I have been off of Ativan for just over nine months now and only at this time am I even capable of writing anything about what happened to me. I think my story might be helpful for people poly drugged, as well as those who cannot cross over to Valium, and those suffering socioeconomically because of their dependence. The first thing I want to say is that two months before all of this happened, at 28 years of age, I had my BA in English and had been working full time for four years in social work without any previous psychiatric history save your generic antidepressant prescription for anxiety, and no history of poverty.
I was prescribed 1mg Ativan, 12.5mg Ambien, as well as 900 mg Lithium, in my first psychiatric hospitalization in February of 2008 for “treatment resistant depression” (if that’s ever a problematic term for psychiatry). I voluntarily had signed myself in for a mixed state depression I now realize was the result of combining Luvox, Nortriptyline and Tryptophan after losing my job. (Warning: “all natural” does NOT equal safe.) I was released in March and by May was so cognitively impaired I could no longer pay my bills.
I sought the help of a naturopath. Her first concern was the Lithium because it is extremely toxic, and she was right. Within two months of beginning the taper, my kidneys were suffering so badly from the Lithium that I developed hyperparathyroidism. After my first reduction of Lithium and Ativan, I remembered that four months prior I had turned 29. Yes, that is how drugged up I was, I had forgotten how old I was. I went for an EEG that showed I had encephalophy; likely cause: drug toxicity. My new psychiatrist wanted to put me on Zyprexa. “Have you seen my EEG? Do you think I’m taking another pill?” I said. Unfortunately, I needed him for the scripts to withdraw so I kept playing nice and pretending I would try his awful medications. He seriously said to me one day, “You are too smart for your own good.” What? I guess young females shouldn’t read medical books.
I started doing research, as I dropped the Lithium, and Ambien and Ativan, and became horrified at what I knew was before me. I was also still on a low dose of nortriptyline for fibromyalgia. I came to accept I may, either due to suicidal tendencies in Lithium withdrawal, or wasting in benzo and ambien withdrawal, or toxicity from the drugs in general, not survive. I began to pull away from friends to make any potential loss of my life easier on them. They didn’t know and I couldn’t begin to tell them what lay ahead. I had been seriously drugged. Within the first six months alone, I dropped from 107 to 97 lbs. and I still had halfway to go. I had to quit my position at work because I developed rages I was afraid would crossover into my work, which they never did, but I was trying to do the responsible thing. I also frankly was not getting anything done. I spent my days researching withdrawal clinics, hoping for an easier answer.
In quitting my position, I lost my housing. I went and stayed with a friend for two months, in which time I sped up the withdrawal process, got off Lithium completely, had reduced Ativan and Ambien to 1/3rd of what I had been prescribed, and managed to wean off of nortriptyline (unfortunately, being on this drug in Lithium withdrawal made me hyperthyroid). I was somewhat in a race against time because I knew how suicidal I was going to be going off of these things all at once, and I couldn’t stay with my friends forever. I was scared of living alone again and becoming homeless on so many pills.
Well, I went a little too fast on the nortriptyline withdrawal and developed akathisia. I signed myself, again, into a psych. ward, this time, for housing. I stayed in that hellhole for 7 and a half weeks waiting for a shelter opening. In that time, I don’t even know if I can recount it. The way I had to hide the ativan they gave me and break it up into smaller doses to avoid interdose withdrawal. The hours I spent pacing the halls. The botched attempt to cold turkey me onto Klonopin which brought me down from 97 to 88 lbs. in 5 days, and made me, on the third day, lose consciousness for 15 minutes (no, they didn’t take my vitals, just threw me on the floor with a plate of food and told me to “eat” after I woke up). I now realize it was likely some kind of acute brain failure brought on by mixing the Klonopin and Ambien with Abilify during ativan cold turkey (talk about medical malpractice). I stopped the Abilify, I don’t even know why I started it but when you’re inside those hospital walls wanting to get out, you’ll try almost anything. I demanded to be switched back to Ativan, which may or may not have been a mistake. Because I had been given Klonopin for a week already and so now in between Ativan doses I was going through Klonopin withdrawal. That’s when the dt’s began. Clawing at my skin, rocking back and forth unable to calm myself. “Something’s wrong with her” my roommate kept saying (she had known me on the outside). “She’s not like this, something’s wrong”. She would curl up in my bed and hold me when I couldn’t stop moving and itching. That lasted a few weeks and brought me several times into a total meltdown on the psych. ward floor out of nowhere.
