Back in November, I lamented about not being able to find much writing out there that really portrays what can go on in someone’s head while they are in the middle of a psychotic episode. In the past few weeks, two such books sorta fell into my lap, so I want to mention them!
My spouse picked up a book called Mental: Lithium, Love, and Losing My Mind from the library last weekend. They pointed it out to me, like, eh? You’ll want to read this! This weekend, I was super sick, and I binge read it in 2 days, while trying to stay warm on the couch. It was compelling for so many different reasons, one major one being that I could relate to so much of it. The author, Jaime Lowe, was also hospitalized for a good chunk of her senior year of high school, and she also just took the pills without much reflection for years and years. Like, it’s something that is a thing now. (Although, for me, it was Depakote, and not Lithium.) She had another manic / psychotic episode when she tried to get off Lithium at age 25. I successfully(?) did get off all my pills in my early 20s, and that was my new normal for a long time, until I had 2 subsequent manic / psychotic episodes in my 30s. She had to switch off of Lithium because it was killing her kidneys, and she had a really hard time stomaching Depakoke, but she finally did get through it.
Having to switch sent her on a spiritual journey to learn about Lithium as not just a psychotropic drug but as an element, super common in nature. Which made the book encompass much more than just her mental health trajectory. The best thing about it though, was how thoroughly and deeply she gets back into that headspace of being so completely out of her mind. The slightest suggestion toward a minuscule thing could send her on an all-day (or longer) journey to do and/or be that thing. She devastated every aspect of her life that second time around. I was surprised by the fact that everyone around her wanted to keep her out of the hospital for a second time because she was no longer an adolescent and the adult ward was apparently to be avoided at all costs. As a result, she was in that state much longer – days, weeks… I was brought to the hospital like, BAM! So fast my head didn’t get a chance to spin out too far too fast with too many repercussions.
The second book I’m reading with a portrayal of a breakdown is called The Petting Zoo, by Jim Carroll (of The Basketball Diaries fame). He wrote this book in 2010, and according to the forward by Patti Smith, he died at his desk while writing. He had finished it at the time of his death, but it was still in the editing process. A few people had their hands in trying to edit as close to Jim’s style as possible. It’s fiction. It’s hard for me to get through (probably largely because it’s fiction – I almost always gravitate toward non-fiction and memoir). The book opens with the main character, Billy, in the midst of a manic frenzy. I didn’t know the book would be about that at all – nothing about that on the back cover summary – I bought it on a whim from a record store that was going out of business. So it was interesting to get thrown into that unexpectedly, but I gotta say it felt lacking in… something.
Billy has some kind of crisis over an art opening at the MET and how what he saw of this one artist affects how he’s approaching his art for his own upcoming show. He careens off down the steps, on his own, into the Central Park Zoo, more specifically a side spectacle, an outdated petting zoo. From there, he flees down the street, in his tuxedo and fancy shoes, to a building that reminds him of an Aztec temple. He then hits his head and his eye on branches or something and starts shouting something about a knife. He has a momentary black-out and the cops pick him up. At which point he comes back to reality, and that’s it. Although the aftermath ends up taking longer, red tape and everything. He has to stay overnight in a mental ward, which is just kind of looked at as a novelty, a curiosity, a stop-over.
In conclusion, real life is zanier (or at least more compelling to me) than fiction.
I drew this picture to illustrate the jumble I feel is going on. Just to recap, 6 months ago, had a manic episode and was hospitalized. I previously was not on any medications, but suddenly I was thrown back into all of that – psychiatric visits, side effects, adjusting dosages, trying different drugs. I’d definitely say the hardest part of the past 6 months was being depressed for a good chunk of that time. But almost equally hard, just in a different way, is the long term.
Early on, I was cavalier. I was sure that I’d get off of all these medications within 6 months – just go back to the way things had been. I was even reluctant to add an antidepressant – things had to get really bad for me to go there. Now that it’s been 6 months, I can easily say that time frame was way too short. And I’m also not so sure anymore: Which drugs are helping? Which side effects can I tolerate? How long will I be seeing this psychiatrist? Do I potentially want to stay on any of these long term? (That last question scares me – it’s almost as if being med-free has been a part of my identity…)
Some of this journey has felt crazy. I was having hot flashes and cold sweats, my mouth tasted metallic, I threw up a few times (and I have a stomach of steel). At one point, I went on a drug called Cogentin. Its purpose was not to help with symptoms, but rather to help with side effects. One of the other drugs, Geodon, typically causes hand tremors and a stiffening of facial muscles. When a nurse practitioner asked if I was experiencing these things, I said, “I guess so.” So she prescribed yet another thing to add to the mix. After 3 days of taking it, my nearsighted vision became blurry. Overnight. One day was fine, the next day, I couldn’t read the computer screen. I wasn’t reading books at the time, so that wasn’t an issue, but I remember eating food and not being able to see it and just feeling enormous sadness on top of depression. I didn’t put the pieces together, but luckily I had an appointment with my psychiatrist 2 days later, and when I mentioned the blurry vision, he said, “Oh, that’s common with Cogentin.” What?
