Neurontin and ALS? Head Injuries?

[Blubear]

I am soooooo glad that I ran across this thread! My father has ALS and we do not yet know if it is familial or not. I have chronic pain with herniated dics, fibromyalgia and severe arthritis in my back. I have been on percocet, oxicontin, methadone and am now currently taking opana. The opana helps a little, and I was going to ask the doctor if I could try neurontin for pain again (since it is a non-narcotic) literally this week! I remember when my now deceased husband was taking it after a painful surgery and I tried it and it helped a lot. But with what I have read on this thread, I think I may have dodged a bullet! Thank GOD for this forum!
Blubear

 

[AndyDJX]

My symptoms began within ONE WEEK of starting Elavil (otherwise known as Amitriptyline.) I am not a diagnosed PALS, but I have fasiculations, atrophy and weakness that has been getting worse slowly over the past 3 years.

I injured my neck, then started getting daily headaches so my doctor put me on Amitripltyline. After that I started to twitch and get fasiculations and parasthesia, within a couple months I was getting extremely fatigued muscles after exertion, i.e. I literally couldn't move my finger after playing baseball. Now 3 years later my thenar muscle has a big gap in it, the remaining muscle there constantly quivers, my feet catch on things all the time, my muscles still get VERY fatigued after exertion and I still twitch all over.

The docs say it can't be from my neck injury or the drug, but there is still part of me that has trouble believing the latter because I don't think they know exactly what's going on with some of these drugs. I never had neurologic symptoms before other than migraines, then a week after I go on it I starting getting this, whatever "this" is.

Another doc prescribed neurontin for eye issues and all my weird neurologic things, but I never took it.

 

[AndyDJX]

Also, I should note that I would never normally post outside of the "Do I Have ALS?" group because I have not been diagnosed (and most of me still believes that this isn't ALS, I just don't know what it is) but I saw this headline and about Neurontin and thought I would mention the fact that my symptoms started after taking a similar drug.

 

[Blubear]

I have been on neurontin and it worked great without any side effects. (not gonna take it now after reading this post however) Amitriptyline however, when I took it made me totally and completely out of it. My skin was yellow, my mouth was dry, I talked with a slur and I felt like I was living in a dream world. My daughter has the same reaction to it. I didnt realize that it was in the same family. Neurontin is actually to help seizures and then they discovered it helped pain, and the amitriptyline was an anti-depressant.....interesting though
Hugs, Blubear

 

[sadiemae]

My husband is on amitriptripyline at nite, no bad effects for him. I cut the dosage down without telling him, and his drooling increased, He is back on the whole dosage now, and drooling has reduced. His neuro prescribed it mainly to help with his sleeping problems and drooling, not so much as an antidrepressant, dosage is low. Lori (I am not an expert)

 

[BarryG]

I tried amitriptripyline for saliva control and I don't even know if it worked because I wasn't on it for long enough to find out. It would make me pass out if I got up too fast. I complained to my doctor and he measured my blood pressure and it was really low, so low that when I got up from laying down or sitting I would fall over. That was it for me, I'd rather drool!

 

[sadiemae]

My husbands blood pressure is way to high, in fact the Dr told us Friday that he was more likely to die of a heart attack or stroke than ALS if we do not get it under control. Lori

 

[Ammycin]

When you have a nerve pain, take Generic Neurontin. It is used to treat nervous system disorders and Seizures in adults with epilepsy. Generic Neurontin is actually to help seizures. I have took Neurontin 300MG for nerve pain.

 

[MtPockets]

I would refer you to a previous post where we discussed this at:

Does anyone know of anyone studying this drug Neurontin as related to causing MND ALS? Here are a few quotes I have found:

It is given commonly for nerve injury to reduce the pain and the company that makes it states that it does not know how it works. But somehow it stops the nerves from relaying the pain to the brain. The reason I am concerned I was on this drug at 2500mg per day for over 10 years due to a spinal injury from a plane accident 18 years ago. If this drug contributed to my ALS in any way it needs to be pulled off the market before others get the same disease.

Here is a partial list of the side effects from the Neurontin website:

"Nervous System:

Frequent: vertigo, hyperkinesia, paresthesia, decreased or absent reflexes, increased reflexes, anxiety, hostility; Infrequent: CNS tumors, syncope, dreaming abnormal, aphasia, hypesthesia, intracranial hemorrhage, hypotonia, dysesthesia, paresis, ystonia,hemiplegia, facial paralysis, stupor, cerebellar dysfunction, positive Babinski sign, decreased position sense, subdural hematoma, apathy, hallucination, decrease or loss of libido, agitation, paranoia, depersonalization, euphoria, feeling high, doped-up sensation, suicide attempt, psychosis; Rare:oreoathetosis, orofacial dyskinesia, encephalopathy, nerve palsy, personality disorder, increased libido, subdued temperament, apraxia, fine motor control disorder, meningismus, local myoclonus, hyperesthesia, hypokinesia, mania, neurosis, hysteria, antisocial reaction, suicide."
I just finished filling out a report to the FDA about how the neurontin had affected me. I doubt that it will do any good, but if anyone else out there is taking it, I would reconsider. It's too late for me but maybe someone else might not have to go through this ALS. That is why I was wondering if any scientist or group is studying this drug.
An interesting thing I found out while filling out the form for the FDA is the company that makes the drug, neurontin, is Pfizer and they do not know or have any idea how the drug works? They said that from their own website. You got to be kidding me.
God Bless,
Big AL

 

[JeffP]

very interesting al but do you really think they will ever get there what has it been over 100 years makes me feel like they really arent concerned because they rate it as a rare disease population control i say

 

[Blubear]

Hey Jeff, you know it just occurred to me, Neurontin really did help me with my pain and it isnt a narcotic. I didnt continue to take it because it made me hallucinate little creepy crawlers all the time. Since you already have ALS, I would give it a try for that pain hun!
Hugs, Kari

 

[joelc]

I started taking Neurontin after I had ALS for a few years. The reason I did is I had the worst itching you could imagine, it has significantly helped with that and I have not had any side effects.

 

[sadiemae]

We were just prescribed this today, and will try it, taking the advice I have learned here. Our next step for pain(since the trigger point injections did not work), is another lumbar epidural on Friday(they did help), then MAYBE a Lumbar Radiofrequency Nuerotomy, also called a radiofrequency rhizotomy. Any info on this? HUGS Lori

 

[Blubear]

Lori! the Rhizotomy is what helped me come back to life, I thought the doc said no? It is so late now, I will call ya tomorrow hun!
Hugs, Kari

 

[sadiemae]

Kari, this is a different doc. I know this is what you had, but the recovery time is not as long as yours was, so maybe a little different. I left you a voicemail earlier, I was so excited! HUGS Lori