Newbie to group, diagnosed with Tardive Dyskinesia 15 years ago

Posted , 6 users are following.

This discussion has been locked due to a period of inactivity. Start a new discussion

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...

1 like, 11 replies

Report

11 Replies

  • Posted

    Hi TriciaK

    I am very sorry to hear you're suffering with TD.

    I too have possibly TD (my neurologist has decided to keep me sane psychologically and say it's a functional movement disorder!) and have lip smacking, grimacing and tongue movements - all from one week's worth of the anti-psychotic pericyazine! I am utterly embarassed and annoyed that my life has been irreversibly changed by such evil drugs and want to really try and reach out to anyone who has the same condition.

    My neurologist actually described my condition as 'functional orobuccal symptoms' and I am also at a loss for anyone who understands and treats it.

    We are very much alone I'm afraid and I feel so depressed evert day. I am on Citalopram at the moment and it seems to mask the symptoms but I am scared to come off them for fear of the TD getting worse.

    I'll reply with a longer message soon

    xx

    Report
  • Posted

    Also, I have only managed to meet one other person in the UK online who has the same disorder, and has tardive dystonia too, poor lady.

    The medical profession is a disgrace and should be really under fire for prescribing such powerful meds for (me) which was anxiety and insomnia.

    I hate the thought of being like this forever - I know it's a very negative outlook but I'm only 35 tomorrow (!) and have suffered with this for just 4 months. It feels like years, and God knows how I'll get through the rest of my days like this. Most people are understanding but it's the odd moments when I'm in public or a quiet place and the lip smacking becomes noticeable, not to mention the odd sensations in my tongue from constantly rubbing against my bottom teeth.

    I would go so far as to get deep brain stimulation to get some relief and quality of life. No-one else seems to be so freakish and lip smack / tongue protrusion all the time. I do feel very alone like you say, and a bit of a freak neutral

    Report
    • Posted

      Thank you so much for replying! Although I wouldn't wish this disorder/symptoms on anyone, it's good to know I'm actually not alone - and neither are you! Although I'm (obviously!) not a neurologist, such facial symptoms do seem to be typical of TD, and there are, sadly, cases in the literature of patients developing the disorder after even short courses of anti-psychotic drugs... so I can certainly understrand - and share - your anger! In my own case, it was after being committed to hospital, aged 19, following a serious suicide attempt... I was highly anxious, scared, and wanting to leave, so they gave me high doses of these drugs to 'calm me down' - I now know they were colloquially known as 'chemical straitjackets'! I has no idea at the time that they were anti-psychotics, and continued to take them at various for several years post-discharge, despite never being diagnosed with a psychotic illness...? Btw, I'm 43, and live in northern England - where are you from?

      I'd very much like to talk with you some more - I'm not sure how to go about it on this site, but could we possibly get in touch? Even just for a chat - there's more to us than our symptoms, of course, but maybe having friends who know what we're going through can help us feel less like freaks, lol! x

      Report
  • Posted

    By the way, please forgive any typos and fractured sentences, I'm yet to find the 'edit' button!
    Report
  • Posted

    I'm from the East of England btw and am finding it tough getting my head around the fact these symptoms don't seem to let up much and keep on coming.

    I actually found another lady on the Dystonia society forum pages with a post about a year ago,and how she had the tongue symptoms of her tongue pushing against her bottom teeth... Exactly what I have. It is so odd to think such a chemical imbalance can cause such disabling and uncomfortable symptoms :-(

