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clonazepam withdrawal / drug induced movement disorders?


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I was on clonazepam for 9-10 years at first it was working okay then it changed in early January 2018 and started getting weird side effects: increased anxiety, head twitching, chest pains, and panic attacks

saw doctor and expressed that meds are not making me feel calm or good anymore and i want to get off meds

did a taper and stopped taking clonazepam rather fast after developing movement disorder / chronic head shaking / tremors in legs / trouble walking, etc for the last nine months in addition to insomnia and alot of other symptoms [anxiety, balance, blurry vision, confusion, depression, dizzyness, suididal thoughts, tinnitus]

- anyone else have this kind of experience??

had blood tests [including Lime], CAT and MRI [without contrast] brain scans done. ALL came back 'normal'

- saw neurologist that diagnosed with a "functional neurological movement disorder" [vague umbrella terminology]

and referred me to a psychologist for 'psycho therapy' claiming the movement disorder is "caused by complications of anxiety and depression" and is talking about how emotions and feelings cause movement disorder completely ignoring the fact that i was on meds for 9-10 years and could be going through withdrawal or nervous system damage possibly low dopamine, gaba, serotonin brain chemical neurotransmitter / receptor imbalances

this "how do you feel?" 'psycho-talk therapy' approach is not making the constant movement disorder or other symptoms go away.

- anyone else have this kind of experience??

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was on clonazepam for 9-10 years at first it was working okay then it changed in early January 2018 and started getting weird side effects: increased anxiety, head twitching, chest pains, and panic attacks

saw doctor and expressed that meds are not making me feel calm or good anymore and i want to get off meds

did a taper and stopped taking clonazepam rather fast after developing movement disorder / chronic head shaking / tremors in legs / trouble walking, etc for the last nine months in addition to insomnia and alot of other symptoms [anxiety, balance, blurry vision, confusion, depression, dizzyness, suididal thoughts, tinnitus]

- anyone else have this kind of experience??

had blood tests [including Lime], CAT and MRI [without contrast] brain scans done. ALL came back 'normal'

- saw neurologist that diagnosed with a "functional neurological movement disorder" [vague umbrella terminology]

and referred me to a psychologist for 'psycho therapy' claiming the movement disorder is "caused by complications of anxiety and depression" and is talking about how emotions and feelings cause movement disorder completely ignoring the fact that i was on meds for 9-10 years and could be going through withdrawal or nervous system damage possibly low dopamine, gaba, serotonin brain chemical neurotransmitter / receptor imbalances

this "how do you feel?" 'psycho-talk therapy' approach is not making the constant movement disorder or other symptoms go away.

- anyone else have this kind of experience??

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was on clonazepam for 9-10 years at first it was working okay then it changed in early January 2018 and started getting weird side effects: increased anxiety, head twitching, chest pains, and panic attacks

saw doctor and expressed that meds are not making me feel calm or good anymore and i want to get off meds

did a taper and stopped taking clonazepam rather fast after developing movement disorder / chronic head shaking / tremors in legs / trouble walking, etc for the last nine months in addition to insomnia and alot of other symptoms [anxiety, balance, blurry vision, confusion, depression, dizzyness, suididal thoughts, tinnitus]

- anyone else have this kind of experience??

saw neurologist that diagnosed with a "functional neurological movement disorder"

and referred me to a psychologist for 'psycho therapy' claiming the movement disorder is "caused by anxiety and depression" and is talking about how emotions and feelings cause movement disorder completely ignoring the fact that i was on meds for 9-10 years and could be going through withdrawal or nervous system damage possibly low dopamine, gaba, serotonin brain chemical neurotransmitter / receptor imbalances

this "how do you feel" 'psycho-talk therapy' is not making the constant movement disorder or other symptoms go away.

- anyone else have this kind of experience??

