There are two FDA-approved drugs to treat tardive dyskinesia, Ingrezza (valbenazine) and Austedo (deutetrabenazine). These medications were approved in 2017 and are known as VMAT2 inhibitors (vesicular monoamine transporter 2 inhibitors). They work by blocking a protein called VMAT2 which controls how much of the monoamine, particularly neurotransmitters, is stored in each neuron and how much is released. VMAT2 inhibitors block VMAT2 which means there is a lower amount of neurotransmitters available and involuntary movements should be reduced. (As of late January 2021, Austedo (deutetrabenazine) is available in China.)
The following medications (this is not an all-inclusive list) are not FDA-approved for tardive dyskinesia, but have shown some benefit in some people:
Amantadine: An anti-Parkinson’s drug that has shown some efficacy in the short term.1
Clonazepam: A GABA agonist/benzodiazepine that has been shown as effective in some patients, with short-term use (less than 3 months).1
Clozapine: An antipsychotic that has shown improvement in some TD patients. This medication requires weekly lab testing for the first few months and has some potentially dangerous and other negative side effects.
Propanolol: A single study showed benefit, especially in milder cases.1
Tetrabenazine: “Given the higher-quality evidence in support of the other VMAT2 inhibitors with fewer adverse effects, valbenazine and deutetrabenazine should be preferred over tetrabenazine for the treatment of TD.”2
Most people with TD and tardive syndromes were not well-informed of the risks of the drug(s) that gave them TD, through no fault of their own, and some are quite cautious of taking any drugs.
1. Lin, C.-C., & Ondo, W. G. (2018). Non-VMAT2 inhibitor treatments for the treatment of tardive dyskinesia. Journal of the Neurological Sciences, 389, 48–54. doi: 10.1016/j.jns.2018.02.014
2. Ricciardi, L., Pringsheim, T., Barnes, T. R. E., Martino, D., Gardner, D., Remington, G., … Edwards, M. (2019). Treatment Recommendations for Tardive Dyskinesia. Canadian Journal of Psychiatry, 64(6), 388–399. doi: 10.1177/0706743719828968i
Other Medical Treatments
Deep Brain Stimulation (DBS): For classic TD and especially tardive dystonia, this treatment is only considered for patients with severe symptoms that have not responded to other treatments. It involves surgically implanting a pacemaker-like device that sends electrical impulses to one of two areas of the brain, the globus pallidus internum (GPi-DBS) or the subthalmic nucleus (STN-DBS), involved in movement. Electrodes are placed deep in the brain and are connected to a stimulator device. GPi-DBS surgery has shown a therapeutic role over STN-DBS in reducing tardive symptoms, though further research is needed to determine the most appropriate stimulation target in the brain. GPi-DBS has shown a continuous improvement in motor function over months and years in some cases.1
Botulinum toxin: It is derived from Clostridium bacteria. Botox injections have shown to be effective in some patients with tardive dystonia, especially focal or segmental dystonia. The injections require expertise as injections in the area around the mouth and tongue can cause difficulty speaking and swallowing, if not performed precisely. The jaw, upper area of the face and neck can more safely be injected.2
1. Macerollo, A., & Deuschl, G. (2018). Deep brain stimulation for tardive syndromes: Systematic review and meta-analysis. Journal of the Neurological Sciences, 389, 55–60. doi: 10.1016/j.jns.2018.02.013
2. Lin, C.-C., & Ondo, W. G. (2018). Non-VMAT2 inhibitor treatments for the treatment of tardive dyskinesia. Journal of the Neurological Sciences, 389, 48–54. doi: 10.1016/j.jns.2018.02.014
Self-Help Techniques for Tardive Dyskinesia and Tardive Syndromes
A special thanks to Leslie Baumgartner for compiling the following section:
“Caring for your body, mind, and spirit is your greatest and grandest responsibility. It’s about listening to the needs of your soul and then honoring them.” – Kristi Ling, American Writer
If you or a loved one has been diagnosed with tardive dyskinesia and/or one of the tardive syndromes, including dystonia and akathisia, you understand the challenges these conditions present, not only changing the way your body functions, but affecting your home, work, and social life. Tardive dyskinesia can include areas such as the head and face, neck and torso, arms and hands, legs, feet and toes, and balance and gait. Because of the nature of tardive dyskinesia, it can affect a combination of areas of the body, be concurrent with other illnesses for some, and occur in frequency and degree of severity depending on each person’s involvement.
