Ok, v long story short… I’m not schizophrenic but had a breakdown after a head iniury, post concussion syndrome and trying lots of psychotropic meds that didn’t work.
I’m so ANGRY about getting TD after such a short period of being on pericyazine. I was told by my GP in the UK not to look up the side effects, and only one of the five neurologists I’ve seen has properly diagnosed TD. Even the supposed TD expert in London says it’s more about managing my symptoms rather than the diagnosis… not v helpful when he isn’t the one lip smacking and grimacing every day!
My psychaitrist says I was just ‘bloody bloody unlucky’ to get TD and the neuro who diagnosed it said I should never have been given the drugs with my medical history and head injury. Doctors seem to have all the answers but can’t really help when they get it wrong. Meh.
Luckily my symptoms have lessened after over a year of TD but in this country, hardly anyone has heard of it and treatment is pretty non-existant. It sucks big time. I understand doctors do their utmost to help and no-one expects their patients to have the ‘rare reactions’ but it makes me so sad that all of this could have been avoidable.
If anyone has any tips or success stories that will give me hope, please tell me as I’m just about hanging in here with all the cognitive symptoms of my post concussion syndrome and my involuntary movements of TD…
Vitamin B(6) appears to be effective in reducing symptoms of TD. The specific mechanisms by which vitamin B(6) attenuates symptoms of TD are not clear.
It sucks but what can I do? I had a very severe dystonic reaction to the pericyazine including back arching and grimacing along with very annoying kissing / lip smacking and abdominal tightening - all of which were very scary at the time. No-one even though to say ‘watch out for these reactions’.
I hate psychaitry sometimes. Being sociable and living a normal life is hard, and I get v down about it.
Lawyers here don’t tend to touch these cases with a bargepole as they will say it is v hard to prove that my doctor was acting negligently - she was only doing what she thought was correct at the time. So I guess I don’t have much of a case really.
TD is crap. I know it sounds glib but I honestly wish I had something less visible - you can’t hide ‘Tourettisms’ and odd facial movements
When you can’t hide it, embrace it. I’ve got some pretty visible quirks myself. My solution has been to go out of my way to let the community know I’m a (harmless) eccentric. I always wear a bowler hat. I have an old style pocket watch. I always wear shoes that match, but with mismatched colours (I’ll buy two pairs in the same style, but with different colours). I have a walking stick.
You’ve got nothing to be ashamed of, so just go for it!
I’m really not that outgoing a person, and had social anxiety before TD, so imagine how I feel now! LOL!
I guess there is the possibility it may go away with enough time.
The only drug I’ve been toild may help is tetrabenazine, and even then it has Parkinsonism and depression side effects - something I would do my best to avoid at all costs!
Life goes on and there are worse things to have I guess. Maybe I will become an eccentric who just had odd tics etc and make the most of them! Lol!
I live in the uk too. Not once have I been warned about side effects from GPs or psychiatrists. I now have metabolic syndrome from clozapine and quetiapine and am looking at a lifetime of diabetes. Was never warned about that.
I think here the doctors worry if you were told about the side effects of APs you would never take them. They are probably right.
The question is who they are trying to help, the patient or society, because if they give medication that causes more symptoms than it alleviates then that’s obviously not a real help.
