After taking the 2nd 300mg dose of Neurontin, I developed a rapid onset of uncontrollable movements. It began with a burning sensation in my left hand, which started shaking. I also had a visual disturbance in one eye, like a bright light. My shoulders started shrugging, and my neck started turning. Your information I found 5 years later said Neurontin can cause strokes. My brain MRI shows that I have a 5mm lesion on my hypothalamic gland. I have learned that is where our body makes dopamine. One neurologist described me with ballism, which means twitching and jerking. I never found a neurologist who would connect Neurontin as the mechanism. One neurologist put on my referral to a movement disorder clinic. "This is a very odd movement disorder, and stranger still is the possible relationship to gabapentin. I have never heard of this possibility." So that is why I'm asking ~ Why don't doctors know about this side effect?
Why don't doctors know that Neurontin can cause permanent movement disorders? It caused mine?
Question posted by Boshie on 30 Sep 2014
Last updated on 7 February 2022
13 Answers
"Rare (less than 0.1% of users): Movement disorders (e.g., choreoathetosis, dyskinesia, dystonia, etc.), loss of consciousness"
Unfortunately, doctors and pharmacists don't always have the time to discuss every known side effect of a medication, especially when they're rare, but you should at least be told to read the Patient Information sheet that usually comes with your prescription.
I always do my own research on any medication that's prescribed for me BEFORE I take it.
I completely agree!! Thank you for your feedback.
So thankful to find this information --My daughter was visiting and has been taking Gabapentin for 2 weeks for severe headaches... she was taking 300mg 2x a day. She fainted and then had uncontrollable jerking and twitching. I thought she was having a seizure, and called 911. She had another episode of uncontrollable twitching in the ER. The ER doctor discounted it could be the Gabapentin-- needless to say after witnessing this, and reading everything about the drug she stopped taking it.
To answer your question of "why don't they know?"- I personally feel like yes, the Dr's. do know. I can say I was on this med-Gabapentin since May 2021 and have experienced Severe to the point of crying and wondering-am i dying? Stomach pain. It has changed my eating so much from causing severe uncontrollable vomiting to constant severe tummy pain. I also noticed my left leg became numb all the time. I retained A Lot of water-swelling in my legs. And this odd feeling like my body was convulsing/seizures inside of me but I felt trapped. It was so bad! I am now off of it and I may have gallstones-praying not. This drug seriously messed me up very badly. When I was taking it I would get a severe pain in my bladder and have to get up and get to the bathroom before I almost lost it. I brought up MANY side effects with my Primary including severe aggression-feelings of sullenness additional Depression-I already have Depression.
All I get is that this is the Drug I should take-she keeps saying "take more- take more"-not a chance! There needs to be a serious Warning on this Drug about that it can CAUSE SEIZURES plus Severe vomiting-Severe Stomach Problems/PAIN!
Honestly, I feel misled and lied to. I don't really trust what comes out of my Doctors mouth. She doesn't listen to my Words.
My life and my body matters to me.
I don't think they truly care anymore.
That is my Honest (sadly by experience), answer.
HelenaSunshine, I appreciate your giving information about your sad experience with Gabapentin. I’m sorry your doctor wouldn’t listen to your complaints. Did your gastrointestinal problems subside or is it still an ongoing problem? - I feel like doctors prefer to defend the drugs they prescribe. On the 10th year of my Gabapentin induced movement disorder, I posted an online video. I attracted a doctor from Ukraine. He tried to blame my movements on former RX drugs that made my brain a fertile field for this to happen. I didn’t like his analogy. No other RX has ever made me so restless, which caused me to jump out of my recliner, and then my movement disorder rapidly began. This was too much for my brain to handle. Then he completely changed his tune by saying, “It’s unconscionable for this RX to be used for so many conditions since I have seen many cases of organ failure!” - I think I was an upsetting case for him to see!
That sounds really terrible. I think your movement disorder most likely was at the very least brought to the surface and yes, most likely exacerbated by the Gabapentin. I can say that a couple other AntiDepressants that I was on for short time spans-3-5 months caused me to begin facial and bodily paralysis episodes. They were very disturbing and when I went to my Dr's they said to ignore that and keep taking them. I stopped because the additional side effects were even worse! Once when I was working in front of a lot of people for long amounts of time I kept trying to smile and change my facial expressions and my face would not move. Then people got angry with me because they thought I was angry. My face was stuck! It still stays stuck a lot and I used to be very expressive and those days are gone. I kind of feel like I had a major stroke and I am trapped inside my body. It feels that way a lot.
