Tardive dyskinesia (TD) is a rare but potentially permanent side effect of some antipsychotics and other medicines after long-term use. But there are multiple ways to treat and manage the symptoms. If you’re ready to look into treatment for your TD, here’s a guide to talking to your doctors about the physical and emotional effects of this condition.
Talk to Your Doctor
You’ll start by talking to the doctor who prescribed the medicine that caused the condition. This might be your family doctor or a specialist who manages a specific condition you have. Multiple medications can come with the risk of TD as a side effect. Some of the most common ones include antipsychotics for several different mental health conditions, gastrointestinal medications, malaria medications, and some drugs for neurological problems.
Whichever doctor you’re visiting, it’s important to remember that they prescribed that particular medication for a reason. So you shouldn’t stop taking it before talking to them.
A few questions that may be helpful to ask the doctor who prescribed the medication are:
- Why was my medication prescribed?
- Do I still need this medication?
- Are there alternatives that don’t have TD as a possible side effect?
- If there aren’t other options, would lowering my dose help?
- Do I have other risk factors for TD besides taking this medication?
- Which of my symptoms are caused by TD?
- Will these symptoms impact my daily life?
- How will stopping or changing the dosage of my medication affect the condition you prescribed it for?
- What can I expect when I stop or alter my medication?
- How much will a medication change improve my TD symptoms?
When possible, your doctor will change, adjust, or stop your medication. They might also lower your dose slowly over time. Adjusting the medicine that’s causing your TD usually improves the symptoms, and sometimes, it can stop them completely. But if this first step doesn’t help, there are other steps you can take.
Talk to a TD Specialist
If your doctor’s medication changes don’t help you enough, you might want to talk to someone who has special expertise in this condition. TD, which is a movement disorder, is a neurological problem. You can get help from a neurologist who is a movement disorder specialist. Ask your doctor for a referral or do a search for this type of specialist online.
A movement disorder specialist may suggest one or more of a few different treatment options for your TD, including prescription medication, procedures, and supplements.
Here’s a little more about the various treatment options, so you can prepare to talk about them with the specialist:
Prescription medications. Doctors may prescribe a medication from a category of drugs called vesicular monoamine transporter 2 (VMAT2) inhibitors. They change the activity of certain chemicals in your brain that affect muscles, nerves, and movement. These drugs include:
- Tetrabenazine (Xenazine)
- Valbenazine (Ingrezza)
- Deutetrabenazine (Austedo)
Procedures. A couple of procedures may be available to you, but doctors are still researching them and don’t have a large amount of data about their benefits in people with TD. They include:
- Botulinum toxin, also known as Botox, which can temporarily paralyze muscles in your face to prevent involuntary movement.
- Deep brain stimulation, also known as DBS, which involves an electrode implanted in the brain, where it can stop involuntary movements.
Supplements. Some vitamins or supplements may help improve symptoms of TD. It’s important to understand that researchers don’t study supplements as much as they do prescription drugs. So your doctor won’t have as much information about how well they work compared to the available information about prescriptions. That doesn’t mean supplements don’t work. It just means doctors may not know for sure.
Some supplements that may help with TD symptoms according to limited data include:
- Vitamin E
- Ginkgo biloba
- Vitamin B6
Before you try a supplement, ask your doctor whether it’s safe. Even though they are available over the counter, they can still have dangerous interactions with your other medications.
As you discuss treatment options with your movement disorder specialist, you might want to ask some of the following questions:
- Which treatment plan is best for my situation?
- How much do you expect this plan to improve my symptoms?
- Will your recommended medications interact with any of the medicines I already take ?
- What are the side effects of this treatment?
- How often can I have a symptom assessment to make sure my treatment is helping?
Talk to a Mental Health Specialist
Treatment of physical symptoms isn’t always enough to bring relief for TD.
TD is different for everyone, but it can make it hard or impossible to get through daily tasks like carrying groceries, talking, eating, driving, dressing, and managing personal hygiene. The condition may also make you want to stay alone at home to avoid the unwanted attention that your involuntary movements may attract in public.
This impact on your quality of life can lead to feelings of sadness, loneliness, and stress. These can be made worse by a pre-existing mental health condition and any medication changes you’ve made to treat your movement disorder.
With all of this happening, you might want to talk to a mental health professional. If you don’t have someone already, ask your doctor for a referral.
At a first meeting with a mental health professional, you might want to ask some of the following questions:
- What should I expect from my recent medication change – any mental health changes?
- How can I deal with the emotional effects of TD?
- How can I cope with TD’s effects on my daily life?
- Are there any local or virtual TD support groups that you recommend?
TD is not an easy diagnosis. It takes a physical and emotional toll. But there is treatment that can help with both the physical and emotional symptoms. Don’t wait to talk to your doctors about your TD symptoms. The sooner you get help, the better you’ll feel.