The good news is that there are many self-care resources that people dealing with tardive dyskinesia and tardive syndromes can use to make activities of daily living more comfortable. The following non-pharmaceutical suggestions have been taken from internet sources and comments expressed on social media by those with tardive dyskinesia or those who care for others. What works for one person may be of tremendous value; it does not necessarily work for another. Take note that sometimes what can be helpful can sometimes also worsen symptoms. Tailor these to your individual needs. (Brand names are not included.)
The most important way to care for yourself is to listen to your body. Empower your “self” as you manage your own tardive dyskinesia and tardive syndromes. Read, research, and stay up-to-date as scientific studies are constantly changing and new information becomes available. Set your boundaries with your knowledge. See which self-care suggestions do work for you and learn which ones to avoid. Build your own community by finding others who also are diagnosed with tardive dyskinesia and tardive syndromes by joining social media groups who can share your concerns and help answer questions. Your experiences are just as valuable and may be what someone else is looking for. Find those you can trust. Take note of situations where you can feel comfortable and experience them. BE YOUR OWN BEST ADVOCATE!
The following sections provide suggestions for self-care for those with tardive dyskinesia and tardive syndromes.
Click on each section to find out more information.
Head and facial manifestations of tardive dyskinesia can be frequently shown in head shaking or bobbing, eyebrow raising, excessive blinking, grimacing, lip smacking or pursing, fish-like movements of the lips, tongue darting in and out of the mouth, sucking the tongue and teeth, moving the jaw to the side, grinding teeth, mouth and tongue sores and ulcers, sore throat, neck pain, sucking, and the need to swallow and with difficulty. Speech can become difficult to understand and there may be vocal tics.
- It is important to keep your dentist up-to-date with the symptoms of your tardive dyskinesia and tardive syndromes. Let him/her know how best to proceed during dental procedures to make your appointments comfortable. A professional dentist or specialist should be cognizant of your particular symptoms, such as difficulty swallowing, the need to breathe through the mouth, or perhaps getting out of the dental chair to take a break. Keep regularly-scheduled appointments for cleanings and work.
- Many people find it necessary to wear a dental appliance during the day and/or night that keeps the teeth from grinding and clenching. It is not unusual for people with tardive dyskinesia and tardive syndromes to fracture teeth from mouth movements or break denture teeth. There are mouth guard kits at pharmacies and retail stores that allow you to take an unfitted thermoplastic material that you boil and bite into and mold it to your own bite. This is a less-expensive method. Your dentist can specifically-fit your bite to make a snug-fitting retainer or you may need one that is molded in a more dense and sturdy material to prevent tooth damage. These options are more expensive, but you will get the most comfort and protection than the lesser-priced version. Be sure to always take your appliance to dental appointments to check for shifting of teeth, and replace these if you notice tears. Mouth guards should allow you to breathe and speak without difficulty. When questioned in social media groups, there are those who feel they do well with just wearing the bottom appliance. This is an individual preference. For those who wear dentures, you may prefer wearing these in public and resting your mouth when at home.
- Finding a good toothbrush that is not too hard is beneficial. Regularly brushing teeth keeps them healthy. Look for a toothpaste that doesn’t burn your mouth, such as sensitive brands. One of the concerns of tardive dyskinesia and tardive syndromes symptoms involving the mouth is the burning sensation from constant movement. Check out how mint flavors and fruity flavors affect your own comfort levels. Use a quality mouthwash that doesn’t contain alcohol and doesn’t burn. You can find formulas that help with dry mouth. Be careful not to use a mouthwash that stimulates hypersalivation, a problem for some tardive dyskinesia and tardive syndromes sufferers. Analgesic mouthwashes help with mouth and tongue sores, but should be used sparingly. Warm salt water rinses can help with a sore throat, but it is best to use very little salt that can trigger mouth movements. Plain warm water rinses frequently during the day also can be of use. Mouth sprays that can be taken along with you are also helpful. Some dentists can prescribe specially-formulated mouth rinses.
- If travel sizes are available on toothpastes and mouthwashes, this is a convenient way to see if particular brands work for you without having to buy expensive options and find out what doesn’t work.
- Flossing regularly helps keep food from between teeth that can encourage tooth decay and even movement of the teeth. Different companies make thinner (unwaxed) floss or thicker (waxed) floss to suit your needs.
- Disposable dental flossers may be helpful for those who have difficulty using their hands to reach teeth at the back of the mouth. Ask your dentist what would work best for you.
