People want to know if Gabapentin or Neurontin can cause uncontrollable movements. -
An older neurologist, described me; "Ballism, Chorea, and dystonic posture to the right hand. She has never taken neuroleptics. Jerking movements of the head, neck and arms, not so much to the legs. A casual relationship to Gabapentin has not been identified."
He said in a referral to a university movement disorder clinic, "This is a very odd movement disorder, and stranger still is its possible relationship to Gabapentin. I have never heard of this possibility."
The specialist said, "While Gabapentin is associated with dystonic reactions, these have been reported in the setting of chronic use and resolve when the medication is discontinued."
Warning: Don't suddenly stop taking this medication. Always consult your physician.
My husband keeps me awake every night with kicking, jumping and twitching. He takes 1800mg neurontin daily. I used to be on the same dose but was reduced to 1200. I am developing the same twitches now.
Little Dorrit Wow that’s awful! I developed shortness of breath and coughing shortly after my movement disorder began. I sucked on a Fishermen’s Friend lozenges all the time. One day I ran out, and had to drive to go buy more. Before I got it in my mouth, an anxiety attack hit, which made breathing more difficult. I parked in the hospital’s parking garage, and went to use the public restroom, An employee heard me coughing and insisted I go with her to the ER. I thought I was going to get help. Not so! My jerking disorder made me appear suspicious, so a burly male nurse came to get me, and said, “We need a urine specimen.” I told him, “I just went.” “We don’t need much.” I told him I used to work in a hospital. Next thing I knew, I was being taken to Lock Down, being observed via a camera. I pulled out my small camera, to entertain myself. I should have been taking selfies. The Dr. asked to see my pictures. The only thing I refused to comply with was changing into a hospital gown, so he asked why I wouldn’t. I told him a dermatologist had taken a biopsy from my hip, and it might be MERSA. Ha! I hope that shook them up. (I didn’t have MERSA). I told him, “I have never taken any illegal drugs.” They admitted in my records that I was negative for drugs but didn’t even mention my movement disorder.
koolhand Boshie I had gone to the hospital in respiratory failure and was later diagnosed with severe COPD. He changed the Rx. BANG. Just like that. Withdrawal effects included itchy skin, anxiety and insomnia.
Hey, I hope you are doing better. I came across this video googling these jerks caused by gabapentin. I'm obviously jerking and worried like hell over it. I'm prescribed 600mg 3× a day for anxiety. Well I'm getting alot of anxiety from this crazy jerking. After seeing your video I'm scared shitless. I'm coming off this garbage now. I hope this isn't a permanent thing. Would love to hear how you are doing. Well wishes.
koolhand Boshie I'm so sorry. I know about anxiety and it's awful. Wouldn't wish it on my worst enemy. I'm on the 600 tablets. But I didn't know they have 100 mg capsules. At my Dr appointment I'm going to ask about switching me to those. Thank you.
Pamela Carr, Are you taking pills or capsules Pamela? If you’re taking capsules, you can tell your doctor that you would like to have the 100 mg capsules to slowly reduce your dose, to see if that will resolve the jerking and ear pressure. - Sorry I didn’t answer your question about how I’m doing. After taking a flight in January 2018, to go to a Mega Medical Clinic in Phoenix, AZ, we spent 5 nights in a dive motel, with invigorating cool showers. After telling my doctor I was giving up trying to find help, he decided to send me to the other Mega Medical Clinic in Rochester, Minnesota. Since it’s difficult to travel long distances, I feel anxiety creeping in on me.
koolhand Boshie they are pretty bad like an hour after I dose I'm noticing. On top of the jerks it also is making my ears feel like alot of pressure like when you go up in a plane and before your ears pop. I know it's the gabapentin causing that too cause I don't feel that until an hour after I dose in the morning. These side effects scare me pretty bad. The reason I'm on this medicine is cause of my anxiety and panic attacks so I'm already a very panicky person so these side effects just ain't good for me lol.
I'm thankful that I've only been on this med for 6 or 7 months. I'm not great with time. I know it was no longer than 7 and no less than 6. I hope that will make it easier to come off of it. I just want off it so bad. I wish I never was put on it. I told my Dr I didn't want to he on any benzos. I'm totally against benzos. So they put me on this mess. Starting to think it's just as bad.
