Lithium—Why I Shake (My Secret Life #2)

I’ve been on lithium for 16 years. For the past two years my hands quiver and my body noticeably shakes. My tremor was subtle at first, but now it can be impossible to hide. This episode is about how a drug that is helping my mood stay stable also makes my body feel out of control.

Lithium is now believed to be the best—even the gold standard of medication—for bipolar disorder, and it has been a good drug for me, keeping depression and mania at bay. Tremor is a known side effect, and my hands shake fast like hummingbirds.

Today, public interactions can make my entire body shake, which is unlike my younger self. This episode is about identity and grief, and how a body can quietly announce mental illness to the world. Sometimes the dark side of a medication isn’t headline-worthy. Sometimes it’s private, daily, and challenges who we believe ourselves to be.

Transcript

Support, Safety, And Trigger Notice

Janine 0:00

We are supported by the Soar with Tapping app. Tapping is a powerful science-backed tool that calms your nervous system. I've been using Sore with Tapping nightly for insomnia, and I am sleeping well. Visit the Sore with Tapping app at Apple and Google Play Stores to start your journey towards freedom right from your phone. Welcome to Bipolar She. I'm your host, Janine Noel. The content of the show may include suicide or suicidal ideation. If you're ever in need of immediate support, please dial 988-A Suicide and Crisis Lifeline. All right. So today I am talking about lithium and my relationship with it and why it's been a tough drug for me, but ultimately probably the only drug for me right now and going forward. So I have always been shaky, and I noticed it really for the first time. I was on a cruise with high school friends. We had just graduated, and there was a dance going on, and a boy asked me to dance, and I got so nervous. I was shaking, and he asked me, Why are you shaking? And I said, Oh, um, my thyroid medication is off, which was a pretty good answer because that can happen with thyroid medication. But I think I just was deep down, like just so nervous about dancing with a boy on a cruise with nowhere to run to. But going forward, I alternated a bit. I'd be very confident, and then I'd have these times where I was kind of more withdrawn and nervous. I actually continued on with this acting dream in college and after. And those auditions were great. I had no problem at all, really steady hand. And when I was acting in San Francisco in 2008, I was assaulted. And when I went back to do auditions in rooms full of men all staring at me, my little hand holding the script would just start shaking like violently back and forth. I was so nervous. So from then on, I had to be medicated and I used propranolol. I cannot say that correct correctly, but I don't think anyone can say it correctly. So I'd have to take that medication so I could go and audition. And these were not even big auditions. These were like to be in the pottery barn instructional manual and, you know, biotech companies. These were not like big deals, but for me, I would tremor, I would shake, I would take that medication. It would help me to some extent. And then one day I just realized this is ridiculous. Like I don't really even have a career, but I'm medicating to get up, to stand in front of people, and to feel okay, looked at. So about that time I stopped acting. I had a new therapist and he put me on lithium. And it was actually a really good drug. It like boosted my mood. I felt more stable. It felt like it was working great. And that's about 2009 until today that I've been on lithium. But the last couple years, I've been super shaky on lithium. I'll go to a party and I can't even hold a drink and take it up to my mouth without my hand shaking so much. So I can't really eat sometimes at public functions. I have trouble. You know, sometimes like when I stand or I get up from a chair in a public place, my whole body will quiver to some extent. And it got really frustrating because it was just screwing with my morning rituals. Like I couldn't put my contacts in in the morning, couldn't put on any jewelry, I couldn't type. It would take a couple hours for this tremor to go away. So that's sort of what I'd just been managing. And then sometimes it arrives and like violent shaking. And again, in a public situation, I had to introduce a famous writer who had just got an award and stand up. It was a small crowd, but I started shaking so violently. I had to hold on to a bookshelf and like steady myself. I almost ran out of there. It was so humiliating. It was so painful. Like it was, you know, I was making the audience uncomfortable because of this huge reaction I was having. And that happened before when I was reading my work in grad school. It was just a shaky mess. So when I had a talk about bipolar she for the first time out there in the real world, I took that properanolol again, took a ton of it. And I had a super steady