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 22nd, 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.
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.
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.
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.
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.
I have a similar story. I took Xanax and Ativan for 12 years, according to how the prescription was written. I have also spent two years struggling to get off Ativan. I have reduced the dose from 4 mg to .75 at this point.
The weirdest thing is that my mental health is much better, even though I suffer from some horrendous physical symptoms. A lot of fears that I have disappeared. It was really toxic, and I had no idea.
change from xanax to Valium! Read the Ashton Manual. There is a ton of good stuff in there.
I’m grateful that someone as gifted and articulate as you has survived to tell the story. No-one should have to go thru these kinds of experiences. It’s a brand new kind of horror for human beings. Your words really show what this inhuman torture feels like. I’ve been free from the chemicals since Dec. 2011. I was prescribed them for 25 years and it took me 5 years to detox and heal the damage. I can assure you that it does get better.
Great writing! A special thanks for bravely baring just how terribly distorted (and often violent!) one’s thinking can be on benzos and on tapering from benzos. Unfortunately, I can relate all too well as I’m thirteen months sober from my 4 mg. Klonopin addiction of twelve years. I agree that we need more stories out there to inform the public about the dangerous, deleterious, and addictive properties of legal drugs that easily rivals that of illegal drugs. Indeed, we as a society trust our MDs to do better for our health than to encourage such unwitting addiction. Yet, it happens everyday, and there is a fresh batch of future benzo addicts being introduced to their first metallic taste of those little white pills today…
I have a question: in your research of benzo addiction, have you read Whitaker’s ‘Anatomy of an Epidemic’? If not, have you heard of it? If you have read it, does it give you a different perspective of the supposed validity of psychiatric drugs at large being helpful for the so-called mentally ill?
[**Moderator Edit: personal attack removed]
Consider yourself lucky that you never bought into the idea that doctors don’t do harm. Countless others have had to learn the hard way that you have to be just as wary of doctors as you do anyone else in society.
Knowing this innately however does not give one the right to be self-righteous or judgmental.
If I get whacked for this comment then so be it.
Yeah, I was also bothered by the attacking tone of that comment. The writer is just giving a straightforward story about how she was deceived and hurt by psychiatry. Maybe someone else might have handled the situation differently, been less easily fooled, but so what?
Thank you for this very eloquent account of your experience with benzos. I hope you do eventually write a book. I don’t know why the previous commenter (sonnyboy) is so unsympathetic when you clearly describe how months of sleeplessness while caring for two babies (and still nursing one – has sonnyboy tried that?!) drove you to desperation. You needed relief.
I’m a nurse practitioner in a city where many of us work in “community sites” as well as in the main clinic. Several years ago I was assigned to do a weekly primary care clinic at a community outpatient “mental health center” replete with psychiatrists and social workers. One of the first patients who came to me, Mr D, was in anguish because of a Klonopin addiction of 12 years duration: he hated needing the drug, hated feeling like he was dying when he tried to get off it, hated that the psychiatrist he’d seen for anxiety 12 years ago had put him on it without informing him of the side effects, hated that his current psychiatrist thought the fact that he was still on such a low dose (“basically a placebo” per this MD) meant he didn’t really want to stop taking it. He was a very sweet man, and very unhappy. Since I don’t prescribe benzos, I turned to google for info on how to help patients withdraw, and came across Dr. Ashton’s work. But I felt like helping the patient with this myself was way beyond my skill/comfort level. Why aren’t psychiatrists trained to do this?! All the psychiatrists I approached at my clinic were useless (not to mention devoid of empathy – the good ones must be working elsewhere). Like Dr Kate, I told my patient I’d try to help him find an expert. Sad to say, several months later he committed suicide. To this day, when I read stories like yours I try to learn what I can do differently next time, for the next patient.
One of my docs tried telling me the same thing about “you aren’t even taking a therapeutic dose,” and “You have anxiety,” blah blah blah.
