Neurontin and ALS? Head Injuries? - Page 2

kylisa · 06-18-2009, 09:31 PM

Gosh, my mother never had a head injury or took neurontin. Now, in the late stage of this awful disease, she is on neurontin, which does ease some of her pain. She is also taking oxycodone and morphine(as needed). The amazing thing is this: my mother weighs around 89lbs. Even taking 3600 mg of neurontin, 40 mg of oxycodone, and the couple of droppers of morphine per day, she is still as likely to be awake as asleep. The one thing that seemed to knock her for a loop today was when we gave her 1 pill of baclofen. That has made her loopy. The hospice nurse said that mom must be in some really bad pain to be able withstand all the drugs she is getting now.

waterdreamer · 06-19-2009, 02:44 PM

Thanks Al

MtPockets · 06-20-2009, 10:06 AM

If you care to read the thread it is at:
Does Neurontin lead to ALS?

I just wanted to share more information as many of the members have commented about this drug before.

Quote:

Originally Posted by MtPockets

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

joelc · 06-20-2009, 12:24 PM

I just started it because of itching that was driving me crazy. But then I already have ALS so I guess I have nothing to loose LoL.

CB1977 · 07-07-2009, 03:39 PM

My Dr. at clevland clinic just tried to put me on this because I have been in really bad muscle pain. I told him no because since I dont have a dx of anything yet I dont want that to mask or mislead Dr.s at this point. I just take advil all day. Is the itching related to ALS or just something else? Just curious?

I recently saw something about a lake in New Hampshire where there is a pocket where people are getting ALS 50 times more than the regular population. I think it talked about some type of cyanobacteria possibly being a neurotoxin? When I read this I said to my wife- if they find the cause, the cure wont be far behind it.

Cb1977

joelc · 07-07-2009, 04:09 PM

I am taking it for the itching. And yes, itching is a symptom.

MtPockets · 07-07-2009, 07:41 PM

As I stated below, "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.
It gives me cause for concern when you read all the possible side effects.

If it works for you, great. Just wanted to be sure you were aware of the problems associated with this medicine. If you do a search on the INTERNET you will find some lawsuits filed because of this drugs side effects.
For more comments about this drug go to: http://www.alsforums.com/forum/showt...ight=Neurontin

In all fairness I have to say they also do not know how ASPIRIN works either.

joelc · 07-07-2009, 08:15 PM

If anyone can suggest anything other than this for severe itching I would love to stop taking it.

kelly · 07-08-2009, 12:43 AM

Joel,
I had never heard before that itching was a symptom of Als. My husband had severe itching early on in the disease...even before he was diagnosed. I remember him itching his legs like crazy and asking for relief. He also presently takes Neurontin. Strange.
Fondly,
Kelly

MtPockets · 07-11-2009, 11:02 AM

I also have been itching for over a year now, but never even thought to relate it to ALS. Thanks for this thread. I will ask my Docs about something to help it calm down.

dralmiller · 08-02-2009, 04:17 PM

Quote:

Originally Posted by CB1977

My Dr. at clevland clinic just tried to put me on this because I have been in really bad muscle pain. I told him no because since I dont have a dx of anything yet I dont want that to mask or mislead Dr.s at this point. I just take advil all day. Is the itching related to ALS or just something else? Just curious?

I recently saw something about a lake in New Hampshire where there is a pocket where people are getting ALS 50 times more than the regular population. I think it talked about some type of cyanobacteria possibly being a neurotoxin? When I read this I said to my wife- if they find the cause, the cure wont be far behind it.

Cb1977

New Hampshire is an endemic area for Lyme Disease- The high weeds around those lakes harbor ticks that carry Lyme Disease.

There are reports of ALS or Lou Gerhig's Disease that when treated for Lyme Disease respond.

Lou Gerhig had a Summer Home in Lyme,Ct.

Wynn · 08-02-2009, 10:51 PM

I have been tentatively dx with PLS. I have had essential tremor since my teens--it has become worse with age--I'm 74 years old now. The first neurologist I went to tried to treat my ET with a half dozen drugs in sucession, but the side effects were so bad I could not take them.

I was finally sent to the UT med school in Dallas. That's where I got the dx of PLS. The ALS doctor I see referred me to a tremor specialist at the med school. After a comprehensive, he told me that there is one med I haven't tried, and if that did'nt work, I would have to have surgery for deep brain stimulation. That drug is neurontin.

I started neurontin and the side effects have been weight gain, elevated blood sugar, and dry mouth. I have to watch what I eat more closely, take an additional med for diabetes, and chew bubble gum--I was already doing that to keep my mouth muscles strong.

I've been on neurontin for about six month--2700 mg/day. The last time I went to the tremor specialist, he did some tests and was amazed and said that he estimates my tremor is 75% improved.

The ALS doctor had prescribed baclofen for me, but I had not started it yet. He said that he saw improvement and that I should not start the baclofen.

So, I'm very pleased with neurontin--it beats brain surgery.

Wynn

henrykuong · 08-04-2009, 06:12 AM

Really great! This is I need. thank all eveyone 4 shared !

MtPockets · 08-05-2009, 11:07 AM

Quote:

Originally Posted by MtPockets

As I stated below, "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.
It gives me cause for concern when you read all the possible side effects.

If it works for you, great. Just wanted to be sure you were aware of the problems associated with this medicine. If you do a search on the INTERNET you will find some lawsuits filed because of this drugs side effects.
For more comments about this drug go to: http://www.alsforums.com/forum/showt...ight=Neurontin

In all fairness I have to say they also do not know how ASPIRIN works either.

Just wanted to be sure you have all the information. The decision is always up to you as to what you take or do not take. I have no problem with that. Just trying to help.

sadiemae · 11-08-2009, 06:56 PM

interesting about head injurys. My husband developed Menieres after a fall from roof 6 yrs ago. The hairs in the inner ear died and will not grow back. When his speech first started to slur, we attributed it to this, but got a dx of ALS on 9-3-09. In talking to dr, symptoms probably started 3 yrs ago, when he started getting extremely painful charley horses in his legs.