I recently overheard nurses in the nurses’ station at my work discussing how awful akathisia must feel and how it was affecting a patient of ours. I joined the conversation and shared that it was awful. I’ve been lucky to not have experienced much physical pain in my life and given that, I can confidently say that akathisia was the worst thing I’ve ever felt. It’s a side effect of some medications, including antipsychotics. Here’s a description of what akathisia is:
Everyone’s experience with it is different, but I was on Latuda at the time. I was trying it while withdrawing from Seroquel, another antipsychotic which was too sedating for me. I wanted something that would help in a similar way while not making it so hard to get up in the morning and function well during the day. I was also told that Latuda wouldn’t contribute to weight gain. I had engaged in unhealthy behaviors in the past to lose weight as a result of the weight gain that came with Seroquel.
I can’t remember how soon it happened, but after taking Latuda, I recognized concerning signs. I could not sit still at all. I remember going to the movies with my friends and ducking out after 5 minutes because I had to get out of my chair. I then paced in the lobby of the movie theater while my friends finished watching the film. I also went to a concert I’d been looking forward to for a long time. Again, I had trouble sitting still. I felt like I had to force myself to sit there since it was a concert I really wanted to see. I also didn’t want to keep getting up and disrupting other people in my row, but I was crawling out of my skin.
On top of this, I paced my apartment at night and lost sleep, which is something that can be really concerning when you have bipolar disorder. I couldn’t lie down and stay there for very long. My mother had Parkinson’s and I wondered if I had something akin to a movement disorder. While she might freeze in place, I had to move.
I really gave the medication a shot and was on it for six months. My husband initially liked it because it wasn’t so sedating, and he felt he had me “back” in a way. I was also able to lose weight. But I became frustrated one day and said to him, “I know it seems like I’m doing well, but you don’t know how it feels inside. It’s awful. I can’t do this anymore.” He supported my decision to get off of Latuda.
My nurse practitioner initially attributed my akathisia to coming down from Seroquel until I told her I didn’t take Latuda within the last 48 hours and the akathisia dissipated. I knew it was the Latuda and I’m glad I advocated for myself. That’s when I was put on lithium, a medication I’m still taking that really helps me.
