Giving Caregivers a Platform: Meagan, Mother of Matt

This is a story of recovery and partnership between a mother and son and their journey to healing. 

It begins, as such stories do, with common human struggles. Like many who endure mental health downfalls, Matt’s life was consumed by a perfect storm of circumstances including relationship stress, a partner’s decline in health, and caring for a young neurodivergent child—all of which, combined with his own health ailments on top of being the sole financial provider, exacerbated his overwhelm, depression, and anxiety. This led him to his initial treatment and drugs, which led to more, then more, then more, evolving into a long and arduous cascade of psychiatric harms.

But the combined intelligence and cognitive awareness of Matt and his mother’s tenacity for answers undoubtedly gave him a second chance on life. Matt’s willingness to become well—and his mother Meagan’s quest to learn and change the system—were steadfast throughlines to his recovery. 

The Q&A below is pulled from months of back-and-forth with Meagan, whose name, like her son’s, has been changed.

Can you share a bit about Matt’s story—and when you knew he was declining? 

For a period of four years, from 2014 through 2018 during his decline and overwhelm, Matt was prescribed five different antidepressants layered on top of one another without tapering, which ignited a cycle of adverse reactions. It soon became clear that other than numbing him out, they were not helping. 

I knew in October of 2018 that Matt was in trouble during a phone call, when he told me in a cheerful voice that he had been to the ER for “mental health reasons” but was “fine.” The ER physician had given him Prozac.

A few weeks later, Matt’s wife informed me that his personality had changed drastically, sometimes sobbing for hours since he began the antidepressants. Knowing something wasn’t right, I called Matt’s younger brother, who lived nearby, and it was revealed that Matt had said he’d discovered the key to time travel and was being watched by an evil eye.

This psychosis elevated when Matt began calling me several times a day filled with anxiousness and difficulty finding words to express himself. Fearing for his safety, I finally convinced Matt to get a psychiatric evaluation. By late November, 2018, Matt found a psychiatrist who diagnosed him with Bipolar 1 disorder after one visit, prescribed Latuda, tapered him off Prozac, and practically sentenced him to be medicated for life with an overall “fair” prognosis. The psychiatrist did not have room for Matt as a regular patient, and the psychiatric nurse practitioner in the counseling office took over his medication management. 

In late December, I flew to Washington to see Matt and found him out of sorts, quiet, tired, obsessively scrolling through his phone and jiggling his knees. His personal life was in an upheaval with his impending divorce resulting in 50% custody of their child, and he was forced to sell his home and find an apartment.

Following that visit, my husband (Matt’s stepfather) and I decided to relocate to Washington to live closer to him. Upon our arrival, Matt helped us unload, and it became apparent that he had lost a lot of weight. I could see his lifeless eyes. I knew we had made the right move to be near him. 

Thankfully, from my work as a music college professor, I understood the connection between music and the brain. During a kismet connection with a neuroscientist colleague, he referred me to Open Dialogue in Finland. Being open to obtaining support outside the mainstream medical model, my friend warned me that antipsychotics were very difficult to discontinue, and discontinuing could lead to worse outcomes. Thankfully, with Matt’s meticulous and disciplined nature, he would take the medicine regularly, as he believed getting well meant compliance as a key to success. While adverse side effects like liver damage were exceedingly rare, I could already see that Latuda was hurting Matt, as he showed signs of exhaustion, appearing thin and gray.

When did you realize that Matt was in a deeper state of challenge?

In October 2019, during Matt’s move to a new apartment, I observed that Matt was emotionally paralyzed, unable to pack from lack of sleep. It was soon revealed that his GP had increased his Xanax on top of the Prozac that was also prescribed a few weeks earlier, thus numbing him out again. 

Matt explained to me that within six months of starting the Latuda, he was having panic attacks and pacing. He went to his GP, who diagnosed him with “anxiety disorder” on top of his bipolar diagnosis and prescribed Xanax. Matt told the GP that he could not take Prozac, but the GP said, “Don’t worry, it’s perfectly safe.” 

After Matt’s first simultaneous dose of Xanax and Prozac, he felt his brain snap. He never took another Prozac pill but felt he needed the Xanax to function. From that day on, he could no longer sleep. Matt explained to me that the GP had doubled the Xanax dose to 1 mg so that he could take two .5 mg pills per day. When Matt’s nurse practitioner learned that Matt’s GP had prescribed benzos, he simply kept prescribing them along with antidepressants and Latuda.

