Tardive Dyskinesia

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Tardive Dyskinesia
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    Community Voices

    I hate that I have to feel guilty that I’m downhill right now. My illnesses are invisible so I’m treated differently. Please stop being so angry at me when you don’t know what’s happening. I will always help you and anyone who needs help…but sometimes I need help and have to be brave and selfish enough to get it…without lash back, sendining me down faster. Am I at least worth that? The believability that I am fighting, Even If it doesn’t look like it, I care for you. #Bipolar1Disorder #ADHD #PTSD #lonely #FamilyAndFriends #TardiveDyskinesia #EndTheStigma

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    Community Voices

    What bipolar medication side effect is most difficult for you to manage?

    <p>What <a href="https://themighty.com/topic/bipolar-disorder/?label=bipolar" class="tm-embed-link  tm-autolink health-map" data-id="5b23ce6600553f33fe98e465" data-name="bipolar" title="bipolar" target="_blank">bipolar</a> medication side effect is most difficult for you to manage?</p>
    31 people are talking about this
    Community Voices
    Community Voices
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    Community Voices

    Gains and Losses With Electroconvulsive Therapy For Depression

    I had my first electroconvulsive therapy (ECT) treatment in the first week of October in 2018. I had my final treatment on October 1, 2020. Over the course of those two years, I underwent almost 70 treatments in total. Those two years were some of the scariest, most unstable times of my life. I had four inpatient stays on the psychiatric unit and participated in two different intensive outpatient groups. In December of 2019, I attempted suicide and was in intensive care on a ventilator for two days before I could breathe on my own again. There were also moments of discovery and profound joy. I learned several valuable lessons and met people who would change my life. It was a time of transition, brought about through my decision to undergo electroconvulsive therapy. In the 20 years leading up to my starting electroconvulsive therapy, I was prescribed virtually every anti-depressant medication in existence. Not a single one of them had a positive effect on my mental health and well-being. I suffered intense side effects from most of the medications I tried. Akathisia, extreme weight loss/weight gain and tardive dyskinesia were the worst ones. In early October of 2018, I confessed to my primary care physician that I was suicidal, was then transferred to an inpatient psychiatric hospital and placed on a psychiatric hold. The doctor who did my initial psychiatric evaluation, Dr. K, confirmed my previous diagnosis of depression and recommended a course of electroconvulsive therapy due to the “treatment-resistant” nature of my depression. After years and years of living in the darkness, I was desperate for help and so I agreed, despite my intense fear and mistrust of doctors and medical settings. I was told that memory loss is the most common side effects of electroconvulsive therapy. My memory loss was severe, much more than the average ECT patient experiences. I have very few memories at all of that initial hospitalization and the earliest treatments. When I first started electroconvulsive therapy, I could not read because I could not hold the beginning of a sentence in my mind long enough to reach the end. As an avid reader, I struggled with this inability to engage in my passion. I lost so many memories from the years preceding the treatments as well. I remember my friends and family, but so many specific memories of time spent with them are gone and, even more than a year after my last treatment, have not returned to me. My grief over those lost memories is profound. I earned a master’s degree in 2016, but that statement feels dishonest because my memory of much of the content of my degree is gone now. I do have scattered memories of the two years of electroconvulsive therapy and I can read again now, though I still struggle to retain information in a way that I didn’t before ECT. I continued ECT with Dr. K for two years, despite its effects on my memory, because it was effective. At least, it was effective so long as I continued the treatments. After my initial treatments, I felt better than I had in years, despite my struggle with the memory loss and intense emotions surrounding that new reality. My inpatient stays on the psychiatric unit came when I tried to stop or, at the very least, put more time in between the treatments. Eventually, Dr. K (who I had learned to trust, despite my fear of doctors) began recommending outpatient programs that were offered through the hospital. He was concerned about my memory loss as well and, having gotten to know me quite well, knew I needed more than his electroconvulsive therapy treatments could provide. I did a general mental health outpatient program and then, when I began to struggle again, a program focused specifically on dialectical behavior therapy (DBT). The DBT group turned out to be exactly what I needed. The skills taught in DBT are invaluable to me. In addition, I began working one-on-one with one of the therapists who ran the group. The impact of her guidance and support cannot be overstated. It was with this therapist’s help that I was finally able to stop electroconvulsive therapy treatments. Working with Dr. K was, at first, incredibly challenging and scary. Due to past trauma, I have a hard time trusting men and doctors. Dr. K was both. Against all odds, I learned to trust Dr. K and that has been hugely significant for me as I work through my past trauma. After stopping ECT, I was, with the help of my amazing therapist, able to work through my fears and seek treatment for a physical health issue that plagued me for years: uterine fibroids, endometriosis and adenomyosis. I underwent a hysterectomy, performed by a male OB-GYN. Having that surgery has dramatically increased my quality of life. I no longer struggle with chronic pain. Without my experiences of learning to trust Dr. K and the experience of the ECT treatments, I would not have been able to deal with my physical health problems. It has been over a year since my last treatment and I will probably always feel conflicted about my experiences undergoing the procedure. But still… if I could go back in time and advise my younger self about the decision to start electroconvulsive therapy, I think I would hug her tightly and tell her to sign that consent form to begin the treatments. I would warn her that this decision will change almost everything and there will be a lot of difficulty to come. The memory loss will be traumatic and, likely, a lifelong struggle. The mental health issues that brought her to this place will not, ultimately, be resolved through ECT. It is nevertheless through these treatments that relief from the darkness of mental illness will be found. I would promise the scared, desperate version of me that it truly does get better and electroconvulsive therapy is a step on that path.

    Community Voices

    Meds are trying to kill me

    <p>Meds are trying to kill me</p>
    8 people are talking about this
    Community Voices

    What's been your experience with tardive dyskinesia (TD)?

    <p>What's been your experience with <a href="https://themighty.com/topic/tardive-dyskinesia/?label=tardive dyskinesia" class="tm-embed-link  tm-autolink health-map" data-id="5b23cebe00553f33fe99db0d" data-name="tardive dyskinesia" title="tardive dyskinesia" target="_blank">tardive dyskinesia</a> (TD)?</p>
    10 people are talking about this
    Community Voices

    I invite you to DANCE!

    move before the TD moves you! (okay, kinda a joke, but I find that my own intended mindful movement helps the TD more than anything else maybe....I do a lot to heal and have had some success though it's still very difficult.

    Ecstatic movement has been a critical part of my healing. Ecstatic dance practiced with intent is movement meditation. Below is compilation from my favorite “wave” ever.

    You don’t need to read anything about it…just start moving to the music.

    (downloadable audio file here:


    If you want to learn more about ecstatic dance from my particular experience (yours will be your very own) please read here: Ecstatic dance