by Matt Samet
On the purely pharmacological level, the acute withdrawal syndrome, writes Ashton, is “classically described as lasting five to twenty-eight days, with a peak in severity around two weeks post-withdrawal”—the two weeks of “flu-like symptoms” and “slightly elevated anxiety” that the Hopkins doctors warned about. But Ashton argues that even this time period has probably been underestimated, as most clinical studies end after one or two months, after which ongoing symptoms are no longer monitored. (And these studies can fail to account for dropouts, who often leave to resume taking benzodiazepines possibly because of strong symptoms.) “Indeed,” writes Ashton, “persistence of high anxiety levels beyond twenty-eight days post-withdrawal is usually interpreted not as a withdrawal effect, but as a reemergence of an underlying anxiety state previously controlled by the benzodiazepine.”2 Voila! What happened to me! In America, this bit of misinformation—the so-called “underlying panic disorder” Dr. Porridge cited even as I was in the throes of acute withdrawal—is the most commonly accepted version of the truth and is certainly responsible for keeping untold thousands in the benzo trap. Patients are told that it’s them, not the chemicals, and they lose all hope. They go back on the pills and keep chasing diagnoses, or they succumb to the darkness. On the Yahoo group I will join, a tale will circulate about the brother of one moderator who, taken cold turkey off Restoril (a benzo sleeping pill) at detox and given the party line about a brief, uncomfortable post-withdrawal period, subsequently came home and shot himself dead.
You can find plenty of horror stories like this on the Web and in benzo forums—about nightmare withdrawals, protracted symptoms, and even rumors of brain damage (what Dr. Ashton has called “equivocal evidence” of cortical atrophy and neurological impairment, perhaps reversible upon cessation). But for anyone in the acute phase I would urge that you not dwell on such tales, for four reasons: First, you don’t want to imprint negativity or fearful thoughts onto your extremely delicate psyche. Second, you don’t know what will happen—everyone heals in a different way and at a different rate. Third, it is often difficult to distinguish where protracted symptoms end and a person not facing the underlying issues—depression, isolation, lack of purpose, buried trauma, or other psych-med use or substance abuse—begins. And fourth, you do not want to enter withdrawal with the idée fixe that this is the worst thing ever and that you will never be the same again, because it will become a self-fulfilling prophecy; by fearing the fear, you only increase its influence. As Ashton will state in a phone interview with me, withdrawal need not be a horror, even if that was my experience of it. If you go slowly, letting yourself learn, relearn, or put in place anxiety-coping mechanisms as your dose declines and GABA receptors up-regulate, you can mitigate your fear. It also helps, Ashton has written, if the patient dictates the rate of taper, ideally on an outpatient basis within the structure of his or her life—in other words, away from hospitals and the culture of illness, and with some sense of personal destiny and control. The problem, of course, in America is that there are scant few places that offer a slow (months, not weeks), supervised withdrawal on either an outpatient or an inpatient basis—the infrastructure is lacking. Sure, a detox center can get you off in days but they might also hook you on barbiturates or antiepileptics on your way off; either way, they’ve sown further addiction and possible years of protracted symptoms. That American need for a quick fix—the same one that drives us to seek pharmaceutical crutches in the first place—can, paradoxically, land you in a unending maelstrom.
“[There’s all this] media hype, especially in America, that benzos are terrible, that you can’t go off them without going through terrible hell,” Ashton will tell me. “That’s true for some people, but holds mainly for people in these detox centers.” Ashton posits that the syndrome has been “terribly hyped up by the media and those who go to the benzo groups,” which by their nature attract those who have the very worst withdrawals and thus can’t be seen to represent the entire population. “Most people get off well and quietly, so they’re not going to need to visit those groups,” she’ll tell me. Now consider that benzos are most commonly prescribed for anxiety. To Ashton’s mind, anxiety sufferers tend to subjectively experience the worst withdrawals because of their proclivity toward fear. “Benzos are most efficient in their actions, especially if you’re anxious to start with,” she’ll say. “People who are anxious love them … Then people get all these messages that it’s going to be hell to get off, and the fear compounds.” (On the flip side, I have corresponded with a few people who, prescribed benzodiazepines for problems like sleep disorders or muscle spasms, developed anxiety issues during withdrawal that they’d never experienced before.) Alison Kellagher will later bring up her own complementary theory: that while not all who taper get the withdrawal syndrome, a certain percentage might unknowingly do so but end up misdiagnosed and placed on further meds, “staying in the psych-med world” forever, as I nearly did. Or they might reinstate because the fear and symptoms are intolerable, as Alison did. In either case, they drop back into the Psychiatric Death Machine, becoming statistical ciphers.
