Tardive Dyskinesia

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Tardive Dyskinesia
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    I'm new here!

    Hi, my name is jaecybone. I'm here because after 15 years of being on Seroquel (2006-2021) for what was prescribed to me for PTSD and Insomnia. I had a lighting bolt moment 11.14.7.229 Sunday @ 1:30pm and it told me to throw out all the Psych Meds. I became completely cognizant for the first time in YEARS. And my weight and "physical" health were getting better by the day. I was 220 lbs. @ 5' 7", Kidney Enzymes Crazy High, Liver not doing well - Basically dying when I stopped Seroquel all together. Within 3-4 months I had lost 50 lbs. I got in shape. Best physical shape of my life probably. Then came the ticks, twitches, mouth, face, hands, neck, cheeks - Concentration issues. The Cognitive impairment...Every one thinks I am just Crazy, on Booze or Drugs. I try to tell the ones closest to me about what I found out about what was happening to me and the drug Seroquel, they don't even believe me and/or care at this point. I don't even want to leave my house now. Too scared.

    #MightyTogether #TardiveDyskinesia

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    See full photo

    TD Webinar, Tues. Oct. 4, 11:30 ET

    Join us for a Zoom TD "Lunch and Learn" in association with NAMI. Register now: us02web.zoom.us/meeting/register/tZcpcO6hrj0qH9Invdx1gM7KhP-me-c27FAB

    #TardiveDyskinesia #TD #tdawareness

    Post

    Public service announcement

    #TardiveDyskinesia

    Tardive Dyskinesia is brain damage. It is a medically induced (iatrogenic) INJURY caused by 500 different drugs often used in psychiatry, gastroenterology and Parkinsons. People are rarely told of the risk. It's often referred to as a side effect of the medications. This is offensive as a side effect is not a crippling life long disease. Tell the truth psychiatry and western medicine. Your drugs harmed us...own it and start telling innocents of the risks basefore you drug them.

    Post

    Life with Tardive Dyskinesia

    hello! good to be here. thank you Thomas! Looks like a great group. I'm happy to be here. Here is the article you suggested I share.

    the below is the text to the article. there is a video on the site it comes from that is very much worth watching (9 minutes long) beyondmeds.com/2022/09/14/life-with-tardive-dyskinesia

    I’ve posted a couple of times about having TD. It is an awful debilitating, crippling and disfiguring disease caused by iatrogenic injury. I just discovered the National Organization for Tardive Dyskinesia so I thought I would share. There is very little accurate or clear information about this disease. I have avoided doctors mostly as I’ve not encountered anyone that seems like they would do anything other than harm. Neurologists who treat TD are prone to use psych meds and the MDs I saw mostly shamed and dismissed me as crazy. I did have a psychiatrist who was also a friend diagnose me and it’s very clear that I have TD. I go from being physically okay to being able to hardly stand up in the same day. I suffer from acute and chronic pain in my face, head, neck and shoulders. I am often totally unable to function as a result of this drug injury. I’ve written very little about it because this site was about recovering after coming off psych meds and well, I’ve got my mental health but I am not well. It’s likely I will never be well. My only goal now is to learn how to cope better. As readers of this site know I’ve exhausted all manner of behavioral and lifestyle healing methods. This is not an easy ride.

    (video is placed here: beyondmeds.com/2022/09/14/life-with-tardive-dyskinesia/)

    My work on TD is below. I’ve experienced it very much in my own way and written very little. Perhaps I’ll write more moving forward. My experience suggests systemic infection as it’s clearly involved with the various systemic infections I was diagnosed with as Lyme Disease. (Lyme is amorphous systemic infections that vary greatly from person to person depending on the combination of pathogens…if the organisms associated with Lyme disease is presnt you can say you have lyme disease…it seems to me many people have systemic infections complicated by heinous biofilms that don’t always get diagnosed as lyme…so I don’t really like that diagnosis as I think it’s lacking in clarity.)

    TD also varies greatly in severity. It seems the brain injury from long term use and withdrawal made mine severe in some pretty particular ways. I look forward to getting to know others with TD and am scheduled with a group support meeting at the organization that made the video.

    My pieces that include my early musing on TD: for links go here: beyondmeds.com/2022/09/14/life-with-tardive-dyskinesia

    6 comments
    Post

    I’m new here!

    Hi, my name is NOTDbill. I'm here because
    i am a caregiver for someone who has tardive dyskinesia and tardive akathesia. I also work for the National Organization for Tardive Dyskinesia. We provide online support groups via Zoom for those with TD.

    1 comment
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    What do you do when taking Seroquel might cause diabetes or small risk of tardive dyskinesia and there are no guarantees the med will help depression?

    see above ##Bipolar 2 so much depression

    4 comments
    Poll

    I am curious what dx'es you all may have or suspect

    0% ●
    Tic disorder or Tourette's (started in chilhood)
    13% ●
    Functional Neurological Disorder (FND)
    0% ●
    Tardive Dyskinesia (tics / movements caused by antipsychotic
    7% ●
    Restless Legs Syndrome
    13% ●
    Skin picking or hair pulling
    67% ●
    Other
    15 votes
    Post

    ANOTHER UPDATE... neurology appointment today #TardiveDyskinesia #TicDisorders #RestlessLegsSyndrome

    I hope this message finds you all well... and if it doesn't... sending good vibes your way!

    I just got back from a neurology appointment. It turns out I was misdiagnosed with Restless Legs Syndrome (I do not have it, but have been taking unnecessary medication for it) but I DO have a childhood tic disorder that is mostly in remission along with the more bothersome Tardive Dyskinesia.

    TD, for those that don't know, is caused by taking antipsychotic medications for long periods of time. It's relatively rare so if you're on antipsychotics please do not worry-- but I seem to be having symptoms of it.

    Luckily my TD is relatively mild but still bothersome regardless.... I am grateful to have found some answers and that I will be coming off the RLS medication. As for the TD, we are waiting for now on whether or not to add medication for that.

    Does anyone else here have Tardive Dyskinesia?

    2 comments