(Aug. 7, 2018) This week's Research Weekly is written by Bethany Yeiser, author, mental health advocate and founder of Comprehensive Understanding via Research and Education into Schizophrenia (CURESZ) Foundation, an organization dedicated to increasing public education and awareness to schizophrenia and addressing the severe under-utilization of the antipsychotic medication, clozapine.
Hers is a valuable first-person perspective with relevant statistics on the use of this drug treatment. Here is Bethany's testimonial:
On March 3, 2007, I was picked up by police and taken to an emergency room for psychiatric evaluation.
Paranoia had driven me to sleep outside, alone, for over a year. At the time, my former life as a biochemistry student and violinist had faded into a distant memory. Within 24-hours of being picked up by police, a doctor prescribed antipsychotic medication.
Risperidone greatly helped with my psychosis, including my delusions, voices and hallucinations, but I was unable to perceive that anything had changed.
Prior to being involuntarily admitted to a psychiatric ward, I spent six-months following command hallucinations which compelled me to act strangely. Suddenly, I would walk to the right and then abruptly to the left or look up and scream at the sky. The voices in my mind insisted that I sleep outside.
The antipsychotic medication risperidone eliminated the command hallucinations. But the voices in my mind continued to be louder than ever, screaming and swearing at me, making irritating noises like a painful stimulus. The voices prevented me from reading normally.
Then, I began to suffer from the medication's severe side effects, including restlessness, weight gain, excessive salivation, and anhedonia, or the inability to feel pleasure. Risperidone left me in a sedated state, like a zombie. I slept 16-18 hours a night.
For many people, risperidone and other newer antipsychotic medications work wonders to address the symptoms of schizophrenia and bipolar disorder. I met a full time pre-medical undergraduate student who took risperidone, which enabled him to thrive in his degree program. His experience was very different from mine.
After less than a month on risperidone, I discontinued it. I believed I did not need it and was suffering from intolerable side effects.
My second psychotic episode occurred a few weeks later. This time, I broke a valuable violin. 911 was called, and I was readmitted into a psychiatric hospital.
During my second hospitalization, I gained insight into how schizophrenia was affecting my life, and I developed a vision to regain a quiet mind. But though the risperidone was helping, it was clearly not the drug for me.
I tried paliperidone, aripiprazole, ziprasidone, and olanzapine, but with little symptom relief. The voices broke through. My psychiatrist referred to my symptoms as "residual voices." It seemed as though nothing would take them away.
I became desperate for a treatment or medication that would restore my personality, my happiness, my ability to read, and my future.
After twelve months of failed medication trials, my new psychiatrist introduced me to an older medication called clozapine, which some people refer to as a "wonder drug." He cautioned that the drug could cause me to gain 50 or even 100 pounds. But despite that risk, I knew I had to try it.
Over the next few weeks, as my physician gradually increased my dosage of clozapine, the residual voices became quieter. Once again, I was able to read, study, and retain the information I read. My mind became clearer than it had been in years.
Clozapine was the "miracle" I had been waiting for.
My recovery was not like a light switch. It progressed over a period of weeks and months. At six months, I was going out into the community and making friends. At one year, I made plans to return to college.
After 18- months, I enrolled in a university class, genetics, earned an A grade, and went on to graduate. Two years later in 2014, my memoir "Mind Estranged" was published.
Today, I have been in full recovery without relapse for over ten years, thanks to clozapine. I would compare myself to a person with diabetes taking insulin, enjoying a productive and normal life. I feel slightly sedated at times and I sleep a few more hours every night, but I have left the symptoms of schizophrenia in my past.
I only wish I had tried clozapine sooner.
Unfortunately, clozapine is underutilized in the United States. It is estimated that while 20-30% of persons with schizophrenia qualify for a clozapine trial, only 5% are prescribed the medication. Because of rare side effects and frequent mandatory blood tests, many clinicians do not prescribe it at all.
Today, in addition to the one million individuals who are untreated, there are half of a million people in the United States with schizophrenia who are taking medications but still doing very poorly, as I did before clozapine. Many of them suffer severe side effects on medications that do not fully take away their voices or hallucinations and leave them in a state of partial recovery. Many of these people have never even heard of clozapine-- this affordable, generic, older medication which has potential to bring even the sickest people into full recovery.
In partnership with my psychiatrist, Henry Nasrallah, MD, who prescribed clozapine for me, I established the CURESZ Foundation in 2016. One of the highest goals of CURESZ is to promote the use of clozapine, especially in treatment resistant patients like me.
The CURESZ Foundation has assembled a panel of psychiatrists from across the United States and in 12 countries that have experience prescribing clozapine. We hope that people struggling with schizophrenia will access our online Clozapine Experts map, to locate a physician in their area who can determine if a clozapine trial is appropriate for them.
It is essential that every person diagnosed with schizophrenia be made aware of all available treatments, including clozapine. Typically, clozapine is an option for individuals who are not experiencing recovery, despite trials of at least two different antipsychotic medications. I wish I had been told on day one that clozapine was an option if other medications did not effectively address my symptoms.
When I look back on March 3 of 2007, the day I was first committed to a psychiatric hospital, I remember the confusion, the fear and the pain. It was one of the most difficult days I have ever experienced. But it was also the best day, a turning point, when I took my first steps to recovery. It is the day I am most grateful for.
by Bethany Yeiser