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Hello! Amongst other medical problems/physical disabilities, I suffer with Tardive Dyskensia (TD), a movement disorder linked to years of (now confirmed inappropriate) prescribing of anti-psychotic drugs in my late teens and twenties, although I only became symptomatic of the disorder years after the cessation of said drugs. The symptoms are disabling, embarrasing, and cause me a lot of distress - constant shaking (especially noticeable in my hands), sudden involuntary, jerky limb movements, and paticularly embarrassing facial movements such as lip pursing and smacking, jaw movements, and facial twitches - I get stared at *a lot*... I'm yet to meet - even online - anyone else with the same diagnosis that I can identify with, only those still having to take such meds due to their disabling psychotic conditions, and I feel very alone. I also have other physical problems that are complicated by this disorder - for instance, I have a disc/neurological disorder in my neck and back that causes a lot of pain, and the usual treatment involves spinal injections - but as it's physically impossible for me to be still, it's considered too dangerous, and there I have to take ever-increasing doses of highly addictive, controlled drugs - besides, getting a clear MRI scan is near-impossible! Also, because of constant jaw movements, wearing dentures (l lost teeth due to having Sjorgens Syndrome, causing a dry mouth) is only possible for short periods, as I get painful sores on my gums, and have been told that the only solution would be to have implants, which may - or may not! - be available on the NHS... However, I feel one of the biggest effects may be on my mental health - I'm constantly on antidepressants, I've become agoraphobic, and have developed OCD, which apparently stems from a needing to be in control of *something*, as I can't control my own body? Also, explaining the condition to others is something I find very difficult, maybe due to the link with anti-psychotic drugs? It doesn't help when no-one but neurologists and mental health professionals seem to have ever heard of TD!
So here I am, being brave and putting it out there - thanks for reading! Is there anyone out there who can identify, that I can share experiences with? I feel such an oddity, and very alone...
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