I feel alone. I’m wondering if anyone else has uncontrollable movements caused by Gabapentin?

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Doctors doubt that only two consecutive 300 mg capsules of Gabapentin caused my twitching and jerking movements 10 years ago. It’s probably a very rare adverse reaction but sudden onset is called Acute Dyskinesia. Many doctors have quoted statements from my normal neurological exam that was completed  82 days before my adverse reaction to Gabapentin. My prescribing doctor evidently didn’t tell these other doctors about my adverse event. Doctors  even ignore my 6 mm non-enhancing lesion on my hypothalamus gland, and even describe it as asymptomatic, (no symptoms). One doctor recently called my problem, “Functional,” implying that my brain is functioning normally. I did some research and found an explanation on YouTube about the “Motor Circuit of the Basal Ganglia - Functional vs. Dysfunctional.” The Subthalamic nucleus is the latest term for hypothalamus gland, so I believe this shows that mine is not functioning properly. 

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  • Posted

    I just read your share and I just want to say how sorry I am that your going through all of this. I want to wish you well

    Do hope all will be resolved soon. And that you find the correct Drs.

    Take care of yourself.

    Marie

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    • Posted

      Thanks Marie for your encouragement. Every time I have seen an expert, they make it sound like I’m either lying about what caused it or doubt it occurred 10 years ago. So that’s the reason  I’d like to see if it’s a common side effect, even though most people are probably having an electro-chemical disturbance. 

      One Movement Disorder specialist  walked into the room with her diagnostic leaflet about Functional Neurological Syndrome, attached to her clipboard. How can a doctor make a diagnosis before seeing or talking to the patient? As I mentioned before, they prefer going by my 2008 normal neurological exam. That doctor’s  opinion followed me to a huge Medical Mecca in Phoenix, Arizona in January, 2018.

      My wise old primary doctor provides clinical experience to new Physicians Assistants, so I think he’s training them to not give up on difficult cases. Well he  really doesn’t want me to give up either.  

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  • Posted

    Yes mate it does the same to me.

    I can be sat and all of a sudden just twitch with my arms or legs

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    • Posted

      Hi John, are you still taking Gabapentin? I stopped immediately after the 2nd dose, but if taken for longer periods, they recommend  slow tapering. 

       My twitching and jerking movements are slightly irregular but frequent. 

      I know there are worse conditions to have, but this one is down right embarrassing. 

      Sometimes people stare at me in restaurants. If someone wants to know what caused it, they usually start a conversation by telling me they like my crooked wooden cane. So I say, “Thanks, but if it hadn’t been for an RX drug causing my condition, I probably wouldn’t have ever needed this cane.”  Then they want to know what drug caused it, so that makes me feel like I have a purpose in life. 

       

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    • Posted

      Hi beth47873

      Yes I am still taking gabapentin

      2700 mg a day. I find that my strange movements happen at night when I am sat watching the tv. My wife says that she sees it happen and I don’t know that I have done it.At least it is only later in the day when it happens and not earlier. Hope this explains things.. John

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    • Posted

      Hi Beth

      No they are not to bad as they mainly happen in the evening as I am watching tv. It is very rare that it happens during the day.

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  • Posted

    Although I came off off it pretty quick, I did not have this problem. But I could see where it may cause this. And there are others I have spoke to about this drug who have experienced this. Hoping you can get some sound advice.,and feel better.
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