Editor’s Note: This is a revised letter written by the author to her psychiatrist. The author has chosen to use only her first name because she is currently in the midst of psychiatric drug withdrawal and wants to wait until she’s healed before she makes the decision about whether or not to emerge publicly with her complete name.
I am writing this letter, after much consideration, in the depths of benzodiazepine withdrawal. I need to be a voice in the midst of silence; I need to be heard before you write one more prescription for a benzo or any other mind-altering drug for that matter. It is my hope in writing this that you begin to ask questions as you sit across from your patients: why are they depressed, anxious, insecure, fatigued, paranoid, agoraphobic? Are the drugs I so readily prescribe contributing to their declining physical, mental and emotional health? Are these drugs really the answer? What are they really doing to the brain?
You once told me, “You are my most difficult patient, and the highest functioning of them all.” Please hear me as a formerly sane, high-functioning, happy, secure, energetic person. This is my truth.
The packaging instructions that come with these psychoactive chemicals are to be taken seriously. They do—please hear me, they do—cause confusion, memory loss, mood changes, depression, rage, agitation, anxiety, paranoia. I know this because it has happened to me. I slowly morphed into a fearful, agitated, depressed, insecure, angry, confused shell of a person. These drugs, benzodiazepines especially in my case, were soul-sucking, and I believe this happens to most people in time, causing a descent into the world of psychiatric diagnosis and drugging that many never escape from.
After our relationship ended, I was hospitalized twice at Rogers, completed two extensive partial programs there, and was given more diagnoses and even more drugs. I was convinced I was mentally ill and there was a “magic pill” I hadn’t found. 2012 was an open door into a hell I never would have believed existed had I not been living it today. But it really started before that, way before that ,when I started tolerance withdrawal from Klonopin in 2009.
Klonopin, which you handed out to me consistently for six years, was the impetus for my increasingly sickened mind, body and emotions. By the summer of 2009, deep dark depression had set in and I stayed in bed every morning despairing of life, waiting for my trusted little yellow pill to kick in and take away the electric shocks. I dragged my weary body to work by noon and couldn’t wait to get home and lay down. I continued to decline and was writing in my journal regularly, “I feel like my body has been through a meat grinder, what is wrong with me? I can’t go on. How much more can I take?” On occasion, a little voice inside me wondered if it was the drugs, but it was distant and unconvincing, and because not one medical professional mentioned it, I dismissed it easily; after all, how could I possibly live without my “K”?
By 2011, I had increased fatigue, weak, shaky muscles, nausea, acid reflux, brain fog, worsening insomnia and, still, the deep, consuming depression. More hospitalizations, more diagnoses, more drugs…more desperate. In January of 2012 in the Waukesha psych ward I slept for one hour on four sedating drugs… What was wrong with me?
I have suffered adrenal fatigue, bladder issues, thyroid problems, severe IBS (a three-day hospitalization for that). I spent 2012 as what felt like a full-time medical patient running to specialists, the E.R. and urgent care. By the fall of 2012 I was finding it very difficult to drive and work due to brain fog and dizziness. I also had a sudden retinal detachment and needed emergency eye surgery. I still wonder if the Seroquel I had been on for years was the culprit—did you know that the official Seroquel website cites possible eye problems from the drug and suggests an eye exam every 6 months while taking it? I was never told that by any prescribing doctor.
I landed in the E.R. again at the end of December 2012 for extreme dizziness and finally heard the words I should have heard multiple times before from my doctors: ”It may be the Klonopin.”
A slew of neurological tests and blood work were all negative and on January 1st, 2013, I started my three month taper off 1.5 milligrams of Klonopin. My current psychiatrist was supportive but very ill-informed as to how to taper properly and I was home-bound and bed-bound by early February 2013 with over thirty symptoms.
I was, and still am, so very sick.
I now know I tapered way too fast and should have taken a possible eighteen months to get off this insidious drug in order to allow my poor, tortured brain to adjust at its own pace and to keep me functional. I did not find this out until last summer, when I joined some Facebook forums run by the most unbelievable group of warriors I have ever met. They are people who have braved this out and figured it out on their own as their doctors simply did not believe there was such a thing as benzo withdrawal.
I jumped off that last little 0.12 milligrams at 11:30 A.M. on April 3rd, 2013. It was a heroic moment! Little did I know that an even deeper descent into hell awaited me.
