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Tardive dyskinesia (TD) is a kind of brain damage. It can be brought on by drugs prescribed for a variety of mental conditions ranging from depression and bipolar disorder to schizophrenia and autistic disorder. Newer medications like olanzapine (Zyprexa) and aripiprazole (Abilify) weren’t supposed to trigger TD. As you will read below, though, some patients do suffer symptoms that include involuntary muscle movements. For decades there were no good ways to reverse tardive dyskinesia. That may be changing.
What is Tardive Dyskinesia Really Like?
When you read “involuntary muscle movements,” you may not think it’s that big a deal. Let me tell you otherwise.
I worked in the Neuropharmacology Laboratory of the New Jersey Neuropsychiatric Institute for two years. There were many schizophrenic patients on the grounds and quite a few suffered from TD. The drugs prescribed for schizophrenia, major tranquilizers like chlorpromazine (Thorazine), fluphenazine (Prolixin), haloperidol (Haldol), trifluoperazine (Stelazine) and thioridazine (Mellaril), could cause this irreversible movement disorder.
These patients suffered from severe facial grimaces. Often, their tongues would protrude from the mouths uncontrollably. Their necks would twist in challenging ways. In fact, their whole bodies seemed to move, twist and writhe in ways that made no sense.
It was assumed that these involuntary muscle movements were the price these patients had to pay for treatment. Even if the drugs were discontinued, the movements often continued for months or years. Many psychiatrists came to believe that it was hard, if not impossible, to reverse tardive dyskinesia.
How Long Does It Take to Develop TD?
Many clinicians seem to think that it takes a long time to develop tardive dyskinesia. WebMD states:
“Symptoms might not appear until months or years after you start taking antipsychotic medicine.”
And yet another resource (StatPearls, April 24, 2023) states:
“Tardive dyskinesia can manifest as early as 1 to 6 months following the initiation of a dopamine receptor antagonist.”
This reader says TD appeared within a short time after starting aripiprazole:
Q. I was prescribed Abilify for a short time for misdiagnosed bipolar disorder over a year ago. Ever since then I have had muscle twitches where my fingers, arms or legs will jump randomly.
I got a concussion this year which added an eye twitch and didn’t help matters of course. Everything else started when I took Abilify. I was only on it for a short time and didn’t know it was a possible side effect, let alone a lasting one even after discontinuing the medication.
Hopefully this article will help people be more aware of the risks! I’m just thankful since others have gotten it worse than me.
How Can I Reverse Tardive Dyskinesia?
Q. I was diagnosed with bipolar disorder and was immediately put on Lamictal and Abilify. In the last two years, I have developed tardive dyskinesia.
When the doctor diagnosed it, she upped my dose of Abilify. She didn’t seem concerned at all, but she told me tardive dyskinesia is irreversible. We didn’t even talk about it!
I am very angry about this. She never told me that Abilify carried a risk of TD. I went on the med because I didn’t know any better.
I am so upset about this because I heard TD can worsen after you discontinue Abilify. What can I do now? I can’t trust my psychiatrist any more.
I’m thinking about stopping Abilify on my own. Could I cut the pills in half and then in half again and go very slowly? I feel like I need to act as my own advocate in this situation.
I feel betrayed by the doctor who was supposed to make me feel better. Right now, I have twitches in my hands and legs, grimacing and pursing of my mouth and severe jaw clenching in addition to the tongue rolling in my mouth. Is there anything that will help?
A. Tardive dyskinesia (TD) is a devastating consequence of certain psychiatric medications. Older antipsychotic drugs like chlorpromazine (Thorazine) and haloperidol (Haldol) cause this adverse reaction in up to 32 percent of patients. Newer medications like aripiprazole (Abilify) and olanzepine (Zyprexa) can trigger TD in 13 percent.
The uncontrollable muscle movements you describe are typical of TD and can be devastating. Until recently, there were no successful treatments.
Trying to Reverse Tardive Dyskinesia:
Over the last few years, the FDA approved two new medications to treat this condition: valbenazine (Ingrezza) and deutetrabenazine (Austedo).
