Who knew a harmless prescription by a trusted physician would destroy my life and health? For half of my twenties I experienced bizarre symptoms that didn’t fit any specific diagnosis. They seemed to mimic several chronic and rare illnesses, and so I subjected myself to invasive tests and saw upwards of 70 specialists in search of an accurate diagnosis and help. Apart from the occasional scare, and one cancer misdiagnosis, everything came back normal. I was falling into the “all in your head” category.
Fortunately in 2014, the medical mystery was solved. An extremely competent psychologist was able to identify the surprising source: prescription Ativan, which I had been taking daily since 2009. The Ativan was initially prescribed to prevent seizures after an accident. At the time, I was only provided with a bland warning about the medication’s potential for addiction, and was otherwise assured of its safety. I took it exactly as prescribed. I even asked a few of my specialists if the Ativan could potentially be responsible for my problems. They assured me it was not. However, it started to be the only thing that had made sense in years. Everything fit. The timelines of dosing, the potential side effects I wasn’t warned about, and a strange period with a bad interaction with fluoroquinolones that is, known to me now, notorious for interacting poorly with those with benzodiazepine physical dependence. While I was very angry that I wasted years of my life chasing a phantom illness, I also felt a sense of relief. I could get out of this nightmare. There was now, finally, hope for escape— I could rid myself of the medication and move on with my life, maybe with fully-restored health.
Not so fast.
Consulting the Experts
I quickly discovered one monumental problem: modern medicine is largely incompetent regarding benzodiazepines. This is especially surprising considering benzodiazepine withdrawal is one of the deadliest known to medicine. Everything physicians suggested not only failed, but also made the situation much worse. Some of the ideas posed, that I would discover later were potentially deadly, included: abrupt cessation, admission to a detox center, a rapid month-long taper, removing one dosage per week, switching amongst different shorter- and longer-acting benzodiazepines (usually at incorrect equivalence rates), taking two benzodiazepines simultaneously to “cancel out” the symptoms, adding random medications, placing me in a voluntary coma, and, most upsetting and unhelpful, total denial of the problem altogether. Two physicians even “fired” me as a patient, implying I was a liability. It was as if I was being gaslit. I lost confidence in medicine altogether, but kept trying. This couldn’t be. Surely, somebody would eventually know what was going on?
But nobody did. The explanations, medical opinions, and proposed options just continued to get more preposterous, finally culminating with a few doctors admitting, “This just happens to some patients. I don’t have a clue what to do for you. You should stay on the medication for the rest of your life.” I was stunned. No answers were available at all? Their solution was simply that I was stuck in a hell of their creating for the rest of my life with no help? A lifetime of feeling this way simply wasn’t an option for me. Not to mention I had many concerns around the risks of taking benzodiazepines during pregnancy, and wanted the benzodiazepines out of the way before starting a family. The reality of my situation slowly sunk in: I was trapped on a medication that was making me sick, that I didn’t want to take anymore, and I was completely on my own to figure out how to get off of it.
The Online Benzodiazepine Community
Backed into a corner, I Googled. Much to my relief (and simultaneous horror), I was not alone by any stretch. I discovered many Facebook benzodiazepine support groups and a forum called BenzoBuddies— their collective memberships totaling over fifty thousand people. None of the people in the groups were surprised. They, too, had similar experiences with useless and often detrimental direction from their doctors in their own attempts at cessation. Beyond some much-needed commiseration and validation, the groups provided what I wanted the most: solutions. They warned the process most likely would not be easy, as a certain percentage of patients can have complicated and painful withdrawals. I didn’t care, I was all in. I finally had an understanding as to what was going on and a plan to follow. I was willing to give up everything to recover my health. And I almost did.
From the communities I learned that the strange cluster of symptoms I had been experiencing for years was from a few things: dose tolerance, interdose withdrawal, and side effects. It was stressed that benzodiazepines must be tapered slowly, about a year or more, often longer. The community strongly discourages abrupt or rapid withdrawal at home or in detox/rehab centers due to the increased risk for severe withdrawal (seizures, psychosis, an agonizing movement disorder called akathisia, and/or suicide) and protracted withdrawal syndrome. The goal in a slow taper is to keep a stable serum level, maintaining even doses throughout the day, and to slowly titrate at a tolerable rate. For me, I would discover, there is not a completely tolerable rate, just a less severe one. Finally, I was told that, even after completion of a long, slow taper, some people would require another year, or even many more, to fully recover from the medication’s damaging effects.
I began to recognize that my benzodiazepine treatment had been mishandled from beginning to end. I had not been given informed consent when initiating Ativan as I was not provided the full picture of the risks involved. In particular, the risk of developing physical dependence, a physical phenomenon much different from addiction. The medical industry often conflates addiction with physical dependence, which results in confusion and mistreatment. I discovered I should never have been kept on Ativan daily for more than 2-4 weeks, per most prescribing guidelines and FDA Prescribing Information. Every cessation method proposed to me by doctors was much too rapid and indicative of an all-too-common fundamental misunderstanding of benzodiazepines and their mechanisms of action. I also discovered I was not, as I had been told, on a “low dose” of a benzodiazepine, but a moderately high one (not that it mattered— dependence, tolerance, interdose and side effects develop at any dose). Finally, I found my doctors’ suggestions to add additional psychiatric drugs as a supposed “aid” to benzodiazepine withdrawal is specifically advised against in the British National Formulary’s Benzodiazepine Guidance.
