Tardive Dyskinesia

Join the Conversation on
Tardive Dyskinesia
958 people
0 stories
172 posts
  • About Tardive Dyskinesia
  • Note: The hashtags you follow are publicly viewable on your profile; you can change this at any time.
  • Explore Our Newsletters
  • What's New in Tardive Dyskinesia
    All
    Stories
    Posts
    Videos
    Latest
    Trending
    Community Voices

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

    <p>TD Webinar, Tues. Oct. 4, 11:30 ET</p>
    Community Voices

    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.

    Community Voices

    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 people are talking about this
    Community Voices

    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 person is talking about this
    Community Voices

    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 people are talking about this
    Community Voices

    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?

    1 person is talking about this
    The following promotional article is sponsored and developed by Neurocrine Biosciences

    How I Partner With My Doctor To Manage My Tardive Dyskinesia (TD)

    Taking certain mental health medicines (antipsychotics) for a while can cause abnormal dopamine signaling in the brain, which can lead to uncontrollable body movements called TD. Bethany shares the story of her TD diagnosis and treatment and how important her relationship with her psychiatrist has been to her journey. My Tardive Dyskinesia (TD) Diagnosis I just couldn’t believe I had TD. I was diagnosed with schizophrenia 10 years prior and had been taking mental health medicines (antipsychotics) for several years when I first started experiencing uncontrollable movements in my lips and face. I kept smacking my lips, licking my teeth, and moving my mouth like I was chewing gum, even though I wasn’t. Needless to say, I found these uncontrollable movements really disturbing, and I started getting awkward and self-conscious about them — even with my family and friends. I had done a lot of research about mental health and antipsychotics, so I knew about TD. But the examples I saw in videos and read about looked so extreme — more so than what I thought was happening to me. Because I had been taking antipsychotics for so long and my uncontrollable movements didn’t seem extreme enough to me, I didn’t recognize that I had TD. The first person to notice my TD movements was my psychiatrist, who has a lot of experience diagnosing and treating TD. My psychiatrist told me that sometimes a TD diagnosis takes patient self-advocacy and a few visits, but my movements were so apparent to him that he was able to diagnose my TD quickly. Working With My Psychiatrist I first met my psychiatrist over a decade ago, a year after I was diagnosed with schizophrenia. I was struggling. When I was first diagnosed, I was told by another doctor that I was permanently and totally disabled from schizophrenia. Then I met my psychiatrist. He took the time to listen to me and helped me find an antipsychotic treatment regimen that worked for me. My psychiatrist and I are in frequent contact, and I’m never afraid to talk to him about anything. I think of him as a partner in my mental health journey and we talk about and make decisions about my treatment together. After researching and talking together about INGREZZA ® (valbenazine) capsules, I knew that it was the right choice for me to try for my TD. INGREZZA ® (valbenazine) capsules is a prescription medicine used to treat adults with movements in the face, tongue, or other body parts that cannot be controlled (tardive dyskinesia). My psychiatrist told me that the most common side effect is sleepiness. Please see Important Safety Information below It can be a little intimidating to start a new medication, but learning and talking about INGREZZA with my psychiatrist put my mind at ease. It was important to me that, with INGREZZA, I could treat my TD without disrupting the progress I’d made treating my schizophrenia, as I had fully recovered and returned nearly to my baseline. I started seeing improvements in my movements just a few weeks after starting INGREZZA. Because I was no longer preoccupied with the movements in my face, I became much more confident socially and professionally. I had hoped for a reduction in my movements, and it really encouraged me when that happened. I also have peace of mind knowing that I can talk about any changes I’m experiencing with my psychiatrist and that he is my advocate and ally. This is just my experience, others may have a different experience with INGREZZA. Finding Your Specialist In my experience, finding a good psychiatrist or other specialist to work with is really important in managing TD. I’ve had other mental healthcare providers who I didn’t have as good a working relationship with as I do with my current doctor, so I understand that it can take time to find a doctor you feel comfortable confiding in about the physical and emotional aspects of mental healthcare and TD. Finding a doctor with experience diagnosing and treating TD with whom I have a great working relationship has been my key to managing my TD. Learn more about INGREZZA and find a specialist near you with experience diagnosing and treating TD. Important Information Approved Use INGREZZA® (valbenazine) capsules is a prescription medicine used to treat adults with movements in the face, tongue, or other body parts that cannot be controlled (tardive dyskinesia). It is not known if INGREZZA is safe and effective in children. IMPORTANT SAFETY INFORMATION Do not take INGREZZA if you: are allergic to valbenazine, or any of the ingredients in INGREZZA. INGREZZA may cause serious side effects, including: Sleepiness (somnolence). Do not drive, operate heavy machinery, or do other dangerous activities until you know how INGREZZA affects you. Heart rhythm problems (QT prolongation). INGREZZA may cause a heart problem known as QT prolongation. Symptoms of QT prolongation may include: fast, slow, or irregular heartbeat dizziness or fainting shortness of breath Tell your healthcare provider right away if you have a change in your heartbeat (a fast or irregular heartbeat), or if you faint. Abnormal movements (Parkinson-like). Symptoms include: shaking, body stiffness, trouble moving or walking, or keeping your balance. Before taking INGREZZA, tell your healthcare provider about all of your medical conditions including if you: have liver or heart problems, are pregnant or plan to become pregnant, or are breastfeeding or plan to breastfeed. Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. The most common side effect of INGREZZA is sleepiness (somnolence). Other side effects include changes in balance (balance problems, dizziness) or an increased risk of falls, headache, feelings of restlessness, dry mouth, constipation, and blurred vision. These are not all of the possible side effects of INGREZZA. Call your doctor for medical advice about side effects. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit MedWatch at www.fda.gov/medwatch or call 1-800-FDA-1088. Please see accompanying INGREZZA full Product Information The following promotional article is sponsored by Neurocrine Biosciences CP-VBZ-US-1955 06/2022