Clinical trials demonstrated that approximately 50 percent of TD patients who received valbenazine (VBZ) experienced improvement (Therapeutic Advances in Psychopharmacology, May 20, 2019). Deutetrabenazine (DBZ) was helpful for about half the patients with involuntary movements. In comparison, 20 to 30 percent of those on placebo had improvements in their tardive dyskinesia symptoms.
Both VBZ and DBZ have side effects, including drowsiness, dry mouth, restlessness, headache and fatigue. This reader shares the other side of one medication:
Complications Associated with DBZ (Austedo):
“My wife has tardive dyskinesia (TD) from taking Zyprexa years ago for bipolar disorder. In April 2019, she began taking Austedo for the involuntary movements. Her neurologist helped get a grant, as the med cost over $6,000 a month.
“Very quickly her TD symptoms began to improve. Her mouth and tongue movements all but stopped. The dose gradually increased over a month or so. She was able to walk without assistance.
“In August 2019, she went downhill fast. She couldn’t walk and lost bowel and bladder control. She couldn’t feed or dress herself. I thought she would need round-the-clock home care.
“A few days later, she saw her neurologist. I insisted she discontinue the Austedo, as nothing else had changed over the past months. He agreed.
Within three days, she was back to normal! Unfortunately, the TD came roaring back as well.“It appears to me that there was an interaction with the Depakote she takes. Depakote (divalproex) is listed as possibly interacting, but she was not warned by either her neurologist or the pharmacy.”
A. Antipsychotic drugs such as olanzapine (Zyprexa) are prescribed for schizophrenia, bipolar disorder and major depression. One serious side effect could be tardive dyskinesia. These involuntary movements are extremely disruptive.
The FDA has approved two prescription medicines to treat TD: valbenazine (Ingrezza) and deutetrabenazine (Austedo). Both improve movement problems for about half the patients in clinical trials.
The official prescribing information does not contain a warning about an interaction between Austedo and Depakote. However, some drug references advise caution with such a combination. Your experience suggests that warning should be strengthened.
No one should ever stop any medication on their own. A very gradual tapering under medical supervision may be required with drugs like Abilify or Zyprexa.
Have You Ever Experienced Tardive Dyskinesia?
Please share your story in the comment section below. Millions of people now take the newer “atypical” antipsychotic medications. They include drugs such as aripiprazole (Abilify), clozapine (Clozaril), olanzapine (Zyprexa), quetiapine (Seroquel), risperidone (Risperdal) and ziprasidone (Geodon). They can be helpful for many people, but they come with a long list of side effects.
Many psychiatrists believed that atypical antipsychotics would not cause tardive dyskinesia. Although this side effect is less common than with traditional anti-psychotic medications, we have learned that they can trigger TD in some individuals. If you have experienced tardive dyskinesia, please let us know what it has been like. If you have used new medications designed to reverse tardive dyskinesia, please let us know how well they work.
Vicki
When I saw my first psychiatrist she gave me a sample of Abilify to supplement Lorazepam because I was so severely depressed. I took one Abilify at night. The next morning my hands and body were shaking so badly I could not get a spoonful of cereal to my mouth! That was a scary experience, and after reading this article I’m glad I didn’t take any more!
Jean R
This comment is about Abilify, mitochondrial dysfunction, and mental illness.
Our son was prescribed various antipsychotics and then finally Abilify for about 15 years. His original diagnosis was catatonic schizophrenia. He has been seen by the Schizophrenia Clinic at our university hospital for a number of years. In recent years, they allowed him to reduce his dose because of side effects. Eventually, the dose got so low that they said he could quit it because it was too low to be effective. (Results below.)
In the meantime, he had cut all gluten out of his diet because of a doctor’s talk that he had heard. That helped his functioning right away. It is possible that he is one of the 5% of people with a schizophrenia diagnosis that actually show what might be called a ‘brain allergy’ to gluten.
For a reference, see “Nutrient Power. Heal Your Biochemistry and Heal Your Brain” by William J. Walsh, Ph.D.