Luckily since she felt she couldn’t handle my care anyways (military psych doc) I got approval for off base where a doctor listened to me and let me try it my way. A much slower withdraw and one that switched me over to Valium. First I went from a hospital dose of Midazolam for surgery, then to Ativan the next day at the ER, followed by a switch to Klonopin, and finally my wishes to go to Valium and drop slowly. If it wasn’t for The Ashton manual and her research, some information i found on benzo buddies forum, and my own research, I’d probably be dead by now. I’m sorry to hear your patient committed suicide. Had he gotten the proper doctor to switch him to Valium and go slow he probably would have been alive. I was told the same about the placebo affect since I was taking only 1/8 of 1 MG of klonopin 3x/day and when we took away just 1/8th my head almost exploded amongst 30 other terrible horrific symptoms. It’s stupid that this is not taught as standard for clinical psychs…..
Just noticed that the instructions at the bottom of this blog post seem to have changed. Matthew can you please explain?
thanks for sharing your story Melissa. We remain in the shadows.
I attribute most of the most serious long term withdrawal issues I have to the long-term benzo use and withdrawal. The withdrawal community that consistently resonates most are those who’ve withdrawn from benzos. It’s a very ugly and alienating experience that seems impossible for those who’ve not experienced it to grasp…which means that policies to protect others are very very slow in the making.
I have found that people with traumatic brain injuries relate to my experience as well.
Not everyone who comes of benzos get sick which leads doctors to make all sorts of negative and inaccurate assumptions about those who get critically ill and we are largely dismissed. The medical community has nothing to help us and often denies we even exist.
I’ve collected an extensive list of articles and information on benzo use and withdrawal over the several years now that I’ve been dealing with acute withdrawal syndrome…that others might be able to avoid this hell: http://beyondmeds.com/benzos/
Melissa Bond, thank you for telling your history-story.
Thanks for sharing for story. Really beautifully written. Benzos were, for me, the most difficult drug to come off of. Actually, difficult is a mild descriptive term. I worried I was losing my mind. I stuttered. I could not remember why I walked into a room. I couldn’t read and retain information. I mostly felt panicked, or dead inside. It is a dangerous drug.
Look forward to reading more of your writing.–Vanessa
Thank you for writing this. It makes me realize just how lucky I was when I didn’t have the money to fill my prescription for ativan when I was discharged from the psych hospital. Sometimes being poor does have advantages! By sheer luck I was saved from the hell that you’ve gone through. Good luck to you as you continue getting off these toxic drugs. Hope you get back to writing poetry if you haven’t already!
I didn’t sleep last night. Maybe 20 minutes. The rest of the evening was spent pacing my room, staring out the window at the near full moon glow, practicing deep, even breaths and reminding myself that this is just one night. I will sleep again. I will.
I’m touched and amazed at how many people have gone through what I’m currently going through. There are so many of you, of me. And yes, I’ve read Anatomy of an Epidemic. Whitaker is a soul worth walking alongside. His investigations opened the door to insights I couldn’t reach on my own. What luck. For those of you who have gone through the inferno and come out, I am stunned at your strength. One of the most difficult aspects of this kind of iatrogenic illness resides in the poor social economics. There’s no cultural fabric to hold something so deep in the underbelly of our medical system. This is what I hope to bring to light. I wanna break down the door and shine my flashlight. This stuff is inappropriately prescribed all the time. I believe that the more of us who can speak and speak loud, the more who can press for research, the more light will shine through the cracks.
I’m deeply grateful to all of you. And to Whitaker and Cole who keep this community of discussion going. May we all break down some doors.
Hi Melissa ,
I know this is an old post , but I was wondering if you could give me the name and address of your dr in Utah who helped you detox off the Ativan? Please I am desperate for help. I am trying to get of Valium and Ativan. I sometimes feel this will never end. Please if you get this please send me this Dr’s name. I am in Florida. Please help me .
My email address is [email protected]
Thank you for your courageous truth telling Melissa, and welcome as a fellow blogger on MIA! I wish you every good path out of the suffering you have endured.
Your story remined me of a woman who came to a high end psychiatric hospital I worked at in 1980 to withdraw from Valium. It was awful to see her deterioration as the withdrawal happened.