This is my life since I have “jumped” over eleven months ago:
I live in an altered reality of depersonalization and derealization; every waking moment, nothing looks, seems or feels real. My hands don’t look like mine as I am typing this; I am amazed as I watch my feet move. I put yogurt in the china cabinet and hamburger meat in the cleaning closet. My brain is a few seconds behind my body’s movements which keeps me in a perpetual state of confusion. My second-to-second reality is comprised of a constant torment with no relief, no respite. I cannot escape myself and feel imprisoned in a sick brain. I feel claustrophobic, recessed deep within myself observing life from some distant place unable to access it at any normal level. I have spent many hours in a near catatonic state, staring. I cannot access my memories, and I feel like I have had no life previous, yet, at other times they come storming back, too many, too fast, and they seem more real than my “now”.
My thoughts are convoluted, thick and drowning in negativity; they are obsessive and ruminating, dark and fearful. I have horrific intrusive thoughts that flash through my mind, many violent and disgusting, making it impossible to try and rest my eyes during the day. My entire nervous system is in extreme over-excitation, making me hyper-vigilant.
There is no peace.
The chemical fear and terror are consuming and visit me every morning as I rock in bed holding my Bible. The depression has deepened and I find it near impossible to smile and laugh, my face rigid like my body, which feels like it is being squeezed in a vice. The severe anxiety started in July and is just now, after eight months, calming some. (Any anxiety I had before this was a blip on the radar compared to “chemical anxiety”). I was gasping for air, close to hyperventilating much of the time, and my heart palpitations were severe. I still feel continual apprehension, agitation and nervousness. I am constantly moving, rocking, and I pull on my hair and pick my cuticles. As the well-respected benzo warrior Matt Samet says, “I felt like a half-busted refrigerator”.
My eyes are sore, dry and glassy, and they often feel the size of golf balls. I feel visually cut off from the world. For many months any daylight was very painful. My ears are screaming with tinnitus, gurgle and pop, and are full of extreme pressure. My hearing is distorted, making me feel audibly cut off from the world. There is so much pressure in my head it feels like it will explode. Sometimes, it just bobs on my neck because it is too hard to hold it still, causing neck spasms and the sense that my jaw might crack. I have facial distortions: my lips feel huge, or my nose feels like it is being pressed into my face. My hands and feet feel somewhat numb as does my skin. There is relentless electric buzzing on every inch of my skin (even in my teeth). The muscle twitching, chills, headaches, jelly legs, weakness and bone-weary fatigue from the earlier months has gotten better, but other things have taken their place.
In July an extreme “boaty” feeling took over my body, causing me to feel like I’m being pulled and pushed around. I stumble at times and have to hold onto the leg of my bedside table while lying down because it seems I will be catapulted off the bed. I have been forced down stairs and off toilet seats by this feeling. There are times I feel really tall and other times like I will sink into the ground, and I feel severe pressure pushing on my body from the inside—similar to that in my head—making me feel like I will explode through my chest, forcing me to cough and tear up. The room spins from dizziness and I often feel like I’ll just float away. I never sit still. I must rock incessantly to attempt to counteract the controlling movements. I have screamed, kicked and cried in hysterics. I have wailed on a tree outside in my pajamas to release the “benzo rage.” I have pulled my hair and beat my pillow trying to get free from this torture. I feel like I am going insane much of the time. I now know why some people hurt themselves…to escape the emotional pain.
This is how I have lived every day since last February. I cannot drive and did not even attempt to work until recently. Paperwork is very difficult and I can only complete rudimentary tasks as my brain is just not able to process anything more complicated. My employees see before them a quivering, agitated, fragmented person. I manage to do simple chores but everything I do takes a herculean force. I must muster all my emotional, physical and mental energy for everything I do. There is no fluid natural movement, no relaxed calm state of being, no peace…ever.
I have heard it can take six to eighteen months to heal, and for the damaged GABA receptors to up-regulate. I am in contact with survivors who are two years out and still suffering greatly. I have not had windows and waves others speak of, I have no idea when this will end. my brain is so very sick.
I need to ask: why?
Did you know this was possible? Did you know there was a possibility I would suffer like this if and when I tried to rid myself of this evil drug? And if so, why wasn’t I warned and if you didn’t know, why didn’t you?
Why was I prescribed this regularly for six years when the FDA recommends only four weeks? Why is a severely toxic mind-altering drug given out for burning tongue, restless leg, tinnitus and a host of other simple ailments?
