BY ALLISON STRONG

Have you ever felt that you were the patient treatment wouldn’t help? After three years of searching for relief from tardive dyskinesia, a side effect of my bipolar medications, I was defeated. Out cold. Counted to ten. My saving grace was my husband because he would not let me give up. We were both up every morning at 5:00 a.m., googling “Movement Disorder Specialists,” “Tardive Dyskinesia,” “Neurology,” and other keywords that weren’t specific enough to get me the help I needed to stop the uncontrollable shaking.

Tardive dyskinesia, also called tardive dystonia, akasthesia, or extrapyramidal symptoms, is a type of movement disorder.

Tardive dyskinesia is a side effect that some people develop when taking antipsychotics, which are commonly used for bipolar disorder. Basically, it’s nonstop, purposeless, and involuntary muscle movements. Their locations can vary. Most people have it in their jaw, and look like they are chewing gum or thrusting their tongue. Tardive dystonia refers more to muscle stiffness and a “lock” of sorts in an unnatural position. Both tardive dyskinesia and tardive dystonia can be truly disturbing and disabling.

According to NAMI, the incidence of tardive dyskinesia is 5% for each year the antipsychotics are being taken. NAMI says that over a decade of antipsychotic use, 30-50% of patients will develop tardive dyskinesia. The number is slightly lower according to the Center for Tardive Dyskinesia. This is important because most people with bipolar disorder who take antipsychotics benefit greatly, needing these medications long-term.

Tardive dyskinesia is chronic. There is no cure, only symptom management.

Eventually, my symptoms got so bad that I couldn’t sign my own name. Friends, relatives and acquaintances regarded me warily, with fear and pity in their eyes.

I put myself on the waiting list at the National Parkinson’s Foundation in Miami, a leading resource for movement disorders. While I waited, I saw a few horrible movement disorder specialists, one of whom said I had restless leg syndrome. Another said it was psychosomatic.

After nine months on the waiting list, I went to my appointment at the National Parkinson’s Foundation and was put on a dopamine agonist used for Huntington’s chorea (another movement disorder). I am grateful that I was able to have this expensive medication covered by the Caring Voice Coalition, a foundation that provides support for people with chronic illness [Editor’s note: Caring Voice Coalition ceased operations in May 2019].

With this medication I was better but still struggling. I went to fifteen doctors’ appointments and had three hospital visits. The emergency room doctors just wrung their hands, shook their heads and sent me up to psychiatry.

The crucial thing I needed was a movement disorder neurologist specializing in tardive dyskinesia, or a psychopharmacologist. A physician accustomed to treating people with bipolar disorder might not have dealt me the stigma, sexism, judgement, and callous ignorance I got at every turn. Ironically, neurologists blamed psychiatry’s medicines, while psychiatrists assigned damage control to the neurologists. I was falling between the cracks.

Finally, I narrowed my search enough to get a new result for a movement disorder clinic researching tardive dyskinesia! It was far away, but my husband insisted on driving me. I met the doctor and got a new prescription. With this combination, the muscle tremors disappeared. That was in 2011. Treatment has improved so much.

In the end, I required a combination of medications, like many other people. It took a while to get it just right. My triumph over this challenge reinforced my faith in myself. Next time I fly into the headwinds of a storm, I’ll be ready. I hadn’t been left out in the cold, after all.

Watch my videos on tardive dyskinesia for more information and ideas on getting treatment for this side effect. Part 1 covers the basics, and Part 2 focuses on finding treatment.

10 Years later: An Update on Tardive Dyskinesia

This is an update on an IBPF blog that I wrote a few years ago, “Move Over, Movement Disorder,” about my tardive dyskinesia (TD) and all the hoops I had to jump through to attain symptom control. Back then, half the doctors I saw thought it was all in my head!

You may have seen or heard the disclaimer “Call Your Doctor if You Experience Repetitive, Involuntary Movements as These Are Serious…” etc., etc. That’s tardive dyskinesia (TD) they’re warning us about. For the most part, TD is an irreversible side effect of drugs being called dopamine receptor blocking agents. Atypical and traditional antipsychotic medications, which are used to manage bipolar depression and bipolar disorder, fall in this category. (That’s how I ended up with it). I’ve had the side effect of TD for ten years. There’s no cure but treatment is possible.