- Take note of which foods and drinks seem to exacerbate an already-sore mouth. These could be spicy, acidic, tomato-based, chocolate, chemical additives, irritating textures such as crispy, alcohol, sugar, salt, and caffeine. With an already-sore mouth, be careful with foods that are hot and can scald.
- Chewing gum and sucking on mouth lozenges can keep your mouth from being dry (and mask the appearance of uncontrollable mouth movements!).
- Experiment with different lip balms to soothe your sore, cracked lips. Find what works for you that doesn’t sting. Mouthwashes can be gently-dabbed on lips using a soft gauze. Watch out for formulas that dry the mouth.
- The practice of oil pulling with coconut oil can benefit sore mouths. Try swishing one Tablespoon for 15-20 minutes 2-3 times a day. This does not take the place of brushing or other oral health care. Do not use this method if you are allergic to coconut or coconut oil. When starting out, you can try a few minutes at a time and increase. Spit the oil into the garbage instead of swallowing. If you can, wait awhile before brushing your teeth to get the best benefits. Try organic coconut oil since this will be absorbed into the cheeks.
- Keep a water bottle handy to sip from, use ice chips, popsicles, or frozen fruit to keep your mouth moist. Sipping from a water bottle when you are talking to someone makes talking easier.
- Drink lots of water! Keep your body hydrated.
- If it helps, try using gummies instead of swallowing pill forms of supplements and vitamins.
- If you have a medication that comes in liquid form versus pill form, you may prefer this option.
- Regularly keep eyes clean of debris if you have blepharospasms or rapid eye blinking. Avoid stress when possible as this can make eye movements increase. While lying down, try using a warm wet washcloth over the eyes when needed. Rubbing the temples may be helpful.
If you suffer from sore neck and back pain from uncontrollable movements such as the need to move back and forth (rocking), thrusting the pelvis, rigidity and spasms of tardive dyskinesia and tardive syndromes, there are a number of methods you can try to find relief.
- Heating pads, including ones that cover the neck and shoulders together
- Microbead wraps which come in small, medium, and large sizes that target specific areas. These easily heat in the microwave and have washable outer covers.
- Extra-large microbead wraps that can target pain around the neck, stomach, and lower back due to its size
- Ice gel packs (be sure to use a towel around it to avoid skin contact)
- Analgesic creams, roll-ons, sprays, and patches
- Weighted blankets that make you feel like you are being hugged and being calmed. These come in different weights and sizes.
- Airplane pillows that help with neck strain and cushion the neck
- Reduce the amount of time your neck is under strain, such as working on the computer or on a cell phone. Take time away from looking down to prevent stress to the neck area.
- Hot towels
Arms and hands may tremor or jerk, fingers may tap, move separately, or appear to be playing a piano, and there may be contractures, rigidity, and writhing movements. Methods to make activities of daily living easier can be found on online sites for those with arthritis, Parkinson’s, and various physical disabilities which are also beneficial for those dealing with tardive dyskinesia and tardive syndromes. Some of these ideas are listed below.
- Eating with silverware that uses built-up handles make it easier to hold utensils. There are even aids that hold toothbrushes. Many aids are available through arthritis online sites for help in the kitchen, such as jar openers and pop-top openers.
- Wearing comfortable clothing, such as pants with elastic waistbands, avoids using buttons or zippers.
- If wearing clothing with a zipper, slide a key ring through the hole in the zipper to make it easier for sore hands to pull the zipper up and down and give you something larger to grasp.
- Button hooks can be used to pull buttons through the holes.
- Pull socks up with easy to hold handles using a sock aid.
- Long shoe horns can help you put on shoes with minimal bending.
- Experiment with keyboards and cell phones to find the brands that are easy to use for painful hands and fingers.
- Thumb braces and hand splints help with contractures, but be careful using when spasms are happening.
- Arthritis warming gloves help relieve sore hands.
- Book holders allow you to read without the constant use of your hands.
- Writing aids, such as those that are larger in size and contoured to fit the shape of one’s hand, are available; others sold in stores allow your hand to stabilize on a surface while you hold a base with the pen inserted that guides your hand as you write
- Scissors can be used that involve squeezing rather than putting your fingers into the handles.
- Lap desks that lay flat or are slanted to hold wireless keyboards and tablets, books you are reading, notes you are writing, help lessen hand strain.
- Use speech recognition programs which turn talk into written word on the computer or on a cell phone
- Keep notes by using voice-activated recorders. These can be beneficial to use for doctor appointments.
