Destabilized by a Med Change | How Lowering Lithium Derailed My Life

In this solo episode of Bipolar She, I talk about how a lithium dose reduction triggered a bipolar crisis and led to brain fog, confusion, sleep disruption, exhaustion, and intrusive suicidal thoughts--thoughts about suicide that were clearly not my own--but still deeply disturbing. What began as a small psychiatric medication change turned into nearly a month of instability, pulling me away from life and even away from the podcast. Ugh!

I had started this adjustment in my lithium dose because of my tremor (see episode Lithium: Why I Shake) A med adjustment can often have so much hope attached to it. Will I feel more like myself? Will life be richer and fuller? Will my senses work better and will I even excel more athletically? 

But for my bipolar disorder 1 disorder, even a small lithium taper (a form of medication change), sent me on a roller coaster of a month this March--and potentially a life threatening ride. Ultimately, I was met with defeat. I rarely have any luck during a change, but I still take the risk, with the hope of having a better life. This episode is about bipolar disorder, lithium, suicidal thoughts, psychiatric medication tapering, and how destabilizing even a small med change can be.

Transcript

Lowering Lithium For A Tremor

Brain Fog And A Night Terror

Intrusive Thoughts And Feeling Alone

Stopping The Taper And Sharing Lessons

Medication Changes Can Be Dangerous

The Lure Of Feeling More Alive

Recovery Takes Time Without A Neat Ending

Janine 0:04

Welcome to Bipolar She. I'm your host, Janine Noel. The content of this show may include suicide or suicidal ideation. If you're ever in need of immediate support, please dial 988 a suicide and crisis lifeline. Today's episode is in honor of World Bipolar Day, but I'm a couple days late because I was having a bipolar crisis, probably the biggest one since I started this podcast. But I I want to talk about it because I think again, it's just one of those things that goes on behind the scenes as we try and be look and appear to be normal people. So about a week ago, this thought came into my mind and it said, I want to die. But I didn't want to die. My dog was sleeping on the sofa, and in the morning I was gonna make pancakes. I felt perfectly normal, but this thought, I want to die, was just sitting with me. And I didn't know why that was coming up or why that happened. I do know why it happened now, and I was suspecting it then, but I had uh lowered my lithium dose. Um, I spoke about this a few podcasts back about how my lithium dose is so it's oh shit, I'm wearing this. Fm take that off. All right, let's do this again. Welcome to Bipolar She. I'm your host, Janine Noel. The content of this show does include suicide and suicidal ideation. If you're ever in need of immediate support, please dial 988 a suicide and crisis lifeline. This episode is in honor of World Bipolar Day, but that was actually yesterday as a good bipolar representative. I'm a few days late, but I have a really big excuse because I had, I think, one of the biggest bipolar crises I've ever had. Well, in the past two years while I've done this podcast. And it was bad. I found myself lying in bed, somewhat awake, thinking I want to die, but also knowing I didn't want to die. This intrusive thought was in my head randomly. I didn't want to die. My dog is sleeping on the sofa, and the morning I was gonna make pancakes for breakfast. There was no reason that this, you know, settled into my head. And it took a little unwinding for me to figure out what was going on. A couple episodes ago, I talked about lithium and how it's given me a pretty bad tremor. It's mostly in my hands, but it's in my body too at times, like it's just rumbling through me. It's been noticeable at work, people have seen it. Uh, so now I'm feeling quite nervous about it. And I was showing my doctor this uh maybe two and a half weeks ago, and we were looking at my hands, and he was he agreed it had gotten pretty strong. So we talked about decreasing my lithium dose down by 150 milligrams, and I was so hopeful. And I think with any med change or tapering, it just gets exciting because your life might just be a tiny bit better. I knew to watch out for depression because I've tried to, you know, lower my dose on lithium before and it made me depressed. But he said, you know, you never know, it's been a couple years. Why don't we try it? So we started to do it, and you know, five days in, I'm actually feeling pretty good. I'm actually feeling the world just a little bit more. Like my senses are alive, I'm smelling things better, I feel the muscles and my body working better. I also feel like I'm running faster and it feels more invigorating. And so this all feels great. I'm like, this is going, it's going pretty good. All right, so I'm gonna hang with it. And then about after those first five days, I started getting confused, just brain fog confused. You know, walking into the kitchen when you want to be in your closet, putting a plate in the oven instead of the dishwasher, that type of confusion. I'm like, oh, this is not so good. I wonder if I can hang with this just a little bit longer. So I let that confusion go on for a week. I actually went to work. I can't even believe I went to work. That confused. And then I had a night where I had been worried about my dog. My dog had been sick at the vet. I was nervous. I got up in the middle of the night, opened my back door, and started screaming for my dog because I thought I had left her out before I went to bed. It was like a waking dream, like a night terror. I got up moving, went to my door, and yelled. Now that's highly problematic for someone like me who is attached to a house, and my landlord's window is right where I was yelling for my dog. And then I turned around and she's there in my house. And I don't know how that happened. I was stressed about her, but I'd never woken up moving in a dream before. So I went, uh, this is not so good. I don't know if it's part of this lithium detox. It's really not good, but I'm gonna keep going with it because I think there's something out there. I think my life can be a little bit better. So the next night I said, well, I'll just tape the doors shut. And so I went and got, I just had packing tape. So I wrapped these shutters like with packing tape, and I did it to the front door, and I figured that like if I started clawing at this in the middle of the night, it would wake me up because tact the tactile, you know, the touch would