What was wrong with me?
It was a question that haunted me on the deepest level. It haunted me before I took my first Klonopin tablet at age 26. It haunted me while I was on Klonopin. And it haunted me more than it ever had when I withdrew from Klonopin at age 28.
But it was a question that had haunted me long before my nightmare of Klonopin use and withdrawal.
As a teenager I suffered on-and-off bouts of severe depression. My mom took me to a psychiatrist, who used my answers to short questionnaires to diagnose me with a different form of depression every few months. With each new diagnosis, I got to try a different drug. Prozac and Luvox gave me side effects. Lithium took away my creativity and sense of humor. Finally, Zoloft seemed to subtly help without any side effects. I was on it from age 14 to 23. I had several bouts of severe depression even while on the drug. But I could function.
I was all too familiar with the haunting feeling that there was something deeply wrong with me, something no one could help me with, something ephemeral that could never heal: a chemical imbalance, as my mom and psychiatrist labeled it.
I stopped taking Zoloft at age 23 when I got help unearthing what was actually wrong. I saw a very gifted counselor and psychologist whose relationship with me and insights helped me see the many things that had bothered me over the years. I got to feel them, grieve them, understand them, and process them. My depression left and did not return.
At age 26, when I thought mental disturbance was a thing of the past, something else became wrong… really wrong: I was unable to sleep.
I had my first “real” job counseling college students. Some stressful aspects of my job led to increasing anxiety, snowballing into severe insomnia. I did not sleep for five days. The Urgent Care treatment center near my job prescribed me Lunesta and then, when that didn’t work, Ambien. Ambien also didn’t put me to sleep, so I finally decided to visit my family doctor, who prescribed me 2-4 milligrams of Klonopin per night.
Someone had told me to stay away from “benzos.” But my doctor said he needed to give me something that would “knock me out.” By that point, I was willing to try anything to be “knocked out.”
I soon developed a fear of benzo dependency and began scheming about how I might get off the drug down the road. I imagined that, when I was ready, it would be a simple matter of finding a less habit-forming drug that would enable me to get off the Klonopin.
The Klonopin sure did knock me out. For six months, determined to forget all about insomnia, I chose never to go a single night without Klonopin.
Finally I was ready to unearth the truth of whether I could sleep naturally again. What I didn’t know was that I was in for a very harsh “awakening.”
It was time for the college students’ summer break, and, for the first time in months, I decided not to swallow the 2 milligrams of Klonopin I’d been taking nightly. Instead, I took Trazodone, a drug my doctor said would help me transition off Klonopin.
After I took the Trazodone, my body felt quite heavy, as if I were loaded with concrete and sinking continually down through my bed and my floor. I got nothing close to a good night’s sleep.
Throughout the summer, I tried Trazodone many times, hoping the result would somehow become different. But the more I tried it, the wider awake it left me. I once took it for three nights straight, even doubling the dose, but didn’t sleep a wink and felt quite wired. I also began experiencing the effects of a “cold-turkey” discontinuation of Klonopin: I heard ringing in my ears and broke out into a rash. The nightmare had begun in earnest.
I had no idea what was happening to me; when I’d asked my doctor if I could discontinue Klonopin abruptly, he’d said yes.
The only thing I could conclude is exactly what I had come to believe once before, as a teenager: something is very, very wrong with me.
The students came back from break, my stressful full-time job resumed, and I was back at square one, taking 2 mg of Klonopin nightly. Soon, though, my sleep became light, and I began waking up throughout the night. My doctor had initially said I could take between 2 and 4 milligrams Klonopin per night, so I increased my dose from 2 to 3 milligrams. At 3 milligrams, I found that I could sleep soundly again. But deep within me, I was not at rest. Something really was very wrong—I just didn’t know what it was, when exactly it had begun, or how I could fix it. But I was determined to find out what it was. After nine months on Klonopin, I began a journey of relentlessly trying everything under the sun to get a good night’s sleep apart from Klonopin. The plan was simple: go without Klonopin on a given night and try something new. If I could find anything but a benzo to put me to sleep, I could at least believe that there was a possibility for me to be free from benzo dependency.