In reference to this, there have been recent stories about a catatonic woman who was “brought back to life” (no longer catatonic) after 20 years when a doctor discovered that she had a serious autoimmune condition that affected her brain.
After weaning off Abilify in 2020, our son began to feel extremely fatigued and the vocal and physical tics (caused by antipsychotics?) increased. He lacked the strength to stand up or focus his thoughts and could only crawl to the bathroom. I needed to use a wheelchair to take him to the doctor, but the doctor seemed to think it was just part of mental illness.
Because of the weakness, I gave him some Ubiquinol (a form of CoQ 10). It helped. That led me to research mitochondrial dysfunction and I found that many of my son’s symptoms were on the list (no one has all of them at once). The most helpful article among many was this research article from PubMed:
“Treatment of Mitochondrial Disorders.” https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4067597/
With the help of lab tests done by a holistic doctor, we tweaked the list and amount of supplements so that our son is now able to function and occasionally works part time. (He will be screened for autism soon.) He still has tics that he sees a neurologist for, but they generally disappear when he is faithful to take all his supplements in a timely fashion. Recently we had to add a dose in the middle of the night so he would awake acting normally and not tired and belligerent.
If he misses a dose of supplements, his body and behavior both reveal it.
This may(?) be useful for those who have used Abilify. Check out mitochondrial dysfunction. Check out autoimmune conditions.
I have a close relative who is probably permanently institutionalized. Previously, when they avoided autoimmune triggers (as determined by testing) their psychotic symptoms disappeared and they could think clearly. But they wouldn’t stick with it after a while and ended up hospitalized.
Other people may have different biochemical issues as laid out in Walsh’s research. Hopefully, this will be helpful to someone.
Rachel
I was prescribed Abilify for a short time for misdiagnosed bipolar disorder over a year ago, and ever since then I have had muscle twitches where my fingers, arms or legs will jump randomly. I got a concussion this year which added an eye twitch and didn’t help matters of course, but everything else started when I took Abilify. I was only on it for a short time and didn’t know it was a possible side effect, let alone a lasting one even after discontinuing the medication. Hopefully this article will help people be more aware of the risks! I’m just thankful since others have gotten it worse.
Connie
Hi, I took Cymbalta for several years, and when the dose was upped so that I could go off my benzos, I got TD. It also spilled over into the Trazedone I was taking for sleep. I would lower the dose, it would go away and then come back, for both meds. It has mostly disappeared after going off both meds. Unfortunately, I am now stuck in a place of highly intense anxiety. I have GAD and PTSD. My psychiatrist is trying to figure out where to go next. Unfortunately, there are so many psychiatric drugs that cause TD.
Susan
I’m 60 years old and stopped taking Abilify four months ago. In January I was diagnosed with Parkinson’s Disease and started Carbidopa/Levodopa. The tremors subsided but I started exhibiting TD. I went to a Movement Disorder Specialist in April, and she wanted to rule out that Abilify had anything to do with the diagnosis I’d received. I had a DAT scan that came back with a “low normal”reading with the request that I repeat the scan in a year.
I am now off all C/L but have had to take Ropinirole for restless leg syndrome that started in March. My MD is hopeful that I don’t have PD and just have these problems because of taking Abilify for at least 9 years. I experience TD in my feet and jaw. The jaw movements are very disruptive and painful to me, as I already had issues with TMJ. I’m hoping that these will go away in time after being off the Abilify longer.
Kim
Just searched for “dry mouth.” 4 articles popped up. None of them address this side effect. Please do an article on remedies. Thanks.
Dakota
I just looked up TD and seen alot of the symptoms are what I have struggled with for years. I am 26 years old, and I have been prescribed multiple medications including Abilify before I was 13. In fact, I was on 150 mg for 4 years before I even hit puberty.
Sherry
Another medication that has the same potential side affect is Reglan. It’s sometimes prescribed for heartburn and gastroparesis, a condition where the stomach doesn’t empty properly. My doctor gave me plenty of warning when prescribing Reglan for gastroparesis. She told me to immediately stop taking the med if any symptoms developed. I started getting some minor muscle spasms after taking Reglan for a few months, so I stopped taking it. The spasms eventually went away. I just wanted to share info about another medication with the same potential side affects.
