If It's Not One Pill It's Another

On brains, publishing failures, and switching SSRIs

Photo by Madison Kaminski on Unsplash

During a deep depression in September, I talked to my psychiatrist about finally switching from Lexapro to a different SSRI. I have a very complicated (not bragging, but bragging) brain that even most neurologists would have a hard time explaining. This psychiatrist knows me well and works with my neurologist. I love him, even though we only see each other a few times a year.

About eight years ago, Lexapro changed my life. I was in really intense muscular and joint pain, and I thought it was connected to my rare genetic neuroligcal disease, Dopa Responsive Dystonia.

Dopa Responsive Dystonia is a movement disorder that affects about one in two million people. It’s a gene mutation, that hinders the brain’s ability to send commands to other parts of the body. I sometimes say to people who ask to know more, “I don’t make enough dopamine, so I take synthetic dopamine.”

But it’s actually more complicated than that, and I didn’t really understand this until a few years ago. I still, in some ways, don’t understand it because I’m not a neuroscientist or neurologist. But basically there are enzymes that transport chemicals and signals between synapsis in the brain and something is wrong with my enzymes.

I think.

Before I was diagnosed and given another miraculous pill (pure dopamine), my life was pretty shitty. I often couldn’t walk, run, or do many physical tasks like dress myself and eat on my own (especially later in the day when I got tired). I was in a lot of physical pain from my muscles always spasming and tensing, and I basically thought I had no life ahead of me. All hard things for a little girl to deal with let alone fathom.

I have written about this quite a bit, probably mostly in essays and in my essay collection, 16 Pills, which will hopefully be back in print soon, but can be bought used and from me when I have copies.

Speaking of books, there are four Carley Moore books currently in print and they make great xmas gifts. Two novels: The Not Wives (one of the early divorce books that have become so popular of late), Panpocalypse (about living during the lockdown New York’s pandemic, getting a bike, looking for love, and finding a time portal to 1935 lesbian Paris), and Heart Less (my debut poetry book which has two beautiful covers to choose from).

I write about Dopa Responsive Dystonia here because it’s often misdiagnosed as cerebral palsy and a bunch of other stuff, and folks suffer for much longer than they need to, so if my symptoms sound familiar to you or anyone you know, have them write to me or go here.

Here’s a illustration my psychiatrist shared with me yesterday to help me understand my brain. It makes no sense to me whatsoever, but it’s cute.

Or I guess actually this is the metabolism of BH 4. I don’t even know how to type the little four, let alone understand this illustration. I don’t know what BH 4 is either.

My neurologist also believes that many of us who have DRD (that’s the cute shorthand name) have depression and anxiety. Makes sense given that dopamine, serotonin, and synapses are a big part of how we feel in addition to how we move.

All of this to say, my brain is complicated. It’s also my favorite brain because I’m smart and I like that about myself. This brain has supported me as a professor, writer, friend, and parent. Thank you Carley brain.

Before I started taking Lexapro, I took my synthetic dopamine and nothing else. If you knew me right before I started the Lexapro, we would perhaps agree I was often depressed and struggling with masking, crying, feeling things too much, starting fights, and holding onto everything for too long—all hallmarks of mental illness. I was also having really bad anxiety, difficulty socializing, and feeling kind of locked in. I felt far from myself.

I had also been working on a book, which later became The Not Wives, for a very long time to give to an editor at a big five who had not offered me a contract but given my agent and me her word that she would buy the book once I had made these very substantial changes.

I made those changes and the book turned into The Not Wives, which is a great book I’m really proud of, but I was under a lot of pressure to produce this book in a few months and I worked every day for six and seven hours and then I had a nervous breakdown because the editor didn’t buy it. Was it a nervous breakdown? I think so, but not like I’ve seen in movies. I didn’t run screaming through the city or go to the hospital, though I wanted to very badly. But I was feeling all of the above symptoms all of the time.

Maybe I was mourning the end of my marriage. Maybe I had finally exhausted myself. Maybe I was heart broken about the book. Or maybe I had convinced myself that I was going to get an advance that would change my life, and then it all fell apart.

