Anyone else having issues with uncontrollable eye movement with Gabapentin?

Heidster asked an interesting question, but doesn’t seem to be answering.

I hope you don’t mind me asking you a question since I only took two consecutive doses, and it caused a permanent movement disorder. 

How did your doctor tell you to start Gabapentin?

I recently found instructions to Physicians from Pfizer, the pharmaceutical company that bought the company that only had Neurontin approved by the FDA in 1993 as an anti-epileptic drug. 

This information will only open for physicians, but for some reason, it allowed me to print it. 

I was not informed that patients with postherapeutic neuralgia should have it introduced as follows:

Day 1: as a single 300 mg dose.

Day 2: 300 mg, two times a day.

Day 3: 300 mg, three times a day. 

I found this under: NEURONTIN (gabapentin) | Pfizer Medical Information - US

My RX said to take one capsule, 3 times a day. It was definitely too much, given too soon. 

Do you mind telling your experience with Neurontin?

I was put on this evil drug gabapentin for crushing headaches! I went through hell. My dr had me take:

1-300mgs for 3 days

2-300mgs for 3 days

4-300mgs the rest of the course

I only got to 900mgs and all hell broke out! Got every side effect there is! I weaned off how dr told me! Now the withdrawals are horrible!! The only thing I don’t have is the  eye movement only blurry vision! Now I still have that plus crusty junk in my eyes!! Never will I take this drug again!!! As far as dosage goes I don’t think Drs  really know!! 

Hi Diane,

You just verified my belief that even slow introduction can be dangerous. 

I hope you will get better. 

My doctor who prescribed Gabapentin, was informed within an hour after my uncontrollable movements began. The nurse called back and said, “Side effects always wear off.”

That night my shoulders started nonstop shrugging and then my head started moving back and forth like I was saying “No!” I knew it wasn’t wearing off.  The following day was Saturday so I called our son that lived nearby and asked him and his wife to come see what happened to me. My daughter in law took one look and started crying. When she saw my staggering gait, she offered to come help me with cooking and cleaning, and I even needed help showering. 

It was a living hell, going from being independent to needing someone to assist me.   Then she decided to take me to her house to live, which lasted 17 days, since she sent me to bed at 8:30 P.M. When my husband brought me home for our anniversary, I asked him to buy me a light weight vacuum cleaner. I could only vacuum during a TV commercial, then I had to rest. My B/P was over 200, and hadn’t ever been that high before.

It was a wonder I didn’t drop dead. I was 59 years old when this happened, now 69. 

Little did I know that my doctor decided to turn my condition into a psychological problem instead of telling other doctors what really happened to me. Doctors wouldn’t inform me my brain MRI showed that I had a 5 mm lesion on my hypothalamus gland. 

The pharmaceutical company, mentioned in my last post, admitted that movement disorders and other permanent health problems occur, and they want doctors to call them to report so they can figure the incidence  rate. 

 It’s shocking that they would like to know how many lives they’re ruining! 

I heard on the TV news that medical schools are training new doctors to prescribe Neurontin / Gabapentin / or Lyrica instead of opioids. 🤬 

That is just crazy!! I swear these Drs don’t know about this med!! I told my dr what I was going through and she said she didn’t know why I felt so bad!! Gabapentin was the only new med I was on!! I told her that gaba ruined my life! She tried to tell me I should just stick with it!! Well there was no way in hell I was going to!! Your right I can’t believe I’m not dead from this! I cried all the time felt like all my muscles in my legs were gone, talked stupid, chills/hot flashes in a snap of a finger!! I’m wondering what can be done so doctors have to tell you exactly what could happen and a lot of times does happen! No dr wants to admit it is the gabapentin!! I’m glad you got through this and sorry so many of us have to suffer! By the way I am the same age as you were when you went through this!! I told my husband if I can’t speak for myself he better not let them ever put this evil drug in my body again!! Thanks for sharing your story hopefully all of us telling our stories can help someone else from going through hell like we have!!!

I agree that doctors should have you read a list of all the known side effects. Well, they probably know if you were informed, you wouldn’t take it. 

I just remembered, one of my YouTube videos ended with that statement and I was angry.

One day I turned on my iPhone and it had a message to be sure and watch a video. It was my video. It was placed under the question,

“Can Gabapentin cause a permanent movement disorder?” 

