Updated: Feb 11, 2021
I did not choose to be on psychiatric medications for my entire adult life. I don't even like taking Ibuprophen or Acetaminophen for fever because I want my body to be able to do its healing work and communicate to me unhampered.
Just a couple of years after I started on the antidepressants we wanted to have another child. By now I was experiencing disturbing side effects from the medication like involuntary tics. So, I told my psychiatrist about what I was sure was side effects- the tics in my legs, hands, and torso, the occasional pain in the middle of my back that felt like a hot poker. He suggested that perhaps there was an underlying neurological problem that the antidepressants uncovered.
I promptly saw a neurologist, but the doctor finds nothing to explain it and offers more medication that will impact my central nervous system, and I say no thanks. By now I am sure being on these medications isn't good for me or the baby we plan on having.
I start having unusual mood changes and negative thoughts I can't stop that run around my head daily. My doctor shares a scholarly article with me that shows antidepressants of a certain type are generally safe to take throughout pregnancy that just happens to be what I am already taking. I consider it a good solution because getting off the medication scares me. And not because I am depressed.
Years later, and with a couple more unsuccessful tries at stopping my medication again under my belt, I feel weird squirrely sensations in my legs. It's only on some nights when I'm trying to fall asleep. It feels like my nerves are firing, trying to move my legs, but they aren't moving. I felt compelled to ask my husband if he could see a spasm. He couldn't. Sometimes I would feel like growling in agitation, and I'd spring out of bed like an animal and just pace to release the bazaar need to move my legs: other nights, nothing.
Certain aspects of my job that I felt so good about now became difficult for me to perform. Anything out of my comfort zone, and let's face it, selling is all about getting out of your comfort zone. And a few of my co-workers were picking up on the side-effects I was having.
"Oh-MY-GOD!! What is your tongue doing?" a colleague barks at me while we are talking together in the office. Yes, with the open floor plan and cubicles.
I may hesitate for a nanosecond, but I state, "moving," and continue talking (I may even glare a bit when I say it). I make no explanation, and there is no further discussion. But she's right. My tongue moves involuntarily inside my mouth from side-to-side. The more common side effect is the tongue jutting out of the mouth, so I count my luck.
According to my psychiatrist, "There is nothing you're taking that would cause those side-effects, Antonia."
I spend a lot of time reading and learning all I can about antidepressants- I read the inserts. So I could confirm for him that the antidepressants I'm using do indeed cause Tardive Dyskinesia (TD). I am also a member of Survivingantidepressants.org (SA), which provides a wealth of evidence-based information for those committed to getting off their medication.
I've lost track of the number of times I tried to stop, but here I go again. I decide to taper my Lexapro to the next smallest dose available, and that I happen to have in my medicine cabinet. I know the drill. I will get a new prescription when I next see my psychiatrist. But, within days, I experience acute mind-stopping anxiety that slams with the first light and wages inner war with me all day.
SA does not recommend a 50% or even a 30% cut at one time, but 10% of the previous dose. I guess that what is happening to me is withdrawal from a rapid taper because I thought I could start off faster than SA suggested. No such luck. It subsides in the evening. It hits me in the morning, again, and accompanies me throughout my day only to subside by evening. Day in and day out, until . . .
I change my mind! I can't function like this and I want off this merry-go-round!!
I immediately reinstate my previous dose.
And wait. Desperate.
In the next few days, I experience something I have genuinely never have before. And none of it sounds like depression or anxiety, my supposed diagnosis. Something is crunching inside my brain. My arms are tingling in waves of paresthesia, and so is my torso and neck. I am trembling, and my fingers feel numb and cold. Acute panic-like anxiety greets me daily in the early morning. I have ruminating negative thoughts, and I'm experiencing agitation. I'm extremely frightened by these symptoms that seem to worsen by the day. Most days, I feel like I can't go on. Just like that. My psychiatrist agrees it is time to get me off the Lexapro that is causing such havoc and we follow the harm reduction approach.
Three months later, minimal improvement.
I'm exhausted by the daily battle with these symptoms. I call out of work for a week and then go on short- and then long-term disability while trying to solve this mystery with help from SA and my psychiatrist. But nothing helped, and everything seemed to exacerbate my symptoms. I decided to ask my psychiatrist to help me find a new antidepressant to manage these withdrawal symptoms. Even though I knew I would be sorry in the long term. And there was no guarantee that we would find one that didn't seem to trigger something entirely new. We continue to taper off the medication that I was on for years and suddenly can't tolerate anymore at the recommended 10% of the previous dose.
Several medications later, each with new and disturbing side effects, I'm in constant dread that we won't find something to tamp down my nervous system. I pull into the garage after work and think I could just sit here with the car on and end it all. I love my family and my life, though. I just don't want to feel this way anymore. In the house, my medicine bottles call to me. I know all this isn't good and isn't me. I've read enough and am experienced enough to know that I was not in control. My central nervous system was in hyperdrive. The day I took the wooden dowel in my closet in both my hands to see if it could hold my weight, I told my husband I needed help.
From the beginning of my journey to the psychiatric floors (6 & 7) in my local city hospital, I felt keenly aware of my privilege. The crisis hotline person spoke to my husband after talking. She decided I had suicide ideation, and she wanted me professionally evaluated. Would my husband give the crisis person his word to take me to the hospital? In my state of Connecticut, she was within her rights to send an ambulance and police to my house. She chose not to.
After intake in a newly constructed, if spare, locked psychiatric emergency floor, I am told suicide ideation is dangerous. I'm scared to death at this point, so no need to convince me. I agree to stay a minimum of five days in the hospital as required by law, I guess. I had my husband at my side until that night while they informed us of my rights and held me on a psychiatric emergency floor until a bed opened up. And took anything with strings and de-laced them- shoelaces, hoody strings, sweatpant ties, and the cute little pom-poms attached to the string on my socks that were a gift from my son's new girlfriend. All removed. No spiral notebook.
After a long day, they tell us a bed is available. We are exhausted from waiting and are relieved and nervous. But, only one bed is open, and it is in a hospital in a city an hour away from our home. When they tell me, I have an emotional meltdown worthy of any Karen and got to stay overnight in emergency until a bed opened up for me where I wanted to be- 5 minutes from home.
I know you are expecting a story about a week on a psychiatric floor. Ultimately, several things are noteworthy about that week. I learned a lot from the psychiatric nurses who worked with us day and night. I don't recall seeing people of color in any capacity other than custodial or food service, even though they represent 30% of the city. Everybody was very kind to me. The doctors there started a new medication regimen with prescriptions for a new antidepressant that I seemed to be tolerating, benzodiazepines, and an antipsychotic. And I am still tapering the Lexapro.
I did not choose to be on psychiatric medications for my entire adult life, and I continue to work toward stopping them entirely. However, it may be difficult to impossible to reach that goal. But, even with all my central nervous system has been through I have hope.