Where I live none of any Doctors have shown any care at all-and I have nearly died during a few surgeries and they don't care. This Gabapentin though-I will adamantly be abstaining from it.
To answer your question, my stomach has gotten much better since I stopped the med. I am still dealing with some issues but nothing like what that did to me. The seizures inside my body have also thankfully stopped. So has the tension and added unease. The pain however, is back and I have to deal with it.
I think for some, Gabapentin is a really bad med.
I truly hope you can get the uncontrollable movement to stop. It could be a sign of lewie body disease or a type of Parkinson's.
Please Take Care. Sending you Warm Wishes.
I agree that these RX drugs start accumulating over time, until our brain and body become defensive.
I can’t understand why that doctor would tell you not be concerned about loss of your facial movements and body paralysis, and to keep taking the RX that was probably the cause. It does sound like some symptoms of a stroke, but it could have been a reaction that caused Dystonia. During the past two years I’ve lost weight and my legs still feel like they weigh a ton when I walk on my front porch.
You also mentioned internal seizures. Did you mean like feeling internal vibrations? I have a lot of those. In 2018, a Neurology Professor conducted a two hour nerve study at a well known medical institution in Phoenix AZ. After asking me to bend over with my arms on a table, he must have seen an increase in the speed of my nerves. Then he asked if I would be interested in allowing my video monitoring testing to be used for teaching purposes at their Medical Schools? I told him, “I think it would be important for other doctors to see my condition.” Later after going over my medical records, I discovered that the radiologist had only requested them to find an “unspecified tremor.” I decided to take his request and their findings to my last doctor’s appointment.
I told the Medical Student who was doing her Clinical Practice, that my diagnostic results probably got transferred a lot later than what the other specialist sent, who had claimed my movements didn’t match any known movement disorder. I thought my diagnostic testing had been overlooked. My doctor brought the paperwork with him, and I was glad to see him include “Orthostatic Tremors,” to my records.
I really hope you receive the proper diagnosis soon, because patients deserve it. We shouldn’t have our symptoms negated as if we can’t recognize that it was an RX drug that changed us.
I think it’s in all the paperwork that we get from the pharmacy when we get the prescription filled. But what I want to know is why I wouldn’t expect to shake, twitch or jerk? I’m taking a drug that was used primarily for people with grand mal seizures . It blocks the Seizure So if I’m not apt to those seizures,then I’m jerking and twerking when I take a medicine for that. Another point is - I’m on these because of nerve pain- I assume I have nerve damage. That’s the cause of jerking the release of the nerves from being so tight and probably swollen. Or misfiring. I have to ask myself does the pain outweigh the side affect. I’m my case for now- it does and I remain on it. I am on a low dose, 100 mg. But I take as needed for pain so I take it at night. I take it with flexeril. That is a muscle relaxer. I jerk and sometimes I’ve sat straight up from a bad twitch. I can’t do a set up to save my life! Lol but I did that night.
The muscle loosened and the nerves getting a better blood flow( I hope) is doing it. Most times I don’t notice. But then again I have neuropathy and muscle damage and fibromyalgia so I have those symptoms anyway. Try it at night. The jerking doesn’t bother me when I’m asleep.
I got prescribed gabapentin and experienced the involuntary twitching as well. Its scary
I have been on Gabapentin for about four months now and I am experiencing movement disorder in my left big toe
I’m sorry to hear that your big toe has been doing this. It is likely a side effect from Gabapentin. Many doctors don’t keep up on a medication’s post-marketing Side Effects. When a patient asks their doctor to be tapered down, they usually recommend too rapid of a taper. I follow the “Gabapentin Awareness” group on Facebook which recommends a very slow reduction.
Hi everyone, it’s February 13th 2019 today, and Gabapentin is still being given out for migraine and Tardive Dyskinesia. I know this because I was taking 600mg 3x a day for those conditions. I’ve been on this drug for months. My jerking and twitching started about a week after I started taking it, but my neurologist is a Movement Disorder Specialist that was already treating me for tremors so I didn’t suspect that my Drs would poison me and cause even more problems. I thought my Dyskinesia was getting worse.
