I’ll never know which drug(s) that I’ve taken caused my TD.  I recently learned that Dilantin (phenytoin) which I was on for some years as a young child is on the anti-convulsant list of potential causes.   I began taking anti-depressants in the early 1980’s and aside from some brief gaps have been on one or another of them ever since.  Over the years I’ve taken tricyclics (clomipramine and imipramine), a tetracyclic (ludiomil), an NDRI (Wellbutrin), SSRI’s (Prozac, Celexa, Lexapro, Paxil, sertraline and Luvox) and an SNRI (Effexor).  Some, but not others of these antidepressants are now on TD potential causal lists.  When I started taking them, I was assured that no antidepressants cause TD.  That’s still the predominant belief, despite information to the contrary.

I was diagnosed by a dentist, in 1998, with a tongue thrusting “habit.”  In his report, the dentist cited the Effexor that I was on at that time as a possible cause of this “habit” but he did not use the term Tardive Dyskinesia.  The dentist referred me to both a speech therapist and a health psychologist for treatment of my tongue thrusting.  Both the speech therapist and psychologist believed that my tongue thrusting was a “habit,” that they could help me learn to control with behavioral methods, despite my assertions that I had no control over the tongue thrusting.  My experience with them was costly and unhelpful.  Worse, their insistence that my tongue thrusting was within my control (and refusal to believe my own experience that I did not have the power to control it) was both blaming and shaming when I was, indeed, unable to control it. I continued to thrust my tongue but solved the problem that it was causing my teeth to move by having a permanent retainer put in.

I had a Eureka! moment more than twenty years later when I saw the recent Talkabouttd.com commercial in which they asserted that antidepressants CAN cause TD.  Tongue thrusting is a typical symptom of Tardive Dyskinesia.  The lightbulb lit up.  My tongue thrusting IS tardive dyskinesia, an involuntary movement disorder, not a “habit.”  I want to spread the knowledge that at least some antidepressants can cause TD and if you have TD, do not go to inappropriate treatment referrals that are ignorant of TD and believe that you have a habit that they can help you learn how to control.

Eve L. Meys M.S., LP
St. Louis Park, Minnesota

My name is Debbie Perkins and I live in South Carolina. In 2012, I was diagnosed with “treatment resistant depression” following major catastrophic life stressors. The doctor started me on Zyprexa (Olanzapine).  It worked well for my depression; however, 6 months in, I began having facial “pulling” and cervical neck jerking which caused my head to always be pulling upward. This made it embarrassing to go out in public. It was a constant stressor.

I wasn’t aware of what was happening, but eventually ended up at a neurologists office where I was quickly diagnosed with TD as a side effect of the Zyprexa.  The Zyprexa was discontinued.  She started me on Ingrezza immediately beginning at 40 mg daily. Eventually, I was increased to 80 mg daily. I’ve been taking Ingrezza for 11 months with a marked reduction in my symptoms. The cost is astronomical however. I figured that it alone costs $72,000/year. Fortunately the drug company offset what my insurance carrier would not cover.  I’m one of the happy Ingrezza patients.

I’ve had Tardive Dyskinesia (TD) for the last 39 years. During this time I’ve taken over 20 drugs to treat schizoaffective disorder with major depression, PTSD, mood stabilization, OCD and psychosis. I was on many of these neuroleptics 2 and 3 at a time, so it’s hard to pinpoint which drug caused my TD. Here’s a list of drugs that I’ve taken during this timeframe: Mellaril, Prozac, Haldol, Depakote, Tegretol, Luvox, Ritalin, Trilafon, Stellazine, Prolixin, Xanax, Novane, Loxitane, Clozaril, Abilify, Geodon, Thorazine, Zyprexa, Risperdal, Seroquel, and Trazodone.

For many of these, I was on above maximum dosage. My TD has waxed and waned for the last 39 years; however, over the last 16 years, it’s been consistent.