be different. So I wrapped myself in my house and nothing happened except as I was falling asleep, this whisper of a voice came to me saying, I want to die. And I really was confused. Could that be me? Is that like in my deepest in my soul? Is that really where I'm at? Is that what I operate from? This this death wish is is maybe, I don't know, maybe that is me. And then I just you push through life, but I really somehow that's me or my mantra. It thoroughly confused me. So I went and I'm like, great, I'm having these waking nights. And so I went and I put all my meds like up really high in my house, hoping that if I got up and decided that I wanted to die, that I would, you know, see my dog and figure it out by the time I got my medication. So that wasn't great, but I didn't want to really want to tell anybody about it. I sort of wished I had someone to call, you know, at 2, 3 in the morning. And then I just felt like there's no one. There's no one out there I could call. And when I told a friend about this, she's like, you know, you always talk about that suicide and crisis lifeline. You should have, wouldn't you call that? And I said to her, I had not even thought about that. I've said that in 50 episodes. Here's a phone number for you to call when you're in need. And I didn't even think about it. I just thought, no, I am alone in this, and my doors are taped shut, and this is the best I can do. And so it did happen on another night. But I kept pushing through, like, okay, it's gonna get better. I'm still feeling the world a little bit more, I still have the fogginess, but I can do this. And then I went to school, I was um teaching at a school, and midway at noon, I was like, there is no way I can do this anymore. I'm so foggy headed, I don't know what's going on. I have got to stop this taper. This is a huge failure. And so I wrote to my doctor and told him what happened. And I could have caught this earlier. I think that's kind of the, I guess, important part. If I could have been looking out for myself a little bit more, but it's just like completely this like little carrot. Oh, you'll run faster, your muscles will feel stronger, you'll be more fully you, that is always kind of hanging out there. And I've done other med changes with a very, very similar result. So this is a little bit of a um public service announcement or after school special that I'm gonna say with um a serious voice because this discussion of med changes um is is serious and life-threatening. And the the idea of a med change, it can be a lot of different things. Sometimes you're starting a medicine and sometimes they increase your dose gradually, so that's a change, and maybe you've stopped a medication, or maybe you're going to taper down one medication and then start another. Tapering means lowering that dose gradually. Um, for me, I use the term med change, it really was just a lowering of my dose. A just a 150 milligram lowering of my dose led me to some crazy thinking. And the thinking, I don't know if I didn't trust myself or know myself better. I mean, that could have settled in. And so it didn't. I'm at a place where I knew to say, no, that's bullshit, that's not real. But I don't think I've always been at a place where I could do that. So these changes are scary. Um, if you want any information about it, like NAMI is a great resource. Uh, it really depends like what class of drugs you're working with. If you're discontinuing a benzodiazepine, you cannot stop it abruptly. That that can lead to seizures and actually be life-threatening. Um, you know, a lot of med changes, med changes are done in psychiatric facilities, and that doesn't mean they're successful, but at least there's some attempt to keep you safe from harm while they're trying them. And for the most part, these are outpatient, you know, clinical um lowerings or whatever. Uh, and you have to kind of self-monitor and be open to talking to your provider about any symptoms of agitation, worsening thinking. Uh, in terms of like actual studies, the only ones I could find on lithium were about taking you entirely off lithium, and that you had to do that gradually, or it increased the risk of a manic episode. And there's just not a lot of data out there on these smaller decreases or increases. Um, so so there's just so much we don't know, and a lot of it is anecdotal, and it's just important when you hear the word medication change, if you if you are um struggling with depression or bipolar, to really take it seriously because they can be completely destabilizing and dangerous, and you need to work with your physician. And it's so hard to say, I'm calling it, I'm out, I'm out of this game. Like it's so hard to do that. It happened again. I remember a couple times, oh man, there was, I think, this drug Saphris that I tried to get on, and it really was like this promise of a future. I would be off Cerequel, you know, you'd lose weight, and that's always a big one. People just want to lose weight. So they like put their mental health and life at risk just to try and lose weight. So I've kind of learned that that's not important, but there is just this feeling there's a better world out there, there's a world where I'm I'm more dynamic, I'm more alive. I say and do what I think. And I noticed this. I was in like a Zoom meeting, and I was kind of snarky and I piped up. And I don't normally do that. And on this, on this podcast, I'm so low-key, I'm just everyone says I'm so balanced and have just a nice, you know, sound to my voice. I'm very calming. But at the same time, I can be sparky and snarky, and I notice myself doing that more. And I actually thought, hey, that might be good, that might be closer to the real me. But I couldn't hang out there, I couldn't get close. If I had thoughts of dying, no matter how subtle they were, it was time to stop that drug trial. And I probably could have shut it down a few days before. I always try to wrap up these episodes in a way because you know, we like a beginning, a middle, an end. So here's what happened to me, here's what the data says, and what you know. And then here's a little wrap-up, but I don't have that wrap-up. In fact, it took me like for at least 10 more days to increase my dose, to start to feel more like myself through all of this. I've been taking a nap at 3 p.m. I'm exhausted, my brain is exhausted, I'm not sleeping well, but I'm on these psych meds, so I don't know I'm sleeping well. So it's just not totally over. And that's like a month of my life taken by this just desperate need to want to be better.