As Alison will say, “It’s only the people who want their lives back badly enough, who love life enough that they’re willing to do whatever it takes to get it back,” who will see it through to wellness.
To escape, you must make a conscious decision to break the fear-benzo-fear-benzo cycle. In my case, it took a willingness to endure terror like nothing I’ve ever felt, never knowing exactly when—and on bad days, if—it might end. I liken it to passing the proverbial point of no return on a dangerous rock climb. A good analogy might be my scariest first ascent, Primate, the 5.13 up rainbow-colored Flatirons rock on which the second crux comes sixty feet up, “protected” by a sideways Big Bro tube chock that might or might not prevent a fatal groundfall. The day I redpointed the climb, in July 2001, I reached the Big Bro, slotted my knee against a flange of rock to take weight off my upper body, and began to de-pump, flicking my hands and wrists to recover my forearms. I stayed at the stance for some time, bleeding back my strength and visualizing the tiny pebbles and crimp edges above. If I made it through, I would reach relative safety—larger bucket handholds in a water groove where the protection became reliable again. As my breathing and heart rate slowed, I considered my options. I could do one of three things: 1) Retreat by unclipping the Big Bro and jumping onto a nest of cams fifteen feet below, risking a leg-breaking forty-foot fall. 2) Retreat by weighting the Big Bro and lowering off, though if it pulled at any point I would plummet straight to the ground. Or 3) Place my faith in my skills and in the potential reliability of the Big Bro, and continue to the top. Two minutes later, feeling rested, refreshed, and calm, I chose the third option. It worked—I completed Primate without a fall or even feeling like I would fall. That’s what it’s like with benzo withdrawal: To escape, you must place total faith in yourself and continue on no matter what crux presents itself. Trust me: It’s worth it to have your life back, to be free of that little orange bottle. You will feel a peace and a strength like none you have ever known on the pills. There are other unseen benefits to quitting as well, namely a slim (10 percent) chance of relapse. As Dr. Ashton will tell me, “Anyone who gets off [benzos] stays off. It’s because they have a horror of the pills and don’t ever want to go back on them.” She’ll say that in a way, recovering benzo addicts have it better than those recovering from alcohol, cocaine, meth, or heroin, which fry your dopamine reward center and do lasting damage to brain and body, leaving you with pangs, cravings, black depressions, and a high probability of relapse. With benzos, if used and not abused, she’ll say, “You don’t get that awful craving—the craving you get, is ‘If I take a pill, it would just relieve the anxiety.’” I will gainsay this assertion: Even on my most stress-filled days now, I’ve not once considered taking a benzo; I find the idea abhorrent. Instead I play with my son or go for a walk with the dog.
You need to give benzo people hope and a sense of se
lf-determinacy, so here’s a final kernel: Even if someone reports “protracted” symptoms five, six, seven, or even ten years after stopping, those symptoms have likely faded to background noise. At seven years out, I suffer comparatively not at all. It barely crosses my radar that this bad thing happened. I might have a two- or three-night run of poor sleep once a month. And I continue to have on-again, off-again trouble breathing—I haven’t run or gone above 10,000 feet since 2005, as chest tightness/sports asthma makes me have to pause too often for breath. But I can get my respiratory and heart rate up in short bursts on the rock, and can walk at my flat-out fastest pace, even on rolling hills, for hours. I’ve recovered between 80 and 90 percent of my athletic ability, which is significant when you consider that I was so weak on one walk with my father around the grounds of Hopkins that he had to steady me, his arm about my shoulders, as I crept along the sidewalk. I think of my friend Craig, who plummeted one hundred feet to the ground in a climbing accident, damaging his spinal column and eventually losing his lower right leg. Craig onsights 5.12 and has climbed El Capitan—three thousand feet of rock—in a day despite ongoing neurological pain and not having a feeling foot. But when Craig and I climb together, neither of us complains about what doesn’t work. At a certain point after any trauma, the best gift you can give yourself is to simply live; this dissolves any new boundaries, any perceived narrowing of your world.