The one good thing I can say about that hospital is that the day staff for the most part, the nurses and social worker and aides, let me control my taper. Some knew I was not following doctor’s orders but very few doubted that I knew what I was doing in weaning myself. They conducted a search of everyone’s room once and when I re-entered, the divided doses were still on my nightstand and my lemon balm was still in my drawer (note: I became unable to tolerate herbs after the botched detox). And why should they have refused my wishes? I had brought research from the Ashton manual with me into the hospital. The scars of that experience though, especially witnessing three suicide attempts, may never heal—it was like being a prisoner of war that happened to be favored by most of the guards.
I got out, into a shelter crawling with bed bugs. I was too impaired to understand how to get rid of them so I brought them with me to my new apartment and infested all of my stuff in the end. But before I moved, I spent two agonizing months in a homeless shelter, being pushed around by heavy drug users, stalked by sexual predators and of course the staff never accommodated my gluten intolerance for meals so I was making everything myself anyway. Beyond the escape from the cold, it was almost useless and had I lived in warmer weather I would have rather slept in a park. One day I did look for another place to stay warm at night on the streets but couldn’t find one. The weight I had regained in the hospital began to come off. My case worker asked me if “early Alzheimer’s” ran in my family. What? I was 30! How early can it begin? I proceeded to tell off every person I knew in some kind of demented rage.
I was psychotic. I would lose hours of the day, pass out in odd places. I kept planning to go up to Niagara Falls and jump off (I had never attempted suicide before in my life and before the psych drug fiasco, never considered it) but I was too tired to hitch a ride to the bus. Thank god. But the day after I had planned to do that, there was a newspaper headline of a man who did make it up there and jump the very same day I was going to; he was the second only to survive that kind of attempt. I kept the newspaper with me for a year. Yes, I was also believing newspaper and tv headlines were specific messages to me from God but…maybe that one was.
Towards the end of my time in the shelter I asked to switch to Valium and my doctor was going to titrate the ativan in a crossover. I also was taking Ambien though and intentionally didn’t mention it to him knowing he wouldn’t approve three tranquilizers at once but I knew how much ambien withdrawal messed me up. I did ask the pharmacist about it and he said it would be fine. I suspected otherwise, and I woke up four hours later in a full body seizure barely breathing. I somehow, didn’t care, and went back to sleep (maybe it was the sedation). I woke up again three hours later in the same state. I was taken by ambulance with an oxygen mask into the hospital and not admitted because the oxygen deprivation had been cured in the ambulance. I was told prescribed doses can’t cause respiratory depression. It was an adverse reaction to the Valium. Oh yeah? Tell that to the EMT.
I moved out on my own, even though I really couldn’t take care of myself. I could barely shower once a week not because of lack of motivation but because of the profound confusion I was experiencing. Sometimes I would get in the shower but forget to use the soap. I went to the ER one day complaining of memory loss so severe I didn’t know if I should live alone. They diagnosed me with transient amnesia and told me to get off of the benzodiazepines. My case worker mentioned a group home but I knew once I got stuck in that system it would be very hard to get out and I would be off the drugs by the end of the year. So I lived alone and gave all of my sharp objects to my friend after a day in May when I had just done a reduction and manically walked a mile then took two buses to Walmart to buy a gun barely being able to get to the corner store most other days. Luckily, I was too concerned with lying to the cashier about why I was purchasing it. So I just sat in their cafeteria eating salad, wondering how I was going to get home and if I would pass out on the way and…how in the hell did I get there? Often, three days following a reduction a kind of psychosis would come over me like this off and on for a few days. This was all in the three months following Ambien withdrawal. I realize in retrospect this was a large contributing factor to my dementia and that Ambien withdrawal might be worse than the benzos psychiatrically speaking. I found out at that time that in South Africa, if you cold turkey Xanax, they keep you in the psych ward for a month. Ambien? Three months.
In July, I entered into a partial hospitalization program to get me off of a bulk of the Ativan with supervision. I was able in one month’s time to reduce from .25mg a day to .125 mg but on the last day of the program, I began pacing uncontrollably and wanting again to walk into traffic. I told the staff; they said to see my primary care doctor because I was physically ill and it was causing me stress; someone needed to figure out what was going on. “It’s the drugs” I kept saying. “I reduced too fast a few days ago”. To be honest, the more seasoned staff couldn’t really deny it although my counselor was sure I was suffering some kind of “complex ptsd” which may be also accurate. The psychiatrist took me into her office and it took me 30 minutes to calm down. “How does it feel to lose control?” she said. “Like real crap” I said. “Do it more often” was her advice. “Where do you go from here?” “One day at a time” I said, and she nodded. She was not convinced at how slowly I needed to withdraw, but she admitted that I should never have been prescribed ativan long term and she, along with every psychiatrist I saw that year, hesitated to prescribe me another psychiatric drug. “Benzos will turn anyone into an addict” was her words to our partial hospitalization group. While I weaned myself too fast in there, and while I think they thought I exaggerated my withdrawal symptoms, they were a large part of my recovery. No one should be locked up unless they are a danger to others and that was their belief.