A few years later when Xanex and Ativan came on the scene, the head psychiatrist where I worked announced with fanfare that-“Gone are the days of Valium withdrawal which you all have seen to be worse than withdrawing from heroin! These new anti-anxiety drugs are safe for use and have been perfected so that risk of addiction and withdrwal distress are insignificant factors.”
I didn’t believe him for a second. Did he believe the pharma propoaganda he was mouthing?
We heard the same kind of untrue claims about the SSRI’s and second generation anti-psychotics- that none of the problems of previous drugs were a concern.
My point is that there has been and still is, a massive fraudulent campaign at work that is covering up the risks of all pscych drugs. The collusion extends from the university bad science, bogus research done on them, on to the blind eye of the FDA, to the embrace of them by psychiatry, by the sales of them by phamracies and the prescribing of them by every kind doctor with an MD behind their name.
Someday there will be a full reckoning and the punitive damages will invoilve jail time, not just drug company fines, which have cynically been factored in as a cost of doing business.
Your writng here will hasten that day. You and your family, and countless other families deserve such justice. Thank you again for making the pain be heard as real.
It sounds like you’re in a super-natural state of being, Melissa.
Dr. Cornwall –
Thank you so much for your kind words. And, yes, the bogus science and the path from cultivation of medicine to the consumers that ingest it is so dark and so invested in money, not concern for the wellbeing of the populace that it stuns. I’m amazed that the head of psychiatry at your previous place of employment would swallow the propaganda hook and sinker. Reminds me of Daniel Carlat’s book, Unhinged. It’s a dark tapestry that’s woven and I can only hope to be part of the pull that unravels.
I had a discussion with my father recently where he claimed that pharmaceutical companies are now so handcuffed by government regulation that they can’t properly inform and distribute their fab new drugs to the populace. I nearly choked. This is why you and I and Whitaker and the tens of thousands of misled consumers of these drugs need to howl and howl with vigor. Vigor and hard science. Medicine in a consumer based paradigm is bound to fail on many counts.
I hope to be one of the many who tear the fraudulent veil, who say it’s not Big Pharma that’s handcuffed, it’s us. So, thank you. Let’s ride the horses in and kindly and accurately, tear the paradigm apart.
I meditated about you and got a message about “thrombosis”, which is a word that I do not know. I looked it up and it says that oral contraceptives increase the risk for “venous thrombosis”.
I hope you check it out.
I’ll definitely mention it to my doctor. Thank you! The good news is that I’m no longer on oral contraceptives, but I did take them for a long time, so it’s always worth checking into possible complications. Especially one that sounds a bit scary!
first,thanks for sharing your story, melissa.
i am not a psychiatrist and have no personal experience with benzodiazepines. i am an herbalist and therapist of sorts, but those are stories i’m not prepared to tell right now.
since withdrawal from benzodiazepines is described as such a horrific experience here, i thought that i would share what i have recently learned about vitex (chaste tree) berries in hopes that it may help someone.
vitex berries have been very helpful for a number of folks breaking patterns of addiction, especially those dealing with alcohol, opiate or benzodiazepine addictions.i am sorry i cannot offer you a good dose to work with, but i do know that vitex berry is a slower-acting herb so it would take at least a month of regularly taking tea or tincture to experience even just the beginning of its affects.
vitex berries have long been used by women to help regulate both estrogen and pregesterone and this plant has gained some fame and notoriety around this topic, i know. often plants that become more well known get a bad rap because of improper dosing or inconsistent use etc. also plenty of the herbal medicines that are for sale at places like whole foods are real shoddy quality. often local, small-scale herbalists are making the best medicines around.
ain’t life tremendous(ly painful) stuff! here’s to helping each other navigate it.
Powerful story, great post.
Benzos are probably the most dangerous and abused drugs on the planet. Outside of a hospital setting, I believe it can be said, that the prescriptions written by doctors and ultimately used by uninformed patients, cause far more harm than good.
Having worked in community mental health for over 19 yrs I have had hundreds of discussions about the dangers of Benzos with a large number of psychiatrists. They all say they will not prescribe them very often or they will quickly get people off them who come to the clinics with an active prescription. All these so-called good intentions never happen in reality. In community mental health clinics in working class cities throughout this country the number of prescriptions for Benzos are probably beyond belief; enormous damage is being done.