Why, when this drug is only recommended for two to four weeks and there are no FDA follow-up studies on long-term side effects (at least that I am aware of), are patients being disregarded, questioned, and scoffed at when they report these symptoms as withdrawal? Shouldn’t the FDA, doctors, and drug companies be alarmed and searching for answers? People on the forums are regularly blown off by their doctors and ridiculed. My own neurologist, after hearing all my symptoms and reviewing my test results, shrugged his shoulders, gave me a quizzical look, and walked out.
Why, when I experienced insomnia and panic as the result of one stressful period in my life and had no prior history of mental health issues, was I put on three mind-altering drugs and left on them (and more) for seven years? How is this O.K.?
Why, when I asked if the electric current I was feeling was my body needing the drug, didn’t you say, “Maybe it is”? Instead you said, “No, that’s the anxiety.” I was convinced I had an incurable chronic case of severe anxiety.
Why, when I asked if I was becoming addicted to the drug did you say, “No, you don’t have an addictive personality”? Why didn’t you know about physiological dependence, or if you did, why weren’t you honest with me about the possibility?
Why, when the depression began in 2009 and I asked if the drug might be causing it, did you dismiss my question and keep playing Russian roulette with my brain, convincing me I had clinical depression and trying more and more drugs?
Why didn’t you realize that the side effects of benzos and other psych drugs can mimic what our society calls “mental illnesses” and keep patients in a zombie-like, drugged state until (hopefully) one day they say “Enough!” and fight their way out?
Why wasn’t I told about informed consent?
Why, after I (stupidly) cold-turkeyed three drugs in 2006 and told you it felt like bugs were crawling all over me, did you tell me I “sounded like a six-year old” when I now know it is a side effect called formication. Why didn’t you know that?
Why are there tens of thousands of others suffering alone, without medical support? Why isn’t this acknowledged in the medical community?
Why are we told there is a “chemical imbalance in the brain” when there is no diagnostic test to prove this?
Why was it OK for you to keep assaulting my brain with multiple mind-altering drugs without any proper accountability and even, it seems, awareness of how disabling they are?
Why, in our modern day, educated, socially networked society is this happening?
Why haven’t you looked on the internet to find out what is really happening in the lives of innocent victims of psychiatric drugging? (And if you have, what are you doing about it?) People are losing jobs, marriages, homes and lives trying to break free from the hold of these drugs. Is ignorance bliss? I hope not.
Why does the human experience need to be labeled? Why can’t someone be sad, anxious, melancholy, agitated, pensive, shy, hyper, aggressive, rebellious, irritable or just “different” without it being a “disorder”? Without it being drugged? Is it about money? Power? Pride? Ignorance?
I know you are a good person, and I know you care about your patients. I know you cared about me—I saw tears in your eyes at times when we talked. I know you never intentionally tried to harm me and that is why I am writing to you…I know you care.
If this speaks to you at all—if it resonates on any level—I hope you will do further research. I recommend you read the Ashton Manual online, written by Dr. Heather Ashton, who ran a benzodiazepine withdrawal clinic in England for years and is a wealth of information. I also recommend reading the ‘Benzo Buddies’ for personal stories and several books by survivors, including Matt Samet’s Death Grip and Bliss Johns’ Recovery and Renewal. There are also many blogspots on withdrawal at the Mad in America website. I also highly recommend the distinguished Dr. Peter Breggin’s short YouTube video titled “Simple Truths About Psychiatry”, and his book, Your Drug May be Your Problem.
I don’t know what more to say Doctor– other than that this is a silent deadly epidemic that must be brought to light. Doctors and patients have been deceived by the multi-billion dollar pharmaceutical drug companies and it scares me when I read that the FDA is run by many retired CEOs from those companies. You are accountable to know, much more fully that the information given to you by the drug companies, themselves, how these drugs are potentially affecting your patients.
I am happy to say that although I am still suffering greatly, my thyroid is back to normal, my IBS has cleared up, my adrenals are healing, and I have more energy. I can feel my intrinsic health returning. I am now sleeping eight hours on a mere six milligrams of Seroquel, my very last psych drug, which I will be dropping altogether very soon. Life will be good again, better than ever…all I need is time. Time for my very damaged brain to learn how to function on its own without a neurotoxin moderating it.
I have been asked if I am sorry I ever took that first benzo after barely sleeping for seven weeks. I am not. I don’t know what else what would have knocked me out. I am sorry, however, that I was left on the benzo and given multiple other drugs over the course of the next seven years…what a travesty.
I pray for change daily,
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.