As soon as I started neuroleptics my TD was immediate. Tardive dyskinesia began in 1980; tardive dystonia (cervical) began 2003-ish; tardive dystonia began in 2019; tardive myoclonus began in 2019. It affects my neck, face, arms, hands, feet, legs and torso. Flexeril has helped the dystonia in my torso immensely; however, it has not helped the cervical dystonia.

I’ve been on disability since around the age of 20. I had a nurse visit 2x per day for roughly 20 years and the last five years only once per day. (This care was all due to non-compliance with my meds.) I’ve been unable to work due to psych and back problems. I use a walker and a cane.

All of this might sound like a drag; however, I am in the world not of the world. I claim my healing in Jesus’ name. 1 Peter 2:24 says “by His stripes we are healed.” Many suffer way more than I could ever imagine. I am eternally grateful. I am so very blessed. Christ did not hang on that cross at Calvary for me to be sick. I CHOOSE LIFE.

Warm regards,

Eva E.

Fairfield County, CT

My daughter, Jenny*, was more or less a typical, friendly child growing up. She met all of her milestones on time, participated in dance and had no trouble making friends. She was a little more oppositional than other kids (e.g., she would scream at me for the silliest things like when I sneezed; but then again, I did the same to my mom when  I was growing up.). Although very intelligent, I also felt that she had inherited my “spaciness” in class, and because 5th grade was such a disaster for her and us with regard to homework load, I felt it was time to start prescribing meds to control her inattentive ADHD.

We were put on a five-month waiting list to see a psychiatrist. Because Adderall worked so well for me, I insisted that my almost-11-year-old daughter be put on it too. I didn’t mention to the psychiatrist that my daughter was prone to rage because I didn’t feel that it was part of ADHD…I always wonder that if I had mentioned it, would he have prescribed differently. Anyways, she did fine on Adderall for one month, but at her second doctor visit, we thought that maybe she could use a slight increase in her meds because she was still forgetting things at school, like her iPad. So, I agreed with the psychiatrist to increase her dose (even though my husband advised me before the meeting that he felt any change would be unnecessary). The day after we increased her dose, she complained to me that it appeared that she was “gasping for breath.” I didn’t know what to think, so I called the doctor’s office, and we decided to reduce her meds. She still had the same breathing symptoms. Since we were shortly going on a cruise, the psychiatrist said to take her off the meds completely, and the tic should disappear. Nope, he was wrong, not only didn’t they stop, they got worse.

After gorging on copious amounts of junk food on the cruise and coming down with stomach flu on our return home, my daughter developed two more tics once she recovered from the stomach flu. She started clearing her throat and having belching tics — her esophagus would spasm. I called our pediatrician, and she said it sounded like tics and to have her psychiatrist prescribe a new medication to fix it. Tried a drug called guanfacine, that is frequently used for tics. It didn’t work.

I took my daughter to see two pediatric pulmonologists over the next few months. First said it was an acquired habit called “sigh breathing,” and it would go away. The second one confirmed it was a tic disorder and said if he treated it, he was afraid it would manifest into a different tic.

Still without answers, I continued searching the internet and subscribed to a natural tic forum, called Latitudes. I posted in their forum my question about amphetamine-induced tic disorders, and received no response. People were definitely struggling with this problem, but no one had a solution.

We started seeing a holistic nurse practitioner. We agreed to do a nutritional urinalysis and food allergy test (blood spot). The urinalysis showed she had gut dysbiosis and the blood spot listed her #1 allergy as eggs, which I chose to disregard, because we were trying to keep my daughter on a low carb diet, and how do you do that without eggs? Our nurse theorized that her gut dysbiosis may be attributed to Clostridia, a gut bacteria known to cause tics. That said, we put her on two probiotics known to kill Clostridia. I sent her to overnight camp and hoped for the best.

I contacted a Holistic M.D. neurologist in NYC who had treated tics successfully with homeopathy. She told me that my daughter’s tics were most likely immune-modulated, and sent me a list of blood tests to perform on her, most relating to strep. I knew it wasn’t strep, but guessed it wouldn’t hurt to rule it out.

