Struggling with head injury, post concussion syndrome symptoms, drug induced movement disorder and depression

Hi there

I've posted before on other health forums about my drug-induced movement disorder from antipsychotic drugs, tardive dyskinesia, following being prescribed meds for post concussion syndrome after my mild traumatic brain injury / cognitive difficulties. I don't honestly know where to turn any more, as I feel like I'm always putting on a brave face for my family who are supportive but getting tired of hearing the same complaints after nearly a year of my illness.

I'm not on any medication now, but was prescribed various psychotropic drugs to deal with a nervous breakdown as a result of a mild traumatic brain injury that gave me severe post concussion syndrome, anxiety and terrible insomnia for about 6 months. My doc prescribed so many meds including diazepam, sertraline, zopiclone and citalopram... and these worked for a bit but stopped working. Then out of desperation she prescribed a low dose of a typical antipsychotic pericyazine to calm me down, as I was desperate for help and by this stage, her only option left was the crisis team. My awful reaction to the side effects of the drugs was to get a drug induced movement disorder tardive dyskinesia, and no-one expected that, least of all my GP. She even told me not to look up the side effects (as she knew I was worried about all med side effects), and flat-out denied I could have got TD after such a short course of the antipsychotic. People do react badly to drugs, and lucky old me was one of them.

18 months ago, I was happy and had just moved house and was starting a new life with my family in Norfolk. Now every day I fight involuntary oral-buccal-lingual movements and dystonia/tics, constant cognitive symptoms such as an inability to understand language/acquired dyslexia (which manifests itself in not even being able to understand the language of my thoughts sometimes), and awful 'mind blanks' / moments where my brain will literally 'freeze' and I'll fight to get it going again. It's like it gets stuck in first gear and goes completely blank. Silence scares me as all I can hear is the 'emptiness' and silence in my head. I seem to have also lost the ability to visualise images in my mind now, so all I see when I close my eyes is just the colours and patterns made by the light on my retinas from behind my eyelids.

I don't feel like I actually have a life I know or enjoy now. From the outside, I have lots to be envious of; a good job working from home, a beautiful daughter and supportive loving husband and family, and a family home. Inside every day I sit and crumble, totally depressed at the damage my brain has sustained from a head injury and psychotropic drugs.

I can't see myself living another 40 years or so like this. There is so much to enjoy in life but I find constantly fighting my dyskinesia, cognitive difficulties and covering up my feelings to my family who are fed up with my whinging very exhausting. I just want to stop and rewind, go back to when I enjoyed and actually lived life.

Every day, I just feel I exist. I don't know how people with chronic pain or illness are supposed to keep going all the time without feeling p*ssed off that life has dealt them a bad hand. My family say things like 'life goes on' and 'it will get better' but they don't understand the social stigma of a movement disorder and how much it has affected my self esteem and ability to live/enjoy life.

I'm so unhappy deep down but am not sure how long I can keep up a facade of being relatively positive and optimistic about things improving, when over the past 10 months, they haven't really. :-(

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  • I have had a similar less severe experience from a prescribed drug overdose. I don't remember the drug that put me over the top except that it was an antidepressant at a much higher dose than I was taking. The first symptoms were involuntary muscle movements, every muscle in my body. I couldn't speak, only make sounds. I was terrified, went to ER and they were determined that I had taken the meds on purpose. They gave me 2 shots of valium and were talking about sending me to the physco floor. That was when my body started torqueing .I would literally twist and come up off of the bed. I was begging for them to knock me out but was told it would kill me . I also remember the vivid colors that outlined everything. like neon lights. I finally passed out on my own and was sent home the next day with the advice to seek counseling . For about a year I would have reoccurrences of these symptoms, but not as severe. The only thing left is my green eyes look turquoise to me every morning and I don't know where I am for a few minutes. It was a horrific experience and I was treated very badly at hospital. My own family thought I should be able to control it and if the hospital sent me home it couldn't be too bad. After reading your experience I think I was probably lucky. I hope you will recover from this although I suspect it will take time. Be good and patient to yourself. Welcome to the forum, we are good listeners. Pam