I also cycled through 4 different antidepressants within a short amount of time. Celexa, Zoloft, and Lexapro were making me feel famished all the time, which was just making me feel anxious. I got on Wellbutrin, and luckily that’s been side effect – free as far as I can tell.
Ideally, I don’t want to be medicated. And it was so easy when it felt like that wasn’t on my radar. But now I am faced with all these decisions and timelines. And although there is strong input from other people (mostly my psychiatrist, who thinks I need to be on at least something for forever), it’s all ultimately up to me.
For now, I just advocated for myself to lower the amount of Geodon (mood stabilizer / antipsychotic) that I’m taking. I feel really happy about that. I have plans to tackle Klonopin (anti-anxiety medication that I’m using as a sleep aid) next. As for Wellbutrin (antidepressant), I’m not quite decided. I’m just going to take these things one step at a time.
Today is the 2nd annual World Bipolar Day, an event that strives to educate the public about bipolar disorder and encourages an open discussion to end the stigma associated with brain illness. There’s a facebook page where people can share stories, and there’s lots of links to different organizations. It was chosen to fall on this day because it’s Vincent Van Gogh’s birthday. He is said to have suffered from bipolar disorder, and he committed suicide at age 37. Bipolar disorder is fairly rare – roughly 1% – 2% of the population are bipolar. Some estimates say up to 5%, but there is this sense that it’s over-diagnosed. When I have questioned in therapy whether I am bipolar, she has replied something to the effect of, “That was a very popular diagnosis then. A lot of teens were being diagnosed.” Sometimes people think they have it because their moods are extreme; really something else might be going on.
I thought I’d take a minute to reflect today about whether I am bipolar or not. I mean, I did just go through a delusional manic episode 2.5 months ago, no doubt about it. And I am currently sinking through a rebound depression – definitely a clinical level depression. But I strongly do not think I am bipolar. It’s been 15 years in between episodes, and I’ve only ever had 2 episodes. Much of that time I’ve been off all medications. I can accept that I have bipolar-like tendencies (and I’m hyper-sensitive to stress levels), but I don’t think I fit the criteria, nor do I think I need to be medicated long term. In fact, I plan to go off my medications in a couple of months once this passes and I feel like myself again.
My new psychiatrist told my partner, “Once a bipolar, always a bipolar.” Meaning, I’d been (mis?)diagnosed already (at age 17), and there’s no taking that back. ??? He thinks I need to be medicated forever. He doesn’t get that I’ve been stable and have managed issues in my life in other ways for a long time. I’m pretty sure someone who is really bipolar doesn’t get to do that.
I can’t imagine what it would be like to actually be bipolar. To have to balance a medication cocktail indefinitely or suffer the consequences. Because when you’re actually bipolar, you can have an upswing or downturn without much prompting, if you’re un-medicated or if the medications are not right for you. If I was pretty sure I would be going through more mania and more depression in the near future, I would be living in fear of that. I honestly do believe I am prone to going through mania and depression again, but to a much lesser extent than someone who actually has bipolar disorder. And that’s scary enough.
One other factor that makes me think I have bipolar-like tendencies has been my reaction to SSRIs. I took Paxil for a few weeks about 13 years ago, and it caused me to feel super agitated and become hypomanic. Apparently this will happen if people with bipolar disorder take SSRIs. I do take this seriously, but ultimately I’d have to say I do not have bipolar disorder. Today I’m thinking about everyone who actually does.
I’m on a 2 week leave from work again right now. I was basically planning to just push through depression and just go through with obligations and routines. That’s what I tend to do. But I was switching medications, and I really hit a wall. I had been on Geodon, and was switching to Latuda (both atypical antipsychotics). The Geodon was causing some strange hormonal side effects, so for 2 weeks, I was on a half dose of that and a half dose of this new one. That was working out OK. Switching to a full dose of the Latuda really set things off though. I couldn’t sleep and was starting to feel agitated. Depression plummeted and anxiety skyrocketed. Last night, I threw up an hour after taking the pills.
I had a therapy appointment yesterday, and going out of work again was her idea. As soon as she said it, it sounded like a good idea. Why didn’t I think of that? Haha. I have plenty of sick time; might as well use it when I actually need it.
I really do not know what I’ll do for two weeks. (OK, I do have some ideas – I can get my car recalls taken care of, I can start thank you cards from our party last summer, I can give my friend a hair cut, I can try doing some writing, I can just take it easy.) I feel relief.
I just feel trapped in by medications right now (side effects are weird! I’m a small person and I feel the dosing has just been way too high!), and by my psychiatrist because it’s all his call. I thought the Geodon could be OK if I were on less of it. He decided we’re not going to lower it, we’re going to switch drugs instead. Now I have to call him and tell him that’s not working out. I really just want to be on Geodon, just less of it. I really hope he listens.