Has anyone else developed uncontrollable jerky body movements after taking Gabapentin?

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My doctor gave me Gabapentin 300 mg capsules for lumbar nerve pain in 2008. The first capsule made my hands shaky, but it resolved by morning.  I decided to try one more capsule. Within an hour my arms started punching like a marionette. That night, continuous shoulder shrugging began and my head began shaking from side to side.  I also experienced a visual disturbance of seeing many bright dots of lights during the onset and I had several laughing spells that didn’t fit the situation.  I still laugh a lot even though it’s a difficult condition to live with.

I have found some people who have had jerky movements resolve, but my condition worsened. 

My doctor sent me to a new neurologist who recorded that I was a diagnostic dilemma, since I had a normal neurological exam, with a normal appearance six months earlier.  

Even though my new doctor has been diligent about searching for help, I don’t think any doctor has ever seen anyone like me. 

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  • Posted

    Beth, I had jerky movements, burning deep in my arm, Heart attack symptoms, all the EKG's for heart attacks said I had to heart problem, thirsty all time, cranky, hair started falling out, eyes blurry,  my day to day decisions were not the best anymore. And yet while all this was going on for years neither I nor my Drs. understood it was GABA side effects. I'm off Gaba 2 months 2 weeks now. All of the above side effects are gone, plus the ones I didn't list. Gaba, as many have said before is the drug from Hell.   

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    • Posted

      Hi Mary,  I also had internal burning in my left hand as it began to shake rapidly, which was the first place my movements started.

      You certainly had a lot of symptoms that your doctor didn’t associate with the Gabapentin. How many years and how high was your dose before you realized it was the pill from Hell?  

      There’s an online article titled, “Neurontin Killed Our Husbands, We Believe.”  They were doctors who didn’t realize this drug was causing serious mood changes along with internal restlessness since the worst side effects weren’t published.  

      There was a big lawsuit started by a Whistleblower, but I don’t know if any patients have brought a lawsuit. I might have sued the manufacturer but I wasn’t informed that my brain MRI revealed that I had a 5 x 6 mm lesion at the entrance of my pituitary stalk that is also touching my optic chiasm and right optic nerve. It’s a wonder it didn’t ruin my vision. 

      My husband also took it for several weeks but when his eyes became bloodshot with burning he decided to get off of it. 

      I’m glad your jerky movements finally disappeared. ~ Beth

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    • Posted

      About 7 yrs, and up to 1200mgs, down to 900 mgs. Was prescriped for fibromyalgia    and sleep. My memory was going, when I finally got scared. Started tapering off, before I found these sites. Did it to fast.  But here I am, feeling better everyday now.  And hoping to help others.
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    • Posted

       If only I had only been warned, I could have made a better decision. I also wished I had been given the liquid form since that would have made it easier to start at a lower dose.

      I saw on the TV news that since opioids are considered so dangerous, they are telling doctors to prescribe  Pregabalin, or Gabapentin as a replacement. 

      You are right Mary that sites like this can help warn others who are searching  for reviews. 👍

       

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    • Posted

      Hello. I had all the same symptoms. The side effects have had a negative impact on my relationships and work life. In grateful for realizing this but angry I suffered so much. I'm sorry you did as well.

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  • Posted

    Yes I noticed that my arms tend to jerk at times and if I'm doing dishes are moving things around I drop them because of the arm jerks . I was dropping things like crazy and my boss noticed.

    Also I noticed my pain increasing over time. I've been taking gabapentin since I had back surgery for fractured

    l4 and l5 back in August 2017. Also i have found myself becoming extremely depressed in a bad way and I've always been a hard worker, active not lazy at all but it's gotten so bad i dont want to get out of bed or leave the house. My friends and spouse have noticed a change in attitude. I decided to quit 3 days ago. I already feel better in every way. I would never recommend going off cold turkey but I believe there are always other alternatives. After doing some research i saw that the drug was originally meant for epilepsy. It's not meant for pain and there are so many other alternatives that are non narcotic i would rather live with a small amount of pain than end up divorced, without friends, a job etc... the drug is not the wonder drug the doctors claim it to be ..

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    • Posted

      I agree that for many people it hasn’t been a wonder drug, but some people still swear by it. When the patient complains about a new condition, the doctor usually won’t associate it with any bad side effect of Gabapentin.

      It took most of the fun out of my life since my balance is still bad and I can’t even go for a walk in open spaces.  My only source of exercise is walking back and forth on my long porch. Pretty boring, but I have to get some exercise.

      I have heard that going off cold turkey can be very difficult.

      I have studied my condition and I believe I have Bilateral Ballism (twitching and jerking) caused by a lesion on my hypothalamus gland at the entrance to my pituitary stalk. There’s no way for my endocrine hormones to get to my pituitary gland. You can also get it from slow transmission of hormones. 

      After recently having another brain MRI, they changed the term lesion to a cyst. What a joke! 

      The extreme depression and tiredness you are having is from Withdrawal.  

      Your hypothalamus gland produces neurohormones that control temperature, motivation, growth, sleep cycle, something our thyroid needs, vasopressin that controls kidney function, libido, controlled movements and I’m probably forgetting a few. 

      I don’t know why doctors can’t figure out that they shouldn’t  overload our brain with too much GABA, (Gamma amino-butyric acid) which is inhibitory. Suddenly stopping might be causing a low production of GABA. You should probably contact your doctor. 

      I’m sorry for what you are going through and hope you continue to improve.  

       

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