Tardive Dyskinesia: How I Live With It (and Why I'm Not Willing to Live Without It)

I have been on antipsychotic medication for the past 25 years. Some have been newer, atypical antipsychotics, some are older, typical ones. Due to this, I have started to experience some symptoms of tardive dyskinesia (TD).

Tardive dyskinesia is a disorder or a side effect of some of the older antipsychotic medications where you develop abnormal movements that are involuntary. Even though I've been on this medication for about 12–14 years, I have a pretty mild case of the disorder, and I manage it without intervention at this time.

What tardive dyskinesia looks like for me

I have a lot of abnormal tongue movements. I'm constantly scanning the inside of my mouth, my teeth, and my gums. I constantly bite the inside of my cheek and will chew on the skin. I know that sounds gross, but I need to have something to do with my mouth. I also bite my nails and pick at my cuticles.

I will smack my lips sometimes and frequently apply lip balm to keep from getting too dry. The worst part is biting the inside of my mouth. I cannot control this movement and afterwards, my tongue will constantly scan the areas that I have bitten. I cannot control this either.

I make weird motions with my mouth and lips sometimes, and even though I can't really control it, I'm super aware of it and try not to do it around others or in public places, even though sometimes I can't help it. It's really bothersome and those who know me have accepted these strange "quirks" about my presentation.

Involuntary movements

I also get shoulder muscle twitches sometimes. I will shrug my shoulders involuntarily really quickly, but usually one at a time, not both together.

Sometimes, I will have other muscle contractions in other parts of my body that I have no control over. This usually happens when I'm calm and laying down (like getting ready for sleep or before getting up in the morning). This is a bit more concerning because sometimes it feels like there is a current of electricity going through my muscles.

Tardive dyskinesia can cause all kinds of involuntary movements, not just in your face or upper body, even though that's where a lot of mine center.

Treating my tardive dyskinesia: more side effects

About 3-4 years ago, when I was diagnosed with tardive dyskinesia, I started treatment with an FDA approved medication that had just come out for the treatment of it. Since it was new to the market and tardive dyskinesia was a fairly rare disease, I had to jump though many hoops to get this medication.

I started the medication and had great success with the remission of my symptoms, however, the side effects of the medication made me too tired to successfully work or do my daily activities. I was falling asleep in the daytime and not able to drive or concentrate.

That was only one medication, and I don't know if advancements have been made in side effects since then, but I had to stop the medication because I couldn't stay awake and function at work. It was really unfortunate because the meds did help the involuntary movements. But that's the trade off I had to make. Either function with the symptoms or be dysfunctional with the meds. So, I chose to just live with what I had.

Struggling with schizophrenia meds' side effects

I still struggle with these side effects of tardive dyskinesia. Of course they bother me, but I cannot imagine the other alternatives.

My mental health medication is the first one that I have found in my 25 years of taking meds that has worked to control my hallucinations and delusions and psychotic thoughts. I'm willing to take the chance of having my tardive dyskinesia worsen and remaining stable on this medication.

It's not a nice trade-off to think about, but until my tardive dyskinesia gets worse, I'm willing to live with it if it means my wellness and stability. I know that for some people, their symptoms of tardive dyskinesia are much more troubling than mine and they need to seek alternatives.

Exploring tardive dyskinesia treatment options

The best thing I can say would be to talk to your provider about what's going on, have your provider conduct a thorough Abnormal Involuntary Movement Scale (AIMS) test (a test that measures involuntary movements by looking at different body exercises), and exploring treatment options together.

I live life with tardive dyskinesia, and at this point, it’s manageable. However, it's good to know that there are options out there for treatment.