I tried counseling, holy oil at church, journaling, hypnosis CDs, lavender under my pillow, many vitamins and minerals, mineral salts, herbs and herbal tinctures, yoga poses, melatonin, over-the-counter sleep aids, sunlight, exercise, warm baths, and light therapy gadgets. I tried odd-sounding psychological remedies I discovered on the internet that involved repeating mantras, rolling my eyes backwards, and tapping various body parts. I called up a guy who did “muscle testing” of his body to get answers about my condition and then used magnets to pull out the troubled emotions of his clients – all without ever meeting them face-to-face.
None of these remedies gave me a minute of sleep.
Then there were other drugs to try. I was so optimistic that I would find a non-benzo drug to put me to sleep. My eyes became tired as I scanned my computer screen for hours, reading reviews of various sleeping pills. I learned of all the classes of sleeping pills and was determined to try at least one from each class.
I could already cross benzos off that list.
Getting my hands on sleeping pills wasn’t difficult. I didn’t trust my family doctor enough to tell him my dilemma, so instead I again visited the Urgent Care treatment center nearby work. I saw at least three different physicians during my many visits. I told each one that I could not sleep and needed to find a drug other than Klonopin. I would tell each one what drug I wanted to try next based on my internet research. They wrote me the prescriptions without much conversation. One by one, I obtained Elavil, Doxepin, Seroquel, Rozerem, and Vistaril. I had already tried Lunesta, Ambien, and Trazodone.
To my growing dismay and panic, none of these drugs put me to sleep. Some had intolerable side effects. The failure to find a drug to replace the Klonopin magnified my sense that something was very wrong with me.
At that time of deep confusion and despair, I discovered for the first time, while reading online, a condition called “benzodiazepine withdrawal.” I learned that the action of a benzo on brain receptors replaces the brain’s natural activities. The result? The brain doesn’t kick back in and start doing what it is supposed to when someone stops taking a benzo. The brain takes time to resume its natural functioning. During one’s time in benzo withdrawal, the natural GABA activity that allows relaxation, sleep, and a sense of well-being is not functioning. According to my personal study, an average duration in benzo withdrawal is six months.
It was the first time in my Klonopin journey it occurred to me the problem might not be inherent in me. The problem might actually be the Klonopin.
Convinced my very life was at stake, I made the firm decision to get off the stuff once and for all. If I got off Klonopin, I might, just might be normal again someday. I learned online that abruptly discontinuing Klonopin was dangerous, even potentially fatal. That explained the strange symptoms I had experienced when going three days without it the previous summer. It also explained why I had been wide awake every single night I had gone without it, no matter what else I had tried.
I learned I needed to get off the drug very slowly; I would have to get a compounded pharmacy to mail me each month’s supply of four bottles, each week’s capsules containing 5% less Klonopin than the previous week’s. I told my family doctor I preferred to get off Klonopin slowly via a compounded pharmacy, and, in spite of his odd facial expression, he proceeded to write me my last prescription for a slow taper.
I was optimistic about tapering slowly off. I hoped my brain would adapt to the gradual withdrawal of the drug and that, by the end of the five-month taper, my natural sleep would come back. In addition, I was purchasing expensive supplements from a drug recovery program that promised benzo withdrawal would be more manageable if I followed their supplement program.
I had no idea what was in store for me.
During and after my Klonopin taper, my very worst fears were realized. I experienced a hell worse than I ever imagined was real. I cannot adequately describe my experience in words. I did not feel human. I did not believe it was possible for me to recover. I was convinced I would die.
And, worst of all, the fear that something was inherently wrong with me came back full force, stronger than it had ever been. I believed my life was officially over and that it would someday end in suicide.
But I am happy to tell you that I did recover from Klonopin withdrawal five years ago. I wrote my entire 307 page story in my book Klonopin Withdrawal and Howling Dogs: Maybe it was God.
Since recovering from Klonopin withdrawal, I have become and remain certain that there is nothing wrong with me.