Crystal R
I was put on Abilify 2 mg to boost my antidepressant after my husband died. In 30 days I had a tremor in my hands that made signing my name impossible. Being an RN, I started weaning myself off it. Took another 5 or 6 months before the tremors resolved.
Louise
20 or more years ago I was prescribed Reglan (metoclopramide) for esophageal dysmotility caused by my limited scleroderma. Fortunately I only used it rarely at night if I had eaten a big meal late in the day. I discovered that Reglan can cause TD!. So I practically quit taking it. I have it on hand but probably do not take 1/2 tab more often that once every 3 or 4 months. I am more frightened of TD that trying to sleep on a full stomach. My point is that other drugs can cause TD also. One website for Reglan does not use the word TD in possible side effects. It just says to call the doctor if you have unusual muscle movements.
Kara
Effexor XR and it’s generic, Venlafaxine, appear to be the cause of involuntary movements in my torso and legs. It took 18 years, and I’m guessing that this length of time was because my prescribed dosage was only 75 mg/day. After 3 years of discontinuing the drug, my symptoms are no better (sometimes they are worse). I haven’t fallen, and my condition doesn’t cause intolerable pain, so it is what it is…I have no hope whatsoever of being normal since two different neurologists were stumped, clueless, and no help at all.
Chaela
Consumers need to know that prescribing physicians are not the experts that we wish them to be when it comes to pharmaceuticals. The numbers of new medications has grown enormously. Follow-up is not where the money is made . . . money is what drives these newcomers. Physicians don’t want to be confronted with irreversible medication errors which they may or may not have taken time to investigate before prescribing.
Luke
People who drink alcohol or other substance abuse (including marijuana), older adults (especially female), being African or Asian descent, are all higher risk of TD. The best way to treat TD is preventing it.
Perhaps there should be more emphasis on old-fashioned psychotherapy and less on drugs. Drugs are an easy fix for doctors. Life is never easy.
I see benztropine (Cogentin) prescribed all the time to prevent extrapyramidal side effects, but in truth can worsen TD or even cause it; Cogentin can impair memory and definitely if someone has prostate issues will be in real trouble as it is an anticholinergic.
R
My sister was on Haldol then Prolixin, and is now taking Abilify. Developing TD tremors, she was prescribed Carbidopa/Levadopa without reversal. Austedo decreased her mobility leading to a fall. We’re hoping titrating her off Austedo returning to Carbidopa/Levadopa will return her mobility. We’ll inquire about Ingrezza at next-month’s one-month review.
Melissa
I’ve been on Abilify for about three years now for bipolar II and noticed about six months ago that I had uncontrollable, sporadic scrunching of my toes. This expanded into the rolling of my tongue, various mouth movements, and a clenched jaw more often than not. I don’t want to continue down this path. I’ve decreased my dose down on the Abilify without the help of my psychiatrist, who was callously casual about the severity of the situation. (I have involved my family and friends in this decision to insure that I have proper support/surveillance of any substantial shifts in my mental state).
I sincerely hope that these movements decrease over time. I’m certainly struggling with my depression and anxiety again and have increased DBT therapy to attempt to remediate these symptoms. Despite this struggle, I’d much rather this than the TD getting worse or going on an additional medication that may come with its own slew of side effect.
Has anyone experienced something similar? Would love to know if the TD symptoms subsided after discontinuing Abilify.
Christine
My mom was on Trifluoperazine for many years and developed Tardive Dyskinesia. Unfortunately, the very early symptoms were not recognized as such and thought to be just part of aging, dementia, and eventually the start of Parkinson’s Disease. We were fortunate to be referred to a specialist of internal medicine and clinical pharmacology who recognized the Tardive Dyskinesia symptoms. He was able to wean her off the medication that caused it, Trifluoperazine, after a period of 10 months. She improved somewhat, but sadly it was too late by the time the medication was discontinued. The permanent brain damage was done.