Pamela Carr, Some doctors are weaning their patients too quickly, like giving them one more prescription to withdraw with. I just stopped after the 2nd dose because I knew I was ruined. If you’re on Facebook, I recommend joining the Gabapentin Awareness group. They have a video in the files on 10% water titration. I hope you don’t mind me asking how bad your jerks are? Don’t give up, because many people have improved.
I'm taking it with suboxone idk what to do I'm having so many side effects, tremors, memory loss, confusion, I started at a high dose almost a month ago while already on suboxone, I'm scared to quit taking the gbp because of the seizures... not sure what I should do
I corresponded with you in October..I was jerking like a marionette. I wondered if you were real or another internet hoax. You told me I should recover in 6 months..and it will be 6 months tomorrow and I am getting close. Your are real and you are suffering....my heart goes out to you. 14 years of my life have been destroyed by doctors...I will never go to one again unless I break my leg and I will think about that carefully if it happens. They are all criminals. I hope you get help.
Lois MacLean I’m glad you have improved with a lot less jerking since you will give someone else hope. - My primary doctor didn’t agree with one movement disorder doctor’s “psychological” BS, so he sent me to a Mega Medical Clinic in Phoenix, Arizona. After almost 10 years, someone finally conducted EEG / EMG testing. They can measure nerve vibrations under the skin. I measured between 12 - 14 Hertz which means how many vibrations they measure per second. I fit into the Orthostatic tremors category, which means difficulty standing because of shaky legs. - I appreciate your reply and hope you never break a leg. Beth
If these doctors have only prescribed and read about it although they believe they are experts, they don't know sh...just my opinion but until you take the meds and live through the effects ,I don't care to hear their thoughts on the subject
Well I call it a twitch but its a muscle spasm in my hand arm and neck , it didn't exist until I began taking neurontin , after I stopped taking it the spasms slowed but didn't stop ,I know 100% the spasm/twitch is a result from neurontin , I've thought about during them if only to get the money back for the cups and plates I've broken because of it but no matter I was just sharing good luck ma'am
Thanks for answering my video. I don’t think the twitching and jerking side effects is a rare side effect. I’ve given up my search for help even though my new doctor tried hard to find me help. Just got back from seeing a specialist in Phoenix, Arizona. All specialists seem to defend Gabapentin by saying, “I have been prescribing Gabapentin for many years and no one has ever developed a movement disorder.” I showed her a copy of Side Effects from Drugs. com that are “For Healthcare Professionals, “ naming nervous system problems as well as other conditions.
Christina Garcia ~ Fortunately I haven’t flung my phone but I wondered if I was going to shake my wig off. ~ I don’t know if I have Fibromyalgia symptoms. I recently went to a large medical center in Phoenix to have a 3 hour Neurological evaluation with electrodes and leads attached from my head all the way down my legs. Does Fibromyalgia cause you to have buzzy nerves?
Hi Again, been on the Gabapentin now for around 3 to 4 weeks only 300mg per day, the second week I found I had a twitch in my right eye for just over two days, it was very odd but the 3rd day it just stopped? I havent had anything else weird happen since apart from feeling tired all of a sudden in the day and my eye sight goes slightly blurred and out of focus sometimes. Not had a bad head ache/muscle tension for a couple of weeks now so it must be working for me. All the best.
Matt D I’m glad to hear that you are adjusting to the 300 mg dose of Gabapentin. I remember from my other video that since your doctor hadn’t switched you yet, I recommended the lowest dose of 100 mg. I had kidney surgery three years before this happened, but I think everyone should be started on the lowest possible dose.
WISHING YOU A HAPPY HOLIDAY. I have now been jerking for 4 months..but each day is a bit less. I suspect I will recover. I wish you well and hope the best for you. Doctors know little about medications...They are dangerous and no doctor will accept responsibility for prescribing medications that harm or kill. I hope you can recover. This is my nightmare and if like you I had no improvement I could not keep going. You are very brave. Best wishes.