I left the program and experienced a hypomania from the rapid withdrawal which three weeks later crashed again into a suicidal depression. I began researching euthanasia, and I was serious. How could I get to Switzerland? I was profoundly physically ill and thought my brain may never recover from the damage the encephalopathy had done. I also wanted the doctors to admit they had caused something they couldn’t cure. I was suffering from profound dementia and consulted with a neuropsychologist. If I began writing something in the morning, I would often not remember I had begun it until days later. I couldn’t read a short story or play even a simple game of checkers. The neuropsychologist did some tests and was honest: “It is almost unethical of me to test you right now. I want to see you back here after you’ve been off the drugs for a year. We won’t know the extent of the damage by the drugs until then.” I paid out of pocket for the tests because I knew, as well as she did, that I had a multi million dollar lawsuit on my hands. I had the medical records documenting gastritis, encephalopathy, hyperparathyroidism, transient amnesia, complex ptsd, gallbladder swelling, tremors and unexplained weight loss. I wanted my cognition tested. To this day, I have been too afraid to pick up the results.
In about September of 2009, roughly 5 months following cessation of Ambien, I began to climb out of the psychotic part of the nightmare. And I was almost off of the Ativan. I then realized that the psychosis was partly a paradoxical reaction to the Ativan. My friend Jen was coming by twice a week to cook for me. I was down to 90 lbs. People thought I was anorexic. I wondered if I was but I wanted to GAIN, not lose weight. I had to set a timer to eat because I would forget and I developed gastritis so at the end could only tolerate 15 foods. That and the fatigue made it nearly impossible to prepare three meals a day. Unfortunately, by this time, under a negligent landlord, the bed bugs had gotten out of control and I had become severely anemic.
But before I get to that, I want to detail how I was able to taper the Ativan. Ativan is a very small pill and highly potent. I could not cross over to Valium. I had taken Valium with Ativan and Ambien and become toxic. This is actually when I had to cold turkey the remaining 2.5 mg of Ambien because it was making me ill. As did Valium after that. My body rejected both of them. Ativan as well, but I knew I couldn’t cold turkey that. So I suffered until the end with occasional tremor like paradoxical activity and a drop in blood pressure when I took the Ativan. Once it got so bad I called the paramedics and they gave me the answer. “Oh yeah, this is withdrawal” the guy said as he shined a light in my very dilated pupils. I should divide up my doses in powder form like a coke addict, with a sharp edge and magnifying glass, and put it into applesauce. Sharp edge? I had none. I used my butter knife. I couldn’t do water titration like so many on benzos because of my gastritis, it seemed to go right to my bloodstream. After I began using the applesauce, feeling ill after taking the drug and the dilated pupils, vomitous feeling stopped. The problem was measuring it. I researched mg scales but they were thousands of dollars. I spoke to my psychiatrist, who by this point was willing to do anything to have me not sue him, about compounding, but by that time I was weeks away from being off and didn’t want to play around with the brand of Ativan I was taking as some are known to be, give or take, 10% more potent, which is a lot at 1/36th of a dose. So, I had to rely on my 20/15 vision to see me through to the end. My table became a science experiment. If I had to do it again, I would have gone with compounding from the get go.
It all seemed so crazy and the weight kept dropping so intensely that my friend Jen said she could no longer help me. People wanted me to go into a clinic for anorexia. I knew it was the withdrawal and would abate but I did begin researching anorexia programs just to have support in the process. In all of this, however, I never was rehospitalized. I kept the more severe aspects of my troubles hidden often until after they were passed, so that no one would forcibly institutionalize me. And to be honest, no one likely would have after what had happened to me in the past hospitalization. But it wasn’t because I was afraid of being locked up again. I knew, beyond a shadow of a doubt, that they could not help me and would not abide by my withdrawal and would increase my dose and that if that had happened, I would have promptly come out of the hospital and become more seriously suicidal. You don’t endure over 12 months of physical and mental torture to be told “Do Over”. I was done with the system, done with psychiatry. Any attempts by others to tell me it was my “OCD” or that I was an “addict” and “anorexic” were immediately taken in by me, brought to benzo withdrawal support groups and debunked. People didn’t know. Who can believe a substance could be THIS hard to get off of. They wouldn’t prescribe it then, right?