Legs, feet, and toes may tremor, jerk, spasm, or contract. Feet may rock and toes feel like they are dancing. Walking and balance are affected when the legs give out.
- Cold gel socks are beneficial for relief from burning, stinging, itching feet.
- Weighted blankets act as a gentle snuggle and are beneficial with tremors and spasms. These come in different weights and sizes.
- Invest in quality walking shoes with a large toe box for those dancing toes. Check out the inside of your shoes for wear if your toes move.
- If comfortable, find soft shoes to wear in bed to keep toes movements to a minimum.
- Open-toed shoes and/or flip flops may make toe movements increase and result in a trip hazard. Judge this by your own experiences.
- Keep toenails trimmed so these are comfortable inside shoes.
Balance and gait issues are a frequent concern for those with tardive dyskinesia and tardive syndromes. It becomes very important to be mindful of one’s surroundings to minimize tripping and falling.
- Check out local services to see if there is transportation available for those with disabilities, such as buses and taxis.
- Whenever flying, make use of airport wheelchair transportation services.
- Use a powered shopping cart in stores if possible.
- If needed use a walker, or a rollator walker that comes with a seat for resting.
- Help stabilize your walking with a cane.
- Electric scooters and electric wheelchairs can be adapted to fit comfort needs for mobility; controls can be modified to fit your ability to use your hands.
- Handrails are important for maintaining balance when ascending and descending steps.
- When elevators are available, these make going between floors easier than stair climbing.
- Stair lifts help for those who cannot go up and down stairs at their home.
- To help with getting up from a seated position, chair lifts raise you up and move in angled positions to help you balance to stand. Chair lifts also come with the ability to recline in various degrees, including models that can completely recline.
- Removable bed bars strap under a mattress and are secured, and fit snuggly to help keep you steady while getting in and out of bed.
- Be sure to take extra careful at night and avoid walking in the dark. Wearing shoes at all times can help avoid stumbling into something. Make all your movements purposeful.
- Keep open spaces in your areas clear so you won’t trip and fall and make sure floor rugs are non-slippery.
- A tool for reaching can grab what you need without bending over and losing your balance.
- Bathtub and shower aids, such as grab bars, shower seats, non-slippery bath mats, non-slippery bath rugs, and bath steps with a safety handrail, can be invaluable. Be sure the grab bars are secure.
- Safety bars and rails can help in getting on and off of a toilet
Other considerations for living with tardive dyskinesia and tardive syndromes:
- Keep a daily journal and binder/folder for information. This can be handy for doctor visits. You can chart your moods, your daily tardive dyskinesia symptoms, what may have triggered these symptoms (foods, stressors, illness), keep an ongoing list of questions for your doctors, a place to keep drug company pamphlets you get from the pharmacy, any research you may be doing, track your routines of when you get up, take your medications, when you go to bed and drug dosages, as well as side effects, a history of drugs and dosages you have been on in the past and those side effects, any medical tests, including bloodwork, that may point to deficiencies, and supplements you are taking and dosages. Doctors always have questions at your visit that you can readily answer with your journal.
- If it is not uncomfortable for you to do so, take videos of yourself when your symptoms are present. This information is invaluable to use at your doctor appointments. These symptoms are not always present when you are with your medical professional.
- Video doctor appointments are now available through many medical clinics. This can be helpful when you are unable to get out from your home.
- Be careful to never miss a medication. Research shows that withdrawal symptoms can begin even after the first missed dose. Pill minders come in many forms from once-a-day to morning, afternoon, and night. These also come in large sizes to make them easier to handle. Pharmacies can fill medications in bottles with easy-open caps, but if this is a safety issue in your home, you can buy aids that help you open bottle caps that fit on top of a medicine bottle and are easier to grasp. Use alarms to remind you to take your medicine. For example, there are watches and pendants set to automatically alert you when needed.
- Carry a tardive dyskinesia identification card that alerts others to recognize your symptoms in case of emergencies. This can be carried in a wallet or purse or on a lanyard. Sometimes the uncontrollable movements in public as witnessed by others may cause concern and this will alleviate any misunderstandings.
- Wear a medical alert bracelet or watch to identify your condition if emergency services may be needed.
- Medical alert systems that monitor 24-hours a day in the home connect you with those who can help when quick response time is needed.
- Wear a purse with the strap across your chest instead of carrying one. This way frees the hands, just as backpacks and fanny packs do.