When my daughter returned from camp, miraculously, the belching tic had gone away…it was the Clostridia! We then had her undergo a battery of blood tests and the Great Plains Organic Acids Test.

Then we started her on a new vitamin regimen. We thought she was making slight progress, but I still thought we weren’t doing enough.

So, I called a local neuropsychiatrist who successfully deals with abnormal movement disorders. He told me my daughter sounds like she has autoimmune encephalitis (like PANDAS). I told him she didn’t have strep. He said she doesn’t need to have strep in order to have that condition.

We then brought her in to see this doctor, and he felt she definitely had neuroinflammation caused by the autoimmune encephalitis – coming from her gut.

Having dealt with my own leaky gut issues, I knew exactly what to do to clear it up – I put her an a Paleo Autoimmune Protocol (AIP) diet (took her off eggs – as it was her #1 iGg food allergen), and her throat clearing tic disappeared within a day!!!

I then kept wondering what did the Adderall have to do with autoimmune disease. Well, I was watching Dr. Mark Hyman’s (the director of Functional Medicine at the Cleveland Clinic) series on the Broken Brain. They showed a segment about traumatic brain injury (TBI), in which a doctor talked about how TBIs can cause a break in the blood brain barrier (BBB) so you have to avoid eating gluten shortly thereafter, because your brain was now susceptible to infection without an intact BBB, which could cause an autoimmune response in the brain. Eureka! I then read on PubMed that Adderall can, in fact, break the BBB, just like a TBI.

But it still didn’t help with the first tic, the breathing tic. We visited two conventional pediatric neurologists. They didn’t seem too concerned. They told me that Adderall had the ability to bring about a tic that would have happened anyway. (The results of a “study” funded by BigPharma). One of the physicians told me that her tic may or may not go away and just rambled off statistics. He relented and wrote a script for guanfacine, and said to give it more time than we had previously. Of course the medication didn’t work. I then dragged my daughter to the second pediatric neurologist, and she flat-out told me that there is no cure for tics, even after I shared our journey of recovery from the throat clearing and belching tics. Keep in mind, these two pediatric neurologists were probably the top movement disorders specialists in Chicago, and they were completely useless!

I posted my gripes in another FB Group, and someone suggested I contact a chiropractic/functional neurologist to help me figure things out. I had never heard of that type of doctor. They are chiropractors who have had extra training in chiropractic neurology by a school called the Carrick Institute in Florida. I found such a doctor about an hour a way from us, and we started seeing him for several months. I was so excited that someone could finally do something to help my daughter!

He still felt that her condition was autoimmune; especially because she was at that time experiencing chronic diarrhea. He suggested we see a homeopath to clear up the diarrhea and he would work on re-building her neural pathways via physical therapy for the brain. (On a side note, we did concurrently see a homeopath, and not only did she clear up my daughter’s diarrhea, she also got her over her egg allergy; my daughter was now able to eat eggs again without ticcing!)

Unfortunately, the physical therapy wasn’t working and the commute was becoming too much. We gave up, and I continued looking for homeopaths who could help us…all to no avail.

I don’t know what possessed me to call another chiropractic/functional neurologist, but I found one who was closer to my home, and reached out. He said he knew exactly what happened to my daughter and how to fix it. Slam-dunk situation. The Adderall caused something called maladaptive synaptic plasticity in the basal ganglia region of her brain. Ironically, I even had her genes tested via something called pharmacogenetic testing, and she was given the “green light” on Adderall!

I took her to him, and based upon her behavior and how she reacted to his tests, he diagnosed her with Oppositional Defiant Disorder (ODD), which also originates in the basal ganglia. Lightbulbs went off in my head. Her basal ganglia didn’t develop properly, for either genetic and/or environmental reasons, and this had set the stage for one major insult (the Adderall in her case), to cause something as awful as a chronic movement disorder!