Anxiety was a new trait for Matt, and I knew him intimately as his mother as a calm and easy child with academic strengths, musically gifted, and a tenacious spirit performing in musical theater. Matt made friends easily, was highly empathetic, and had a great sense of humor. He also was a certified whitewater rescue and rafting guide.

It was difficult to watch Matt pacing and ruminating constantly without the ability to nap or even yawn. I decided to Google “Xanax and insomnia and anxiety” and learned that benzodiazepine interdose withdrawal [when symptoms occur between doses] causes insomnia and severe rumination. I would find out later that the Latuda had sparked akathisia and that the Xanax had intensified it.

How did Matt continue to work and care for his child?

Challenges increased for Matt while maintaining working full time to provide for his child. Thankfully, I was able to care for his child while Matt struggled with brain zaps, numb hands and feet, impulsive suicidal ideation, rumination, stomach pain, insomnia, and night terrors. I did whatever I could for him, from bringing him food to doing his laundry, and would often find him at his apartment pacing for hours. I could see that the insomnia was getting worse. 

When did you realize that Matt was in need of help? 

We attempted to get help from a sleep clinic, and they refused to test him, claiming his insomnia was caused by “mental health issues.” Matt went to the ER several times for insomnia on his own, and during one visit was told to take Benadryl, which made him horribly drowsy at work the first day and then ceased to do anything. His nurse practitioner prescribed Trazodone, which made him manic, and Seroquel, which gave him crushing heart pain, along with Wellbutrin and Mirtazapine, both of which caused more agitation. 

The last visit to the ER jolted us to next-level intensity beginning with the ER doctor who traded the Xanax for Klonopin, another benzo, and prescribed Remeron, saying Matt needed to spend the night at the hospital so that they could “make sure he could sleep.” 

Unbeknownst to Matt and me, he was being admitted to the psychiatric ward, where his basic rights were being taken away with no phone, laptop, books and pens. The institutionalized facility was a cold and sterile environment—no pictures on the walls, drapes covered the windows, and the furniture nailed to the floor. Matt could not leave the facility for three days and had to miss work, so he pretended to sleep to be released.

Later, I convinced Matt to see an integrative neurologist, who questioned the bipolar diagnosis and suggested that Matt wean off the Latuda and the other drugs. The neurologist offered ketamine therapy as a bridge during withdrawal. They scheduled a second appointment. Meanwhile, I sent Matt’s NP [nurse practitioner] links with information on benzodiazepines and the Ashton Manual, asking why the NP had not informed Matt of these risks and why he had not mentioned tapering to Matt. Little did I know, this would not go over well with the nurse practitioner. 

I can only imagine what followed next. Did you feel unheard or threatened as a parent trying to work with Matt’s team?

Two weeks later, both the NP and Matt’s counselor called me and said they must drop Matt as a patient, recommending an outpatient hospital detox program and a “higher level of care.” We learned that hospital detox programs do not safely taper benzos, but Matt was desperate and decided to apply. This required an evaluation at the ER, and his appointment with the neurologist was late the same afternoon. It would be a tight window to make it back in time, and he asked me to accompany him.

Matt told the ER physician that he could not sleep without Xanax. His response was, “Drugs are never the answer.” When I interjected that these were prescribed drugs that had caused dependency, the doctor interrupted, saying, ”Mom, you need to be quiet or you’ll have to leave.”  

As Matt waited in the ER room for hours, severe interdose withdrawal began. When Matt told a nurse that he needed Xanax to sleep, she replied coldly, “We don’t give Xanax here.” 

Fearing he would become delusional from insomnia and lose his job, Matt paced and beat his pillow. Trying to avoid further demise, I went to the nursing station and quietly requested that Matt be released so that we could make an important neurology appointment. 

Apparently, the nurse saw this as combative and called a security guard, who escorted me to the waiting room. The security guard ordered me to leave the hospital and further disrespected me by yelling in front of a packed room that he was going to call the police because I was “disturbing patients.” 

I felt so dismissed, unheard, and demoralized, and I knew Matt would think that I had abandoned him. I refused to leave and waited for three hours when, finally, a night shift nurse told me that I could return “if I behaved.” 

Matt was held overnight and interrogated again the following day. He was not accepted into the program as he was seen as noncompliant due to all his questions. 

“He is so intelligent!”—a social worker seemed surprised.