    The following promotional article is sponsored and developed by Neurocrine Biosciences

    A Family’s Perspective on Tardive Dyskinesia (TD)

    Moira, a minister, and her husband Forrest, talk about the impact that her Tardive Dyskinesia (TD) movements had on their family, and the crucial role that family and partners can play during TD diagnosis and treatment. Taking certain mental health medicines (antipsychotics) for a while can cause abnormal dopamine signaling in the brain, which can lead to uncontrollable movements called TD. The Onset of Moira’s Tardive Dyskinesia Moira: Everything was going well for us. I had my depression under control. I was working as a minister, living with my husband, Forrest, and our two young adult kids. Suddenly, I began to experience uncontrollable movements in my mouth and lips, which I now know was TD. It felt like I had bits of metal in my mouth, and my tongue was working to dislodge them. I’d also smack my lips together. It looked like I was chewing gum or working bits of food out of my teeth, but there was nothing in my mouth. Being able to comfortably and confidently speak publicly and talk and listen to people is a big part of my job. When the movements began, I became much less confident speaking publicly. In fact, my contract as a minister was not renewed after my symptoms became apparent because the movements really impacted my ability to confidently speak and interact. I was worried, and my family was worried for me. I even began to isolate myself from my family. Forrest: As a family, we all struggled with Moira. Our kids were really worried about their mom’s health because of the TD movements. As time went on and the uncontrolled movements continued, Moira started describing herself as feeling “ugly.” She got so self-conscious that she began closing herself off — even to us. And that was hurtful to our family. Stress seemed to worsen Moira’s movements and her feelings about them, so while I was working hard to keep everything calm, the pressure of “walking on eggshells” made the situation more stressful over time. Moira’s employment being affected by the movements also added to the situation by creating financial stress. Diagnosis, Treatment With INGREZZA and Improvement Moira: I had a somewhat indirect path to diagnosis, which some other patients may experience. Because the movements were in my mouth, I talked to my dentist at first, who confirmed that I did not have a dental issue. I then went to my psychiatrist who ordered a full neurological work-up with a movement disorder neurologist. After the tests, the neurologists diagnosed me with TD and my psychiatrist concurred. My psychiatrist prescribed an INGREZZA ® (valbenazine) capsules treatment regimen that I have been on ever since. INGREZZA has lessened my movements while allowing me to stay on my mental health medicines. INGREZZA ® (valbenazine) capsules is a prescription medicine used to treat adults with movements in the face, tongue, or other body parts that cannot be controlled (tardive dyskinesia). My psychiatrist told me that the most common side effect is sleepiness. Please see Important Safety Information below This is just my experience, others may have a different experience with INGREZZA. Forrest: As Moira’s husband and care partner, I was relieved — and so were the kids — when her TD was diagnosed, and she started treatment for it. Moira’s TD movements are no longer as noticeable; we consider them well-managed. What’s most important is that Moira is confident again due to the reduction in her TD movements in her face and mouth and is no longer isolating herself. When Moira was struggling with the movements, she was self-conscious about how others perceived her and how they reacted to the movements. Now that Moira is being treated with INGREZZA and having a reduction in movements, people are back to responding to her — not her movements. She’s back to working as a pastor, and we’re