I went for my checkup and saw me and said that I have to stop Gabapentin and another drug they prescribed Amantadine because I was a difficult case and Wanted me to see a cognitive psychologist for therapy ! She said sometimes when we move in a certain way our brains remember and does it without us knowing. My husband and I kept looking at each other shaking our heads. I asked her why is she taking me off the drugs and she said maybe we made a mistake with your diagnosis, but I don’t think you’re faking. I was pissed! I have 2 neurologists so she went to get him. After a long wait they come back in and he sits down beside me and my husband and told me they were taking me off the drugs and putting me on Artane. He said nothing about seeing a psychologist ,, or making a mistake with my diagnoses.
I’m tapering off them now, but when I got home I looked up Gabapentin, Amantadine and the new medicine Artane that I will take after I’m off the others. That’s when I found out that Gabapentin and Amantadine cause jerking, eye problems and tremors. The even bigger surprise was that the new medicine they want me to take is for Parkinson’s disease and pacifically states that people with Dyskinesia can not take this drug! What’s going on?
I’m so sorry that all of you are going through this; we should be able to trust our DRs. But in my case I don’t anymore
Hi Teresa, Gabapentin is being used for many conditions. I started this question, then changed my name. I’m sorry for what you’re going through. Doctors should know by now that Gabapentin, generic for Neurontin, can cause movement disorders, including twitching and jerking, eye movements, tremors ataxia, etc, since it’s in the Pfizer updated information for Physicians, dated November 7, 2016. It also states that they want doctors to call to report these reactions so they can calculate incident rates. I try not to blame my doctor for causing my 10 + years movement disorder since the Pharmaceutical company made false claims. I do blame him for telling other doctors that a psychological problem became a physical problem. - Some people do recover if it didn’t cause permanent damage. I hope your doctor believes in a slow taper.
I recently found that my description of what occurred during the rapid onset of my movement disorder, matches Thalamus Pain Syndrome, which happens during a stroke, but only one neurologist recorded those symptoms, but no doctor will validate my condition. You’re absolutely right that no cognitive psychologist can teach you to stop moving incorrectly. I hope you return to let us know how you are doing.
I have been taking Gabapentin for about four months now and I’m experiencing some movement disorder in my left big toe. I am wondering if it could be side effects from the medicine
I don't have any answers for you, just a comment.
I have had twitching in my hands ever since starting neurontin years ago. The higher the dose, the greater the twitching. It even causes me to spill drinks if I'm on a high dose.
I mentioned this to a pain doctor (who was a jerk and bad doctor to begin with - started my first appt with him with a filthy joke!) and he denied it. Said that it's narcotics that make you twitch. I disagreed and he said, "What makes you sure it's the Neurontin?" I said, "Because every time the dose goes up it gets worse, and every time the dose is lessened, it gets better."
Lately, my CRPS in my left leg (caused by another dr. who punctured my spinal cord and left me with this CRPS2 condition) has been getting worse, and my period limb movement disorder is back. I get no sleep. My Dr. increased my gabapentin dose, and the movement disorder is getting even worse. I started to think that maybe the neurontin is to blame. Investigating on the internet is proving to be very enlightening. Thank you for sharing your story.
I hope and pray that you get better. These twitches and tics are hell.
If you posted your reply on 09/30/14, I received it on 10/09/18.
I’m sorry for what you’re going through, and also pray that you get better.
Pfizer updated information about Neurontin on November 7, 2016
“NEURONTIN (gabapentin) | Pfizer Medical Information - US”
This site is intended for US Health Professionals. It asked if I was a Dr. I couldn’t press yes, but it printed out the information.
Even though they can’t estimate the frequency, since the FDA only accepts “well documented reports,” movement disorders is listed and the most common types of nervous system problems are, lack of coordination, tremor, jerky movements, unusual eye movements.
It would be nice if doctors were required to document adverse reactions. Your doctor’s reply was similar to mine. He claimed only neuroleptic drugs such as Haldol could cause it.