I can tell you the things that have been wrong: Lack of proper nutrition, continuing in unmanageable stress, being at spiritual, emotional, and mental unrest, and being in unhealthy relationships. I have learned to eat a lot of nutrients, especially when stressed, and to avoid the many dangerous additives in the standard American diet. I have learned to take probiotics and eat organic greens. I have learned to remove myself from situations that are detrimental to me physically, emotionally, or spiritually. I have learned to discover and resolve the things that are actually bothering me. I have learned how to relate to others in a healthy way.
Of the things in my life that have been truly wrong, chemical imbalance was never one of them.
The message and practice of psychiatry told me there was something inherently wrong with me, and, more particularly, with my brain. It said that I needed a drug, and when the drug was damaging me, it inferred that I was the problem.
I have never been happier, healthier, or more productive that I am now, and being drug-free has been indispensable to that happiness. Though not everyone has my story, I do hope I can encourage others who are plagued with the fear of something chemically wrong with them. I also hope my story can be an encouragement to those who are or will be suffering from withdrawal from a tranquilizer or other psychiatric drug. Total healing can be waiting on the other side.
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.
It very much is the benzos, not you. Due to chronic anxiety and panic attacks, I took 6 to 8 mg of attivan. That was a good day. On bad days, I might take as much as 10 mg. I food this for four years. I worked, I drove, I went to school like that. The anxiety seemed to get worse. It wasn’t until I read a study about the actual findings in the initial research on benzos (that they caused more panic attacks over time) that it occurred to me: the anxiety is just building up. I’m not dealing with it so it’s just drowning me. I took myself off the meds (I don’t recommend my method lol), and after several months, I began associating my anxiety with specific causes. I couldn’t make these designs on the medication because the medication dulls everything. I was dealing with between four and six full fledged panic attacks a day. Now, I might have one a month. I have taught myself ways of managing the places and the things that cause this anxiety, and I’m honestly a happier person.
Yes, I managed to remove myself from a pointless and stressful job. My “psychiatric symptom” were my way, right or wrong, with dealing with reality. Thanks to MIA, I have learned that even psychiatric authorities are admitting that “chemical imbalances are hokem
Wow that is awesome! Thanks for sharing!
Acidpop5 and Chrisreed,
Thanks so much for sharing.. I love hearing how removing stressful situations from your life as well as finding natural ways to cope was the solution. I hope many people get to hear your stories!
Audrey: I am in the process of finishing a very difficult withdraw from Zyprexa. I am about 90 percent complete, and am well aware that Zypreza withdrawal as the potential to bite you in the tale months later. I successfully tapered off Lamictal and it’s insomnia inducing side effects one year ago. I have been on a slew of other psych drugs over the years including Haldol, Thorazine, prolixin, Mellaril, Abilify, Depakote, and Lithium. I am thirty pounds lighter and within 20 pounds of my target weight-but the Lithium abuse has left me with a kidney function in the Mid-40s. My last hurdle is the .5 mg of Klonopin. I am interested in how you obtained that titrating prescription. I do not feel comfortable broaching the subject with my psychiatrist. Like you, I have come to the conclusion that there is nothing fundamentally wrong with me to be corrected with psychiatric drugs.
Hi Chrisreed! Thanks for sharing some of what you have been going through. I don’t remember the name of the pharmacy… but I do know they are called “compounding pharmacies.” Google for a compounding pharmacy in your area. What I did was tell my doctor I wanted a prescription for a 5-month taper, each week’s supply containing 5% less of the drug than the previous week, so that I could get off the drug slowly. I took the prescription to a compounding pharmacy, and they mailed me each month’s supply of 4 bottles. Each bottle had 7 pills for the week. They capsules with powder, and each week’s supply had 5% less powder than the week before. I hope that helps!