Since Matt was not accepted into the program, what did you do next?

As we walked to the car, I had no idea what to do at first. Matt began to slip into catatonia as he got into the car, panicked, and started walking back to the hospital. I went after him and stood beside him as he returned to the check-in desk and told the clerk he was suicidal, that he would do whatever they wanted. 

They assured him they would admit him, and I left the hospital. At midnight, a social worker called me, saying that Matt was being transferred to a hospital two hours north of Seattle where there was a “benzo expert.” In reality, Matt had been sent to a state psychiatric hospital, and the psychiatrist there knew nothing about benzos.

How did the state hospital treat Matt? 

Even though he was safe, we soon learned that by his consent to admission, he became a ward of the state. This admission waived his right to decide when to leave, at the risk of losing his career, his home, and ability to support his son. It was just so sad. Matt just wanted help sleeping. 

The psychiatrist called me the next day and announced that Matt had “bipolar disorder” as if this were a “new” diagnosis—and had clearly not seen Matt’s medical records. He prescribed several new drugs in addition to his prescriptions of Latuda and Klonopin. This psychiatrist decided to take away the Klonopin just prior to his release, reporting that it would have no adverse withdrawal reactions. 

This physician was wrong. He didn’t know much if anything about benzodiazepines, believing that “once the drug is out of the system, any reactions are not caused by the drug.” Less than 48 hours after arriving home, Matt exhibited severe withdrawal.

At the time, I knew the only answer was to find a prescriber who would reinstate the Klonopin and then taper it properly. I found a provider near Seattle on the MIA provider list but that provider was full. Thankfully, the owner of the office, a renowned bipolar expert, said he could take Matt.  

There was a momentary breath of relief as I thought, surely he would know that benzos are contraindicated for bipolar disorder and that he would explain to Matt about withdrawal and side effects.

Neither happened. 

While this psychiatrist reinstated the Klonopin, he never mentioned adverse effects or tapering. Matt refused additional drugs when the psychiatrist tried to convince him to start a new neuroleptic, Vraylar. 

My husband and I wrote and requested informed consent. He only replied, “Thank you for the information.” We were going to get nowhere with this doctor. 

After two months of $250 per fifteen-minute weekly visits, Matt stopped seeing him. It clearly was not a fit and he would not be helping Matt. A few months later, I was glad we had left this psychiatrist, because he had even falsely written in Matt’s records that I had a history of anxiety disorder. Imagine that?! 

What did you do when Matt was released?

It was really difficult to watch Matt decline. He had given up hope that he could get well.

I convinced him to try one more psychiatrist who marketed himself as an expert on brain injury. This psychiatrist recommended that Matt discontinue the benzos and trade them for gabapentin. While Matt seemed better for a few days, he soon slid back to barely functioning. 

For Matt, the silver lining of Covid and the pandemic in 2020 allowed him to work from home, which truly saved him. Not having to get dressed and leave the house was truly a blessing in disguise as it likely saved his job and his life. 

Where did you go from there to help Matt? 

From the beginning of Matt’s ordeal, I began voraciously reading and researching about psych med harm. In the fall of 2019, I had discovered the trailers to the films Medicating Normal and As Prescribed. From there I discovered Joanna Moncrieff, David Healy, Robert Whitaker, and more. This brought me to Mad in America in early 2020, where I scoured the website for support groups and discovered the parents support group. Dismayed by what I had heard at local NAMI meetings I attended, I found the MIA parents group to be much more supportive.

Through reading and conversing with other victims of psychiatric traumas, I discovered that antidepressants had been the gateway drug for Matt’s adverse reactions. This led to the symptoms that were diagnosed as bipolar disorder. I also realized that some of his symptoms were likely caused by withdrawal from the many antidepressants he had cycled on and off over the years.

How was Matt involved in all of this? Did he understand what you had found?

Over the months, I had shared many books and articles with Matt, but he did not have the bandwidth to read anything outside of his work. The one book that was accessible and encouraging enough was Baylissa Frederick’s Recovery and Renewal. 

Sadly, one of the side effects of akathisia is ruminating despair, and Matt was convinced that his brain was permanently damaged by the medication and was also sure that he did not have bipolar disorder. He wanted control of whatever time he had left and decided to stop all his medications one by one. He stopped the Latuda first, cold turkey, and then later the others. 

That sounds exciting and brave yet scary to quit cold turkey. How did he progress? 