My experience as a counselor tells me that Benzos will utimately emotionally cripple those that take them for a significant period of time. When people are on Benzos their own natural coping mechanisms suffer “atrophy”(they become weak and almost nonexistant). The mere discussion of a possible taper over a long period of time(maybe over a year) can practically trigger a panic attack by a client in my office. The system is not currently equipped to even begin to provide the kind of help needed for this desperate client base.
The road back, as you describe Melissa, can be trecherous. I admire your tenacity and how well you have educated yourself in this struggle for your life. I believe that being a part of our movement against Biological Psychiatry and channeling your well deserved anger will serve you well in this battle, as well as help many others. I look forward to more of your posts.
People who do not know the history of how Xanax was approved by the FDA should read the chapter on Anxiety Overwhelm in Peter Breggin’s book “Toxic Psychiatry.”
You obviously went through something horrific and are still on your way to getting free of these dangerous, life sapping drugs.
I know two people who have been on them for most of their adult life. I hear about others. I saw one elderly woman becoming confused in what was likely to be a drug related reaction. The services took her in and readjusted her drug dose and sent her back home, re-addicted. A colleague knew someone who became violently psychotic when suddenly withdrawing from them.
I bring this up in meetings with service providers and community monitoring agencies (in the UK this is called LINk – Local Involvement Network, where the community are consulted and encourage to have input into local health services). National Guidelines, are just what you say: don’t prescribe these drugs for longer than a few weeks. I repeatedly say we need local withdrawal services and GP’s need reminding of the guidelines and that people who take them regularly should be encouraged to come off them or reduce doses as there are long term health risks, especially in the elderly, where trips and slips can cause serious consequences. Nothing happens. No money is diverted, no education campaign results, no new clinic opens. Nothing.
I hope the Dr who originally put you on these drugs has learnt his lesson, but I suspect not.
Clearly some serious campaigning is needed. I dream of standing outside offending GP surgeries with banners reading, “Legalised Drug Pusher,” and then repeating it 20 times until someone takes notice. Because I believe it is that kind of organised protest movement that is needed to make people sit up and take notice.
I took low dose benzos for weeks and had a three year withdrawal. That was 23 years ago before the internet or any knowledge was known on withdrawal. I was totally alone with the doctors misdiagnosing me with a dozen mental disabilities.
I walked the streets day and night and prayed for death. There was not one body system that the drugs did not compromise and they created hideous symptoms that there are no names for.
I have no doubt that it left me with permanent damage – I have had severe symptom return twice – the first time at year 17 for 6 months then again at year 19 for over two years. In both cases moderate stress set them off again – and I do mean moderate……a bit too tired, too much exercise and too many moves.
After my acute withdrawal I helped establish the first benzo internet and community based support groups. I spent 12 years working with benzo patients until I had a major set back and burnt out. While I keep in touch with many people who have had long term disability caused by these drugs I no longer do on going work in the benzo field
Melissa: Thank you so much for sharing your story. I just found this website a month ago and am reading some older blog posts. Your story made me realize how lucky I was. I too was prescribed Ativan by my doctor because I was unable to sleep when my youngest son was suffering from a severe mental illness. Fortunately I came across Robert Whitaker’s books and was very wary of taking meds. I stopped taking it when I started walking into walls and having auditory hallucinations which I had never before had in my life. I felt like I was drunk and it seriously messed up my sleep. What finally made a difference for me was Dr Hymans book “The Ultra Mind Solution”. I didn’t make all the changes he advises, but I did change my diet to eating a lot more whole fruits, vegetables and nuts, and a lot less grains and processed food. This helped my physical and mental health tremendously and now I sleep at least four hours every night and usually close to eight. I am much more relaxed even though my son refuses to try any of these changes and he is still very ill.
I hope you and your family are doing well and I look forward to more of your posts.