We immediately started physical therapy, and began to see improvement. There were some days she regressed. I put my thinking cap on, and Googled “maladaptive synaptic plasticity,” which is basically the cause of tardive dyskinesia (TD). TD is a drug-induced movement disorder that frequently happens to those taking anti-psychotics. Few people recover from it, as their physicians keep prescribing more meds that only exacerbate the problem. In addition to the plasticity issue with TD, oxidative stress is also found in the brains of people with TD. I started Vitamin E therapy with my daughter, and she started to progress. I told her doctor that when I don’t give her Vitamin E, she regresses. He said that made sense and told us to continue on.

Unfortunately, our doctor left the practice we were seeing him at and moved elsewhere an hour away. My daughter’s breathing tic is coming back, unfortunately, too. I’m hoping it’s the recent addition of braces that are making her situation worse, as the teeth are very connected to the brain as well.

I’ve spent three years, seven neurologists, three homeopaths, one holistic nurse practitioner, hours on the internet and Facebook groups, $1,000s on supplements, physical therapy, and we even rented and brought a PicoTesla Magnesphere Machine into our home, all in the interest of helping my daughter overcome this movement disorder. If something works, it doesn’t work for very long. Even though my daughter has made gains in several areas, it doesn’t bring back the time I’ve lost having a “normal” relationship with her. I can hardly be in the same room with her for too long, because every tic reminds me about what a helpless state we are in. It has taken a financial and emotional toll on my family and me. Kudos to my husband for being our source of comic relief and bringing the love and laughter into our home. My biggest fears are that if we aren’t able to solve her problem, that one day, when she’s an adult, she will resent me for putting her in this situation in the first place, and I also fear that she will never find a partner to grow old with. I know my fears both sound ridiculous, but it’s the fear I live with. I suppose we are amongst the more fortunate ones…I read everyday about kids being vaccine-injured and being rendered immobile as well as other TD victims who can hardly breathe. I know I should count my blessings, but I fail to see the silver lining in something that I mostly feel is my fault and my responsibility to help her solve.

I hope my daughter’s story will give someone else pause before they agree to prescribe ADHD meds for their children. I’ve read other horror stories online, and Adderall is not the only drug that can cause TD.
 

My friends and family have rallied around me. I had to drop out of my golf league last April because of movement and balance problems. I was in the same golf league for 31 years. My family, wife and 3 adult children started bowling with me, and we now do this regularly. I can only use a 10 pound ball and I’ve only fallen down 3 times bowling and I’m improving  my game. At first my scores were in the 60’s and now I can break 100. 2 of my old golf friends started to bowl with me too. And now I am starting to golf again. I’ve had a lot to relearn with my golf game as I’m weak, much weaker than I was before the TD. Like my 7 iron used to be my club to hit the ball 150 yards. Now I have to use my 25 degree hybrid. But I don’t fall down. But i’s so much fun and takes my mind off the physical and mental issues I’m dealing with. I used to play the guitar, but I had to stop because my fingers and hands wouldn’t be able to move with any rhythm and my fingers couldn’t move to make the chords, and my right arm wouldn’t be able to strum. It was more like I was beating up my guitar. I’m now able to kind of play 1 song, and I try to practice several times a week to see if I can physically get back the ability to play the guitar. I get very tired trying to play. Mostly I play songs on my phone and sit with the headphones on and listen to classic rock, as loud as I can, and sit with my legs moving back  and forth, knee slapping, and with my arms and hands clasped together. I don’t have the attention span to watch tv  and it really bores me anyway.
  
After seeing my Neurologist for the first time this past month, (he was the third neurologist I saw) he was the first doctor to give me an actual physical exam. He actually touched me checking strength in my legs and arms, he examined my feet and toes. He had me stand and walk and lean and try to balance. And he video-taped me as a baseline for treatment comparison for the future. He gave me cognitive tests like counting backwards from 100 by 7, and I made it to 65. He had me try to recall 5 words after 5 minutes, and I remembered only 3 out of 5. Besides the TD He diagnosed tardive akathesia as well. He increased my Ingrezza to 120 mg to see if it helped my movements. He said if it didn’t change my symptoms we would go back to the 80 mg dose. But wanted to give it a chance to see any improvement. It’s been 2 weeks and I’m not seeing anything change yet. No side effects changed from the increase of the medicine. 