Immediately I saw life come back to his eyes, and some of his humor returned. Unfortunately, it wasn’t over. Within a few weeks anhedonia, emotional numbing, covered him like a blanket. While Matt had experienced this before on antidepressants, now he lacked the ability to cry or laugh, and descended into a complete lack of sense of purpose for anything he did. His love for his son kept him pushing forward and to continue working at his job without losing his ability to write work emails and concentrate on numbers.

I was petrified, but I asked Matt to give me his bags of medication bottles, and he accepted this. I had never advised that Matt suddenly stop his drugs, but I feared he might take his life nonetheless. There were 11 prescriptions within a nine-month span, and that did not count the numerous drugs he had been prescribed before 2019.

Wow, that is a lot of medication. You had mentioned that you found a resource called Open Dialogue. These therapists are hard to find. Did you find someone in this modality to help?

One of the MIA support group members had alerted me to Open Dialogue therapists living in my area, which seemed like a miracle. I was able to enlist their support so that I also could learn how best to support Matt. We met via Zoom because of Covid and they helped Matt survive the difficult withdrawal period.

I began seeing sporadic windows in Matt, days where his personality and humor returned. Then he would descend back to anhedonia, but I knew this was normal in the healing process and kept telling Matt that his brain would heal. Matt was skeptical, as labels and experience had made him despondent. I decided to send Matt the link to the film Medicating Normal. The opening scenes in that film were shot in Tacoma, near where we lived, and the young man in the opening of the film reminded me of Matt. Watching this film helped Matt turn the corner. It gave him hope that he, too, might recover.

What other support did you receive to help Matt in his recovery?

Another parent support group member put me in contact with psychologist Ron Bassman, and thankfully they began working together virtually. Matt’s turn-around was quick and remarkable. Fortunately, his akathisia had subsided soon after he stopped the Latuda and benzos, but after being labeled and gaslit for years by the medical establishment and suffering from withdrawal anhedonia, he felt his brain was damaged for life and that he was ruined socially. 

With Ron’s encouragement and wise advice, Matt picked up and began living. It was as if he had been resurrected. Matt reorganized his entire apartment in a weekend and decided to take his son on a trip to California after having hardly left his apartment for years. I was a little concerned that he had become manic, but the texts, videos and photos Matt sent showed that this was not the case. Since then, Matt has not just continued to work but excel in a competitive, demanding career. He resumed whitewater rafting, has trained to renew his water rescue license, and is a devoted single parent of a disabled child. He manages his stress well, shows no signs of any kind of mental health disorder; he never had rebound psychosis. His humor and empathy are back. He shuns the conventional medical system and sees a naturopath, who discovered that he was prediabetic, likely a result of the medications. With a healthy diet, exercise, and sufficient sleep, that has since resolved.  

That sounds so miraculous and hopeful, Meagan. The combination of Matt desiring to be well, matched with the right therapist and care in Ron, seems like an important part of his recovery. 

Absolutely. However, we still had the challenge of Matt’s various withdrawal symptoms, ranging from inability to cry in 2019 to 2020 to akathisia on the Latuda that was exacerbated by benzodiazepines. It was subtle at first, starting within weeks of starting the Latuda with jiggling knees and nervous scrolling through his phone. Within four months it escalated to panic attacks and pacing, but he was not telling us because he thought he was reacting normally to bad decisions—self-recrimination is a symptom of akathisia. The akathisia subsided after he discontinued the Latuda and benzos in the late spring of 2020. (He did not “taper” in a systematic way. He was still on Latuda, Depakote, Mirtazapine, Lithium, and Klonopin in March 2020.) 

Not one medical provider accurately diagnosed this or mentioned this, though the final psychiatrist was aware that benzos caused harm. It seems that most have never heard of it. 

His last psychiatrist, who he saw in March and April 2020, started him on Gabapentin and told him to stop the benzos, and he also stopped the Latuda, but it was not a slow taper. By the end of April he had stopped all the meds. Whatever taper he did was short—less than two months, if at all. Just as the akathisia resolved, anhedonia set in. It was unlike anything before the drugs or since, total lack of pleasure in anything, a zombie-like detachment. But he wanted to provide for his son, so he kept working. He was very uncommunicative during that time, so it was hard to get him to talk about what he was feeling. He pulled all his blinds, and lived in the dark for nearly a year. Now he is outdoors all the time.