 

This seems to be a common response to patients suffering adverse drug effects ... it is a way of denying that the drugs are responsible.  I was given diagnoses of chronic fatigue syndrome and neurological functional symptoms .. I now have a diagnosis of PBWS but had to fight hard to get it, I am in the UK.  I have been offered psychological therapy a number of times ... I have told them that this will not help me to regain my mobility or my cognition.

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Hi there, I have similar symptoms after about same dose and duration as you. My movements/spasms are left side of my face, neck, and shoulder, lower back, and right glute/hip. I saw a neurologist, he didn’t think it was a movement disorder, but then it’s never been raging and super obvious when I’ve been in office. There is like a baseline “locked” sensation that creates stiffness and pain, and occasionally the muscles just go bat shit and start moving the joint. It’s really painful when muscles on opposite sides of the joint do it st same time (think bicep and triceps), it’s like a tug of war with your bones.

 

He did hook me up to emg which had abnormal activity in every muscle tested throughout my body. He had a hard time explaining it but thinks it’s probably a cramp fasciculation syndrome. Has me trying antiepileptics for it- I’m on my third one that hasn’t really helped.

 

There is a publication I found about clonazepam and withdrawal induced tardive dyskinesia or withdrawal induced dystonia I found, try googling it. The opinion of the authors was that it should be self limiting, so there’s that. I’m about 6 months off and it has settled down some, but still very much present and very painful. It is by far my most debilitating symptom. I would trade this one in exchange for many others.

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Your "movement disorder" is from the damn Klonopin! Especially if you've never had anything like it before. Please, please, please do not let a neurologist or psychiatrist try to convince you otherwise. That psych is full of bunk.  I've had every test known to mankind, prodding and zapping by a neurologist and suggestions that I'm bipolar by a psych. I'm actually a very normal retired professional in the educational field with a public record of normalcy and dependency. And I was a Pilates queen before going into wd. Practitioners have to put your symptoms in a category that matches something they know, and so you can get some really crazy diagnoses.

 

These are some of the weird wd muscle symptoms I've had during the last year of a 2.5 year taper, and during the past 3.7 years post K: Weird twitches and back/forth movements of my shoulders and hips; big spasms in either left/right side of the torso that you can see or at least palpate; torso tightening that's visible to the naked eye; very reactive muscles deep in the pelvic girdle that cause my leg(s) to twitch (my chiro gets big-eyed when I show her this one!); nights with restless legs (this is almost always accompanied with stinging paresthesia); feeling unbalanced/awkward when walking. These do not occur every day and with the same intensity as in earlier years. But I do have one or more on most days on a much lower level.

 

I get some relief by doing daily stretching. Also, as I've mentioned before in other posts, from a gentle type of myofascial release, mainly on the whole back and also front of the my torso.

 

As you know from being on BB, some people are severely affected by the wd process.  A couple of years ago, genetic testing  showed I was never able to metabolize one of K's metabolites, and I think this has contributed to the extent of my nerve/muscle involvement.

 

I expect to fully recuperate even after being on K for 20 years and being in a protracted wd for so long. Please have faith in your own hunches about yourself, and in the body's natural movement toward balance and wellness.

Best

p

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was on clonazepam for 9-10 years at first it was working okay then it changed in early January 2018 and started getting weird side effects: increased anxiety, head twitching, chest pains, and panic attacks

saw doctor and expressed that meds are not making me feel calm or good anymore and i want to get off meds

did a taper and stopped taking clonazepam rather fast after developing movement disorder / chronic head shaking / tremors in legs / trouble walking, etc for the last nine months in addition to insomnia and alot of other symptoms [anxiety, balance, blurry vision, confusion, depression, dizzyness, suididal thoughts, tinnitus]

- anyone else have this kind of experience??

saw neurologist that diagnosed with a "functional neurological movement disorder"

and referred me to a psychologist for 'psycho therapy' claiming the movement disorder is "caused by anxiety and depression" and is talking about how emotions and feelings cause movement disorder completely ignoring the fact that i was on meds for 9-10 years and could be going through withdrawal or nervous system damage possibly low dopamine, gaba, serotonin brain chemical neurotransmitter / receptor imbalances

this "how do you feel" 'psycho-talk therapy' is not making the constant movement disorder or other symptoms go away.

