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

(4 Posts)
NooNooHead Thu 27-Oct-16 15:42:59

Hi there

My life feels like it is stuck in an awful 'Groundhog Day' scene where nothing can change or is changing, and everything I do makes no difference to my situation. At all.

I'm 'stuck' in limbo, hoping my finances, work and family situation will improve but am hopelessly restricted by recent ongoing health issues that don't seem to be getting better any time soon.

Sorry for the long ramble I'm about to post, but I need to vent / rant and I am having a bad day, which prob makes my post and situation worse than it is.

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.

I've seen five neurologists, four of whom say it is a functional movement disorder and that I will never get such a reaction from such a low dose, and another private one who is convinced I do have TD. I've also had CBT, seen a psychiatrist and a psychologist as well as been back and forth to the doctors more times than I care to count.

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.

My symptoms have hardly improved, and are socially embarrassing / isolating. I'm lucky that I work from home or God knows how I would cope in an office, grimacing and lip smacking and pulling odd faces. I've wanted to have a sibling for my 5 year old daughter, but haven't been that careful over the past few years... And despite this, nothing has happened. It breaks my heart to think I might never have another one and that my work and career options are now limited because of my health, which in turn restricts finances and any more children.

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. :-(

AnxiousCarer Thu 27-Oct-16 17:00:51

Hi, I've worked with people with functional movement disorder and once with someone with tardive diskineasia in combination with this. I am by no means an expert. I have a physical health backround with very little proffesional MH experience and find these conditions very challanging to work with due to this. I do know that there are occupational therapists and physiotherapists out there who specialise in functionsl movement disorder, it may be worth looking into this if this is not an avenue you have been down yet.

NooNooHead Thu 27-Oct-16 18:04:27

Thanks for your advice... I might give that a go. I made a formal complaint about my GP so am reluctant to go back to her any time soon in order to get more help... I might leave it a bit and see how things go, or whether they improve.

AnxiousCarer Thu 27-Oct-16 18:42:30

In my experience when someone complains in NHS they do everything possible to avoid another complaint. Could you ask to switch to another GP in the practice? Your local teams may not have much experience but are a starting point. I know its an area that my local teams have been getting more training in in recent years.

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