It is my understanding that Tardive Dyskinesia is drug-induced brain damage caused by prolonged, un-monitored and over-use of these types of medications. If it is recognized as such, and caught early enough it can be prevented? We were grateful to be able to see the specialist and get a proper diagnosis before any more wrong medications were added, that, in our experience, only made the complex effects of Tardive Dyskinesia worse.
Glad to see this disorder finally being recognized!
Lee
My wife has TD from taking Zyprexa years ago for bipolar. In April, 2019 she began taking Austedo. Her neurologist helped get a grant, as the med costs over $10,000 a month. Very quickly her TD symptoms began to improve. Her mouth/tongue movements all but stopped. The dose is titrated up over a a month or so. She already had weakness in her legs from a stroke in 2017, but she ambulated without assistance, no walker or even a cane. But she seemed to be getting weaker as the months went on.
In August, 2019, she completed decompensated. She couldn’t walk and lost bowel/bladder control. Hospitalized for a week, then transferred to inpatient rehab for 2 weeks with no real diagnosis. When she got home, she was basically in nursing home condition. Couldn’t feed herself, dress herself or anything. Was going to require round the clock home care. A few days later she was at her neurologist for followup. I had asked the hospital neurologist about the Austedo, and he said her issues were not related. At her neurologists, I insisted she discontinue the Austedo, as nothing else had changed over the past months. He agreed.
THREE DAYS LATER she was back to normal! Unfortunately the TD came roaring back. It appears to me that there was interaction with the depakote she takes. Depakote (divalproex sodium) is among the 300 drugs listed as possible moderate interaction, but doesn’t mention any of the catastrophic side effects my wife experienced. Nor was she warned by either her neurologist or the pharmacy.
Scott
It is my understanding that Ingrezza cost about $143 per DAY. Calculate out how much that is per year. And the effect, I believe, of a reduction in symptoms by 50% is optimistic, but then again consider the placebogenic effect.
Hutsie B
I have had TD for a few years. At first Ingrezza helped, but it got worse, and now it is not helping at all even with a larger dose.
Linda
Though I take none of the mentioned drugs, I have used antidepressants from time to time over the years. The remarkable side effect of them all is twitching and what I describe as a “jumping bean” feelings. Does anyone else notice this? Eventually I stopped them, as they disturb my sleep.
Marie -
For anyone who wants to learn more about the drugs in question I would like to recommend this book.
“Psychiatric Drug Withdrawal : A Guide for Prescribers, Therapists, Patients and their Families”. It`s written by Peter R. Breggin in the U.S.
I have never taken this type of drugs but my old father was drugged with a neuroleptic in 2003. That`s when I started to look for information in articles and books which I recommend. Don´t stop any medication without having a talk with the prescribing doctor.
Patti
After taking Abilify for several years, I had tardive dyskinesia. The movement is my mouth twisting whenever my hands are in running water such as, when washing my face, washing my hands, washing dishes.
Debi
I’ve been on a high dose of Abilify for many, many years, and developed TD gradually…. the doctor seems to think I”m making it up because the news is just now talking about it, but I’ve had it for years…. My legs jump (mainly at night) and my arms twitch… (I”m also on Effexor 300mg a day that I”m doing good with)(That’s not talking about my tongue that is always moving in my mouth) I’m always rocking in my recliner/rocker or my legs are always bouncing… I can’t sit still or I”m jumping or twitching….. I grit my teeth with my jaw sideways & have worn my frontteeth down… the doc still thinks I”m making it up because SHE’S never seen me do it……… geez….. she sees me 5 mins max… unless I”m having a physical……. I may have to switch to another more versed doctor…. My jaw and teeth are messed up because of it. I started with a new shrink about a year ago and he started reducing my abilify slowly til I”m only taking 5mg and I’m doing fine now… except for this darned TD…. and the TMJ from the TD… If anyone has any suggestions of how to get around this, I’m open… I need my life back…. I’m tired of corrective surgeries…
Jane
Can’t wait til the side effects of these drugs become obvious, and wonder how long it will be till patients learn about them.