will talk with my Doctor on the 24th of April.
 
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