I used to have a lot an anger around this particular editor and agent, but I’ve let that go because I know this is just publishing. Nobody was trying to destroy my dreams. Deals or promises of deals fall through all of the time, and writers, editors, and agents are heartbroken about it. I was devastated because I believed book success would make all of my problems go away. I now know that books can’t do that for writers.

Are there things I wish I’d done differently at that time, yes. I wish I would have really considered what I wanted my novel to be. The book that it was before The Not Wives was an excellent, voicey, not super plotty, page turner about a out of control 40-something woman in the aftermath of her divorce. Divorce books are having a moment right now, and that’s good, but I maybe I was a bit ahead of what was coming, which was straight women leaving their marriages in droves and writing about it. I loved and still love that book, but changing it to suit the tastes of one editor wasn’t really necessary. Again, she asked me make another great book, and I did, but it was a different book.

Maybe I should have left that agent at that moment because we had a fundamental misunderstanding. Again, not her fault. But after that I couldn’t really trust her. She eventually dropped me, and I think that was the right thing for both of us.

I also wish that I would have worked on my own timeline to produce this other very different book. To do it in one summer was awful, and really messed me up. I should have asked for the time I needed or missed that deadline. But I had a firm deadline and I like to meet deadlines. I also didn’t really know how to take care of myself then.

Cue the breakdown and then the Lexapro. I was in so much pain, I’d have taken pretty much anything. I went on 20 mg and my life changed. I stopped worrying about every last thing, I wasn’t on edge every second of the day, I could sleep through the night, I wasn’t so tired that I cried every day, I no longer wanted to die, I could let things go and move on, I didn’t have rage attacks and yell at someone I loved. My libido stopped feeling like an emergency situation on every corner. And my pain went away.

SSRIs are obviously miracle drugs for so many of us. They are also really addictive and hard to wean off of. They can flatten feelings and make you feel incapable of falling in love. They can also make you gain 40 pounds and make orgasms or staying hard feel distant or unreachable. They sometimes stop working.

Are SSRIs the SOMA that Aldous Huxley predicted? I’m open to this.

Cue this September. I’d been wanting to try something different than Lexapro. The weight gain and the flattening of feelings was getting to me. I’m pretty body positive, but I was tired of trying to find clothes that fit. My psychiatrist suggest Villazadone, which he said is like Lexapro with less side effects.

We began a slow cross taper. It was going okay, until I got fully on the Villazadone. These last two weeks I felt crazy again, manic and edgy. I started waking up at 3 and 4 am again and I couldn’t go back to sleep. I stopped pooping (the worst!). My back started hurting, and then this weekend every single muscle felt pulled, and my joints ached. I told

Amy Shearn

that I felt like my bones were going to snap.

Mildly high (to help with the pain and also lights!) at the Brooklyn Botanical Gardens light show that my friend Lex took me to (thank you Lex for the show, the spiked cocoa, and the drug revelation!), the pain started to feel like a memory. But of what? On the subway back home, I figured it out. This was how I felt when I had the breakdown. I googled a bunch and realized I was probably in Lexapro withdrawal and/or the Villazadone wasn’t working.

The next day I took half Lexapro and half Villazadone and the pain went away. The last three days I went back to Lexapro completely and I felt like myself again. I slept until eight today, I’m not worried about every tiny and big thing, and I’m not in pain. I still need Wellbutrin to help with the deadening effects of the Lexapro, but that’s an SSRI I know well and can tolerate.

In my dream world would I not need SSRIs at all? Yes. Or would I find one that didn’t make me feel too big for my frame? Maybe. Maybe not. Is it better to live a pain free life if I can manage it? Yes. I’ve had so much pain in my life, if I can avoid it I always will.

So take your SSRIs if you need them!

Be a chubby, sleepy raccoon like me!

Get the epidural if you want it!

Eat the cake!

Fuck the state!

Tip writers, baristas, waiters, delivery people, and sex workers!

Enjoy the typos!

xoxo

Carley