Why Singer Carnie Wilson Is Raising Awareness Of Tardive Dyskinesia

Hold on. Why is Carnie Wilson, the singer who co-founded the music trio Wilson Phillips, trying to bring more attention to tardive dyskinesia? After all, she doesn’t have TD herself. Well, both she and her father, Beach Boys co-founder Brian Wilson, did have their share of mental health struggles. These experiences have motivated her to become a mental health advocate and connect with others facing such struggles. And in the process she’s learned about an additional struggle that patients taking certain medications for mental health struggles can end up facing: TD.

Carnie Wilson Has Become A Mental Health Advocate

In a recent conversation, Wilson elaborated to me on her mental health journey. “I’ve always battled with low chronic depression and anxiety,” she explained. She talked about her “alcohol and drug addiction. I had to hit rock bottom to ask for help.” She also spoke about her father “a creative and a composer. He did struggle but got help, got treatment and is still here.”

You could say that through the shadows, she saw light to borrow from the name of a Wilson Phillips album. She said, “Mental health issues have sort of shaped who I am. I’ve lived with people who have struggled with mental illness, battled with people who have come out of the other side.” Wilson added, “It’s taught me compassion, helped me become an advocate myself.”

In the past, talking openly about mental health was about as taboo as mentioning the word “rotisserie” in a henhouse. Things have gotten better, though, in recent years with more and more people being more open about their mental health challenges including athletes, entertainers and other public figures. However, things haven’t become all “good vibrations” yet. “There’s still stigma, and the root of that is fear,” Wilson lamented. “People are afraid to talk about mental illness.” She talked about wanting to help people “open up about it without embarrassment and fear, without shame.”

Wilson Learned About Tardive Dyskinesia

It is through working with those with mental illness that Wilson learned about TD. “It starts with mental illness,” she explained. “TD is an involuntary movement disorder associated with certain mental health meds. They can’t help the movements because they can’t be controlled.” Wilson mentioned how this could bring additional stigma on top of the existing stigma around mental illness.

To understand what TD is, you can break down the two words that comprise the name of the condition. The first word “tardive” means delayed or late, sort of like the word “tardy.” The second word “dyskinesia” can break down into the prefix “dys,” which stands for difficult or abnormal, and “kinesia,” which refers to movements.

TD can result from taking antipsychotic (neuroleptic) medications or particular other medications. It doesn’t tend to emerge immediately after starting the medications. There is typically some kind of delay. The delay could be relatively short or even be years. But once it arrives, it typically doesn’t go away.

What Kind Of Involuntary Movements Occur In Tardive Dyskinesia

These involuntary movements can involve different parts of your body like your face, tongue, neck, trunk and limbs as described by the Cleveland Clinic website. Classic facial movements include smacking your lips, doing sucking motions, sticking your tongue out or against the inside of your cheek, grimacing, chewing, puffing out your cheeks and rapidly blinking your eyes, all in uncontrolled manners. There are also different kinds of finger movements such as moving them like you are playing the piano. The Cleveland Clinic website also lists thrusting or rocking your pelvis, walking with a duck-like gait and a general inability to remain physically still.

These movements call fall into different categories. There’s dystonia, which is a fancy medical term for twisting repetitive muscle contractions that are uncontrollable and often painful. There’s myoclonus, which is an equally fancy medical term for quick, jerking muscle movements. Then there’s buccolingual stereotypy which is an even fancier medical term for repetitive involuntary movements of the mouth, tongue and jaw moves. Finally, tics refer to brief, sudden and repetitive muscle contractions, frequently of the facial muscles.

Now, these involuntary movements can vary greatly in there severity. On the one end of the spectrum, they can be quite subtle and barely noticeable. On the other end, they can quite severe, inhibiting your ability to many standard daily activities.

What Specific Medications Can Lead To Tardive Dyskinesia

The most common causes of TD are antipsychotic medications used to treat schizophrenia and other conditions that can cause psychosis, hence the name anti-psychotics. Psychosis is a state where you’ve lost touch with reality. The risk of TD is greater with first-generation or so-called “typical” antipsychotics like trifluoperazine, chlorpromazine, luphenazine, prochlorperazine, perphenazine, thioridazine and haloperidol than second-generation or “atypical” ones.