- If incontinence is a concern, don’t be embarrassed to use absorbent undergarments such as diapers and pads. Leak-proof underwear for women is available online. Large pads can be used to protect chairs and couches. Bedding, such as waterproof pads and waterproof bed mattress covers, help with accidents.
- Support Animals can be of great comfort when someone has tardive dyskinesia and tardive syndromes. Animals can provide comfort through affection and companionship. Emotional Support Animals are trained to perform specific tasks and are worth looking into further if you feel you can benefit from having one.
- A reassuring support person can let you know you are not alone, that the spasms do and will end, and can be by your side to hold your legs gently but firmly.
- It is helpful when someone who is at risk for choking when eating or taking pills has a person nearby to make sure everything is fine.
- Music can help reduce anxiety and stress and is beneficial for those with a variety of health concerns. As you listen to your favorite songs, sing, hum, dance and move to the rhythm!
- Headphones are a great way to keep noises out and help someone relax.
- For some, particular scents/smells can be nauseating and worth avoiding.
- Tapering off of causation medication is often used when diagnosed with tardive dyskinesia and tardive syndromes. There are social media groups available to help individuals who want to taper according to the particular medication. It is recommended through research that this is best accomplished in small, carefully-measured increments and done over extended periods of time. Some methods involve using a jewelry scale to get the most accurate results by weighing tablets; another method is by opening capsules and counting miniature beads, reducing a little at a time. Gelatin capsules are available online when replacing beads. Water tapering (or using another liquid) is another method of titrating off of a medication. Keeping a detailed journal or chart of your tapering is very important, and you can keep a record of side effects as you titrate. Check research to know what possible side effects may occur. It is always up to the individual whether he/she should taper off of any medication. The benefits should always be weighed against the disadvantages.
- When tapering, make sure you are taking the same brand of medication. Check with the pharmacist each time. A doctor can specify a particular brand on a prescription if needed by the pharmacist.
- Whenever possible, ask the doctor to write a prescription for a 90-day supply of your medications to avoid having to make trips to the pharmacy and possible delay times in getting drugs filled. Some pharmacies can “sync” medication refills so you pick them up all at one time. Mail-order prescriptions are useful and save trips to the pharmacy.
- Keep an extra supply of medications available in case you forget and are unable to take them. Pharmacists can print an extra label for each drug. Keeping a container for all drugs together may cause difficulties if you are possibly questioned about the medications you have in your purse or car.
- Meditation, quiet time, and deep breathing help calm and reduce anxiety. Find a space where you won’t be interrupted and be in an area that is just the right temperature for you. Breathe in through your nose and out through your mouth, counting in your mind as you go along. There are online videos that you can follow along with to help with meditation and deep breathing. The benefits of massage can be relief for anxiety and stress, and provide help with fibromyalgia pain, headaches, and muscle strain soreness.
- Light exercise can be beneficial, but for some people more movement can cause symptoms to be worse. If you are diagnosed with respiratory tardive dyskinesia, you have to be particularly careful regarding too much exercise.
- Get out in nature, get fresh air, and notice your surroundings!
- Try different herbal teas for their health benefits.
- Anxiety, illness, and lack of sleep are listed by those who responded to a social media question as the three areas that make tardive dyskinesia and tardive syndromes worse for them. Pay attention to how each of these affects your body. Getting plenty of rest is crucial.
- Memory functioning is often reported as a concern for those with tardive dyskinesia and tardive syndromes. For times when you have parked your vehicle and need to remember where you are parked, use the camera on your cell phone or take notes so you won’t forget. If you are a person who likes to make lists or keep notes, use one notebook so you won’t have too many and risk forgetting which one has the information you need. If you have an app on your cell phone to keep notes or memos, it can be beneficial in helping with memory. GPS apps on cell phones make finding locations simple. Voice recorders are useful to keep notes, and beneficial for doctor appointments to remember what was discussed.
- Plan ahead whenever you can to avoid stress!
Doctors, specialists, and care professionals listed by individuals with tardive dyskinesia and tardive syndromes that treat them may include:
- Primary Care Physicians, nurses, physician assistants
- Dental care professionals
- Psychiatrists, Psychologists, Therapists
- Neurologists who specialize in movement disorders
- Functional medicine doctors
- Homeopathic doctors
- Speech therapists who may also help with, not only communication difficulties, but with swallowing issues and recommending foods best to eat that make swallowing easier (such as pureed)
- Home health care providers
- Physical Therapists, Occupational Therapists