I think this will improve if it was caused by gabapentin..I was on 300mgs for 2.5 months....I jerked like a marionette and was bent into a pretzel...I stopped cold turkey early September...it is now Oct 31st....my brain is back, .the top half of my body is almost mine..but it still has my lower body and ankles and my legs but it is improving...I expect to recover...doctors have no idea what they are doing with drugs.....they are trained by drug manufactures...
Lois MacLean - I have heard those reports too. Is your balance and gait normal? My main exercise is walking back and forth on my long front porch. It’s quite boring, but music helps. I used to love walking on trails but I can’t walk downhill or my gait speeds up. - I’m trying to lose weight, but I feel like I’m plugging along at a snails pace. Have you posted any videos of your jerkiness? Hugs
This drug was banned from the US military in 2012. The manufacturer, Pfizer, was sued for misinforming doctors about how it should be used. Most doctors will report the side effects as dizzy, unsteady gait, nervousness, when in actual fact we do not have that...we have our bodies being jerked and muscles are twitching..they never write what we say, they write words they understand. I hope you recover..this is not right.
Lois MacLean Yes, I have heard some people who turned into a Marionette do recover. I hope you are one of them. My condition is different since it involves a hypothalamic lesion and has been persisting for 9 years, 7 months. My new primary doctor thinks he has figured out why and is sending me to a mega medical center that’s on the cutting edge of helping people like me. Thanks for your reply.
Lisa Smith Thanks for replying, Lisa. I also have some anxiety. My doctor is sending me to a Mega medical center in January. I’m fine with flying. I just don’t like it when doctors use insulting comments about my condition. - I wish doctors would learn the history behind this RX. A pharmaceutical CEO called Neurontin / Gabapentin, “ The Snake Oil of the 20th Century,” in an internal voicemail which was used against them in a lawsuit since they claimed it was good for everything it had been prescribed for. They have lost several lawsuits for making these unsubstantiated claims, but it’s still one of the top 10 drugs prescribed. - Hugs - Beth
I had been off and on it for the last 8 years. Was put on it by a neurologist years ago and stopped it because it didn't help. Then a psychiatrist put me back on it to "help with my anxiety". It didn't help so I stopped it. This last time I was put on it by pain management 1.5-2 years ago. I had Zoloft give me some lasting dystonia and akasthisia. Thankfully it comes and goes. But it always comes back for some reason. Or it is just always there, but hits in waves... When I noticed the familiar reaction rearing its ugly head after taking my Neurontin, I stopped it fast. I took it every other day for breakthrough pain, so when it started happening every other day I knew the culprit immediately. I am scared to make what Zoloft did to me any worse. Thankfully the head nodding has stopped, but I still get the stomach flexing and other little odd jerks. Most of that is from Zoloft, but it scared me to have Neurontin start it right back up again. It used to be real bad. I hope that you are doing better. With that lesion though, I understand that that may not be the case. It is terrible having no control over all those muscle contractions. Thank you for spreading awareness. (Hugs)
Addendum: Yes, I think there can be some mean withdrawals if you stop too fast. Oddly I didn't get that. Maybe due to my taking it every other day, instead of every day. I think that was my saving grace for stopping it fast or just genetics for that certain med. They treat us all like we are the same, but we can all react so differently to things due to our genetics. I am always scared to start a new med, because I have had so many bad reactions.
Lisa Smith I was wondering how long you had been taking Gabapentin before the head nodding and twitches began. I hope those Neuro-rotten side effects subsided. I have heard that tapering is best if you have been on it for quite awhile.
Thank you for posting, I have a elder family member with similar symptoms but I do not believe she took Gabapentin. Her symptoms began when she first saw a doctor and she began prescription drugs for things like blood pressure and to strengthen bones. Our family is stumped by this. I wish you the very best and hope you find a cure for you ailment. God bless you.
Joey Numbers Does your relative have any breaks from jerking? In my case there's a non-enhancing white spot on my hypothalamus gland. The hypothalmus gland and the pituitary gland are connected by the pituitary stalk. Doctors seem to be forgetting that the hypothalmus also has the Arcuate nucleus that produces Dopamine. Too little Dopamine causes Parkinson's, but too much causes tic like movements. I found a Dr explaining that in "Dopaminergic functions."
