Killer Brain Candy: One Woman’s Odyssey Through Benzodiazepine Addiction and Withdrawal or How Chicken Little Got Her Head Crushed

So. Who I was: It’s September of 2007 and I’m preparing to get married. I’ve got a job with a nice title and health benefits and they actually pay me to do what I love. I get to write. I’m the Associate Editor and Poetry editor of the Wasatch Journal, an upstart young magazine that serves the Intermountain West. I manage six departments of the magazine, work with freelance writers in those departments and write at least two features per issue. And despite the fact that the publisher is a Madoff character, making the money flow perpetually uncertain, we get through over two years and the magazine seems to be thriving. I interview then-governor Jon Huntsman, Jr. I interview a Russian nanotechnologist whose father was nearly executed by Stalin in the Doctor’s Plot of 1947. I write about racecar driving and a hustler of Zen skiing clinics. I write like crazy and I and start winning awards. All this, and I’m in love with a man who could rival Naked Chef, Jamie Oliver on several counts. We live together in his run down man-shack, but I’m certain that we’ll upgrade as soon as things stabilize at the magazine. Things are good. I am more than content. I am in love with my life. And as a side note, I think it’s important to say that I’ve never been addicted to anything, never had any physiological or psychological dependencies on anything … besides perhaps rock climbing, yoga and writing large volumes of poetry.

The “I do’s” take place September 22^{nd,  of} 2007. By mid October – I know. It seems impossible, but I know: I’m pregnant. I’m 37 and have been on birth control for over twenty years. It’s a little sudden, but I do enjoy approximately ten days of married life before the egg and sperm begin their tango. My son Cassius is born in late June of 2008. And the love cocktail that they talk about: the prolaxin and oxytocin that swirl in the body, making the very scent and movement of your child pure, visceral ecstasy? I get a big dose. It’s love at first sight. My son Cassius is, to me, perfect in every way. Five days later, after a sudden, desperate, two-in-the-morning run through fluorescent halls to get Cassius to the Neonatal Intensive Care Unit, the doctors confirm a diagnosis of Down Syndrome. Cassius had, they told us, no heart issues, no intestinal issues, nothing of concern beyond a need for just a bit more oxygen. Six weeks of oxygen to be precise. But … we didn’t care. We don’t care. To us, Cassius is just a boy with an extra chromosome and a different take on the world. We were in love. All of us.

Spiral forward to late January 2009. Cassius is about six months old. He’s started physical therapy and he’s sitting up. He’s delighted with bananas and often laughs suddenly, his eyes and mouth growing wide and wider,  as if the air itself was rapturous. I’ve returned to work part-time and am pumping regularly with an industrial hospital pump that I’ve made highly efficient with specialized bondage mommy gear. I strap on my special bra, equipped with large holes for the nipples, and pump my breasts simultaneously. The bondage gear allows me to pump, hands free while I edit stories from home on my laptop. I crank out up to 64oz of liquid gold per day. At this point, I’m a pumping machine. I gain a freezer full of milk, edit my stories and lose only one MacBook to breast milk spillage.

On the last Friday in January, I prepare for my regular Friday morning yoga class. En route, I make a surprise detour. To the grocery store. To buy two pregnancy tests. I hadn’t planned this. It seemed impossible. I was 38 and I was still breast … pumping. But something made me pull over, buy the tests, walk into the lavender scented bathroom at the yoga studio and pee. Test number one: a blue plus. Test number two: a blue plus.  No doubt about it human chorionic gonadotropin (hGC), the hormone that signifies without a doubt that there is a yet another tango happening. I had a passenger aboard.

