The Hopkins Doctor Diagnoses Me: A Cautionary Tale

Mad in America recently published one of my poems that deals with mis-diagnosis and a careless rush to judgment. In “The Hopkins Doctor Diagnoses Me,” I tell the story of how I acquired a diagnosis of bipolar II and how that diagnosis resulted in an unnecessary hospitalization in a psychiatric ward.

Back in the 1990s, I had felt depressed for a couple of years and had seen a few doctors for treatment–which consisted of trying numerous psychiatric drugs without any relief. One of my doctors got so frustrated that he threw my file across his office and said, “I’m sending you to Hopkins. They deal with people like you all the time.” The doctor never revealed that antidepressants can often worsen a depression or even cause a state of chronic depression that is pretty much untreatable. (Giovanni Fava wrote about this in 1994, when I was experiencing depression)

Several months later, a doctor at Hopkins finally saw me for about an hour. I’m guessing he’d read my file and seen all of the drugs I’d taken, none of which were helping. He noted that twice before when I’d felt depressed, I’d gotten relief for my symptoms from an older drug called Elavil.

And because I reported that I “felt like a party girl” for a couple of days once the depression lifted, the Hopkins doctor diagnosed me as having bipolar II–a milder form of bipolar disorder. He refused to listen to me when I enumerated the symptoms I didn’t have–insomnia, overspending, and grandiose thoughts among others.

I tried to explain to the Hopkins doctor that I had a higher than average “happiness level” and frequently felt upbeat and energetic. But he put that information down to confirming his diagnosis rather than listening to the truth of my life.

He told me that sometimes antidepressants can “reveal” an underlying bipolar disorder, which sounded like a medication effect to me, not an actual illness. And he never told me that research had shown that some people who take antidepressants for depression alone can begin to experience cycles of depression and mania.

Grab-bag of antidepressants and pain meds

And the problem with his overly simplistic diagnosis is that every other doctor who read my records saw me as someone with bipolar II disorder and dismissed my concerns and explanations. Worst of all, they continued to prescribe me unneeded mood stabilizers.

Later, when I was hospitalized for mania–which was due to taking prednisone for three weeks–the doctors there also dismissed my explanation of having a reaction to prednisone because of my bipolar II diagnosis.

A needless hospitalization could have been avoided if the doctors had done two things: listened to me when I described my upbeat personality and taken into account the very common effect of mania due to prednisone. And the years of taking unnecessary and mind-body altering mood regulators could have been totally avoided.

I’m one of the lucky ones–I got off of antidepressants, mood regulators, anti-anxiety drugs and pain medication in the early 2000s and haven’t had any recurrences of depression. And I’m glad that my negative experience led me to reading and research that I can share with others.

Anatomy of an Epidemic by Robert Whitaker is a good place to begin if you want to know more about psychiatric drugs and their effectiveness. You may be as shocked and surprised as I was by what you find.

Homage to My Mother

Dorothy Wetzler Bracken designed and painted this dress as a student at Maryland Institute College of Art in the 1930s. Although she graduated in 1935 with a degree in costume design, she was never able to pursue her artistic talents. Mom kept her dreams to herself until the late 90s when I discovered a portfolio of her designs and she confessed, “I always wanted to be a fashion designer.”

            Dorothy’s story could have been a happy one—she married, had many friends, and eventually had five children. “I was thrilled every time I found out I was pregnant,” she often told me. Yet, postpartum depression plagued Mom following nearly every birth. After her fifth child arrived, Mom was hospitalized, received electroconvulsive therapy treatments, took copious amounts of psychiatric drugs, but sadly, she never recovered.   

            Because I always managed to recover from my own depressions, I puzzled over Mom remaining trapped in chronic depression for over 40 years. Until I found Dad’s collection of old insurance and medication records, newspaper and magazine articles, and letters to doctors stashed in my sister’s attic. 

            Those records told the story of my father’s futile attempts to get help from Mom’s doctors, most of whom only saw her twice a year despite a suicide attempt, hospitalizations, accidents (probably due to overmedication), and many electroconvulsive therapy treatments. Most troubling of all were the lists of Mom’s prescriptions that Dad had saved: Thorazine, barbiturates, antidepressants, amphetamines, and benzodiazepines. 

            Mom’s doctors were practicing polypharmacy: giving a patient more than one drug to treat a condition. The same thing that happened to me with opioids in the late 90s; the same thing—with different drugs—that’s happening now. And oftentimes the chemical load becomes so great that it’s impossible to tell what’s actually going on for a patient vs. the interactions of the medications. Now I know at least one reason Mom never got well. 

There’s Healing in Your Story

When I went through training in journal and poetry therapy, one of the mantras threaded through our work was “Change your story, change your life.” We spent a lot of time rewriting stories and talking about how shifting the narrative could result in a more positive outcome.  That’s why I wrote my post for Mad in America about overmedication and recovery–I couldn’t change my mother’s story, but I was determined to change mine.

The post details my story of overmedication and its harm, along with my  mother’s story. When I found my father’s records about her illness, I was shocked to see that Mom received very little therapy over the years, but year after year, psychiatrists prescribed barbiturates, amphetamines, Thorazine, and antidepressants. People tell me that wouldn’t happen now–but my story, 35 years later, parallels Mom’s. Mom and I suffered needlessly because of overmedication, and I hope to be a voice for change so others don’t experience the same fate.