- anyone else have this kind of experience??

 

Emotions and feelings do not cause neurological problems, that psychologist is full of horse shit. This is neurological damage from the drugs you were taking. I have neurological complications too from these drugs, muscle contraction, cognitive damage. There are no tests and no professional knows what has happened. These are experimental drugs and what we suffer nobody can understand.

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Denial, denial, denial. When are these doctors EVER going to get their heads out of the sand???

 

Yes, what you have is benzo withdrawal. The doctors can use all the fancy phrases they want that won't even explain what you have in any way, but the bottom line is that you're suffering from benzo withdrawal.

 

I'm so sorry you were sadly not acknowledged by the medical community, but it is something we all have to learn sooner or later.  :hug:

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Klonopin seems to be to worse in regards to many people having movement and neuro issues after stopping it.  Other benzos can obviously do it too, but for some reason klonopin seem to hit people more often.
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Your "movement disorder" is from the damn Klonopin! Especially if you've never had anything like it before. Please, please, please do not let a neurologist or psychiatrist try to convince you otherwise. That psych is full of bunk.  I've had every test known to mankind, prodding and zapping by a neurologist and suggestions that I'm bipolar by a psych. I'm actually a very normal retired professional in the educational field with a public record of normalcy and dependency. And I was a Pilates queen before going into wd. Practitioners have to put your symptoms in a category that matches something they know, and so you can get some really crazy diagnoses.

 

These are some of the weird wd muscle symptoms I've had during the last year of a 2.5 year taper, and during the past 3.7 years post K: Weird twitches and back/forth movements of my shoulders and hips; big spasms in either left/right side of the torso that you can see or at least palpate; torso tightening that's visible to the naked eye; very reactive muscles deep in the pelvic girdle that cause my leg(s) to twitch (my chiro gets big-eyed when I show her this one!); nights with restless legs (this is almost always accompanied with stinging paresthesia); feeling unbalanced/awkward when walking. These do not occur every day and with the same intensity as in earlier years. But I do have one or more on most days on a much lower level.

 

I get some relief by doing daily stretching. Also, as I've mentioned before in other posts, from a gentle type of myofascial release, mainly on the whole back and also front of the my torso.

 

As you know from being on BB, some people are severely affected by the wd process.  A couple of years ago, genetic testing  showed I was never able to metabolize one of K's metabolites, and I think this has contributed to the extent of my nerve/muscle involvement.

 

I expect to fully recuperate even after being on K for 20 years and being in a protracted wd for so long. Please have faith in your own hunches about yourself, and in the body's natural movement toward balance and wellness.

Best

p

I do NOT trust any doctors now [especially my EX GP Doctor] who completely changed demeanor when I brought up the subject of clonazepam tolerance withdrawal when things started going wrong early last year. ALL doctors denied that my current 'neurological movement disorder' condition [which I never had before ever in my life] has anything to do with the meds. going to see a psychologist is useless sitting there for hours being asked "how do you feel?" over and over when I am shaking / tremoring and can barely talk and think. if it gets better at all it will be with time and if /when hopefully my dopamine, GABA, and serotonin levels and nervous system balance themselves out hopefully through vitamins intake

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was on clonazepam for 9-10 years at first it was working okay then it changed in early January 2018 and started getting weird side effects: increased anxiety, head twitching, chest pains, and panic attacks

saw doctor and expressed that meds are not making me feel calm or good anymore and i want to get off meds

did a taper and stopped taking clonazepam rather fast after developing movement disorder / chronic head shaking / tremors in legs / trouble walking, etc for the last nine months in addition to insomnia and alot of other symptoms [anxiety, balance, blurry vision, confusion, depression, dizzyness, suididal thoughts, tinnitus]

