Challenging News and Moments of Hope
After getting the news in August of 2018 that my dad had advanced stage esophageal cancer, my whole world was turned upside down. However, as we headed into the new year, things were looking up. Dad’s latest PET scan had shown that his FOLFOX chemotherapy was working. There was no sign of cancer! 2019 was off to a great start!
Unfortunately, our elation was short-lived. Soon enough his pain was back with a vengeance. The cancer had not only returned, but it had spread to his spine. At that point, I knew he wasn’t long for this world, so I got him into a hospice program. When the hospice nurse arrived to do his intake, she told us that, based on her experience, the amount of pain Dad was experiencing meant that he was already near the end. She was right. He passed away on July 27, 2019.
Navigating Loss and Grief
Next to Sam, Dad was my person. I didn’t understand how his large, jolly spirit could just vaporize before my eyes. I could not fathom a world without him; it just didn’t seem possible. But I did my best to pick up the pieces and move on in this strange and empty mortal realm. After all, Dad had lost his own father when he was only 28 years old. He was somehow able to navigate his grief way back then, and I would do the same.
Before he died, I couldn’t fathom living in a world where he didn’t exist, but here I was. Life went on, and so did I. We went on our annual August camping trip, and I once again started to tend to the community garden that Sam and I were managing. Even though I was just going through the motions at that point, I felt I was managing my loss pretty well. After several weeks, I realized that I could live in a world where he no longer existed; it was just very different, but I knew I would be okay.
Impact of Trauma: A Car Collision
September 23 rolled around, and it was a beautiful day—warm and sunny. Our kitty, Phoenix, had a vet appointment that afternoon. Sam drove, while I sat in the front passenger seat with Phoenix on my lap. Sam had just made a left onto the highway. We were happily chatting as Sam accelerated to 55 when just up ahead to our left, a car came shooting out directly in front of us from a side road.
Sam stepped down forcefully on the brakes to no avail. There just hadn’t been time; the car was right there. I remember a lot of screaming and a rush of warmth from my deployed airbag. Having taken the brunt of that airbag, I was sure Phoenix was dead. I was afraid to look, but I did. Somehow she was just fine—scared but alive and moving. Later on, the vet attributed her survival to her flexible pet carrier. She had somehow come out unscathed having only bit her little tongue.
Sam and I were a different story and, to this day, we are both still damaged from the physical and mental effects of that collision. Perhaps someday I will write more about the aftermath, but for now suffice it to say it has been a long, arduous, and frustrating journey. The bottom line, however, is we are both alive, and for that I am beyond grateful. And as long as we are alive, the future is full of possibilities.
Confronting a Global Pandemic
Thankfully 2019 soon became a memory, and we welcomed 2020. I was ready to put the previous year behind me and looked forward to what the new year had in store for us. However, it wasn’t long before we started hearing about a new respiratory illness plaguing the Chinese population. Luckily, I took it seriously pretty early on and bought plenty of toilet paper prior to shelves being wiped clean.
Since Sam and I are both immunosuppressed due to taking medications for our autoimmune diseases, I wanted to be stocked up and locked up before the newly-named Covid-19 hit Michigan. By March 10, we were prepared to hunker down for the long haul. However, fate had other plans for us. At some point, while we were preparing for our self-imposed quarantine, Sam had contracted Covid. She was sick for months. I don’t think she has ever fully recovered from that first bout of Covid.
Covid took its toll on our nation and our family was no exception. The social isolation due to lockdown was rough. The fear and hyper vigilance also took a lot out of me. To make matters worse, I managed to pile on 30 pounds. By June, the trauma I had endured over the past year became too much. My depression, which had been well controlled for several years, reared its ugly head. It was time to see a doctor.
Mental Health Struggles and Seeking Help
I had my appointment on June 8th, and I was prescribed Abilify. Abilify is a second-generation (or “atypical”) antipsychotic used to treat bipolar disorder and schizophrenia. However, as in my case, it can be used in patients with depressive disorder when antidepressants alone aren’t cutting it. Luckily, the Abilify started working immediately. I just had to incrementally increase my dose in order to get where I needed to be. My sweet spot was 10 mg. It was a miracle drug for me, and I didn’t even suffer any side effects.
In November 2022, I had been successfully taking Abilify for two-and-a-half years. I was thankful for that because things in my personal life got rough really quick. But even my beloved Abilify was no match for the increasing anxiety I was dealing with due to an intense situation involving extended family. The anxiety was so bad that I was constantly making sucking motions with my mouth—or so I thought it was the anxiety. I started taking Buspar and thankfully the sucking became infrequent rather than constant.
Around this time, I noticed myself repeatedly puckering my lips in the mirror. I honestly didn’t think much of it. I just figured it was a new little quirk of mine that I chalked up to the anxiety. Kinda weird, but okay. I just hoped I wasn’t doing it in public.
Unveiling Tardive Dyskinesia Signs
Throughout 2023, I successfully managed my anxiety with Buspar and by cutting ties with toxic family members. As always, the year flew by and soon it was already December. A whole year had passed from when my anxiety was at its peak. I reflected on that, thankful to have finally managed getting to a better place. Christmas 2022 had been a dismal affair, and I was happy to be enjoying it again in 2023.