Persistence is key. Treatment is so individualized. Everyone’s case is different.

That being said, if I knew then what I know now, I would have saved myself tons of time, not to mention grief, by narrowing my search criteria to movement disorder clinics that treat patients with tardive dyskinesia. That’s an important distinction to make. Even if a receptionist says her doctor treats TD, that doesn’t mean that doctor will be able to help any single patient. Persistence is key. Treatment is so individualized. Everyone’s case is different.

TD can be quite disfiguring, causing the sufferer to isolate. Usually it’s in the mouth and jaw. Some people constantly stick out their tongues (“mouth of worms”), appear to be chewing gum, grind their teeth, or bob their heads. Mine is in my extremities and spine.  I was misdiagnosed with restless leg syndrome, akathisia, Parkinson’s disease, told I was a “drug seeker” and labeled “psychosomatic.”

So here’s the Million Dollar Question: What are our chances of getting it?

No one knows the answer!

Not even top TD doctor Joseph Jankovic, Director of Parkinson’s Disease Center and Movement Disorders at Baylor College of Medicine. According to Dr. Jankovic, there’s “a lot of misinformation on the internet and no authoritative body of knowledge.” Researching my book on TD, I learned a lot from him. His informational website, http://www.jankovic.org, publishes general information on the disorder and abstracts of recent clinical studies for new treatments. He adds information constantly, so you may want to visit his site.

The incidence rates Dr. Jankovic has seen range from .05% to 60% for an average of 20%. This is because the risk factors vary so much from person to person. Women get TD more often than men, and there’s a much higher rate for elderly women and people with a past history of substance abuse, for example. Another researcher, Yale University’s Dr. Scott Woods, conducted and authored his own five-year study and found an incidence rate of nearly 19.7% at 4.9 years. Mental Health America’s rate ratios for TD are 10-30%. National Alliance of Mental Health (NAMI)’s numbers are 30-50% for anyone taking atypical or traditional antipsychotics for more than a decade.

However, things are improving for us. The same movement disorder clinic that pronounced me psychosomatic now has a special TD clinic. Psychiatrists and other doctors are more aware of TD, working with their patients to find the minimum therapeutic dose and/or frequency, reducing risk.

Here’s the big announcement:  A novel medication to treat TD is in late-stage research and development, and may be FDA approved in a few months. We’ve never had a “first line”TD treatment before! I’ve been told there will be “disease awareness” education for doctors so they can better treat or refer their patients to an appropriate TD specialist. There’s a lot for them to learn. TD has been a fringe issue since it was discovered more than 60 years ago.

That’s about to change. Our patient population has more than doubled recently, from less than 200,000 to 500,000. Clearly, tardive dyskinesia is a growing concern, much harder to ignore.

So let’s come out of the closet, wear our symptoms like a badge of courage, and raise awareness for our common cause.

We won’t be alone.

At long last, we have partners in this.

About the Author

Allison Strong attended Stanford University on a volleyball scholarship, played professional beach volleyball, and has acted in TV and film. In the past, she has also been an alternative rock DJ for “The Edge,”“The Q” (Phoenix, Arizona) and “The X,” (Los Angeles, California). She also was an international music critic for Melody Maker (UK), had a weekly column (“New Noise”) in the Arizona Republic and wrote for Hits Magazine. When she had her first manic episode, she went inpatient and was diagnosed with bipolar disorder. Undaunted, she mailed out job applications (from the hospital) and landed at a local station. She loves the raw honesty of The Smiths, Nirvana, The Cure, etc, and follows new music today. Allison lives in Hollywood, Florida and also writes for The South Florida Sun Sentinel, The Miami Herald, International Bipolar Foundation, Psych Central, and NewLifeOutlook Bipolar. Her personal blog is: Bipolar Strength: Rebel With A Cause.