I am only able to put in a couple hours a day at work. I’m an attorney, and clients don’t want their attorney to be a whirling dervish when representing them at a hearing. Plus this affects my voice and it gets hard to speak in a tone that makes a presentation stand out, in fact it makes me sound like I’m not too smart. I get slow and monotone. I also swivel in the chair and my fingers go wild tapping the table. Thank god the hearings are only about 5 to 10 minutes in length or I would have to stand up and move about. Plus i have short term memory lapses when speaking, I will start a sentence and then I forget a word I wanted to say and I lose track of the point I was trying to make. In the office, I’m always screwing up my computer because I can’t remember the correct buttons to push and I get panicked, and my paralegal has to come and fix what I did, and show me the right way to do it again. I do drive and I play my music as loud as possible so I don’ get frustrated with traffic. My legs slap together so I use my cruise control as much as possible. But I can use my right foot to brake or accelerate as needed. And my hands grip the steering wheel as tight as they can so they don’t move around and throw me off course. 

All this has made my Anxiety and OCD worse than ever. I have panic attacks several times a week where I screw up the computer at work or when I come home and I just sit and slap legs and grab my hands tightly together and I hyperventilate. These last from several minutes to up to an hour. I feel like I did something so wrong but I can’t think of what I did, I just panic. Those have been coming on less often now. Without medicine I couldn’t sleep. So I’m on 40 mg of Valium per day, Flexeril for muscle relaxant, Remeron 45 mg and my Ingrezza at night. Before I wasn’t able to sleep because my legs wouldn’t top slapping together. Now I get about 5 or 6 hours of sleep. I also have ADD and so I take a drug called Focalin, similar to Adderall , once in the morning when I get up and once at noon. It does not affect my movement problems at all even though it’s a stimulant. In fact, I got kicked out of a different Facebook Tardive support group when I reported that the stimulant helped me.

Anyway, this was a terrible process for me. My old psychiatrist misdiagnosed me with Bipolar Disorder, and prescribed the Zyprexa and Elavil and told me it was for sleep. She never mentioned the word “anti psychotic” or told me what it was for. And then to couple that with the Elavil showed me that she had no idea what she was prescribing for me or what could happen. She never AIMS tested me. When I started having symptoms of eye blinking and belching and facial tics, she told my psychologist I needed to increase my therapy. I saw an Neuro-Ophthalmologist for my eye issues, a GI doctor who did an Endoscopy to check out my breathing/belching problem, my dentist did a tooth implant and 3 crowns with root canals because  I broke 3 teeth from the fact that my jaw was so tight and spasming, and because my jaw was so tight I had to see an ENT for pain in my right ear that felt like I was being jabbed with an Ice pick. She told me I had TMJ and nothing was wrong with my ear. My mouth and tongue were being cut up so badly because I could not control my biting and it was so painful. My cheeks and tongue were being cut up. I used Orajel tubes and then I bought Orajel mouth wash to try to numb the pain in my mouth. Plus I had the tongue darting in and out of my mouth and I didn’t even know it.

