Source: Matcheri Keshavan, MD, used with permission.

Co-authored with Henry A., Nasrallah, MD

When I was diagnosed with schizophrenia at the age of 21, I was convinced that there was nothing wrong with my mind. I was an honors student studying biochemistry at the University of Southern California. During my last year of college, I failed all of my fall semester classes. I told myself I wasn’t trying hard enough and that if I tried harder, I could definitely do it again.

But many other warning signs were present. I lost my dorm room, became homeless, roamed college campuses, and completely cut my loving family and many friends out of my life. I often slept in the library, which was always open, and although I showed staff my expired university ID, I never revealed that I was not a current student.

In January 2006, I started hearing voices. I began to hear a chorus of voices mocking me in my mind. A few days later, while I was taking a shower, I thought three men were watching me through the window, but when I got out of the shower to see them, I couldn’t find the window. My auditory hallucinations became more intense over the months, and then I started acting strange (screaming, shouting profanities, walking in a strange zigzag manner) and was arrested by the police. , I ended up being admitted to a mental hospital.

When I was diagnosed with schizophrenia at the hospital, I thought of it as a personal problem, as if it were related to a “weak personality.” I believed I was too smart, too strong, too “normal” to be mentally ill. I had no idea that schizophrenia involves several neurochemical changes (such as dopamine, glutamate, and serotonin), as well as dysplasia and loss of brain tissue in some brain regions. It is a serious and complex physical brain disease that affects 1% of young people, usually between the ages of 16 and 25 (1).

During my first hospitalization, I refused to take any medication. The main reason was my unwavering belief that I didn’t need it, but also the fear of side effects. What I didn’t know at the time was that antipsychotics were the key to allowing me to leave the psychiatric hospital and live freely in the community with healthy people.

The first antipsychotic medication I took only partially alleviated the voices I heard in my mind, so I didn’t think it was working at all. But I was wrong. While taking the medication, I ignored the voice’s commands, yelled profanities (which I had never used in my life before hearing that voice), and walked in strange patterns. I was able to disobey instructions such as hitting myself or hitting myself. The doctors felt I was ready to be discharged because the medication had given me control over my actions again. I left the hospital and flew to Cincinnati to recuperate at my parents’ home.

Despite the hallucinations and delusions, I still had no insight that I was mentally ill and believed that drugs were completely ineffective. Then the side effects appeared. I experienced muscle stiffness, akathisia (extreme restlessness), a voracious appetite, emotional insensitivity, and excessive sleep (more than 16 hours a day). There doesn’t seem to be anything worse than taking medication, even some type of chemotherapy. But I was wrong again.

About a week after stopping the medication, the command hallucinations that had been suppressed by the antipsychotic medication returned. I found myself screaming profanities and hitting myself again. Guided by a voice, I broke my precious violin, which I cherished most, and was taken to the hospital. And I realized that being locked up in a mental hospital is worse than taking drugs.

With the goal of never being hospitalized again, I knew I had to stay on top of my antipsychotic medication. The last time I was hospitalized was a year later, in 2008. Yet, over the past 16 years, my psychosis has completely and permanently disappeared since a new psychiatrist started putting me on the most effective antipsychotic medication when other medications didn’t work. I have been fully recovered and living ever since.

I went back to university, graduated with honors in Molecular Biology, and subsequently published a book about my recovery journey. My psychiatrist and I created a nonprofit foundation to advocate for the severely mentally ill and educate patients, their families, and mental health professionals.

Now you know why people with newly diagnosed schizophrenia initially stop taking their medication. The majority suffer from “anosognosia,” a condition in which they are completely unaware that they have a serious illness (2). And it’s certainly difficult to take a drug that has side effects when you think you don’t need it.

When I was readmitted to the hospital after breaking my violin, my doctor explained to me the risk of a “brain attack,” but he didn’t use the exact words at the time. He told me that every time a person stops taking antipsychotics and another psychotic episode recurs, more brain damage occurs.

Additionally, if you stop taking antipsychotics, have a relapse, and then start again, you are likely to develop “treatment resistance,” meaning that the drugs no longer work as well as they once did, even at high doses. These two factors (loss of brain tissue and loss of drug efficacy after multiple relapses due to noncompliance) often contribute to the chronic disability of schizophrenia.

A schizophrenic patient who has just experienced his first psychotic break is convinced to always take a pill or take a long-acting injectable antipsychotic (which eliminates the need to take a pill every day) Assuming you can. In this case, the chances of sustained recovery and return to baseline are very high. Unfortunately, pills are still being prescribed and the majority of people stop taking the medication and experience repeated psychotic relapses (3).

When a person experiences a myocardial infarction, or what is commonly referred to as a “fever attack,” most people experience radical changes in their lives. This includes quitting tobacco and drug use, exercising regularly, adopting a healthier diet, taking various medications to reduce risk factors, and various other lifestyle changes. There may be cases.

The psychiatrist who made me fully recover in 2008 called psychotic episodes “brain attacks” because they damage the structures of the brain, similar to a heart attack that destroys part of the myocardium. (4, 5). That’s why schizophrenia patients, with the help of a psychiatrist, must do everything in their power to avoid new “brain attacks” and avoid further brain damage that could lead to functional impairment. (6).

I am familiar with the anti-psychiatry movements to which people with schizophrenia are invited and sometimes even pressured to stop taking their medications. But I will never go off antipsychotics again. Today, I understand the dire personal consequences of risking another “brain attack.”

If I had lived in the United States 100 years ago, I would probably have spent my entire adult life confined to an institution. But today, thanks to antipsychotic drugs, many people like me who would otherwise have been permanently institutionalized are freed and able to live lives filled with joy and purpose.

It is essential to educate patients about the risk of a “brain attack” that can occur if antipsychotics are discontinued. For me, the realization that I would definitely end up going back to the hospital if I stopped taking the medication was a life-changing realization and a milestone.

I am grateful that I do not live in a time in history when there was little hope for recovery. Today, I want to remind more people living with schizophrenia that antipsychotics not only enable them to live outside of the hospital, but also to help them achieve sustained recovery and work, school, volunteer work, and meaningful work. I hope that people will understand that it is possible to make a new start in relationships, etc. Going through clinical trials to find the best drug with the least amount of side effects can be discouraging and difficult. But for me and countless others, it was incredibly valuable.

I am grateful that, thanks to effective medication and faithful treatment compliance, I now have a wonderful new life.

Henry A. Nasrallah, MD, is Professor Emeritus of Psychiatry and Behavioral Neuroscience at the University of Cincinnati College of Medicine.