Thank you for sharing! I am going through post-acute withdrawal, after five years on a variety of prescribed benzodiazepines(and many other psychotropics). I am happy to say that I have been free from benzodiazepines for over a year now. It has been very tempting to run back to the doctors at times to end the panic, physical sensations, etc., but what keeps me going is the increasing number of moments of clear-mindedness that I have had since being benzo-free. My recovery has been sustained by regular meditation, exercise, and ample support. Throughout this withdrawal process, I have been finishing up medical school, and now I am going into psychiatry. I know that the residency experience will be very trying. I will inevitably be embedded within a system-of-care that has misunderstood me. I know that my own practice will be one that distances itself from much of the field, and I hope to be able to change the way that others practice psychiatry.
Melissa, to add more perspective, i know you had planned on being off in 4 months (which as of your latest update was not doable) After having multiple doctors botch my taper, and after I presented my plan, I went to Valium at 7.5MG per day. This was at the very start of July. I went down to 7, then 6,5,4,3,2,1 as I stated in the other article. By the start of September at 1 MG it all came back and I readjusted. I am dropping down to 2MG this saturday for at least 3 weeks then dropping another half. I don’t expect to be off until the End of Feb/Start of March. So it will have taken me 8 months to get off. However, when I go super slow and wait longer in between step downs, but brain/body is a happy camper. Hope this helps too.
Thank you, and well wishes to you. In month 3 after going off HALF the prescribed dose, and pinning my hopes to the future day when this will be entirely over. I definitely feel your pain, as well as the sense of invalidation we all get from doctors and pharmacists who simply assume that we have “some other problem” when it’s quite clear that the effects of benzo withdrawal are frequently devastating to people.
Take care of yourself.
Melissa, thank you so much for writing so powerfully about this. There are no words to describe how it feels reading it, having lived so much of it. In 2004, there wasn’t anything like Mad in America, and even though many of us supported one another via message boards, it wasn’t as empowering to be a part of as this is. I think that is a testament to people waking up.
As a mother whose two children were preschool age when my iatrogenic nightmare began, I can relate to the loss you must feel about how this experience affects these tender years with your kids. Please know that there are others who share your experience and anger and are working to see this end. This experience must have affected my kids and it makes me feel sad to think back to those years, but we have always been very close and we remain so.
For myself, the absolute hands down hardest aspect about this, maybe more than being deceived about medications, is the denial of our culture, including friends and family (good people), that anything really happened to me that requires attention or action. Your story absolutely shines light into my darkness and says, “this really did happen/is happening.” I am so sorry this happened to you, but I am grateful that it happened to a powerful writer and that you now write about it.
First of all, let me say Thank You from the bottom of my heart for sharing your story, Melissa. I was never heavy into Benzos, but have had my fair share of them. I’ve recently within the last year have made the decision to get clean and let me tell you, I’ve keyed in on many similarities that you’ve experienced. My mind feels like mush, my body, on fire.I go from okay to better to amazing only to be brought back into the depths of darkness again. It seems to come and go in waves and irregular waves at that. So unpredictable, these waves fluctuate with no rhyme or reason and in countless forms of intensity and duration. But, before I get on a rant (which is far too easy for me to do) I just wanted to say I applaud your strength and resolve and thank you for sharing because it gives me hope as well. Without hope, we are all lost. Keep fighting the good fight girl!
My name is Sabrina and I desperately need help withdrawing from Valium and Ativan before they totally destroy my life. Please if anyone knows of a good trustworthy dr in Jacksonville , Fl area, please let me know ASAP. My email address is [email protected]. Please someone help me!!
I can’t help you with the doctor part, but do sign up at http://survivingantidepressants.org/ and also http://www.benzobuddies.org/
There’s a wealth of info there and supportive people. I withdrew from benzos a few years ago and it’s really hard…nobody understands unless they’ve been there. It can be done but you need the tools. Don’t do it cold turkey.
Thank you so much for replying,
I am getting so desperate to get off the Valium and Ativan , that I am having bad thoughts. A new Psychiatrist I saw today wants to put me on Prozac and then start tapering me off the benzos. I do not want to be on an SSRI as they come with their own set of problems. I just want my life back. I am in tears every day. I am going to lose my house, car and husband and maybe worse if I can’t get off these benzos!
Thank You Engineer , any help is GREATLY appreciated!
I feel I am spiraling downward fast and can’t stop!