Thank god my wife works at a hospital. She took several video’s of me on her cell phone and showed it to one of the doctors she works with. He said I had Tardive Dyskinesia. Something I never heard of. She called my old psychiatrist and told her about this , but she still prescribed the Zyprexa and the Elavil. I talked to my family doctor and he referred me to a neurologist, but I couldn’t get in for 3 months. I cold turkey stopped the Zyprexa and Elavil. Of course I didn’t have the underlying psychosis so I didn’t need the anti-psychotic and the trycilic anti depressant to begin with. I guess I’m lucky with that. I got in to a new psychiatrist in a couple of weeks as he was a former co-worker with my wife. He started me on cogentin and my eye blinking stopped, almost immediately. But it did nothing else and the movements were getting worse. Then tried Artane at the max rate of 5 mg 3 times a day. That made me worse. Not only did the movement disorder increase, but I was falling down and had no memory and was in a total state of confusion. Then we tried Austedo. That did nothing, My psychiatrist increased the dosage 3 times with the Austedo. It did not help. So last April he started me on the Ingrezza. I was taken off the Austedo , and Cogentin. But I was still having serious confusion and memory problems. So I went off the Artane, and the confusion stopped, and the memory improved. The Ingezza started to help with the movement issues. First the jaw and mouth got better. I don’t fall down as much any more. I was slowly improving to the point I could bowl 2 games starting last July. I still have a balance issue as when I walk, I kind of just push off the walls or objects around me. The legs still move about and I get feelings of restlessness so I can’t sit very long without getting up and walking around. I still get panicked, and I get OCD sometimes, where I get stuck on one thing for hours where it should only take me 20 minutes to do. But life is live-able for me. I would love to get back to normal, but I don’t expect that will happen. But I will keep on trying. One big lesson I learned was that you can’t just blindly follow what your doctor does or says. I research everything from medicines to supplements and disease symptoms. It’s amazing to me what doctors don’t know about the medicine they prescribe. Not just psych meds, but other medications for your regular health problems. Such as High Blood pressure medicine, or meds for Cholesterol like the statins, and for diabetes. My god the possible side effects, and the drug interactions are un-believable. For example, I am prescribed an Iron pill for anemia (that I don’t think I hAVE) and a Thyroid medicine. The doctor’s instructions were take this in the morning with your other pills. I found out that the Iron pill absorbs all the Thyroid medicine, so the Thyroid med doesn’t work for anything because it never gets past the iron pill. They have to be taken at least 4 hours apart. And I could go on and on about that. So since 2013 I was taking a Thyroid pill that never treated my Thyroid.  I try to tell people this and they think I’m nuts and most either don’t listen or don’t care. But I won’t ever let this happen to me again. 

So at this time I feel lucky in the sense that even though I have this terrible disease(side effect) I am not as bad off as most people with TD because I never had the underlying psychological condition that the medicine was prescribed for, so I don’t have to worry about what to do for schizophrenia or bipolar disorder . I suffer no pain, my wife and family are closer now than before, and my friends have not abandoned me. We all have something we deal with in life and I am going to deal with the cards that were dealt to me and keep as upbeat as possible and keep trying to improve, so I have the best rest of my life as I can. Thanks. 

I was taking Abilify for bipolar type II for roughly 3 years when I developed tardive dyskinesia. I am no longer on any meds for bipolar; I am presently only taking medications to control my tardive dyskinesia. Right now, high doses of Requip has been keeping it semi-controlled. 

TD has affected my whole body (arms, face, tongue, legs, torso, eyes) as well as my speech. I also have tardive akathisia.

I tried taking Ingrezza but it made my symptoms worse. My tardive akathisia got so intense that I considered suicide.

I can no longer work because I can’t keep a grip on anything. I don’t socialize and limit my contact with people who don’t understand that I don’t have complete control of my body at all times.

Shawna Bailey

Tampa, Florida

I have tardive dyskinesia from taking Seroquel. I was taking it to control my schizoaffective disorder. I have been on a total of 15 different medications; I now only take Geodon for schizoaffective disorder and for my TD I have been taking Ingrezza for about two years.

My TD first manifested itself as “pill rolling” (as if you are trying to roll a pill between your thumb and index finger), then it affected my eyes, mouth and finally my entire body.  

I got agoraphobia and didn’t leave my house for almost 5 years. I’ve been lucky and have been on disability for 15 years. On a side note I no longer use my walker or cane and though my TD is permanent and terminal I have made an almost full recovery because of Ingrezza. 