My last neurologist recorded her doubts that I could have had this condition for almost 10 years. The Mega Medical Center didn’t refer me to anyone closer to where I live but they recommended an annual brain MRI.
I developed persistent tinnitus after the last MRI with contrast.
I researched and discovered that Gadolinium contrast has been found in brains during autopsies, and can cause Nephrogenic Systemic Fibrosis even in people with normal kidney function.
Forget that recommendation, I’ve been ruined enough.
This is really scary! I just started taking gabapentin and within the same day of my first 300mg dose I started experiencing involuntary movements and twitching. My body jerks so bad it wakes my boyfriend in his sleep. I just thought it would stop when the medication was out of my system. And I certainly expected this to be common. However I never imagined that this could become permanent. Now after a month of taking the medication I'm very scared of this becoming permanent. I looked around and did my research and after all the horror stories I immediately flushed my gabapentin and prayed. I sincerely hope that things will get better for you.
Jaymilee, I’m sorry I didn’t explain that I’ve found many people on support groups who reported that their jerks gradually disappeared after tapering off.
You are the first person I’ve found that had jerky movements from day one.
Has that problem resolved for you since you stopped?
I had an adverse reaction that caused a lesion on my hypothalamus gland.
You might have had a slow down in the neuronal transmission in that area, but not causing permanent damage.
Praying that you are better.
If you receive this, I hope you will respond.
Did your uncontrollable movements ever resolve? My jerky movements have caused problems. Is a dentist going to be able to work on me? I'm seeing one next week since a crown came off.
I’ve been on 300 mg of gabapentin for four days and within a half an hour of taking it my wrist jerks upward and my shoulders have minor twitches which would only be seen if I were wearing let’s say a tank top. They stop when the medication wears off. I don’t have any lesions on my MRI, but I know for sure that it’s a side effect of gabapentin. It’s so frustrating that doctors don’t understand pharmacology, or really even nutrition in general. Anyway I hope things will improve for you soon.
Hi Skwuri, I wish I had paid attention to the 1st dose making my hands really shaky, since the 2nd dose sent me to neurological hell. - I should have said earlier that I used to be Boshie. I got my hopes up when a neurosurgeon sent me to Swedish in 2017, so I changed my name. That appointment didn’t go very well since the doctor had a diagnostic pamphlet attached to her clipboard before ever looking at me, and kept saying my problem was psychological. I’m sure you know from your experience with shoulder twitching and wrist jerks, that it’s not a psychological problem.
I wish I had been given the liquid form. I have heard of people making their own liquid by dissolving the capsule contents in warm water and storing it (for 5 days) in a small bottle with a graduated eye dropper. I believe the 300 mg dose is too much for our brain.
I have been taking under 1 gr. (approx.300-600 mg. daily)of gabapentin for about 2 yrs.for diabetic nerve pain. The materials included with my RX do contain info on side effects such as those noted here. Fortunately,I have had no disorders in my limbs or tics, etc. However,I am now becoming more aware of these conditions through reading these comments. Many here are complaining that they were not told. Often patients do not bother to read the info. on RX. I believe this lack of attention to provided info. can be part of the problem, as doctors do provide these materials for their patients.
You are fortunate that you haven't had any bad side effects, but how about weight gain? As for doctors informing patients about side effects, my doctor didn't, and tics and tremors weren't listed on my RX receipt, but I did see them mentioned on my husband's 2016 RX receipt. He stopped after 10 days because his eyes became bloodshot and painful. (not on list). The first movement disorder specialist I saw claimed that dystonic reactions have happened after chronic use, but it wears off after reduction. That may be true in some cases, but my condition hasn't improved. Then a 2nd movement disorder specialist told me if I just stop thinking about my ideas that Gabapentin caused my movements, they would go away. If that was true, my body would stop behaving like a crazy marionette. I used to have yearly dental visits, but how can a dentist work on someone with constant teeth chattering? Their attitude shows they don't accept the fact that Gabapentin / Neurontin can cause a permanent movement disorder.
Need to address the response from Sweetiepie: So sorry you had so much trouble as did your husband. As for weight gain, I haven't noticed any from gabapentin, but I a newly perscribed Glipizide and have gained 5 pounds in the first month! It just proves how all react differently to meds, even tho they are supposed to be so helpful. Best of luck to you on searching out the best remedies.