Dear Audrey, Thank you for your article. I have been liquid tapering from klonopin for two years now and it looks like it could be another six months to a year, which will bring the total to three years tapering from 1.5 mgs Klonopin. Unfortunately, tapering and healing from benzos can take years for many people. The rate of tapering of 5% or 10% leaves some people devastated. As much as you went through hell (and trust me, I know), I’m really concerned that someone might read this one account and wind up trashed because they followed what worked for you. I’m also concerned that people reading your experience might turn a suspicious eye towards those suffering for years. This is a huge problem for people in protracted withdrawal; the pressure from people in their lives who cannot understand this devastating iatrogenic illness. I urge readers to learn about liquid tapering (no pharmacy will help, it’s a technique that once learned provides control) and to play close attention to what your own body is telling you. Insomnia is a sign that one needs to slow the taper down or hold till it subsides. Thank you again for your article, Audrey, and best wishes.
Nancy: fighting through Lamictal induced insomnia withdrawal was not a piece of cake. I’m down to about 1mg of Zypreza and .5mg of klonopin. The message I am getting is take it slow. Psychiatrist never gave me any indication on the difficulty of Zyprexa withdrawal. MIA contributors give you the low down.
Hi Nancy! Thanks for sharing your story. You are absolutely right that the details of my story will not apply to everyone. Each person should research the options and do what he or she feels is best for them. I took five months to get off Klonopin, but others might want to get off much more slowly. It is good for others to hear and read MANY different stories. That way, each person can decide what they know deep down is best in his or her particular situation.
Hi out there
I dry tapered my 0.5 mg dose of Klonocide over the course of a year and a half thinking that would prevent any issues from coming off the drug after taking it for over 10 years. WRONG.
Still steering thru the hell on earth that is Protracted Benzodiazapine Withdrawal Syndrome at 11 months off-Jan. 1 will be a year since I took my last bit of dust.
It seems to me that those who do experience PAWS have had some sort of history of psych meds, or alcohol abuse or starting and stopping benzos or psych meds over a period of time…the phenomenon referred to as ‘kindling’…not everyone experiences difficulties. I’ve read it’s only around 15% of people who quit deal with any of the litany of symptoms; insomnia, akasthisia, anxiety, depersonalization, derealization, weakness, nausea, tinnitus, ruminating thoughts, suicidal ideation, cognitive impairment, sensory sensitivites, etc etc etc
We are all different when it comes to the aftermath of coming off these drugs-and there really isn’t a whole lot of support for those who do have issues…I feel my own lack of support (I’ve lost everything) has made this journey more hellish than it otherwise would have been, but maybe not. The not knowing how long it will go on is one of the more difficult aspects to grapple with…
The many reports of contiued sensitivity to stress also makes me discouraged; life is stressful, especially so when living in poverty and unable to see a way out with the walls closing in all around me.
Reading some of your story, I feel heartbroken for you. I hope and pray that with time things will get better for you! I want to say congratulations for being off Klonopin. When I was going through withdrawal, I read many stories, and what I continually read over and over again is that things do get better with time. It is so rough, though, being in the middle of the suffering and feeling no assurance that things will get better. I have so been there! I remember thinking there was no way it could get better. Despair convinces us that there is no light at the end of the tunnel. What I learned though, is that no matter how bad it gets, and even when it seems there is no hope, there is hope! How you are doing today is no indicator for how you will be doing in the future. I have hope for you! I hope it’s okay for me to say that I will be praying for you!
Congratulations on your recovery from Klonopin and doubly so for writing a book about it! I’ve put your book on my “to read” list. It’s interesting that doctors feel so confident in prescribing benzodiazepines and consider them completely safe (except for drug addiction risks). Clearly, a doctor should know that 2 mg of Klonopin is like 40 mg of Valium, and therefore one definitely needs to taper. I find it astonishing that prescribers remain ignorant about this class of drugs that has been around for over 50 years. Astonishing, but not surprising.
Thanks so much for your kind congratulations and for being interested in reading my book! It is so neat that social media and the internet give us the opportunity to share our stories with people we don’t know! Yes, I agree with you that it is astonishing that doctors will prescribe drugs and do not even know the risks sometimes! I look back and am amazed that my doctor said I could abruptly quit taking the large dose of Klonopin at any point. The great thing about sharing our stories is that we can help educate the public of the risks of these drugs. Thanks again for sharing your thoughts!
Basically, benzos should be banned. They destroy lives.
I recently stopped Lamictal, once and for all. I grew up on Dexedrine, Depakote (pre-Lamictal), Xanax and either Risperdal, Seroquel and/or Haldol.