Furthermore, Matt was experiencing withdrawal symptoms from the antidepressants he was prescribed from 2011-2020. All of the adverse reactions were misdiagnosed as “mental illness.” 

Psychiatrists, general practitioner, nurse practitioner, numerous ER physicians, nurses, social workers all assumed this was “mental illness” and/or suggested that Matt was a “pill seeker” because he could not sleep without benzos after they were prescribed. 

As my parents witnessed Matt’s journey, they remembered that my sister, who died in 2013 at the age of 37 of a leukemia that usually strikes after age 60, had suffered terribly because of antidepressants. Prescribed when she was just 18, after her mother was diagnosed with cancer, she gained 150 lbs, lost motivation, developed severe psoriasis, insomnia, severe social anxiety, agoraphobia, and severe sensitivity to anything perfumed. She had been healthy, active, and outgoing as a child. Three years before she died, she decided to discontinue her medications and therapy, as therapists had suggested the medications. She lost weight, regained her motivation, went back to graduate school, and following her graduation found a job she loved and an apartment. Just after starting the job, she was diagnosed with leukemia and died a year later. 

There is a warning on Prozac and Paxil, both of which she was prescribed, of blood platelet changes. I found an article confirming that these changes could progress to leukemia. No one else in our family has had leukemia. My sister was 13 years younger than me with the same blood type. 

Furthermore, I made the connection with my brother-in-law, who died by suicide in 2004 at the age of 52, who showed no sign of mental illness until he began antidepressants in his late 30s. He began taking them during a difficult personal life situation. From that time forward, he was in and out of psychiatric hospitals. He took his life the day after returning from a hospitalization.  

The “mental illness” of my sister and brother-in-law were considered evidence that Matt had a mental illness “gene,” which of course has never been proven to exist.

Letting that seep in for a moment. What other discoveries have you made around drugs and recovery? 

As I began my research on psych drugs, I began to join social media support groups to learn about symptoms others had experienced. Most reassuring was the fact that most people survived and recovered after getting off the meds. But some did not. 

After my son began to recover, I shared his story in the groups, and individuals would contact me asking if I had advice or could point them to safe providers. I never told them to discontinue the medications, but I pointed them to the Mad in America provider list, to Baylissa Frederick’s website, to the Inner Compass Initiative, and to the film Medicating Normal. 

For some, it was too late—their child or spouse had already succumbed to the damage caused by these drugs. One young man, “Angel,” corresponded with me for a year. He was bedridden and had not slept more than an hour a night for years. He was penniless, living with his mother, unable to care for his daughter, and his psychiatrist told him that she never deprescribes; she only raises dosage. He was desperate. One day he stopped communicating and I found an obituary.

That is so heartbreaking and unfortunately not uncommon. Do you have any stories of recovery from the people you have encountered?

Yes, another woman who contacted me, a translator and business professor from Malaysia, was bedridden with side effects of benzos and antipsychotics. She had been prescribed Seroquel for insomnia caused by worries about an eye surgery. She had immediate reactions and was diagnosed with bipolar disorder. Her family forced her to take the medications. She fought with all her might. She would call me on video calls, weeping. She needed reassurance that she could recover. We exchanged small gifts of support and friendship. I am so happy to say that she is off all medications and has resumed her professional life, winning awards. Her social media posts show a well-balanced, happy individual. However, she has permanent knee and eardrum injuries caused by struggling against a brother who was forcing her to take the medication. Her big heart has allowed her to forgive her family as she knows that they thought they were helping her. 

It is such a blessing: now that you have this recovery story in your family, you can help so many others. Thank you for sharing your story here with Mad in America. What would be some of the last pieces of advice you can provide? 

I think it is important to acknowledge that these experiences ignite trauma within the whole family. It is impossible to adequately describe what parents whose children have been damaged from this system experience. It affects everything about their lives: their careers, their finances, their social lives, their family lives, their health. Life revolves around keeping their child alive or grieving for them. And they experience this all in the midst of a society that screams “Pill shaming! Stigmatizing mental illness! In denial!” when they speak out about corruption and harm.

I am resolved to express the truth about psychiatric drugs to spare others from harm and grief by telling my story, and with some local activism. We are a small community that needs to find one another to continue to support each other and help our children survive in a confusing and contradictory world.

(For more in Karpaty’s series of interviews with parents and other family members, “Giving Caregivers a Platform,” click here.)