THE DARK

Two weeks into my pregnancy, I wake with a start. Imagine a scene from Quentin Tarantino’s 1994 blockbuster film, Pulp Fiction: Uma Thurman is lying on the floor of some junky apartment. She’s unconscious, frothing at the mouth. Someone screams that she’s overdosed. John Travolta has no recourse but to take a syringe the size of a kosher hot dog and plunge a needle full of adrenaline into her heart. I surge up, gasping, my heart beating wildly. I stumble out of bed and pace. I sit on the couch, counting my breaths, “One, two, three, four.” I don’t sleep. I can’t. This is the beginning of what turns out to be a 4th of July of hormonal fireworks in my body, the result of which is pathological insomnia. It lasts for approximately sixteen months. Sixteen months of fighting for an hour of sleep, maybe two. Finally, with a combination of Ambien CR and fifty milligrams of Benadryl, five hours of sleep a night. And it was so horrific, so interminable, that the only way I’ve been able to write about it is by distancing myself – literally. What follows is a prose poem I wrote maybe a year after the insomnia had abated. It’s written in third person – as you, as someone else. Because I still can’t easily talk about it, or write about it, as me.

The insomnia comes the summer of her second pregnancy. It starts as a persistent and unexplained awakeness that hums like a hive under the skin. Adrenaline soaks the muscle of the heart.  Sleep is impossible. She sits. She watches the night destroyed.  She closes her eyes, imagines each length of nerve vibrating like a thousand bees, a thousand stings. She tries teas and meditation. She tries the history channel. Still, the night rises and grows pale in front of her. Small universes in her body begin to break apart. 

At 3am, he finds her on the porch swing. It’s the third consecutive night with no sleep. She pounds her head against his chest. He folds his long arms around her and the sobs come in great heaving gasps. Just knock me out with a two by four, please she weeps. I’m being annihilated.

There are enough signs now. After two weeks, she is a danger to her boy child. She cannot stand his noise, can’t stand the sight of his diapered bottom as he crashes through the kitchen cabinets. She hallucinates a ferocious black dog tearing after her. She hallucinates tangles and dark shadows. She could throw her child into the dumpster. She could throw him out into the street. Little diapered bottom, little soft belly. She steps outside, pounds the pockets of her eyes. A blanket of fresh bruises. She. Cannot. Stand. This. Any. Longer.

It’s been two months. Her body is collapsing. She feels a burn in her arms and legs, the nerve endings flayed and sparking like a cut electrical cord. She tries Benadryl, melatonin and whiskey. She tries herbs, hypnosis, and alternate nostril breathing. She has an exorcism. The Shaman tells her that she is in the belly of the big snake. The insomnia stays, hardens. Finally, she submits. She does not like the little, white pills. She is terrified that the baby in her belly will be deformed, will have a shrunken brain, but sleep psychosis hunts her like a dog. She takes the little, white pills. They twinkle in the brain like tiny stars, turning things on and off and on and off. She sobs into her sinkhole chest. Dawn, finally, recedes.

She counts them out now one by one; sits on the porch swing and waits for their pull. Her unborn child is too big to kick now, too big to swing its surly arms. Night still comes with a doom that pulses like a heart. Alien. She is medicated. Will she always and forever be medicated? She feels betrayed, the taste like gunmetal in her mouth.  Stars wink out in her brain; a great cloud, a big, synthetic darkness.

Jonquille wasn’t born deformed. She didn’t have a shrunken head. But she was a baby that wasn’t quite ready to be in the world. The well-known Dr. Sears even has her personality listed in his Baby Book. She was number ten on the list of personality types: a “High Need, ‘Cant Put Me Down’” baby. What this meant was constant movement, day and night; bouncing on the yoga ball, singing, swinging, walking with her in a front carrier, anything to get her to sleep and keep her asleep. At night, Jonquille slept next to me in the bed, so I could roll over at night to nurse. We practiced attachment parenting because there was no detaching. I had gone off the Ambien CR and Benadryl that had been prescribed for my insomnia. Three months into bouncing on the yoga ball and waking every four hours to feed my little one, I was again facing hallucinatory insomnia.

THE BLACK

Dr. Dave, an MD who specializes in hormonal imbalances, runs the Coral Jade Wellness clinic. I went to see him in late January of 2010. He wore pressed khakis, a tucked blue shirt and a wide smile. He seemed the perfect choice. He was smart and operated both in and out of the conventional medical box. I was sure that my insomnia involved an endocrine explosion, a fact later confirmed when a test showed that my cortisol levels had flipped. My get-up-and-go chemistry was surging wildly at night. In the morning, my cortisol was sluggish. But Dr. Dave didn’t address this with much concern. And what I didn’t know at the time was that at Coral Jade Wellness, he had a strong proclivity for prescribing benzodiazepines.