very happy to see her again in a role that’s meaningful to her. The Importance of Care Partners and What You Can Do Forrest: Family and care partners can play such an important role as a patient seeks answers and treatment for TD. Besides being a loving, unconditionally supportive partner, one way to help your loved one is to embrace your role as their advocate. With your partner’s permission, you can accompany them to their doctor’s office and help paint a fuller picture of your partner’s movements. A verbal history, Doctor Discussion Guide , notes, and even short videos of their movements can all be helpful . Your role is important. Moira: Being open and honest with my psychiatrist about how my TD symptoms were affecting me and our family was important in arriving at my INGREZZA treatment plan. Many patients have an understandable tendency to want to minimize how upsetting and disruptive TD movements are but not discussing the full extent of your symptoms won’t help you find a treatment plan. My family and I experienced emotional and financial stress because I was unable to work due to self-consciousness caused by my undiagnosed TD. I’m grateful now that my movements are more under control thanks to INGREZZA. And reduced TD movements can give hope to TD patients, families and care partners who struggle alongside them. Register for email updates from INGREZZA to stay current with the latest tips, saving program information and more. Important Information Approved Use INGREZZA® (valbenazine) capsules is a prescription medicine used to treat adults with movements in the face, tongue, or other body parts that cannot be controlled (tardive dyskinesia). It is not known if INGREZZA is safe and effective in children. IMPORTANT SAFETY INFORMATION Do not take INGREZZA if you: are allergic to valbenazine, or any of the ingredients in INGREZZA. INGREZZA may cause serious side effects, including: Sleepiness (somnolence). Do not drive, operate heavy machinery, or do other dangerous activities until you know how INGREZZA affects you. Heart rhythm problems (QT prolongation). INGREZZA may cause a heart problem known as QT prolongation. Symptoms of QT prolongation may include: fast, slow, or irregular heartbeat dizziness or fainting shortness of breath Tell your healthcare provider right away if you have a change in your heartbeat (a fast or irregular heartbeat), or if you faint. Abnormal movements (Parkinson-like). Symptoms include: shaking, body stiffness, trouble moving or walking, or keeping your balance. Before taking INGREZZA, tell your healthcare provider about all of your medical conditions including if you: have liver or heart problems, are pregnant or plan to become pregnant, or are breastfeeding or plan to breastfeed. Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. The most common side effect of INGREZZA is sleepiness (somnolence). Other side effects include changes in balance (balance problems, dizziness) or an increased risk of falls, headache, feelings of restlessness, dry mouth, constipation, and blurred vision. These are not all of the possible side effects of INGREZZA. Call your doctor for medical advice about side effects. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit MedWatch at www.fda.gov/medwatch or call 1-800-FDA-1088. Please see accompanying INGREZZA full Product Information The following promotional article is sponsored by Neurocrine Biosciences CP-VBZ-US-1955 06/2022

    Community Voices

    Bipolar 1 without antipsychotics?

    Is it possible to manage Bipolar 1 symptoms without antipsychotics? Abilify caused my Tardive Dyskinesia - I now take a medication for that. Seroquel is causing me to have Akathisia - I need to go off of that medication & it’s hard. I’m at a loss and very frustrated with antipsychotics. Has anyone else experienced frustrations with antipsychotics? #BipolarDisorder #Bipolar1Disorder #Medication #bipolarmedication

    5 people are talking about this