Phyllis Hall

Texas City, Tex

For all of my adult life, I carried a mental health diagnosis of depression, then bipolar disorder, and have taken medications for help. Most recently I was on Latuda for a year and developed over-all tremors, especially in my arms and hands. As I stopped Latuda as recommended to decrease the tremors, I was directed by my doctor to increase my Seroquel, an anti-depressant drug that I have been on for about 19 years.  At one point, I noticed mouth movements that were new, which resembled chewing on hard candy, tongue movements, difficulty speaking, the constant need to swallow, continued arm tremors, as well as now movements in my feet. At times my balance is affected, and I am afraid of falling.

Three months ago, I was diagnosed as having tardive dyskinesia. Seroquel is my causation drug and I am currently tapering off this medication. The only respite I get at this time is when I sleep. I am now retired but feel I could not have worked in my career of teaching with TD. As people observe my tremors and mouth movements, and see my imbalance, I feel I have to explain that I have a condition that causes this. TD is not a side effect I would have chosen for myself if I was better informed by my medical professionals that this was a possibility of my medication.

I developed tardive dyskinesia after 17 years of taking Seroquel for bipolar manic depression. I was also taking Thorazine for sleep issues for about 3 years. 

My TD causes movements from head to toe. These symptoms started slowly about 7 years ago, but now I get movements all day long. I also have drug-induced dysphagia. 

I have received relief from taking vitamins and CBD oil. I also vape pot. I still take other drugs for my bipolar.

I have not tried any other treatments.

I am on disability but I go everywhere I can having TD.

Steven C. 

Palatine, IL.

My TD was diagnosed while I was on Latuda. But to be honest, I feel it is from years of being on several different anti-psychotics that I was taking for bipolar type 2.

About a year into taking the medication I noticed my TD symptoms. When I mentioned it to my family members they said it had been going on for awhile, they were just afraid to say anything because they didn’t want me to feel self-conscious about it. I am still taking Latuda, because, for me, the benefit outweighs the TD. I am thinking about going on a medication to hopefully stop the movements.

Mainly my mouth is affected, but my hand and feet are also. They act up when I am really stressed or tired and mostly at night.

I’ve been taking Vitamin E twice a day. It has lessened my movements a bit but not much.

My TD makes me feel embarrassed for sure. And it makes me feel less confident and very self-conscious.

Phyllis E.

Fairborn, Ohio

I was taking Abilify for PTSD and panic attacks for 6 months when I developed tardive dyskinesia. It affects my full body (mouth, head, jaw, neck, esophagas, I drool constantly, my legs, back, feet and toes as well as abdominal pain and increased urinary frequency). All symptoms have pulling and sharp pain; I also have gait changes. Eye movements just began this week.

I currently take baclofen and lorazepam to help my tremors and spasms. It also eases some of my severe anxiety. I take cannabis for depression and cbd drops. I tried Austedo but it made my symptoms worse. My TD symptoms went from affecting just my mouth to the rest of my body after once month of Austedo (slow titration). 

I am unable to work. I use yoga, running, dancing and singing to help keep me going and distracted from the constant symptoms.

Monica G.

I am not sure what drug caused my tardive dyskinesia. I was treated for depression/anxiety off and on since the 1990s (SSRIs, TCAs, MAOIs, Buspar, Wellbutrin).  

I developed almost similar symptoms to TD in 2004, but I was told I had psychogenic tremor disorder.  It went away after about 6 months. I question whether I had TD at that time, but a movement disorder specialist diagnosed me.  

I stopped taking my last SSRI, citalopram, in 2016.  My formal diagnosis for TD came a few months ago in August 2019, when I started getting neck spasms, random numbness and tingling in my extremities, lip tremors, head tremors, and tongue rolling. These symptoms began a year earlier, in 2018.

The neurologist does not know which drug caused it since I used most all classes of antidepressants. The neurologist said only taking a medication a few days can cause TD, and TD can start years later.  