I remember sitting in the chair next to his desk, staring at the statue of the Hindu God Ganesha, remover of obstacles, situated on a teak table against the far wall. Sleep was primary, he told me. The body cannot function if it can’t repair itself. More than anything, I needed sleep. The endocrine imbalance would right itself in time and until then, sleep was our primary objective. My concerns about taking yet another sleep medication were met with calm assurances. He knew a man who’d used benzos for nineteen years and hadn’t had a problem. This drug, he told me, is phenomenal. You’ll sleep. And when you don’t need them anymore it may or may not be slightly difficult to get off but you’ll be fine.

I took home a prescription for 2 milligrams (mg) of Ativan, to be taken nightly. Two refills. And in the family of benzodiazepines, Ativan is a big, GABA-a binding hammer. There are several types of benzos, the most commonly prescribed being the date-rape drug Rohypnol (generic name flunitrazepam), Ativan (generic name lorazepam), Xanax (generic name alprazolam), Librium (generic name chlordiazepoxide), Versed (generic name midazolam) and Valium (generic name diazepam). The action of benzodiazepines on the body is what I refer to as the hush factor. Benzos are sedatives. As such, they’re used to alleviate seizures, promote relaxation, relief from anxiety and insomnia. However, they’re often used off label for many other maladies. They work on the Central Nervous system by plugging into the GABA-a receptors that exist like landing pads on neurotransmitters in the brain. Benzos essentially shut down one of the main generators in the circuitry of your brain/body. They further quiet an inhibitory function in the body. And they affect cardiac, muscular, respiratory, and gastrointestinal among other bodily functions.

It’s important to note that the main difference between the different types of benzodiazepines exists only in their potency and their duration of action in the body. Ativan is ten times the strength of Valium, which is, perhaps, the most well known of the benzodiazepines. Dr. Dave had chosen Ativan for its potency and its short half-life in the body. This was not simply a “mother’s little helper.” It was a two by four that would knock me out and then exit quickly through the back door. Jonquille would be fine, but the pharmacology of a quick half-life with benzos translates to a high propensity for dependency – dependency that can come not in months or even weeks, but for many, just days.

I saw Dr. Dave four times in six months. At each visit, he would listen to my despair about my recurrent insomnia, restate his belief that I’d eventually recover my hormonal sensibilities and double my benzodiazepine dose. My third and fourth visits were a mere month apart. Dr. Dave offered 4 mg of Ativan at the second visit, with three refills. One month later, he suggested that I try hopping over to Xanax occasionally for a different benzo visit and wrote me a prescription for 2mg of Xanax with three refills. At my last visit, six months after the first, he wrote two brief lines of clinical notes: “Patient requiring 4-5 mg. of Ativan to sleep so will write prescription for 6 mg to cover this. Five refills.” At this point, I had prescriptions to last well over a year of high-dose, daily benzodiazepine consumption. It was only later, after my body began to fall apart that I discovered that the majority of pharmaceutical companies that now manufacture and dispense generic Ativan have the following warning: “In general, benzodiazepines should be prescribed for short periods only (e.g. 2- 4 weeks). Extension of the treatment period should not take place without reevaluation of the need for continued therapy.“ So, even the pharmaceutical companies, the ones trying to sell their product, warned against use beyond four weeks. I had enough for over a year. And not once did Dr. Dave express concern, request that I return for a consultation or discuss the possibility of dependency.

All this, I had to discover on my own.

It’s hard to pinpoint the exact beginning of my physical disability. I had two children, so I assumed a certain amount of fatigue as part and parcel of parenthood. But I became startled in the spring and summer of 2010 when I realized that I’d lost over ten pounds. On my already lean, five-foot frame, this was enough to cause a friend to cautiously ask if I might, perhaps, have an eating disorder. I’d also become so exhausted that I’d given up on any and all forms of exercise. I’d been an avid rock climber, bike rider, hiker and yoga addict for most of my life. That all disappeared. Walking Cassius and Jonquille to the park in the mornings became an act of sheer will. I noticed a burning sensation all over my skin and head, as if a swarm of small ants had covered my body. I began walking with a measured gait because it seemed that I was perpetually running into doorframes, table corners, chairs. Despite this, I powered on, convinced that I was just an exhausted mother, trying to negotiate the exhilarating and chaotic passage of parenthood. You’re no more tired than any other mother, I told myself. Get over it.