I had found other people who were wondering if the Gabapentin was causing muscle jerking and twitching. 

Ladies,

After reviewing your discussion, I'm wondering if the gabapentin is causing brain lesions for people which in turn are causing these other problems for us. This ideal I'm going thru didn't exist before that medicine. I swear increasing to 600.... then having vision problems and all these lesions now came from that med. I just know it.

I had a visual disturbance of seeing bright dots of light at the time my uncontrollable  movements started. Since my brain MRI describes my lesion as being adjacent to the optic chiasm, I feel fortunate that I didn’t go blind.

I’m sorry you’re going through this ordeal. It’s like this drug can strike us down anywhere. 

I don’t know how some people think it’s a wonder drug. In my case people just wonder what happened to me . 

Neurontin, its original name, admits that it affects neuronal activity. It mimics GABA, slowing down, or inhibiting the central nervous system.

It didn’t sell enough as an add on epilepsy medication, so their marketing firm deliberately made up about a dozen off label uses that it was never tested for.

  The pharmaceutical company plead guilty to violating The False Claims Act, (Franklin v. Warner Lambert) and paid a $430 million fine, but doctors were still allowed to prescribe it at their own discretion. 

I hope you can see well enough to go online and make a report to Med Watch.  Doctors should report, but it’s only voluntary. 

Can that really be done on med watch? If it will do any good I want to do it!! Suffering from this med is so outrageous!! If I go back to see my dr who put me on this I probably will not be nice!! I think O will go on med watch! Can’t hurt nothing!

I also cried a lot, and I even felt like my life wasn’t worth living,

but I decided I could be like a grown up version of a Poster Child.

Do you live in the USA?  Med Watch is the FDA’s reporting agency. 

We moved to the beach in Washington state after retirement, I always thought we would do a lot of beach  combing, and clam digging,  but now a good stiff breeze will blow me over. 

This drug is crazy! Things were not that bad until on went on this medicine! It is so outrageous how a drug can ruin your life! Sounds like you had a great plan by the beach and all it took was this evil drug to ruin our lives! Everyday is a struggle! I do live in the US and I am just so angry these Drs don’t get it! I don’t know if reporting this will do any good when a dr doesn’t believe this drug is the cause! I wish you the best!

This drug is getting crazier.

Even though I heard that Gabapentin is going to replace opioids, my friend whose husband had knee replacement surgery several days ago was given Gabapentin along with OxyContin.

 The nurse said, “This is the best drug cocktail to prevent breakthrough pain.”

My friend was afraid for him with good cause. After we visited them, he fainted dead away while trying to get out of his recliner. Fortunately, he fell back into his chair. 

While visiting our son, we heard a siren. We were shocked to see an ambulance at our friend’s house. We decided we had to find out what was going on. The EMT said he was having too much pain, and should take his pain medication every two hours. 

Knowing my friend, she reported this to the doctor.  Fainting or somnolence is a side effect of any drug that suppresses the central nervous system. 

I hope your legs legs have started working better.

 I developed a stupid looking gait, thanks to Neuro-rotten! 

I’m scheduled for a brain MRI before seeing the specialist. The last specialist put in my records that my facial movements and sensations were symmetric and intact. How I wish they were.

The MRI instructions say I have to be able to lie still for 20 minute periods. I informed them I don’t think I can hold my head still for 10 seconds before my head jerks. 

Wondering if your condition has improved? 

I just say this! I have gotten better, but this drug took me so far down I’m not sure I will get out of the depression part! I still have some muscle weakness in my legs, plus blurred vision with crusty junk on my eye lashes! I hope some day I can get back to normal! Good Luck with your appt in Phoenix! Sorry you have to go through this! I did not get the movements you got! What are they going to do for you if you don’t mind me asking? My nightmare all started seeing a neurologist! She is the one that put me on this! Again I wish you all the luck in the world! Hope they can help you! 

 I’m not sure what this doctor will do, but I’m hoping for a diagnosis that goes along with my hypothalamic lesion and possible treatment. I know this doctor can do FaceTime appointments.

I read that Gabapentin can also cause muscle weakness called, Asthenia which I thought sounded like you.

Thanks for your good wishes.