    Xx

    Report
  • Posted

    Hi my name is marianne. I am going through the same thing as you.years of missdiagnosis now after years on first generation antipsychotic meds which i complained were making me ill a gp suddenly diagnosed me with TD after i looked up my symptoms. I also have dystonia and akanisia from the meds.I have a lot of health problems and the gps said my pain was hypercondria and i had mild bipolar and psychosis .I believe bought on by an anxiety causing lack of sleep which turned me psychotic. I had high blood sugar due to meds and they said i was not diabetic and high liver enzymes and got jaundice of skin,they said it was all in my head. tried to sue the gp for not reviewing meds in 3 years and they told my solisitors a load of lies so they would not take on the case and told me to stay on the antipsychotic meds,even psychiatrist said the same. I changed gps and because the olsd surgery lied about me i was only alowed to see 2 gps.one i was rolling on floor at surgery in gripping stomach pain and one of my gps said as he walked past angrily get up marianne ,just get up and stop ringing surgery. on one lucky occasion my gp was off and they let me see another,he was brill, he took one look at me and said your looking a bit jaundiced better order liver function tests and that night i was in hospital for 3 nights with liver enzymes so elevated billarubin 225 instead of 20 alt 400 not 30 and gamma gt 700 not 40.i had gaul stones. they let me out saying i would need an opp and the nice gp saw me again and asked y the hospital didn't test for pancreatitis and orderd blood test which came back possitive then i was addmited to hospitala nd was on a glucose drip for 3 days given an mri altho last gps said i couldnt have one as i had been sterilised using metal clips which was a lie and was diagnosed with acute pancreatitis due to a gaul stone getting into my duct and causing imflamation and i was put on antibiotics.when i could eat they tested my blood sugar and it was 20 not below 6 and now i am diabetic and the hospital said all this was caused from my long term use of the antipsychotic med which my gp said i should take so did psychiatrist and said mind benefits more then the fact my blood sugar was going up 2 years ago tested by my mum on her machienand gp went mad when i told her i took my reading and said diet and excersise.now as a result of all thease health conditions i have fibromyalgia too and am going to rhumatologist as have other symptoms and worried i have med induced lupus.i also have sores in my mouth and gp takes no notice.my bones in my back are hurting all time and my legs too.my muscles are messed up and have lost 3 stone in 6 months my new gps neglected me on lies old gp said and the only 2 gps who i am alowed to see are taking their neglect out on me by not refuring me to rhumey and saying they have think she is scared they may find something else.other gp told me to take 4 diabetic pills a day hospital said one for now.i got a chest infection so couldnt have gaul bladder out smoked cos of stress being called a lier for 8 months and i had given up for over 7 years.now on e cig to give up. my psychiatrist cancelled my appointment and isnt seeing me for 2 weeks and all i am alowed to take is diazapam and am not being given anything else to calm the stress they caused because hospital wrote all my conditions were caused from antipsychotic meds. i understand what you are going through,the lip smaking and twitchy eyes and shakes and inner tremmors and heart palpertations are driving me mad and i can barly walk due to back and leg pain. my house is council rented and full of toxic black mold which makes me more ill with chronic rhyonitis and nose bleeds and confusion and depression and i believe i was wrongly diagnosed for years ,even my nice psychologist said clearly im not a hypercondriac as i have seriouys health conditions and haveing no sleep for 3 days due to stress would turn anyone psychotic and the lies they wrote about me s

    to solisitors saying im anurexic,lol i was 13 stone dur to anti psychotic making me eat and sleep all day and now i lost weight suddenly due to diabetis that they said i didnt have,they said i was schitso and had hypercondria so the solisitors wont take it on.

     

    Report
    • Posted

      Hi there

      I'm so sorry to hear of your dreadful experiences and health problems.

      I had severe anxiety and insomnia last year after a mild traumatic brain injury and I was so sleep deprived for about a month and a half that the GP considered calling the crisis team... And instead put me on first generation anti psychotic meds and said 'Don't look up the side effects' and there was no patient info leaflet in the box either..,

      Bloody insomnia, post concussion syndrome and terrible powerful anti psychotics have left me a mess, and after getting an official TD diagnosis this week, I am so glad someone has finally taken me seriously and diagnosed what I believed I had for months. It's such a relief but I hate the fact that GPs can prescribe such strong meds, which I believe only a psychiatrist should be licensed to do, and only for the most serious of cases.

      It would be great to be free of this horrible condition... But in an imperfect world, this won't ever happen. I hate psychiatry with a passion.

      Report
    • Posted

      Yep, I get the twitchy eyes (oculogyric crisis) from time to time too, as well as random involuntary movements of my limbs too... Great!
      Report

Join this discussion or start a new one?

New discussion

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up