- anyone else have this kind of experience??

saw neurologist that diagnosed with a "functional neurological movement disorder"

and referred me to a psychologist for 'psycho therapy' claiming the movement disorder is "caused by anxiety and depression" and is talking about how emotions and feelings cause movement disorder completely ignoring the fact that i was on meds for 9-10 years and could be going through withdrawal or nervous system damage possibly low dopamine, gaba, serotonin brain chemical neurotransmitter / receptor imbalances

this "how do you feel" 'psycho-talk therapy' is not making the constant movement disorder or other symptoms go away.

- anyone else have this kind of experience??

 

Emotions and feelings do not cause neurological problems, that psychologist is full of horse shit. This is neurological damage from the drugs you were taking. I have neurological complications too from these drugs, muscle contraction, cognitive damage. There are no tests and no professional knows what has happened. These are experimental drugs and what we suffer nobody can understand.

what is even more bizarre is that the psychologist told me that "the neurologist referred me to him because he does'nt think the condition is a neurological condition" after diagnosing me with "functional neurological disorder" it seems they are contradicting themselves and just passing me around and i am getting nowhere; meanwhile i am still suffering with this condition and nobody in the medical community is offering any solutions

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so sorry to hear this again, buddies....

 

been following these few posts RE this problem lately.... almost always Klonopin... hate this stuff.

 

Ajusta - sorry the V did it too.

 

that's why i keep checking this board... really hoping healing comes to you all very very soon.

 

i've already got this while still taking both these poisons -- your posts confirm what lies ahead, alas.

 

wish i'd been allowed to stay on Ativan.

 

yes -- would exchange this horrible SX in a heartbeat.

 

well, i guess it helps a little bit to know we're not alone.

 

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I've been dealing with extreme disequilibrium (feels like I'm on a boat all the time, rocking, push-pull sensation, trapped in a current) as a result of taking clonazepam and SSRIs. It has had a hugely negative effect on my ability to walk and on my foot and leg muscles, which are extremely tight and painful. I even fractured a bone in my foot because of the dizziness, which was a brutal experience.

 

I had the tests done too. All normal. Yes, it's the meds.

 

My suggestion would be to use a walking aid (cane or walker), if that helps you move better. And find a good physiotherapist who can help you stay as strong and mobile as you can during this time of healing.

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Will doctors ever start believing our symptoms are from the benzo drug....just reading everyone posts points to how we are all feeling terrible ...and the doctors I've seen and it's been a lot between dentist and doctors and holistic doctors...none can begin to understand how I feel...it makes me sad how no doctor really believes us....it's very heart breaking!

 

I'm so sorry everyone.....we just need to continue our faith until the healing is done

 

Hugs

TM

 

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Another "movement disorder" I've had, and still have occasionally, is "boatiness" where I feel like I'm rocking on a boat in choppy waters, with an unbalanced push/pull sensation that a BB mentions below. For me, the worst of it dissipated around the 3 year mark. Keep the faith that yours will, too.

 

I really like the idea of seeing a physiotherapist or related therapist if possible. It's very easy to get weak from inactivity, and then unable to properly care for yourself/family. Stretching is extremely important, along with frequent walks.

 

Today, oh, for spasm relief!  Argh!

p

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Another "movement disorder" I've had, and still have occasionally, is "boatiness" where I feel like I'm rocking on a boat in choppy waters, with an unbalanced push/pull sensation that a BB mentions below. For me, the worst of it dissipated around the 3 year mark. Keep the faith that yours will, too.

 

I really like the idea of seeing a physiotherapist or related therapist if possible. It's very easy to get weak from inactivity, and then unable to properly care for yourself/family. Stretching is extremely important, along with frequent walks.

 

Today, oh, for spasm relief!  Argh!

p

 

Oh, I'm so glad to hear that your boatiness is better, pentas! Great news! Thanks for the encouragement! Much needed.  :)

 

I wish you well too.