There were several days I had to fight the urge to kill myself over and over. In the end, my dog is the reason I didn’t. She was such an amazing service animal; she would refuse to eat until I had which is often the only reason I ate. She stood by my bed while I tremored to protect me from falling. She alerted me to panic attacks. She saved my life.
On November 16, 2009, I took my last dose of Ativan. I was down to 1/36th of a pill split up into three doses. Within twenty four hours I was able to notice the peaks and valleys of tolerance withdrawal had gone and left me with a much more emotionally steady state, albeit depressed. I threw the pills out the next day, every speck of dust. I was scared, but I felt so good about myself for that first week, I even got out to see the play, “To Kill a Mockingbird”, having to carry a small meal with me and a face mask to endure the chemicals everyone douses themselves in before going to a show. Then day 8 came. I broke down and cried for two weeks straight, like one cries when their whole family is murdered or something, just wailing, and was told it was because the drug had finally left my system. A week later, I suffered some kind of seizure in my sleep that left me in severe back pain. I went to the ER. They kept demanding I was an alcoholic. “What other drugs do you do?” the admission officer asked. “None,” I said, “Never, I have never even been drunk.” “Uh, right” he said, and walked out. The attending officer gave me a shot of thiamine, 1000 times the daily value. “You have the presentation of a malnourished alcoholic.” That pretty well tells the story doesn’t it? I had never taken more than prescribed.
I went home and became severely ill and incredibly manic. B vitamins are a big no no in withdrawal, and I had just been given a tremendous dose. I went back to the hospital hoping they could flush it out of me or something. Instead, a psychiatric nurse was sent to talk to me. Now here is the part I want to say, I hear so many stories of people coming off of benzos dismissed as crazy, and I was sometimes, yes, but the more profound thing was that often, I was believed. I had worked in mental health and my mother was a nurse; they often couldn’t deny the facts I had before me. It’s just that the services weren’t there to help. We talked and she said: “You’re not crazy or a danger to anyone or yourself, you need to be admitted into the regular part of this hospital and helped with your weight.” “I know,” I said. She could not persuade the doctors. “I’m going to admit you to the medical psychiatric unit for physical monitoring because they won’t do it here” she said, slamming papers around, “This world, this world is crazy, this is wrong.” I slept in the waiting room all night with no food for dinner or breakfast as she tried to admit me---but even the psych ward didn’t want me. Finally, a doctor came on shift who would take me on. She promised me they’d do the gallbladder scan my doctor had ordered, and help me in gaining weight and resting from the nightmare I had just been through.
Of course she couldn’t promise that. They provided no medical care and fed my diseased gallbladder bacon and my gluten intolerant small intestines bread and my allergy prone system fish. In five days, I dropped down to 84 lbs. and was in serious gallbladder pain. I spoke with the head counselor, “You are a nightmare for us” he said, “because you can’t take psychiatric drugs but you can’t go back out there in your physical condition and the hospital won’t admit you.” “No shit,” I said, “but the Thiamine has worn off. I’m sleeping again, so now get me the hell out of here.” I was released and three days later checked myself, with my back disability award, into a five star bug free bed and breakfast with gorgeous art all around and a Christmas tree in the lobby with a feminist lesbian owner who I chatted with about her daughter’s benzo script which had disabled her, and began the arduous refeeding process. I was finally in a place of healing. I stayed there for a week, bought a vehicle and began planning to move.
During refeeding, for weeks, I would wake up starving, had to carry around snacks at all times or risk not only fainting but massive weight loss because once your body has been starved and begins eating again, you can lose 2 lbs. simply by missing one meal and I had no fat to lose. I was so thin, strangers were offering to carry things for me and a grocery cashier gave me $12 for food. The loss of weight and subsequent “refeeding” syndrome was probably one of the worst aspects of the nightmare. All of my bohemian acquaintances thought I was a vegan experiment gone wrong. I told no one but those who had been closest to me that I was a “psych patient”. To this day I believe I never was crazy, from start to finish, any serious psychiatric services I received were because of their drugs.
In two months’ time I was up to 100lbs. and had moved into a new apartment. Things have happened since then. The first two months were the worst. I was still in acute withdrawal and was in despair at what had happened and not being able to recover at the rate others wanted me to. I was still unpredictably moody and had an anger issue, though more minor. I also had brought the bed bugs with me and had to relinquish all of my furniture. I slept with bugs and gave up everything on zero psych meds. So much for my “severe anxiety disorder”.
