Have you ever felt that you were the one patient who just couldn’t be helped? That was my mindset three years into my search for relief from Tardive Dyskinesia. My only saving grace at that point was my husband; he didn’t entertain that thought and wouldn’t let me. We were both up every morning at 5am, googling “movement disorder specialists,” “neurology,” “extrapyramidal symptoms,” “Tardive Dyskinesia,” and more.
Tardive Dyskinesia (TD) is a chronic condition some people develop after taking anti-depressants, certain GI medications, and atypical antipsychotics.
Atypical antipsychotics are an update on the powerful drugs that emptied mental institutions in the 1950’s, allowing schizophrenia patients to lead independent lives for the first time in the US. Today, these atypical antipsychotics are approved for depression and bipolar disorder, but can also be prescribed “off-label” for anxiety, insomnia, anorexia, and ADHD.
You may have seen an ad for such products and heard the disclaimer to “call your doctor if you experience repetitive, involuntary movements as these are serious and may become permanent.” They’re talking about Tardive Dyskinesia and we should be, too. This syndrome has been bullied into the broom closet for the last 65 years and it’s time for the doors to be cast open!
Most Tardive Dyskinesia patients show symptoms in their jaw, appearing to be chewing gum or thrusting their tongue, while others bob their head or blink their eyes. My symptoms presented in my low back and extremities—I flapped my arms like a bird.
Per the National Alliance of Mental Illness (NAMI), the incidence rate of Tardive Dyskinesia is 5% for each year atypical antipsychotics are taken, and approximately 30-50% of patients who take antipsychotics for more than a decade will have some form of TD. Unfortunately, most patients taking atypicals benefit greatly from them and need them long-term.
Tardive Dyskinesia is a chronic condition for which there is no cure, only symptom management. Symptom management is hard to achieve and is highly individualized; what is effective for one patient may not be for another.
My symptoms worsened over the three years I fought with TD. I couldn’t drive or sign my own name. Friends, relatives, and strangers regarded me warily, with fear and pity in their eyes.
After nine months on the waiting list, I went to my appointment at the National Parkinson’s Foundation and was put on a medication used for Huntington’s Chorea, which reduced my involuntary movements by half. This “specialty” medication was covered by both my health insurance and also a charitable grant that covered my co-pay, which would have been hundreds of dollars each month and I would not be able to afford.
I was better, but still struggled to fall asleep at night. We tried other medications, but they gave me blackouts. I had more appointments with neurologists who specialized in movement disorders. Some just shook their heads in sympathy, wrung their hands, and said I’d never get better, while others labeled me “psychosomatic” or called me a “drug seeker.” I was beyond despondent.
Finally, I came across a search result for a clinic researching Tardive Dyskinesia! It was hundreds of miles away, but that would not deter us. When we made the trip, it was so very worth it. The doctor was kind and gave me an add-on prescription. With the combination therapy, the shakes disappeared, just like that!
That was in 2011. Treatment and awareness has improved so much since then. The flagship “first line” TD treatment is under FDA review. My triumph over TD reinforced my belief in my own strength and resilience. I no longer have those thoughts in the back of my mind saying I’m that patient that cannot be helped; I now know that everyone has hope. No matter what your challenges are, I wish to pass my faith on to you. The journey may not be easy, but there is a destination.
Tardive Dyskinesia Resources
Allison Strong went to Stanford on a volleyball scholarship and majored in journalism. She was a working on camera and voiceover actor in LA for a decade and segued to sales and copywriting for a radio station, which led to a ten-year career as an Alternative Rock Disc jockey (Phx and LA) and international music critic (Melody Maker UK, The Arizona Republic, Hits Magazine). She’s an advocate for bipolar disorder and Tardive Dyskinesia, (TD-A Medication Side Effect). She lives in Hollywood, Florida with her husband, Mike and two cats. She’s a community volunteer for Medicare’s “Take a Stand” campaign and writes for The Miami Herald, The South Florida Sun-Sentinel bphope.com. Allison is working on a centrist, candid, and even comedic E-book/Resource, “All Shook Up From My Sedatives-Next Time I’ll Read the Insert,” in hopes of directing patients to support services and difficult-to-find specialty treatment.