But I continued slipping.

The first time that I realized something was seriously wrong was the night I barely evaded knocking Jonquille senseless. I had just gotten her out of the tub and had wrapped her little body in her favorite Froggy towel. I held her in my arms and began walking out of the bathroom. With no warning, my legs collapsed beneath me. I fell to the floor, torquing myself onto my back to keep Jonquille’s head from slamming hard into a corner wall. My side ached, but I joked with Jonquille that mommy had played a falling trick and with some tickling, she laughed and began asking that I fall again.

What I’d experienced is known in benzo circles, the underground of internet chat rooms that connect people trying to withdraw from benzodiazepines because there are few other avenues of information, as “jelly legs.” The impulse that is supposed to tell a particular muscle group to fire simply doesn’t fire. The mind goes, but the legs don’t follow. And this is just one symptom in a list of potential withdrawal symptoms that can be mind-boggling. I began having emotional swings that stunned me in their intensity. Despite having been a long-time meditator, I seemed to have lost the ability to watch my emotions and act from a place of center. There was, it seems, no center. The self that I knew was dissolving into a cloud, a fog of cognitive laxity, physical disability and no way to pin point the exact cause of my impairment. My teeth ached. My joints and muscles ached as if I’d run fifty miles. I couldn’t eat. My vision became a moving cloud, occasionally clear, but often socked in – a dizzy disorientation. I remember the end of 2010 and the beginning of 2011 only as a time of despair and utter will to survive.

In September of 2011, I began seeing a new doctor. Dr. Kate was one of a new breed of doctors, born out of overwhelming dismay at the current medical system. She was old school: I could call her at home; I could email her questions; She would make house calls. In essence, she cared about my health and the health of her other patients more than she cared for the labyrinth of the Western medical debacle. For me, she was a miracle. I didn’t know at the time that I was experiencing what’s known as interdose withdrawal or tolerance withdrawal. I’d been on nearly six milligrams of Ativan nightly for close to two years. The weight loss, the lack of coordination, the cognitive gaps all convinced me that I needed to get off the benzos now. However, I was still breast-feeding Jonquille. This, I adored. It also meant that I couldn’t shift to a longer acting benzodiazepine, which is what’s often recommended as a way to help reduce the severity of withdrawal symptoms. Longer acting meant that Jonquille would be drinking the benzo. This, I would not allow. I decided to cut approximately one eighth of a milligram of Ativan. I waited to see what would happen.

The next morning was disorienting. By mid-afternoon I was fighting for breath, my diaphragm confused as to its function. I stumbled and fell on the kitchen floor. Jelly legs. The panic attack came at four o’clock. I was driving to the grocery store, trying valiantly to perform the most basic of domestic tasks. My vision narrowed, as if the lens of a camera had softened and constricted at the edges. I began hyperventilating. My heart pounded. I barely made it to the side of the road before collapsing into sobs. I’d never experienced anything like it. My body was no longer a subject of will or understanding. It had been taken over.

A quick call to Dr. Kate confirmed that the cut was too large for my system. We agreed that I’d have to wean Jonquille so I could begin transferring to Valium, the benzodiazepine with the longest half-life in the body. This is also the method recommended by Dr. Heather Ashton writer of the Ashton Manual, a bible of sorts for people trying to detox off any kind of benzo. Dr. Ashton is a Professor of Psychopharmacology at the University of Newcastle in England and has spent over thirty years researching and advocating for people who are addicted to benzodiazepines.

