Mental Hell-Care: My Sibling’s Story
By: Mad In America
Tags: Siblings, Mental Health Treatment, Psychiatry, Disability, Benzodiazepines

By Maria Mangicaro

“The Benzo Crisis,” which aired on the October 6, 2019, edition of CNN’s This Is Life With Lisa Ling, seemed like the perfect source of information to bring along to yet another family meeting advocating on behalf of a family member caught up in what is best described as the U.S. mental hell-care system. As a bonus, Ling’s husband, Dr. Paul Y. Song, wrote an excellent companion article from a prescriber’s perspective after learning about the gross misuse of benzodiazepine drugs via his father-in-law’s personal experience.

A quick trip to the public library before they closed allowed me to print off enough material to present the treatment team what I thought would be clear-cut evidence suggesting my family member was suffering from catatonia after benzodiazepine withdrawal and to make a simple request: Please provide my sibling the same treatment that Lisa Ling’s benzo-dependent father received to help them taper off of the benzo they had been on for more than six years.

The family meeting did not go well, and I ended up walking out very upset and disturbed by the comments the doctors made. I was told by one: “You don’t know what you are talking about. There is no such thing as Benzodiazepine Withdrawal Syndrome. I don’t know where you are getting your information from. Psychiatric drugs are safe because the FDA says they are safe, and I trust the FDA.”

Refusal to Help

At this point, it was obvious how much damage the long-term use of psychotropic drugs had done to my sibling. (To protect their privacy, I will refer to them as Pat and use the pronouns they/them/their.) Just four years earlier, Pat had been physically active, spent years studying martial arts, and had a toned, muscular physique. Now, they looked like a starving Holocaust survivor.

Pat’s doctors refuse to believe psychiatric medications have caused Pat any harm. Over a three-year period, however, Pat’s insurance companies have paid out more than one million dollars to warehouse Pat and to provide “treatment” that has caused complete disability.

Sadly, if someone had a dog that was being poisoned with a neurotoxin to the point that the dog could no longer eat, drink, or stand; that it was so malnourished and dehydrated that its ribs and bones were sticking out; that it had not been bathed or groomed in months; and that it was being electrocuted to try and get it to move, I could call the police and have the owner arrested for animal abuse. This scenario is exactly what I witnessed happen to my sibling under court-ordered psychiatric treatment-except there was no way to get them help or to make the torment stop. The current paradigm of “care” sanctions coercive psychiatry, in which individuals considered “mentally ill” can be forced to ingest dangerous, neurotoxic substances because a psychiatrist has decided it is in their best interest.

Pat’s Medical History

Pat is 61 years old, a nonsmoker and nonalcoholic with no prior history of severe psychiatric illness, illegal substance abuse, or cognitive impairment. Six years ago, pain from chronic, degenerative neck disease began interfering with Pat’s ability to perform their duties as a full-time manager at a busy chain store. To help Pat cope with situational anxiety, Pat’s primary-care physician made the grave mistake of prescribing 1mg of the benzodiazepine Ativan three times a day.

Ativan (lorazepam) is a federally controlled substance that causes physical and psychological dependence. This drug has numerous harmful side effects including executive functioning deficits, anxiety, memory loss, agitation, hostility, aggression, rage, muscle weakness, sedation, and confusion. The manufacturer of Ativan warns against prescribing their product for more than two to four weeks, admits there are numerous dangerous side effects, and that the effectiveness of using Ativan long-term is unknown.

After Pat experienced what were consistent with adverse side effects from Ativan, their doctor began prescribing an antidepressant on and off over a two-year period leading up to Pat’s worsening condition. Pat’s doctor continued to prescribe Ativan concurrently, never recognizing that Pat had developed a dependency and needed to be tapered off the drug. Pat’s doctor also failed to test for possible underlying causes of anxiety. I begged the hospital to run blood tests, and Pat was later found to have extremely low vitamin D levels and extremely high ferritin levels, both considered contributing factors in anxiety symptoms.