hand. And I walked on stage, and honestly, I have no idea what I said. So that probably wasn't the best move. But when I talked to my doctor last week, he said, try the properanol in the morning. So I took the 10 milligrams in the morning. And instead of feeling shaky, I just felt exhausted. And so I went back into bed and I'd get up, try to do something, go back into bed. And so this is a beta blocker. And what it does, it lowers your heart rate. So I was just having trouble staying, staying awake on it. And then I had a meeting and I was really grumpy and like my inhibitions were down. And I just said things I would probably not have said if I hadn't been on that medication. But I felt like shit. And I felt like I lost a whole day of my life seeing if this drug was going to work. So the next day, my plan was to take half of it and think, oh, maybe, maybe my life will just get a little bit more perfect if half of this medication works. And the same thing happened. I was up and down, bobbly. It was just the worst feeling. And then I said, okay, well, maybe if I take a quarter of this medication, things are going to get better. And I did that in the same thing. I was up and down and uh really, really out of it. Now I'm kind of laughing at it, but at the same time, it really does rob days from you. And it's so frustrating when you're just trying to make your life a little bit better. And that's how I look at all these medication changes and sort of this thing, this like this yearning that if only this changed, I would feel more normal, I would feel closer to myself. Can we just try something? And it never really works. And then I'll have a family member call and they'll say, So, what are you up to? What did what have you been doing? And those are like the dreaded words for me because I can't say, Oh, I'm trying a new drug. My tremor is so intense that even on Zoom meetings, my hands are shaking as I have to like contribute something into the chat in a Zoom meeting. I can't just I can't even type. Oh my gosh. And so it's I can't really tell anyone about it. I know my mom will say, well, your lithium level is too high. But when we tried to adjust it, I've have felt some depression. And so, yeah, it just boils down to for me, like just this desperate desire to want a normal day, to be able to put on a piece of jewelry and start typing in the morning. But lithium is a good drug, and I don't, this is not like an expose on 60 minutes about how this is really a dark side of the drug. This is just a very personal side of the drug. At the same time, this drug, lithium, is very solid. It's known to help people prevent their manic episodes and the severity of them. It really helps reduce the risk of suicide, like 60 to 80 percent. It is neuroprotective, so it's it's helping our little brain cells along. And it's also anti-inflammatory. It's a naturally occurring salt. In the good old days of like the Romans, they would seek out these lithium salt, naturally occurring springs, and they would go sit in them if they had issues going on. And some of these still exist, but they don't call them lithium springs, I think, because of the medication. But this this tremor, it it's just, I can't stop it. And the hard part is I don't know like who am I now that I have this. I used to be someone that could stand up in front of a big group of people and not worry at all. But now I stand up and it's so obvious that I have a major underlying problem here. It's so obvious that it's mental illness. And I can't hide it anymore. It's coming out, you know, after being on this drug since 2009, I have that's a longtime use of a medicine. And that's not, it's not me. It's not the woman that I was at some time. And so, yeah, I just it's hard to know people are seeing this on you and that they can make a judgment. At first, I thought only people with on antipsychotics would have a shake, a tremor, but now I'm learning the effects of lithium. And it's also screwing with my kidney values. Lithium can lead to kidney failure. And so now I have to really watch that with my psychiatrist. So that's not a good side of lithium either. I may not be able to take the drug forever if it continues to like screw with my kidneys. But mostly I just am, yeah, I want to get back to myself. And when I see like a little moment to do that, to try a new medication, and to have it fail, that just feels like the round and round of my life dealing with mental illness. So that's where I am. It's a good drug, it's a bad drug, it's my drug. All right. Hi, it's Janine. Bicolor Sheet is currently an independent podcast. I'm its writer, producer, and host. Please consider this podcast as a work of advocacy, getting important stories to those that need them. As we gather ideas how to keep the show running financially, please do engage with the podcast wherever you find it. Offer up some stars and some likes. You can visit us at bipolarshe.com or at bipolar shepod on Instagram. And thank you as always for your support.