For the next four months we tried a step-down method, using Ativan and Valium in conjunction. Professor Ashton recommends a full transfer to Valium, but Dr. Kate and I decided to try a slightly different route. We failed horrifically. I lost more weight, had chronic nausea, anxiety, tremors and an almost entire loss of self. I felt like a character out of William Burroughs’ 1953 novel Junkie. At the beginning of 2012, Dr. Kate sat with me shivering in her office and told me that what I was going through was beyond her scope of experience. She didn’t know how to get me off these drugs; drugs I had been told were relatively benign. I needed to find an expert.

What followed was a despairing month trying to find an “expert.” Dr. Kate searched her network of physicians. Nothing. I put the word out, finally desperate enough to hurdle the shame of feeling like an “addict,” a failure, someone made invalid through no choice of my own. Two months into my hunt, after researching recommended facilities in California and Florida, all questionable, all requiring payments exceeding 50k per month for transferring my benzo addiction to opiod and other addictions as a way to mitigate the inevitable withdrawal symptoms, I found a specialist in Draper, Utah. Draper is a community of horse ranches, apple groves and large swaths of cookie cutter, monster homes and neat strip malls of box stores set against the Ochre Mountains of Utah. In this painfully suburban landscape, I found Dr. Mike, the man who would lead me through a benzo inferno and finally, back home.

DAWN

It’s been five months. After our initial consultation, Dr. Mike had me switch entirely over to Valium (Dr. Ashton’s recommendation), in two days. The first night was an epic horror show, a terrifying entourage of bloody images, body parts, horrific killings and the sense that it would never end. The nightmares were epic. It was as if my amygdala, the almond shaped mass in the limbic system of the brain, was on fire. Everything that terrified me took shape, looming in front of me, as if my brain could no longer regulate the fear for pure survival. The nightmares continued for several months, always taking their subject matter from what would distress me the most: the bloody death of my children; the dismemberment of my children and husband; the loss and endless search for those I loved. The dreams were horrific but they became, as do so many of the symptoms people in benzo withdrawal experience, something that I began to place in the category of “healing.” I told myself that with each day, each jelly fall, each nightmare, each muscle seizure, I was getting better. I knew that there was no other path. Benzos are recommended for no more than two to four weeks of regular use for a reason. The reason is that the body reaches tolerance incredibly quickly. The brain’s neurotransmitters try to accommodate this intrusive imbalance and this accommodation causes a down regulation of the GABA receptors. This is what we know. But the bigger story is in what we don’t know.

We don’t know much about what happens to the brain after long-term use of benzodiazepines. And long-term in psychopharmacological terms means four months. Nearly every manufacturer of benzodiazepines carries the warning that, “The effectiveness of lorazepam (and other benzodiazepines) in long-term use, that is, more than 4 months, has not been assessed by systematic clinical studies.” This is why Professor Ashton has led such a valiant fight in the United Kingdom on behalf of unintentional benzodiazepine addicts. In a speech in May of 2007, Dr. Ashton states, “It seems clear that money, not science, is driving pharmacology. Yet the drug companies are the only ones with the funds to conduct large drug trials and to develop new drugs which can, and have, saved many lives; and doctors persist in the belief that a drug will be found that is the answer to each mental illness. There appear to be failures in the whole system under which we have insidiously come to operate. What can be done about it?”

The answer to this would require a full book to explore, but asking the question is a beginning. What can be done about it? Telling the stories of the untold numbers of unintentional addicts who are struggling to reclaim their lives is a beginning. The suffering is epic. And worse, it is in some senses invisible. The fabric of our culture has been lulled by advertising into believing that benzodiazepines are benign.  People take them for everything from muscle spasms to grief to insomnia to a bad day at work. They are, to many, invisible – but they are an epidemic.

I have been rendered an invalid by these drugs. I have spent the better part of two years trying to get off them. I have fed my children pancakes and sent them to daycare so I could curl and shiver and try to regain my stability for their return home. This is the greatest disservice: the loss of my life; the loss of time with my children; the loss of my sense of self.

I have almost four months to go until I am done with the little pills. After that, I’m told it will take two to nine months until my brain will regulate, until I will be able to eat normally, to stand without shivering, to hold my children without fear of falling. I will make it. But I am here to state the obvious: Benzodiazepines are dangerous. We need more research. We need to know that an invisible epidemic is in our midst and there is much that can be done.