Joey Numbers, I understand the fear of that tube and noisy machine, and I'm sure you support her decision. My third MRI was ordered with anesthesia. I was hoping a specialist would know about a stroke that causes a movement disorder. She told me my hypothalamic lesion would only cause an endocrine problem. I told her that no patient should have to resort to buying a neurology medical book, and I showed her, "An infarction at or near the subthalamic nucleus will cause Ballism, which is twitching and jerking." She told me to follow her to the desk, and walked away. I just got tired of getting the run around for 9 years.
koolhand Boshie well she also developed phobias so she can not take brain MRI, it is beyond what she could handle. She is very strong besides the jerks. I do believe it is from meds, the doctors act like it is silly of me to think that. They then prescribe more meds.
I can't get my reply for Chris Podurgiel under his name. I'm sorry that you are still having myoclonic jerks. I hope time will improve your condition. I found that jerking and twitching is called Ballism in case you want to do some research.
Thank you for posting this video. I'm 38 and had taken Gabapentin, 900mg/day for 3 months. While on it I had myoclonic jerks and wrestles legs. I tapered myself off this medication and have been off of it for 2 months. I still have the myoclonic jerks and I believe these to be permanent side effects at this point.
That's great to hear that your RLS and myoclonic jerks have disappeared. I am a little bit doubtful that a huge Neuroscience Center can do much for me, but I will try to go to my March appointment with a positive attitude.
koolhand Boshie fortunately they seem to have disappeared. I had a panic attack in Nov '16 which included tremors so I was dealing with both myoclonic jerks and tremors. I've been taking 400mg of magnesium daily to help with the tremors. I started smoking (cigarettes) again in Jan '17 on a hunch that it would help with the anxiety and it did. I have almost no symptoms at this point but I cannot have caffeine. I don't know if the anxiety is related to the Gabapentin or if it's a separate issue. The jerks and wrestles legs don't happen anymore though, maybe only occasionally. Maybe I'm fortunate that I was only on Gabapentin for a couple of months so any damage it may have caused was limited and I was able to recover. I hope you're doing well and are able to find relief as well.
Chris, do you still have myoclonic jerks and I was wondering if they are slightly irregular like mine? My Dr., decided not to tell the neurologist he sent me to that Gabapentin had done this to me. I thought it was weird that a neurologist would rather visit with my husband since they both liked motorcycle trips. Later I discovered that he told that Dr that I developed a psychiatric problem that became a physical problem during my husband and son's motorcycle trip. Did a Dr tell you had myoclonic jerks?
11/2/16 My condition hasn't changed, although I have been referred to a neurosurgeon who deals with movement disorders. It will take time to be seen, since these specialists see people from all over the world. - Beth
She was taking Lexapro for many years. Her movements started years ago but it was just subtle mouth movements. In September of last year it suddenly got much worse. She went to movement specialists and neurologists nearly every day. It was so bad I was afraid she would commit suicide. We found someone willing to show us how to make the oil and she started taking it. It made her sleepy at first but it wasn't like she was leaving the house for anything so it didn't matter. That passed through when she got used to it and in about 4 months she was movement free. I watched how devastating this disorder was for her and if I can guide anyone else with it in the right direction I am happy to help. She takes 2 or 3 doses a day. Her main issues still that she grinds her teeth. If she starts doing that she just takes a little oil and it stops.
No, I haven't tried cannabis oil. My PCP Dr. and a neurosurgeon wouldn't give me the results of my brain MRI, 8 years ago by telling me "Your results aren't in yet." -The latest neurosurgeon told me if he tried to remove my 5 mm hypothalmic mass, it would cause more problems. At least I found a Dr that isn't trying to blame my condition on a psychological problem, like others have done. What RX caused your Mom's TD? Does that oil cause her to be very tired, and how often does she have to use it? Thanks for your concern.
No help yet, even though I have a little hope since I am going to see another movement disorder specialist at the end of March, 2017. Another guy has replied that he also developed myoclonic jerks after being on iGabapentin for 3 months, and still persisting after stopping it. Thanks for your concern Donna.
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