During July 2016, Pat became extremely confused and turned to family members for emotional and financial support, telling us that the medications “are making me crazy.” They also experienced a constant feeling of suffocation, which they believed was being caused by their pre-existing obstructive sleep apnea (but was most likely linked to the Ativan). Since that time, my family members and I have acted as healthcare proxies and actively advocated on Pat’s behalf to the doctors and hospitals that provided treatment.

By August 2016, Pat could no longer tolerate the psychiatric drug side effects, abruptly discontinued all the drugs, and began seeking medical attention at local emergency departments for what we now know were symptoms consistent with benzodiazepine withdrawal. Although the hospitals had access to Pat’s prescription history, no doctor ever made the connection between drug withdrawal and Pat’s symptoms, and thus their treatment was focused on the existing diagnoses of anxiety and depression. In other words, they considered him to have worsening mental illness.

Forced Commitment

Each visit to an ED led to admissions to psychiatric units where the use of polypharmacy ran rampant. Pat ended up on a cocktail of psychotropic drugs, chronically ill, unable to live independently, and in need of 24-hour care. Eventually, Pat ended up under court-ordered commitment at a New York State psychiatric facility for 28 months straight at a cost of over $30,000 per month. During the stay, Pat was forced to take more than a dozen different medications and experienced horrific adverse reactions.

Psychiatric drugs prescribed to Pat during the forced psychiatric hospitalizations included Lorazepam (Ativan), Benztropine, Buspirone, Gabapentin, Depakote, Haloperidol, Lamotrigine, Venlafaxine, Risperdal, Ritalin, Wellbutrin and Effexor XR. At times, he was given nine different drugs at once.

Known potential adverse effects from these drugs include but are not limited to: confusion, aggression, hallucinations, thoughts of suicide, unusual changes in mood or behavior, psychosis, mania, depression, insomnia, muscle weakness, apnea, difficulty breathing, droopy eyelids, vision changes, impaired memory, impaired judgment, coma, respiratory depression, homicidal ideation, and sudden death. Synergistic interactions caused by polypharmacy (the prescription of multiple drugs at once) are unknown and impossible to predict.

Since being prescribed psychotropic drugs, Pat appeared to experience problems including but not limited to: anxiety, agitation, hostility, aggression, rage, insomnia, hallucinations, confusion, thoughts of suicide, psychosis, mania, depression, muscle weakness, severe apnea, difficulty breathing, droopy eyelids, impaired memory, impaired judgment, respiratory depression, hyperammonemia, dehydration, homicidal ideation, hyperferritinemia, malnutrition, starvation, muscle atrophy, brain atrophy, and catatonia.

While under the care of the state psychiatric facility, Pat suffered from neurological side effects causing severe muscle rigidity to the point of paralysis and was unable to eat, drink, or move without assistance. Pat suffered dehydration and experienced extreme weight loss of over 70 pounds. Pat’s physical health, personal hygiene, cognitive abilities, and quality of life at the facility greatly declined to the point of needing several emergency hospitalizations for treatment of a head injury, catatonia, dehydration, malnourishment, and extreme muscle rigidity. Pat’s physical appearance changed so drastically that Pat is now unrecognizable to long-time friends and family members.

Two neurologists who consulted on Pat’s case in November of 2018 stated that Pat was overmedicated and recommended a “ medication washout,” where all psychiatric medications would be tapered and treatment would focus on pain management for the chronic neck pain that Pat had originally complained about.

The psychiatrists at the state facility chose to ignore the neurologists’ and Pat’s own request to taper off of all medications. Instead, these psychiatrists coerced Pat into taking more psychiatric drugs with a threat of obtaining a court order if they did not.

Worsening Condition

By July 2019, Pat’s condition was so severe that emergency medical attention was needed. At a regular hospital, Pat was treated for malnutrition, dehydration, and catatonia. Pat was administered IV fluids, electrolytes, and intramuscular Ativan and tapered off of all medications except for the Ativan. Within just two weeks, Pat’s condition improved substantially to the point of being physically mobile and ready to be released to live at home again. Unfortunately, an existing court order forced the hospital to transfer Pat back to the psychiatric facility. Within weeks of returning to the facility, Pat decompensated to the point of needing emergency treatment for dehydration, malnutrition, and muscle rigidity several more times.