At four months off, I was back in communication with my friends and had a new partner. At six months, I was moving (again) because of the bugs and finishing my chapbook. It is nine months, nine months since what I can only describe as my own personal holocaust and the only remaining symptoms I have are fatigue, some more anxiety than I am used to (but greatly improved) and these kind of dizzy or disorienting spells where I have to lie down. I need a lot of protein to function throughout the day and no doubt my muscles are still rebuilding, including my heart. I can eat everything I used to be able to save fish (thanks psych hospital for sparking that allergy with a daily fish regimen!) and nuts which I learned I have actually had an allergy to all of my life. I can no longer tolerate chemicals. Period. Which is why the bed bugs were such a nightmare for me (update: still unclear as to whether I have them or have some mild folliculitis and mosquitoes but am now physically capable enough to do diy non-toxic pest control). I have become allergic to every antiobiotic class on the market and fear what may happen if I one day become very ill. I get chronic uti’s since the strain on my kidneys in withdrawal, but handle them naturally. I am being asked to read my poetry in the community again and have a lawsuit against my landlord who did not exterminate in a timely fashion. I cannot even begin to address the amount of debt I am in and am considering bankruptcy.
Most people who saw me during my time of withdrawal, and I had no choice but to go out despite the agoraphobia and psychosis as I had to buy food, would not guess the depths of the hell I endured. Because it would have sent most over the cliff or back into the psych ward. I kept it often to myself only sharing on the benzo boards. Thank god for the Internet, for the vast amount of information I was able to acquire which helped me to know this was the drugs and that it would end. It has. I have not had anymore rages, uncontrollable crying spells, auditory hallucinations or suicidal impulses in months and I am totally able to kick anyone’s butt again in chess. The paranoia, one of my least favorite aspects of the withdrawal syndrome, has totally abated. It is amazing how far I have come in such a short period of time actually. Like they say, it does wax and wane, especially those first six months, but it does get better, much better when you look back at it. I think by one year off I’ll be ready to apply to go back to school as I have planned for either an MFA in poetry or a Masters in Environmental Health.
I’m back. 85% of me anyway. And considering what I went through, I’m happy to have it. Take care of yourself in this. Diet is key. A furry friend helps, as does having someone to talk to everyday. For me it was my courageous Aunt, a psychologist who has seen what benzos have done to her patients. When in doubt, repeat to yourself the word my therapist taught me through her amazing steadiness through the process, “Endurance”. I even got a plant and named it that.
Unfortunately, no one would take me in during this process. Who could watch such a thing and claim responsibility if something went wrong? Someone should have. In retrospect I can still say that, but I have worked on forgiveness. Mostly, I am working on forgiving the people who participate in the economic system that has helped benzos thrive and nearly killed me. Capitalism has created an instant gratification culture that is killing us. We are far less willing to help our neighbor these days too concerned with our own chemically engineered lawns. I experienced good will in my time of trial. My therapist and minister, naturopaths and energy worker come to mind especially, but I saw it in the homeless shelter: our way of life is not sustainable. In truth, no one agreed to witness my suffering daily because benzodiazepine withdrawal is not something humans should ever be made to endure or watch and they need to be taken off of the market for long term use in most conditions, period. The only word that comes to mind when I try to explain to someone what it was like is “war”. No other detox touches it, I know, I saw people coming off everything in my hospitalization. One or two weeks later they are themselves again, but depressed. With benzos, that two weeks is two years. I often tell recovering alcoholics: remember those dt’s you had for a week? Mulitply that by one hundred weeks.
So I am back. But the experience has changed me. I got used to a more solitary kind of life and am slower to trust. I will never go to a doctor and believe them without doing my own research first, and even then I probably won’t. My mom is getting chemotherapy now and I have decided to never endure such a horrible experience; when my time is up, send me to god, not the white coats. Spiritually, also, I am changed. After the botched detox, because of the dementia, I stopped remembering to pray and can’t seem to get back to a regular regimen. The landlord to my first apartment wanted an emergency contact she said to, “know where to send the body.” During the botched detox I had a near death experience, saw the white light and felt the greatest peace imaginable. At the time, I didn’t want to come back. I have, through sheer willpower, returned. And it is with a message from my grandmother who died, I believe, from complications of a Valium addiction (on record it is emphysema at 59, but we all know that tolerance withdrawal includes breathing problems and likely took her from her lung condition far before she needed to go), in 1979, the year I was born, at the very height of the Valium craze: Why are these drugs still being prescribed? How does a doctor look at a person brought down to 84 lbs. from a one year dependence to a “low dose” and write the next person’s script?
Disclaimer: The information contained in this website was not compiled by a doctor or anyone with medical training. The advice contained herein should not be substituted for the advice of a physician who is well-informed in the subject matter discussed. Before making any decisions about your health or treatment you should always confer with your physician and it is always assumed that you will do so.
Last updated 22 July 2015