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was on clonazepam for 9-10 years at first it was working okay then it changed in early January 2018 and started getting weird side effects: increased anxiety, head twitching, chest pains, and panic attacks

saw doctor and expressed that meds are not making me feel calm or good anymore and i want to get off meds

did a taper and stopped taking clonazepam rather fast after developing movement disorder / chronic head shaking / tremors in legs / trouble walking, etc for the last nine months in addition to insomnia and alot of other symptoms [anxiety, balance, blurry vision, confusion, depression, dizzyness, suididal thoughts, tinnitus]

- anyone else have this kind of experience??

saw neurologist that diagnosed with a "functional neurological movement disorder"

and referred me to a psychologist for 'psycho therapy' claiming the movement disorder is "caused by anxiety and depression" and is talking about how emotions and feelings cause movement disorder completely ignoring the fact that i was on meds for 9-10 years and could be going through withdrawal or nervous system damage possibly low dopamine, gaba, serotonin brain chemical neurotransmitter / receptor imbalances

this "how do you feel" 'psycho-talk therapy' is not making the constant movement disorder or other symptoms go away.

- anyone else have this kind of experience??

 

Emotions and feelings do not cause neurological problems, that psychologist is full of horse shit. This is neurological damage from the drugs you were taking. I have neurological complications too from these drugs, muscle contraction, cognitive damage. There are no tests and no professional knows what has happened. These are experimental drugs and what we suffer nobody can understand.

what is even more bizarre is that the psychologist told me that "the neurologist referred me to him because he does'nt think the condition is a neurological condition" after diagnosing me with "functional neurological disorder" it seems they are contradicting themselves and just passing me around and i am getting nowhere; meanwhile i am still suffering with this condition and nobody in the medical community is offering any solutions

 

The Neurologist doesn't know what to do with you so he sends you to a psychologist to show he has done "something". He doesn't want to bluntly say "i can't help you and have nothing to offer". Unfortunately there are no solutions for this. Your only choice is time and look after your health and pray to god it goes away.

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was on clonazepam for 9-10 years at first it was working okay then it changed in early January 2018 and started getting weird side effects: increased anxiety, head twitching, chest pains, and panic attacks

saw doctor and expressed that meds are not making me feel calm or good anymore and i want to get off meds

did a taper and stopped taking clonazepam rather fast after developing movement disorder / chronic head shaking / tremors in legs / trouble walking, etc for the last nine months in addition to insomnia and alot of other symptoms [anxiety, balance, blurry vision, confusion, depression, dizzyness, suididal thoughts, tinnitus]

- anyone else have this kind of experience??

saw neurologist that diagnosed with a "functional neurological movement disorder"

and referred me to a psychologist for 'psycho therapy' claiming the movement disorder is "caused by anxiety and depression" and is talking about how emotions and feelings cause movement disorder completely ignoring the fact that i was on meds for 9-10 years and could be going through withdrawal or nervous system damage possibly low dopamine, gaba, serotonin brain chemical neurotransmitter / receptor imbalances

this "how do you feel" 'psycho-talk therapy' is not making the constant movement disorder or other symptoms go away.

- anyone else have this kind of experience??

 

Emotions and feelings do not cause neurological problems, that psychologist is full of horse shit. This is neurological damage from the drugs you were taking. I have neurological complications too from these drugs, muscle contraction, cognitive damage. There are no tests and no professional knows what has happened. These are experimental drugs and what we suffer nobody can understand.

what is even more bizarre is that the psychologist told me that "the neurologist referred me to him because he does'nt think the condition is a neurological condition" after diagnosing me with "functional neurological disorder" it seems they are contradicting themselves and just passing me around and i am getting nowhere; meanwhile i am still suffering with this condition and nobody in the medical community is offering any solutions

 

Many neurologists do not regard functional neurological disorders as real neurological conditions as there is nothing to show up on tests or scans ..  neurology had no interest in me either .. and they have admitted I am damaged by the benzos . they have nothing to offer and neither does psychiatry.  They offer psychological therapy because they have nothing else to offer.  I have seen five specialists in the UK.