As the daylight fades at Amante, Alison also asks me about structure in my life, and I say that there has been very little. She says she took a bakery job at five months off after realizing that distraction was the only thing that helped pass the time. Just being in the bakery each morning preparing muffins, a partially physical, partially mental task, gave backbone to her days, especially the mornings, her worst time. I’ve likewise been waking up backlogged with sleep chemicals, jolting to in cold despair (“Oh, hell, not this again…”) when the alarm goes off and Kasey starts dressing for work. (Kasey and I are still living as roommates, despite having broken up.) I tell Alison I can probably take on light editing jobs, and that the following week I am slated to start helping a buddy on a construction site. She tells me that these both sound like good developments.
Then Alison offers a final piece of advice: that I check out a benzo-support group on Yahoo where she is a moderator, since her local group isn’t meeting in person anymore. She gives me the URL and asks also that I stay in touch. Of course I will, I say—she’s the only person I’ve met who’s talked any sense.
I join the Yahoo group that night and see that it has thirteen thousand members. Many posts are from people more desperate than myself, terrified missives in ALL CAPS without spacing or punctuation:
OH MY GOD OH MY GOD I’M SO GLAD I FOUND THIS GROUP MY DOCTOR TOOK ME OFF XANAX IN A WEEK AND I’M FREAKING OUT AND DYING AND MY HUSBAND IS THREATENING TO LEAVE ME AND I CAN’T SLEEP AND HAVING PANIC ATTACKS ALL THE TIME …
So many tales would break even the hardest of hearts, of people losing jobs, homes, families, and spouses because they’re so weak, housebound, and compromised. Like my own, many stories involve red-herring bipolar diagnoses and poly-drugging with “cocktails” of psychiatric medicine. The moderators, all veterans years out from withdrawal, offer solace, tapering advice, links to Dr. Ashton’s manual and other benzo sites, and snippets of their own experience to validate those of the newbies. My first post asks about agoraphobia, saying that it’s a problem I kicked years ago that has come back with a vengeance. Rik, the man at BenzoLiberty.com who handcuffed himself to his bed to keep from committing suicide, responds that, yes, this and hundreds of other scary symptoms are par for the course, but they do improve over time. It is pretty much only through peer groups and forums like this that people looking to kick psychiatric meds will find meaningful support, where they will learn what to expect and how long the process can take.
Time is the one thing I do have, and I use the next year to research benzos, psychotropic meds, and psychiatric illness. I stay in Boulder until February, working home construction and taking on copyediting jobs. It can be unsettling at the jobsite, my balance off, fatigue thick and impenetrable, trying not to fall into the ditches and open wells full of nails and rebar and concrete and lumber. One day I have to walk a joist out along the home’s highest wall, and the exposure—twenty feet on either side—is intimidating in the way it was my first day roped climbing. I can feel the fierceness, the finality, the clangorousness of the void. But being out in the sun and the wind, distracted and in motion, helps even if I struggle with the more strenuous tasks like carrying heavy tools or sledge-hammering old walls. I’m working with a good buddy, Mike, and a few other low-key guys, and nobody asks any questions. Nobody judges me for my alternating bouts of agitation and silence.