Another medication with a higher risk of TD is metoclopramide. This medication can speed up the rate at which food exists your stomach. This can be helpful for diabetics suffering from gastroparesis, which is when your stomach emptying is delayed. By speeding up the emptying of your stomach, it can also help relieve gastroesophageal reflux disease, known as GERD or heartburn. However, the risk of TD has led to a black box warning on the packaging of metoclopramide, thus dissuading doctors from prescribing it.

Various antidepressants also bring the risk of TD. The Cleveland Clinic lists trazodone,
amitriptyline, clomipramine doxepin, fluoxetine, sertraline, phenelzine and rasagiline as possible culprits. Selegiline is a possibility too when combined with levodopa.

There are other medications associated with TD. But the occurrence of TD with them is rare. There are the anti-seizure medications carbamazepine, lamotrigine and phenytoin and the anti-malarial medications chloroquine and amodiaquine. Lithium can be a culprit, especially when combined with anti-psychotics. And so can one specific antihistamine, hydroxyzine.

It can be difficult to predict who will develop TD with these different medications. You may be at greater risk if you are older than 40 years of age, particularly over 65. Women are more likely than men to develop TD, especially after menopause. Among people taking anti-psychotics medication, those with bipolar disorder seem to be at greater risk for TD.

What Treatments Are Available for TD

Seemingly the most obvious treatment for TD is stopping the medication that’s causing it. This may or may not lead to improvement in symptoms. Again, once TD starts, it doesn’t completely go away.

There are medications available to help reduce the symptoms. These are vesicular monoamine transporter-2 inhibitors. Since this is not the easiest set of words to say, you can also just call them VMAT2 inhibitors. To understand how VMAT2 inhibitors work, you’ve got to understand how VMAT2 works.

For a body movement to occur, signals have to travel down the chain of nerve cells from the brain down to relevant muscle. One nerve cell transmits these signals to next nerve cell by releasing chemical messengers called neurotransmitters that then cross the small gap between the nerve cells called a synapse to then stimulate the next nerve cell. The following illustration shows this:

VMAT-2 is a protein located on the vesicles that help store and release such neurotramitters like dopamine, norepinephrine, serotonin and histamine. By blocking VMAT2, VMAT2 inhibitors can decrease the amount of neurotransmitter available. This in turn can reduces unwanted body movements like those seen with Huntington Disease (HD) and TD. So just think HD TD with VMAT2 inhibitors. The first VMAT-2 inhibitor, tetrabenazine, was approved in 2008 for Huntington’s chorea and has been used off-label for TD. Two other VMAT-2 inhibitor, deutetrabenazine and valbenazine got FDA approval in 2017.

Wilson has partnered with Neurocrine Biosciences, Inc., the makers of Ingrezza, a brand name for valbenazine, to launch Connecting with Carnie. This is a campaign to bring more awareness of TD and its available treatments with a focus on not surprisingly valbenazine. It a natural for a maker of treatment for TD to want to bring more awareness to TD.

At the same time, it makes sense to make efforts for more people to understand TD and know options for treatment. Ask many people about TD, and they may think you are referring to something else like touchdown. TD is not exactly a household word. Yet, many households may have people suffering in silence from TD.

Studies have suggested that at least 20% of all patients treated with first-generation neuroleptics have TD. The prevalence of TD for the other aforementioned medications may range from 1% to 10%. Publications in the Journal of Clinical Psychiatry and Neurotherapeutics have suggested that at least 800,000 people in the U.S. are currently affected by TD with somewhere around 60% of those with TD remaining undiagnosed. Those aren’t insignificant number.

And people seeing those with TD can be, surprise, surprise, rather judgy, especially if they don’t know what TD is. This can leave those with TD more in the shadows than the light. A recent Harris poll conducted on behalf of Neurocrine Biosciences found that 86% of all patients and 87% of those with mild or moderate TD felt that their movements made them feel judged or stared at and 55% had avoided others and going out in public. suggested that this number exceeds 800,000 adults

“Raising awareness of TD can help people become more accepting of TD,” said Wilson. “There is treatment and there is hope.” In other words, bringing more attention to the condition and treatment options could be a “Release Me” moment from the stigma surrounding those with TD.