I am currently taking clonazepam. I started it a few weeks ago with some relief, but I still have ongoing breakthrough symptoms.  My symptoms have worsened to include having some trouble with my balance. When I walk, I stumble on occasion.  My fingers “play the piano” when walking distances such as going from room to room. Recently, I’ve noticed my breathing has become shallow when walking.  

My neurologist just added another medication that can worsen the TD, risperidone, along with the clonazepam. It is trial and error to find the right medication. My insurance will not pay for the 2 FDA-approved medications for TD, so I have to try other options.  

My life is miserable.  I can’t even go shopping as my lips tremble, and I stumble backwards when walking.  Recently, I had to quit my job because I work at a small company who cannot offer the Family and Medical Leave Act (FMLA).  I exhausted my vacation and sick leave to go back and forth to see the neurologist and other providers for all the required testing to prove it was TD and not another organic cause.

I cannot even type or do any grasping movements, since this causes the TD symptoms to occur. My neck spasms continue, and if the TD flares during the day, my speech gets to where I stutter. Being still seems to help my symptoms.

Who will hire a person who sits down and shakes their head along with constant lip tremors? On top of this, I am a medical professional!

Kim

My son is eight years-old. Last March, when he was seven years-old, he began having involuntary movements. They started within a week of completely tapering off of risperidone. He had been on risperidone for three years for severe aggression (he has autism). He had previously done pharmacogenomic (genetic) testing for medications and risperidone came back as an okay drug for him to take. He was diagnosed with multiple dyskinesias. All movements were constant. Mouth, arms, hands, shoulders, feet, legs, and constant tremors you could feel, but couldn’t see, in his torso. He could barely walk at times. He also has memory problems now.

A few months after the onset of the tardive dyskinesia, he had stroke like symptoms at school. The cause was never determined at the ER, and his neurologist refused to speak to them. He is currently on amantadine which has stopped the majority of his movements. I want him off of it too, but I don’t know how else to help him. We do have a referral for a new neurologist; we’re just waiting. He is also on paroxetine for anxiety. I want him to be off of this as well, but I am waiting to speak to the new neurologist.

I haven’t been given the diagnosis of TD even though I am sure I have it. I have been on antipsychotics since I was 18 years old. The day I began them was my birthday. I was told on this day that I would be sectioned if I didn’t take the medications. It became apparent to me 5 years ago that I have TD. I have been raising this fact with my doctors and mental health staff since then. 

I started taking antipsychotics because I suffered from anxiety during my school exams. They were given to me to sedate me, as I felt panicky. Someone also died in my family that same week. I think that those are the reasons why I was given the medications. I was diagnosed with an atypical eating disorder when I was approximately 14 years old. The family psychotherapist tried to section me three times, but my parents didn’t agree to this, thankfully. She shared private conversations about me with my school headmistress who spoke to her in confidence without my knowledge or my parents’ involvement. 

My mental health staff never changed or altered medication for me because I have never been believed. They consider it a sign of mental illness. I’m 35 now and have only been off the meds for a few months; two months max in those years. However, I came off of them completely in Sept. 2019 this year.

My temples push inwards, the ligaments in my neck contract and I feel they cannot stretch. I get neck spasms and my larynx contracts inwards. I find it difficult to coordinate my neck or keep my head up. I behave in ways which are impulsive and find it difficult to think before I do something. I therefore act before I think making me look clumsy and angry. I find it difficult to concentrate or focus on detail. I have severe memory lapses. I have also noticed that I have lost my singing voice and my memory is very poor, so I have to work much harder. I am also sure I have akathisia. 

I haven’t been offered any treatments for TD. My symptoms have not been investigated at all. I have encountered much resistance from almost everyone in the mental health team at the hospital. 

I believe the treatments that have harmed me have been all antipsychotics. I always resisted taking any of them. 

I have found it difficult to keep work. My work history has been sporadic and my quality of life very poor. Nothing makes me happy. It is not a psychological problem but a physical one. I am certain I have tardive dystonia, but no one believes me at all. I have also found it difficult to learn new information and form new memories. I also feel disorientated as if I don’t know where I am going.