Sam was feeling festive too, and one day in early December, she decided to make nut-filled crescent cookies. Since they are a lot of work, I came along for the ride. We sat at the table performing our respective tasks; Sam rolled out the dough, while I filled each dough round with the nut mixture. I noticed Sam looking at me strangely, and I asked her why. She said that she had been recently noticing me making certain repeated mouth movements. She was concerned that I may have developed tardive dyskinesia—a condition she had become familiar with in the bipolar support communities she frequented.
Tardive dyskinesia is a delayed-onset movement disorder caused by long term use of certain medications, including antipsychotics like Abilify. This disorder causes involuntary facial and/or body movements such as lip-smacking, tongue thrusting and rapid blinking. Generally the treatment for TD is stopping or switching the problem medication although, for some people, the symptoms of TD are irreversible. While there are also two newer medications available to treat TD—Austedo and Ingrezza—these medications carry the risk of their own side effects.
Overwhelmed by Uncertain Future
When Sam told me she was concerned I may have tardive dyskinesia, I was floored. I knew of TD from Austedo commercials, and the thought that I could have it was overwhelming to me. Also, the idea of ceasing my beloved Abilify caused immediate panic, and I burst out in tears. My future was suddenly a huge question mark.
First of all, my mental wellbeing was the best it had been in years, and I could not fathom being okay without Abilify. Secondly, I was afraid of experiencing severe withdrawal symptoms from weaning off a psych med. At the same time, I was terrified of what my future would look like if I didn’t stop this medication. I told Sam that I needed time to sit with this new knowledge, and that was the end of the discussion.
In the following weeks, I did everything possible to convince myself that I didn’t have TD. I told Sam that I didn’t think it was TD because, when I caught myself in the midst of a tic, I could stop it. I, myself, actually bought it for a few weeks until I had to admit to myself that my condition was getting worse.
I was constantly doing things with my mouth and tongue which led to painful sore spots all over my tongue. I would make a movement with my mouth that Sam compared to someone sucking on a hard candy. I would randomly clack my teeth together. Sometimes I would grit my teeth in the midst of talking. Other times I would grimace. Some days I would even drool. I’m sure there’s more that I’m not recalling, but suffice it to say, I was finally coming out of my state of denial.
Medication Dilemma: Choices and Risks
I finally told Sam that it was time to make a doctor appointment, and being the phenomenal person she is, she volunteered to go with me. Last Friday, I had an appointment with my psychiatric nurse practitioner. She gave me two choices: stay on Abilify, while adding in Austedo or Ingrezza, or begin tapering off the Abilify. I chose the latter for two reasons. First, the week prior, I was told I have a tremor, and I have a sneaking suspicion that the Abilify is to blame (this story is to be continued). Secondly, Austedo and Ingrezza have their own host of side effects to consider, and I really wasn’t interested in subjecting myself to them.
The risk of developing TD on second-generation (atypical) antipsychotics is supposed to be much lower than their first-generation (typical) antipsychotic counterparts, but the internet is full of circumstantial evidence to the contrary. Plenty of patients are developing tardive dyskinesia from these medications.
Abilify can also cause another movement disorder called “akathisia,” which causes extreme restlessness, which I also experience. While I consider my akathisia to be more mild, it can be so severe in some patients that suicide seems the only way out.
Additionally, Abilify can lead to acute dystonia. Patients with dystonia suffer from involuntary muscle contractions. The movements involved are often repetitive and might include eye spasms or blinking, twisting the head, protruding tongue, and an extended neck just to name a few.
In rarer cases, Abilify can also cause symptoms that mimic Parkinson’s disease (which is why I suspect my tremors may be related to my Abilify usage). These movement disorders are known as extrapyramidal symptoms (EPS). If you are taking Abilify or any other antipsychotic, and you notice any of these symptoms, see your doctor ASAP.
Reflecting on Medication Experience
I do not want to scare anyone away from Abilify. Abilify was a life-changing medication for me, and many other folks successfully take it without issue. Perhaps I developed TD because I was at a greater risk of doing so as a post-menopausal female with a history of traumatic brain injury. Perhaps I was just unlucky. Whatever the reason was, I don’t regret having taken Abilify. It was because of this medication that I was able to thrive again after three consecutive traumatic events. I just believe that people should be aware of the risks involved.
After all, forewarned is forearmed. Had I known about these extrapyramidal symptoms from the beginning, I could have recognized them in myself over a year ago—before the symptoms became more severe. Unfortunately, due to my ignorance, I was totally unaware that I was exhibiting signs of TD, and so the disorder was able to progress. And because I have just now started tapering off the drug, it is too soon to determine if my symptoms are reversible. While I am hopeful, I am preparing myself for the worst.
Advocacy for Better Patient Information
I really wish healthcare providers were better at informing patients of the possible risks involved when prescribing a new medication. I’m not even mad though. I feel like most practitioners outside of psychiatry do not realize the risk of experiencing EPS in patients on second-generation antipsychotics is greater than they are led to believe by the current literature. My own prescriber was in family medicine. She’s seriously brilliant, but she can’t know everything.
I am not trying to blame and shame anyone. I’m just frustrated. I hate to know that there are others out there like me who are ignoring little “quirks” because they don’t know any better. All I can do is share my experience and hope that others see it. I also implore each of you to advocate for your health and seek comprehensive information before starting or continuing a medication. Furthermore , if you know a loved one who is taking one of these medications, perhaps you can share this information with them. If I can help one person recognize extrapyramidal symptoms early on, I think it would give a bit of meaning to my suffering.