As I sit on the couch in the cozy living room of my home, I hear a man’s low voice singing opera. It’s just far off enough that I can’t make out the lyrics. I also heard it last night while lying in bed.
What I’m hearing isn’t really there. It’s just the spirits in my head.
More than two decades ago, I was diagnosed with bipolar disorder following a brief stay in the psychiatric ward of a hospital in the Hudson Valley. That involuntary hospitalization came at the beginning of what should have been my last semester in college. I was paranoid and delusional, imagining that a cult that was out to get me.
At the time, I believed I was having a spiritual awakening. Some of it was, in fact, spiritual. But I was also hearing and seeing things that weren’t there.
It took years for my psychiatrist and me to find a medication that quieted the spirits in my head yet left me capable of not just functioning but excelling in my career as a publicist, socializing with friends, and carrying on a pretty normal life. Many people with bipolar disorder aren’t so fortunate — unable to work because of their symptoms and dependent on Social Security disability insurance.
Before arriving at the pills that have saved me, we tried a number of medications that didn’t let me live a comfortable and productive life. One made me unable to discern very hot water from very cold water. Another made me so tired I routinely overslept and had to make excuses for coming to work late. I worried that if I told my boss the truth, the stigma of mental illness would damage my career.
The magic medicine was 1.5 milligrams of a drug called haloperidol, taken once a day in the evening. Discovered in 1958, the medication is seen by many as an “old school” outdated antipsychotic associated with the barred windows and dim hallways of decades-old psychiatric hospitals. Yet haloperidol offers some of us facing mental illness exactly the amount of quiet we need to get by.
In fact, author Esmé Weijun Wang shares in her bestselling book “The Collected Schizophrenias” that she has treated her diagnosed schizoaffective disorder with haloperidol.
A few years ago, when I temporarily parted ways with my longtime psychiatrist due to insufficient health insurance, I came across a written description of schizoaffective disorder. It sounded like me. I suggested to the nurse who was prescribing my medication at the time that I might fall under that diagnosis, rather than bipolar disorder. She agreed that it sounded like a potential match, but I later let go of my desire to further define what it was that caused my symptoms. A definition would not help me. But haloperidol did.
One-and-a-half milligrams of haloperidol — a single 1-milligram pill and half of another — taken once a day doesn’t seem like a lot to ask for my mental health. But in December 2018, my local pharmacy informed me of a shortage of the 1-milligram pills and said they were “back ordered” with the supplier. I went to another pharmacy, this one a large chain, to have my prescription filled. Then it, too, ran out. In some fancy footwork, my psychiatrist next prescribed me three .5-milligram tablets and my supply was replenished. Then those were gone. I finally discovered that a local Walmart had stockpiled some of the 1-milligram pills, so we moved my prescription there.
I phoned the company that made my haloperidol to try to find out more, but there was no information available. I was only told that the shortage, which was supposed to end in March, would go on until April. In April it became May. The FDA’s drug shortages database now lists all dosages of haloperidol tablets as “Currently out of stock; Estimated re-supply: June 2019,” with the reason for the shortage given as “Other.”
Each mysterious delay has planted a seed of fear in my heart. At age 47, I have depended on these pills for most of my adult life. They are my secondary oxygen. In quieting my demons they have permitted me to live what you might call a normal existence. I find it hard to imagine what life would be like without them. Each night as I peer into my pill bottle, watching the number of tablets dwindle, I worry about what will come as the spirits in my head keep singing.
Walmart has now run out of haloperidol, so my psychiatrist and I are trying to track down a liquid form of the medication in a 2-milligram dosage. If that isn’t available, my doctor will certainly find an alternative for me. But at what cost? What will the side effects be? I am comfortable with haloperidol. It is part of my routine. I know where the medicine ends and I begin.
I’m surely not alone. Sometimes I wonder about other people like me who are watching their haloperidol bottles grow empty, uncertain of what the future will bring, or what those who weren’t able to track down a pharmacy with a large supply of haloperidol have done.
Much as I don’t want to, I must face the fact that I might run out of haloperidol before it comes back on the market. I am confident I won’t experience the kind of eruption of my subconscious that happened in college. There may be a bumpy road ahead of me, filled with aggravating side effects and unknown outcomes, that I will have to somehow take in stride. I’ll also miss the haloperidol. It’s become something of a trusted companion, the reassuring friend you want to hold onto forever.
Maya Gottfried is the author of “Vegan Love: Dating and Partnering for the Cruelty-Free Gal” (Skyhorse) and books for children including “Our Farm: By the Animals of Farm Sanctuary” (Knopf) and “Good Dog” (Knopf).
My daughter is also bipolar and is on a monthly injection of haldol . Prior to that was only on tablets in hospital. Now, post hospital- weaning off tablets 1 mg twice a day. It brought her out of a long psychotic episode but she’s extremely tired. Hoping this will subside for her once she is done with the tablets. Having to wait a day for shipments to come in. Was wondering why. Anyway, wasn’t sure if you knew of the injection which at 23, she needs due to compliance issue.
Other new meds had worse side effects than haloperidol
Barry, the newer gens allegedly do not, particularly with the elderly. I have never taken any so cannot speak from experience. It did totally wreck the mind of a young person with paranoid schizophrenia that I knew though. He’s got far worse delusions and behavior than before.
This is a first generation deadly pos that should go the way of the frontal lobotomy.
There are much improved second and third gen anti-psychs without as severe side effects.
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