That February, I return to Carbondale to work at Climbing. I have mixed feelings about returning to this mountain town and to a desk job, but the structure, salary, and getting back on health insurance seem important. I remember my first day back, obsessing over whether or not I’d have to crawl up the building’s six front stairs, and how humiliating that would be at a magazine called Climbing. But I make it, leaning heavily on the railing, and I soldier through that day and the others that follow. I want nothing more than to cut and run, but I get up and go to work because this is what people do. Also, I can bring Clyde to the office; having him curled up next to my desk and to walk with at lunch anchors me in some necessary way. We enroll in an obedience class, me and this crazy, bounding Plott hound. As spring thaws the world, I feel well enough to attend yoga classes and to even climb a little, once a week on a local gym wall or on rock if the hike is short. It is a momentous occasion the first time I make it sideways, a fifty-move traverse, across the entire gym wall.
At night, I come home and work on a Web site I’ve created mainly for myself, to document various symptoms. I have to be always doing something or the terror floods back in. It’s a Wiki-style, hyperlinked encyclopedia that includes more than sixty oddities, from a swollen stress belly, to painful acne volcanoes, to tremors, to myoclonic jerks, to insomnia, to TMJ jaw pain, to teeth chattering, to teeth “itching” (a painful tingling in the dental nerves), to intrusive thoughts, to depression, to apathy, to hot and cold flashes, to the flophouse sweats, to panic attacks, to nightmares, to balloons of pressure swelling in my head and chest, to nosebleeds and bloody sputum, to bouts of low blood sugar, to fatigue, to my hair falling out and turning white, to bladder spasms, to poor focus (both mentally and visually, as if my eyes are full of sleep sand), to trouble breathing, to costochondritis, to uncontrollable blushing, to an electric current along my belly and spine, to a metallic taste in my mouth, to parathesiae, and countless other symptoms. Benzo withdrawal is both chimera and chameleon—GABA, after all, is the most prevalent inhibitory neurotransmitter, found not only in the brain and central nervous system, but with receptors in many organs, including the lungs. So it follows that a GABA system gone haywire would cause not only psychological but physical problems as well. In many cases, these can present as diseases from multiple sclerosis, to irritable bowel syndrome, to asthma that resolve once withdrawal has ended. As Alison Kellagher will phrase it, benzo withdrawal “mimics all anxiety disorders, it mimics depression, it mimics anything you’d seen in a person way out of balance, [including] bipolar disorder, agoraphobia, social phobia—because people just don’t want to go out—MS, chronic fatigue syndrome, fibromyalgia, restless leg syndrome, and hypochondria.” The Yahoo moderators also caution about seeking doctors during withdrawal, because you might be saddled with diagnosis and treatment for a condition you don’t really have. At one point, I’ll see a physician for an asthma stress test, and he will find that I have the condition—though I still carry the inhaler he prescribed, I have used it only twice in six years. Perhaps it’s not healthy to focus on symptoms this way, but I figure that by documenting just how outlandish they are and how they are not a part of my normal existence, I can paint an objective picture of my subj
ective hell.
Just as Alison predicted, I improve every month. My muscles feel tauter, I have fewer panic attacks, I sleep more, I can breathe more smoothly, the intrusive thoughts recede, and the world looks more like itself again. I build my physical strength back up by walking Clyde around the golf-course neighborhood where I’m renting a room from friends, looping broad, quiet, freshly paved streets beneath Mount Sopris, going a little farther every time, adding in small hills. I continue lifting weights. I take Clyde to the dog park every day and let him go bonkers, since I’m unable to run him myself. When summer comes, I head back to the rocks with friends. We’ve found a virgin sandstone fin in a scrub-oak canyon west of Carbondale, and spend long days there bolting new climbs. It is tough—very tough—to carry a fully laden climbing pack the mile hike in, but being at the cliffs is a healing diversion. The smell of the pine trees, the wind whooshing over the rock, the scudding of clouds, the cool mountain air: It’s like returning to the womb. Being up off the ground can be overwhelming—too stimulating somehow—my benzo belly oozes over my harness, and my fingers and toes often tingle so much I can’t feel them, yet I do manage 5.12 again on good days. But I have to watch it—during one divine two-day window I push hard at the cliffs and end up not sleeping for three nights. Until my parasympathetic nervous system comes fully back online, I mustn’t get too keyed up.