In October 2019, psychiatrists at the state facility sought to keep Pat court ordered in their custody for an additional six months of continued treatment for “depression.” Because they considered Pat treatment-resistant and now suffering from catatonic depression, the psychiatrists were seeking to forcibly treat Pat with either electroconvulsive therapy (ECT) or to experiment with the drug ketamine. My family successfully petitioned the court for Pat’s release based on expressing fear for Pat’s life if the court-ordered continued treatment at the state-run psychiatric facility.

Pushing for Change

Upon Pat’s release from the psychiatric facility, we had them admitted to two other hospitals because their muscle stiffness was so severe it looked like rigor mortis was setting in; I had to pry Pat’s mouth open and use an eyedropper to give them water. At the hospital, I begged doctors to assist Pat in tapering off of Ativan. Unfortunately, Pat’s condition is so severe that doctors refuse to recognize the damage done by Ativan dependency and will only diagnose Pat as catatonic. Because Pat needs medical help and because ECT is considered an effective treatment for catatonia, Pat was stuck in a Catch-22. Our family had no choice but to consent to having Pat undergo a series of ECT sessions.

Neither Pat nor our family members wanted any of this. I have talked to Pat’s doctors until I am blue in the face, I have written dozens of letters and filed complaints with three hospitals, the New York State Office of Mental Health, and the Citizens Commission on Human Rights (Finding an attorney who will assist in a case involving psychiatry is near impossible, and CCHR is the only organization I know of that has a network of attorneys involved in mental health cases). I even sent copies of Anatomy of an Epidemic by Robert Whitaker, Drug-Induced Dementia by Dr. Grace Jackson, Letters from Generation Rx by Kevin Miller, and Dead Wrong: How Psychiatric Drugs Can Kill Your Child to doctors who were involved in Pat’s treatment. The doctors turned a blind eye to this information.

As Pat’s case and the cases of many other psychiatric patients demonstrate, under our current paradigm, even with strong advocates and family support, it is often impossible for individuals who experience adverse psychiatric reactions to medications to receive an accurate diagnosis and assistance with safely tapering off harmful psychotropic drugs.

There is a flicker of light at the end of the tunnel, however. After two months of giving Pat shock treatments, their doctors-seeing that the procedure was not helping-recently agreed to discontinue them and to assist us with getting Pat to a temporary rehab facility that will focus on nutrition, physical therapy, and cognitive remediation. We will also be able to take Pat out of the facility to try alternative therapies on an outpatient basis. While Pat’s condition has improved only slightly, Pat has expressed interest in taking a vacation to Florida and that gives us hope.

Looking Ahead

While Pat’s case may seem extreme, it is certainly not rare and raises many troubling issues. One is how easy it is to be slapped with a psychiatric diagnosis that can lead to grievous bodily harm. When Pat first sought medical help for chronic pain issues, they were experiencing normal situational anxiety; Pat did not have a “mental illness.” They were initially diagnosed and treated for a psychiatric disorder by a primary-care physician based on a quick assessment using questionnaires.

Another issue is the failure of the courts to protect the rights of those labeled “mentally ill” by sanctioning involuntary psychiatric treatment. Pat’s psychiatrists obtained judicial support for treating my sibling as they saw fit and with no oversight. Coercive treatment allows psychiatry to act as an unregulated power base of authority, and Pat’s case shows how our court system puts blind faith into this authority while ignoring the harm being done by psychiatric treatment.

Pat is now considered permanently disabled; their condition is consistent with the long-term, forced use of psychiatric drugs. I hope that by sharing my sibling’s story, the courts will give more consideration to the rights and needs of individuals labeled mentally ill before ordering them into psychiatric treatment.