I hope you will read my post, “The Answers in the Attic: A Mother-Daughter Story of Overmedication and Recovery.”

Reblogging: Are You Better Off Medication-Free?

A few weeks back, I posted my story of being overmedicated and getting off of pain medication and psychiatric drugs.  So when I read the blog post below, I thought it was a good follow-up to my story. I, too, was a victim of polypharmacy, which is why this post resonated with me. What is polypharmacy?  Here is a definition that is included in Dr. Brogan’s post below:

Polypharmacy is ambiguously defined as the prescription of 2-11 or more medications, simultaneously, 6 encompassing more than half of the American population. 7

For those of you who are interested in exploring this topic further, Dr. Brogan includes links to a lot of good resources. If you what to read my story of overmedication, here  is the link to the blog post–How Methadone Saved My Life–and if you prefer to listen,  here is a link to the the audio of my performance at Stoop Stories.

Deprescribing: Are You Better Off Medication Free?

I know that strategic medication tapering can be a ticket to an authentic experience of yourself. I get feedback like this, every week:

Is Gloria some kind of freak anomaly of someone who could possibly feel better off medication? You can see that part of her process was shifting out of a mindset that she was fundamentally broken, in need of medication as some sort of normalcy prop. I believe deeply in personal reclamation through a rewriting of this story of the broken self. But what if medications actually contribute to a poorer quality of life, not because of their metaphysical role in self-identity and outsourcing of power, but simply because of their toxicity, particularly in combination?

The Problem With Pills

We know that it’s not a matter of opinion, (despite what the NY Post would have you think!), that medications – properly prescribed – are the third leading cause of death in this country. 1 This does not include the quarter of a million deaths from medical errors 2 3and overdose, which in 2016 killed more than the entire Vietnam War. 4

These reasons and more are why I was delighted to read Poly-deprescribing to treat polypharmacy: efficacy and safety 5 in the journal Therapeutic Advances in Drug Safety. This longitudinal, prospective trial addresses the major symptom of our fragmented, specialist-driven, the left-hand-doesn’t-know-what-the-right-is-doing-health care system: polypharmacy.

Polypharmacy is ambiguously defined as the prescription of 2-11 or more medications, simultaneously, 6 encompassing more than half of the American population. 7

The author, Garfinkel, states that the epidemic of polypharmacy is driven by:

(1) the increased number of doctors/specialists and clinical guidelines; (2) the lack of evidence-based medicine (EBM) and knowledge regarding drug–disease–patient interactions in polymedicated; (3) barriers/ fears of medical doctors to deprescribe.

His study was conducted on patients >66 years old taking >6 prescriptions (never mind the 666!), and this intrepid clinician endeavored to offer them the opportunity to discontinue more than 3 of their meds, strategically assessing quality of life parameters.

Getting Free, One Med At A Time

After approximately four years, Garfinkel found that: Overall, 57.4% of PDP patients/ families reported an improvement as early as 1 month after the intervention. In 82.8% health improvements occurred within 3 months of the intervention and among 68% improvement persisted for more than 2 years.

Like the parable of the blind men and the elephant, feeling and describing only their part, neglecting the comprehensive appreciation of the whole animal, Garfinkel states:

…all too often specialists who treat patients ‘by their book’ have but one aim, to deal with their one aspect of the disease spectrum; no in depth consideration of the ultimate effects of medications they prescribe combined with other consultant’s interventions on patients’ overall welfare.

He also references the domino effect of prescription toxicity leading to new diagnoses and new medications, stating:

“The problem is further aggravated due to ‘prescription cascades’ where symptoms resulting from ADEs are perceived as representing ‘new diseases’.”

So, it turns out that when real life studies assess the effects of medications, stopping them – several if not all of them – can lead to a better quality of life.

I love his hopeful message, in conclusion:

Conclusions: This self-selected sample longitudinal research strongly suggests that the negative, usually invisible effects of polypharmacy are reversible. Poly-deprescribing] is well tolerated and associated with improved clinical outcomes, in comparison with outcomes of older people who adhere to all clinical guidelines and take all medications conventionally. Future double-blind studies will probably prove beneficial economic outcomes as well.

The study doesn’t particularly reference psychiatric medications (in fact, he references starting them during the study window), which, in my opinion, are the most difficult chemicals on the planet to detox from. While I acknowledge that the physiologic relief from discontinuing a medication may, itself, result in near-immediate improvement in quality of life, psychiatric medication taper seems to ask something more of patients intending for a medication-free life. The taper process asks for healing. Physical, emotional, and spiritual…and this healing does more than improve quality of life…it sets you free.

References:

  • 1 https://www.ncbi.nlm.nih.gov/pubmed/25355584
  • 2https://www.hopkinsmedicine.org/news/media/releases/study_suggests_medical_errors_now_third_leading_cause_of_death_in_the_us
  • 3 https://www.ncbi.nlm.nih.gov/books/NBK225187/
  • 4 https://www.vox.com/policy-and-politics/2017/6/6/15743986/opioid-epidemic-overdose-deaths-2016
  • 5 http://journals.sagepub.com/doi/abs/10.1177/2042098617736192
  • 6 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5635569/
  • 7 https://newsnetwork.mayoclinic.org/discussion/nearly-7-in-10-americans-take-prescription-drugs-mayo-clinic-olmsted-medical-center-find/