I thought people who developed Gabapentin induced movement disorders were few and far between, but I think doctors aren't taking the time to report to Med Watch. - When I told my doctor that I was concerned that other people were also developing permanent movement disorders like mine from Gabapentin, he said, "Only people who take neuroleptic drugs, like Haldol, develop movement disorders." I reported my adverse reaction to MedWatch. They thanked me, but said they needed one or two well documented reports. Obviously, they meant they need reports from doctors. Since I found a lot of people posting about Tardive Dyskinesia on YouTube, I posted a YouTube video about my condition that can be found if you Google, "Can Gabapentin cause permanent movement disorders?" I was wearing a wig that almost got knocked off by my terrible neck jerks, along with a lot of other movements.
Since Gabapentin is becoming more popular, this reaction will occur more often, and we can only hope that doctors will be more vigilant in reporting. Best wishes from a fellow Gabapentin induced movement disorder sufferer. Hang in there.
They may very well know, often times there are so many side-effects that are subjective, as all meds are with patients. Some are so rare they may not bother to mention them all, but this is of course, unacceptable. Thorough research should be conducted and patients made aware of every possibility, no matter how rare. Neurontin was actually recalled for a while years ago, then put back on the market.
The system is overloaded, and it will only get worse. More and more we, the patient have to do our own research.
Thank you for your answer. I didn't know there had been a brief recall. They recommend 300mg as the starting dose, 100mg is reserved for people with kidney disease. The doctor also started me on a diuretic the same day as Neurontin, because of edema in my feet and ankles. It might help a lot of people if they would use 100mg as a starting dose.
I reported my adverse reaction to Med Watch. Since the neurosurgeon didn't tell me anything about the lesion on my hypothalamic gland, my report was incomplete.
Two months after my movement disorder began, I woke up to something worse. My right thumb had contracted tightly over my palm, and soon the other finger joints became so stiff, they wouldn't bend. It was like getting a fast case of rheumatoid arthritis, except the hand neurologist said it was caused by clonic jerking, and he could not repair it. Drugs.com mentions that Neurontin can cause contractures. I have learned how to protect my other hand. ---
I don't understand how a movement disorder specialist could look at me, with all of my abnormal movements, and my messed up hand, and tell me that I am psychogenic, and my brief exposure to Neurontin had nothing to do with my condition..
Because of the disclosure on Drugs.com, maybe the OHSU Movement Disorder Clinic will believe your disclosure. Do I need permission to use it as proof? Their web site is www.ohsu.edu/pco
Find the solid peer reports on the web, I'm just a guy online who care enough to share truths. I would flat out say Neurontin is a bad drug, and there are many better alternatives, this may be true for your circle of care as well.
Keep me posted. Your experiences add to my (and your) ability to help others.
I have gone to a lot of expense to discover what doctors know about these "Drug Induced Movement Disorders." a book edited by Dr. Kapil Sethi. Doctors agree that neuroleptic drugs are a contributing factor, as well as dopamine-blocking agents, and SSRI. Some people are more susceptible, such as older people. When it came to the discussion of the anti-epileptic drugs - GABA - they decided to call it "a matter of conjecture." since there are so few reports, and they claim that the involuntary movements resolve when the dose is reduced. They are only speaking of GABA being used for epilepsy, since that is its sole approved use..
Thanks to your insight I found that there was a lawsuit brought against Pfizer in 2004, and they paid $430 million because they were promoting Neurontin for illnesses that it was not approved to treat, including migraines and back pain. (My complaint was back pain.) There were 11 conditions that they were promoting its use to doctors, and it is obvious that they have failed to inform doctors to stop prescribing it for those conditions. But patients don't dare stop taking it or they will develop seizures.
If they had only informed physicians about the outcome of this lawsuit, I wouldn't have been given it in 2008. I don't think they believe in social responsibility.
Healthcare is a mess and it will only get worse, much worse. I agree these types of meds, while they have their place, often cause more harm than good. So many non-med options for many folks, for others,
Related topics
neurontin, dosage, muscle twitching, doctor, burning, disorder
Further information
- Neurontin uses and safety info
- Neurontin prescribing info & package insert (for Health Professionals)
- Side effects of Neurontin (detailed)
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