I had a head injury then suffered from a medication induced neurological involuntary movement disorder- AMA

[NooNooHead1981]

I had a head injury (a mild TBI which didn't leave me unconscious, just concussed), but it did leave me with post concussion syndrome for about 6 months which led to a mental breakdown.

I was then prescribed a first generation typical antipsychotic called Pericyazine off label for severe anxiety and insomnia, that I suffered an adverse effect from. It gave me a permanent neurological involuntary movement disorder called tardive dyskinesia that is a bit like Tourette's and Parkinson's disease combined.

AMA 🙃

OMG..I'm so sorry to hear that..how awful. I really feel for you and wish you the best.

I can't pretend to know how things are for you now but I'm 2 months on from a head injury which sounds like yours and I've been diagnosed with post concussion syndrome. My constant anxiety is off the scale. The symptoms I have - leg weakness/numb feelings/pressing down on limb sensations/weakness/agitation/feeling like I'm on a boat with motion - have led me to believe I've got Ms or Mnd and I'm in a cycle of dread/ pushing for further neuro checks (head scan clear/mri next week).
My previous happy/active/fit self has vanished. My poor family are at a loss to know how to deal with it all.
What shocks me is how little gp's/NHS 111 etc know about this syndrome. Because I didn't black out no one thought the huge hard slam on the head with a door was relevant until I got a bit dizzy a week later.
Even though I had a private Neuro refferal I've had to research alot myself (Headway site has been v helpful) and I now know I've not been doing the right things (but TBH not sure I can avoid alcohol/ screens/books etc easily whilst being like this and not having the energy to do much else.

So once again I send love, best wishes and hopes for you at what must be a very difficult time.

Hi 👋 I'm so sorry to hear that you have had a head injury and post concussion syndrome too. It's an incredibly difficult thing to get through, and I have total empathy in just how difficult you must be feeling right now.

My symptoms straight after my head injury were tingling and numbness in weird places like my hands and arms, very slow thoughts brain fog, the inability to understand the written word and to read properly, loss of my mind's eye (which still hasn't come back 😢), and what I call my 'Alzheimer's moment ' where I was outside and didn't recognise the street down the road from me.

It was a horrible, frustrating, frightening, uncertain time, and I was highly anxious about all the physical symptoms of it, which eventually made me have dreadful insomnia and a breakdown.

I'll try to message again in a bit, I'm just getting my children to bed.

Thanks for replying! I have woken to another day of dread after a bad night but so glad to have connected with someone who had similar. But the symptoms you had right after your injury were far worse, just awful for you. Mine got worse as time went on..perhaps that's the anxiety. And as I say I am now in fear of having a dreadful neurological condition. Plus the Drs did a raft of blood tests and have picked up incidental, possibly scary stuff so await more tests for that too.
Right now I feel utterly dreadful. And my daughter is home from uni with her own mental health challenges so trying to be brave for her sake.
How on earth did you manage with a younger family??
I really hope you are doing ok now and thanks again for getting in touch.😀