Move Over Movement Disorder

Have you ever felt that you were the patient treatment wouldn’t help? After three years of searching for relief from Tardive Dyskinesia 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 5am, 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. 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 sort in an unnatural position. It can be truly disturbing and disabling. 

Children seem to have different symptoms. Information on that is described in IBPF’s free downloadable book, Healthy Living With Bipolar Disorder (page 31 under Extrapyramidal Side Effects). 

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 get 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 them long-term. 

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

Eventually, 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 am able to have this expensive medication covered by a foundation that provides support for people with chronic illness called the Caring Voices Coalition. 

With this medication I was better but still struggling. I went to fifteen doctor’s appointments and had three hospital visits. The ER docs just wrung their hands, shook their heads and sent me up to psych. 

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 shakes 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. 

For information on finding a specialist visit 

Read the rest of Allison’s posts for IBPF here. Allison has also written for NAMI Not Alone and has personal blogs on WordPress and Tumblr.You can find her on Facebook where she has a closed group to share coping strategies for living with bipolar disorder. 

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