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was on clonazepam for 9-10 years at first it was working okay then it changed in early January 2018 and started getting weird side effects: increased anxiety, head twitching, chest pains, and panic attacks

saw doctor and expressed that meds are not making me feel calm or good anymore and i want to get off meds

did a taper and stopped taking clonazepam rather fast after developing movement disorder / chronic head shaking / tremors in legs / trouble walking, etc for the last nine months in addition to insomnia and alot of other symptoms [anxiety, balance, blurry vision, confusion, depression, dizzyness, suididal thoughts, tinnitus]

- anyone else have this kind of experience??

saw neurologist that diagnosed with a "functional neurological movement disorder"

and referred me to a psychologist for 'psycho therapy' claiming the movement disorder is "caused by anxiety and depression" and is talking about how emotions and feelings cause movement disorder completely ignoring the fact that i was on meds for 9-10 years and could be going through withdrawal or nervous system damage possibly low dopamine, gaba, serotonin brain chemical neurotransmitter / receptor imbalances

this "how do you feel" 'psycho-talk therapy' is not making the constant movement disorder or other symptoms go away.

- anyone else have this kind of experience??

 

Emotions and feelings do not cause neurological problems, that psychologist is full of horse shit. This is neurological damage from the drugs you were taking. I have neurological complications too from these drugs, muscle contraction, cognitive damage. There are no tests and no professional knows what has happened. These are experimental drugs and what we suffer nobody can understand.

what is even more bizarre is that the psychologist told me that "the neurologist referred me to him because he does'nt think the condition is a neurological condition" after diagnosing me with "functional neurological disorder" it seems they are contradicting themselves and just passing me around and i am getting nowhere; meanwhile i am still suffering with this condition and nobody in the medical community is offering any solutions

 

The Neurologist doesn't know what to do with you so he sends you to a psychologist to show he has done "something". He doesn't want to bluntly say "i can't help you and have nothing to offer". Unfortunately there are no solutions for this. Your only choice is time and look after your health and pray to god it goes away.

The Neurologist told me he was referring me to psychology that "specializes in movement disorders"; I asked the psychologist if he does specialize and he replied "I have other patients with similiar symptoms" = non answer = I am being played

It is VERY frustrating going to a psychologist for 3 visits who sits there staring at you for an hour asking "how do you feel?" / "how do you feel towards me?" / over and over again he sounds like a robot / and I am sitting there shaking / twitching and he asks "what are you thinking right now?" ...the guy has no clue; I am trying to tell him my mind is blank when shaking / tremoring but i feel

anxiety, confusion, depression, fear, frustration, panic, and uncertainty it causes not knowing if/when this condition is going to get better or go away completely and trying to understand how underlying anxiety / depression 'Emotions and Feelings' might correlate to the manifestation of 'Functional Neurological Movement Disorder physical Condition' and how a 'Psychological Therapy' approach is going to achieve to fix this condition. he can not / will not talk about after effects of medication and is limited to talking about "emotions and feelings" only

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Will you continue to attend those sessions, clonaz? It sounds very frustrating.  :(

probably not going to continue those 'psychological therapy' sessions because I feel like they are playing me for a fool and not acknowledging well documented research of psychiatric medication adverse effects that can cause functional neurological movement disorder

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Will you continue to attend those sessions, clonaz? It sounds very frustrating.  :(

probably not going to continue those 'psychological therapy' sessions because I feel like they are playing me for a fool and not acknowledging well documented research of psychiatric medication adverse effects that can cause functional neurological movement disorder

 

Yes, agreed. How about some physiotherapy? It has been absolutely necessary for me. You don't need someone to psychologize about something when it's physiological.

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