New here... Struggling with mTBI, post concussion syndrome and drug-induced movement disorder

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.

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 orobuccal 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 abd 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. :-(

8 Replies

  • You seriously need to sit down and show this post to your GP for you own sanity

    Lewann x

  • I feel so very sad for you and I really feel for your situation. I also think speaking to your doctor as advised and maybe you could ask to join a group therapy to see if speaking to like minded people will help you. I am sure if you ask your doctor to refer you to a therapist it might help and could open doors to other agencies.

    Also write a diary and compare each week with how you feel it might help. When you have a good day place a star and so on. You have so much to give little steps. Lots of love Liz 🌹

  • Hi Liz

    Thank you so much for your kind words and for your advice. It's true, there is only so much I can do each day, and taking each day at a time is key.

    I've had a lot of therapy, seen a psychiatrist, psychologist, neurologists, stress counsellor and CBT therapy counsellor and am really trying to be positive every day. I guess with time will come acceptance.

    It's just the lack of understanding and empathy that I don't have from anyone that hurts the most. And knowing that things will take ages to get better - 3-5 years is the estimate for my movement disorder to improve and that's not guaranteed... :-(

    Still, life goes on. I may go to my doctor and show her this email, after all, she was the one who prescribed the stupid drug that gave me the movement disorder...


  • Bless you, you are in early days, ( not much help ) but it is true. Take each day as a new day and as I say baby steps. I suffered a TBI, stroke and post concussion syndrome on the 6th of December 2014. Since then I suffer from a severe tremor to both hands and right leg and tinnitus, I fell yesterday getting out of the bath so am nicely bruised on my arm and face. 🙃 But today 😀

    Unless you have suffered or are suffering from a brain injury you do not understand how we feel. Headway and the lovely people on our forum are spectacular and because they have, and are suffering from brain injuries they truly understand how we all feel, and can relate and understand.

    Maybe your family and friends should read some of their true symptoms and stories and then they can try to understand how you are feeling.

    Shame people cannot walk in our shoes for a few days. !!!

    With Love Liz xx🌹

  • It is very early days, you're right. So much to understand and learn, and to get used to.

    Prior to my injury, I was a high functioning, high achieving journalist and copywriter, used to intellectually demanding tasks and being able to do these quickly and with ease. It hasn't been easy to accept that my level of functioning has been reduced, and having experienced language difficulties bordering on almost dyslexia, I've found it hard to keep going and do my job no matter what. I'm very fortunate to have an understanding employer, and to be able to work from home, as God knows what I'd do working in an office trying not to have involuntary movements which involve a lot of lip smacking/tongue protrusion etc. and odd involuntary arm movements etc.

    Such a great combination of BI and movement disorder symptoms, huh?! Lol! I'm so sorry to hear of your suffering and symptoms too, and can truly empathise and relate to your tremor and movements, and lack of control of your body. It takes effort to get used to not having control, and I guess that's where being relaxed and taking things day by day help.

    If you ever need anyone to chat to, please feel free to contact me. This forum seems very good and I'm so pleased I got in touch with Headway to find out about it.

    Stay strong. xxx

  • Dear NNH1981

    I am so sorry that you are not finding the kind of support that you need from family members, particularly given the isolating factors you are facing. Family members who do not understand or know how to deal with long term symptoms seems to be the most common challenge faced by people on this site. I really like Liz' suggestion of having your family read posts. I am a family member rather than a TBI sufferer and this site has given me valuable insights especially about the amount of patience that it takes on the part of everyone involved. Without this group I would be very slowly and and ineptly bumping through my relative's TBI.

    I would also recommend gently letting your family know that trying to make you feel better or more optimistic is good, but it is not the only thing you need from them. I remember making that mistake when my mother was very ill. I did not recognize that sometimes what she really needed was someone to feel bad or angry or sad about her situation with her, so that she did not have to go through those emotions on her own and put on a happy face with us all the time. I wish someone had guided me on that for her sake. You deserve ongoing empathy.

    You seem like a very strong person. I am reminded of a fact I learned in business: (Customer) Satisfaction is the difference between their expectation and their experience. It is the same for all of us. When we are used to a certain level of functioning it becomes our expectation. Experiencing much less capability understandably makes us very unhappy/dissatisfied. With that logic, in the short and medium term, it seems that the only way for you to get more satisfaction from life is to truly redirect your expectations. Is it possible for you to actively focus on one or two satisfying things you still can do and make those the focus of your free time and thoughts as much as possible? Perhaps the ability to enjoy music or art have not been as affected by your injuries/disorder? I do hope that you find that something other than your losses can live and grow in your daily experience. I am rooting for you.

    All the best.

  • Hi,

    Im really sorry reading your post - it's sounds like a nightmare. I didn't know drugs could cause somethung like that must have been devastated. Something that you're taking to make you well shouldn't do that :( I've refused all the drugs I've been offered (apart from anti epilepsy) because I feel so spaced out all the time,mi don't want to take something that makes me feel more spaced out. Some of the the things you have are similar to tics aren't facial (only very occasionally) , but arm and shoulder movements. This is a big improvement on the 'whole body' tics/movements I had straight after the accident for a long time, so I presume it's improving? I'm waiting to see a consultant about this and other things. I also get the 'mind blanks' and word loss you mention, but mostly this is afternoon and evening or when I'm tired out. I can't sleep properly at all and don't manage rests very well, so it's partly my own fault. I used to be frightened of it, but I realise now it's just how it is. I think it's gotten worse because I'm talking at s proper speed now. Maybe slowing down a bit would help, buts it's hard. I understand what you say about family and the end you just just don't say anything because you don't want to sound like you're people think you're all fine now :( . I wish you all the luck with finding better care for your symptoms - sending you a hug. I agree with everyone else, print tour post off and take it in and show the GP. Take care. x

  • Hello everyone

    Thank you for all your kind replies. I've had more empathy from all of you recently than all the medical professionals over the past 10 months to be honest. That says something...

    It has been a complete and utter nightmare, and every night I pray that these things don't happen to anyone else. :-(

    I was actually in touch with a lady called Katinka Newman, who has written a book 'The Pill That Steals Lives', all about the side effects of antidepressants and how they stole a year of her life.. I know we're prob not allowed to post links on here, but if you go onto her website and look up 'Temporarily Stolen Lives', you'll see the bit about me and antipsychotics.

    Drugs have been the bane of my life to be honest, and any form of psychotropic medication is now completely a no-no. My psychaitrist said that I was 'bloody bloody unlucky' to have the reaction that I did, and that he hadn't seen anyone with TD for a very long time. (Great...!)

    Most of my head injury symptoms, I could cope with... it's the lack of control over my body and movements that is so rubbish.

    Yes, there is an element of being very strong - but to be honest, if I wasn't, what would there be left? To sit and turn my back and face the wall? To give up? I've only met a few virtual online friends with tardive dyskinesia and all of them seem to know how social embarrassing and disfiguring it is - look up on videos of it and you'll see how awful it can be. Coupled with my cognitive problems, I'm surprised I haven't jumped out of the nearest window to be honest.

    My family is what keeps me going really despite their lack of ability to truly understand. I guess they are in denial about how bad it is in a way, and don't like to face up to what has happened to me. I suppose if I take that attitude, maybe I would be able to get through it more easily - accepting that I am 'broken' and not functioning as I once was is so hard and soul destroying.

    Bless you all - it is times like this that you realise how understanding and kind some people really are. Thank you. :-)


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