I was always hyperactive and still very much am but I was at Lamictal, Dexedrine and PRN Klonopin. I don’t use Klonopin except for when there are thunderstorms and honestly, I have tried mindfulness, other benzos, wine, loud music etc and it has nothing to do with fear at all it is just how my body reacts.
I was getting close to getting of Dexedrine completely because I lowered the dose by half (now at the FDA max dose) and my doctor saw what I was up to and switched me to the long acting which are harder to taper off so I am going to make her switch me to Adderall since that is on my plan. My psych docs will not do tapers in my area and my real doctor refuses to prescribe amphetamines. I have learned to cope with skills, mindfulness, a healthy diet, you name it and I was one of those in and out on 72 hour holds in my late teens and early 20s.
Xanax was a complete nightmare so I know that outside of a thunderstorm, I wouldn’t take that drug for anything and the thunderstorms in my area aren’t frequent and seasonal. I will only take a 1 mg one though. Xanax was at 10 mg/day when I stopped and I was a kid. It is crazy what they load people on at doctor’s offices. Mentioning coming off dexedrine ends with, nope. All you do is argue, complain and interrupt everyone and you act 14. When I was younger I would have to pick up Dexedrine as it was ordered in and there was some older lady there on it and she’d be on it for 50 years. We ended up figuring out that the other as there on the same day because our order came in.
I love these forums because I can relate to people’s struggles.
Thanks so much for this story, Audrey! I, too, suffered the worst case of insomnia I’d ever heard about or known of among my peers. Night after night, I’d get one or two hours of sleep, if you could call it that, it was more like being in hypnotic state and not actually sleeping. Most likely, it was due to a combination of factors. Almost everyone who goes through intense starvation experiences long-term, severe insomnia even after eating adequately for a long time. I heard one theory that when the heartbeat slows to a dangerously low rate, it drops even lower in sleep. The body won’t allow itself to to sleep to protect itself against death. Unfortunately, in all areas of functioning the body will continue to protect itself against famine for many years (average they say is nine years). Nowadays, anorexia patients are put on some sort of sleeping pill so no one really knows the extent that starvation can cause sleeplessness. Another reason was trauma due to abuse I’d experienced while hospitalized for anorexia. After barely sleep two years, my shrink insisted I was “manic.” I certainly wasn’t “manic.” I was exhausted! I refused most of her pills, especially the antipsychotics. It’s now been three and a half years since mid-2011. I haven’t taken drugs for ages. Within the past month, I finally found something that works. When insomnia is that bad, sleep hygiene is petty and irrelevant. Sleep whenever you can get your body to do it. This is for anyone out there. What I realized was that my body was now programmed to not sleep. I had to teach it, “This is day. This is night.” I did this with light therapy I developed myself. You don’t need expensive equipment. You do need real sunlight and a bit of discipline. The body port that transmits this vital message is the eyes. If you can see light, then this is likely to help. Get plenty of sunlight during the day. Actually go outdoors and be in light for an appreciable amount of time. Then, at sunset, no matter what time of year it is (so this will vary) do not expose yourself to blue light. Wear amber glasses to block the light. A cheap drugstore variety will do. UV rays aren’t the same as blue light, so UV-protection eyeglasses aren’t going to help insomnia. If you are a computer user, such as a writer or student, there’s a free program you can download to make your screen amber at sunset. I hear there will be an app for Android out soon. They cannot make one for iphone, so maybe putting an amber plastic sheet over your iphone will do. Avoid any artificial light after sundown. I use candles and very dim nightlights, or a flashlight. Yes, it’s impractical, it’s a bit of trouble, maybe a fire hazard so be careful, but on the bright side, you’ll save on your electric bill.
I was skeptical. I was sure it would take a month of doing this to see any results. I was so thrilled about this reprogramming scheme, because doing this gave me such relief! I am even taking my new found sleep for granted, which I thought I never would do. Honestly, I wish could tell my ex-shrink now what a fool she was for insisting I was manic and force-drugging me. Were those shrinks ever wrong!