If that wasn’t enough, I soon encountered another absurd hurdle: most benzodiazepines are are not available in dose sizes or forms optimal to cessation. Luckily, the online withdrawal community figured this one out as well. Imagining where I would be without these communities is terrifying. Most likely, I would, like so many people currently are, still be blindly medicated, in a significantly worse state of tolerance without any knowledge as to why, spending a fortune investigating symptoms, or worse, rapidly withdrawn or having given up completely.
The Withdrawal
I initially tapered using the Ashton Manual, a guide explaining both how benzodiazepines work and how to withdraw, by psychopharmacologist Dr. Heather Ashton. She is highly regarded within the community for her work running a clinic for benzodiazepine patients in the United Kingdom. Using her method, one cuts their dose by about 5-10% at once and holds until the symptoms abate, at which time the process is repeated.
In spite of my best effort, each “cut” proved to be too large for me, destabilizing me further, and creating a laundry list of new intolerable daily symptoms, including: migraines, numbness, mania, hallucinations, twitching, spasms, blurred vision, eye pain, a sensation of being on a rocking boat (similar to mal de débarquement syndrome), agoraphobia, panic attacks, hyperacusis, sensitivity to certain foods and chemicals, memory loss, confusion, unexplained tooth pain, burning nerve pain, shingles, rashes, chronic itching, tinnitus, olfactory hallucinations, hot and cold flashes, suicidal ideation, nausea, depersonalization, derealization, dizziness, insomnia, and many others.
After about a year and a half of the “cut-and-hold” method, I decided to switch to a more popular method called “microtapering”. Microtapering is essentially making small (microgram, as opposed to milligram) reductions more frequently which add up over time. For me, the microtaper made the symptoms more bearable, reducing the mania and suicidal ideations to a level where I felt safe I would not end my life, while eliminating the hallucinations. The other symptoms remain to this day prominent and disabling.
I have tapered four-and-a-half years now and predict it will take over five in total. Even at that slow rate, the process of reversing my body’s physiological dependence to benzodiazepines has completely destroyed what was left of my health and the life I once had. My constant symptoms cause physical, mental, and psychological limitations in every area of my life. Many of my relationships have dissolved, as well, with friends and family moving forward in their own lives while I remain stuck waiting on my nervous system’s slow repair.
This syndrome doesn’t have an alarming and well-known word attached to it, like “cancer” or “car accident,” that instructs people on how to help. It’s a mostly silent epidemic without any instructions for those on the inside or outside of it. Most people conclude that I must be exaggerating, or not trying hard enough, maybe I’m an addict in denial, or some other excuse that blames me, which is usually reasoned with it is unlikely to be this trapped, that something this serious would obviously be widely recognized by medicine. Not so. What it boils down to is this: Myself, and the many thousands of others in my same situation, are in dire need of non-medical support precisely because medical recognition is scarce or unavailable, yet, as a direct result of that medical repudiation, the non-medical support also abandons us.
I’m weirdly considered lucky; many don’t make it as far as me in solving their own benzodiazepine issues. They go to their graves wondering what suddenly went wrong with them. The barriers to discovery are immense. Accurate answers to the problem are not readily available, while incorrect and harmful answers are plentiful. Surviving the cessation is the hardest fight of ten lifetimes. It is long-term physical torture with zero societal validation or financial restitution. Many cannot cope and end their lives.
Forming a Coalition for Change
I firmly believe that so long as patients are given true informed consent, one’s treatment choices for their own body should be up to them. That said, it is abundantly clear to me that prescribers often cause more harm than good with this class of medication and competent resources need to exist immediately for those injured. We can’t rely on medicine or legislation as they have failed to address this issue since the 1950s. It’s also clear that patients who are already physically dependent and do not wish to withdraw should not be forced against their will. Many, understandably, don’t want to do it or are not privileged enough financially to be able to afford to try. Nobody should be forced into hell against their will, especially when they didn’t consent to the risk to begin with. In my opinion, the most critical concerns should include: medical recognition of the withdrawal syndrome, appropriate tapering methods, and research on the nature of the potential damage by long-term prescriptions.
In 2016, to fill my time and to attempt to help those who are also harmed, I founded a nonprofit called Benzodiazepine Information Coalition (BIC). We have an amazing medical board, as well as dedicated volunteers, many of whom were harmed by benzodiazepines themselves. We have had a busy 2 years, appearing in several major news outlets and participating frequently in outreach efforts. Our aim is to contribute to public awareness of the benzodiazepine problem, as well as to give both patients and professionals much-needed educational resources and information. From informed consent at the time of prescription to the proper handling of cessation, we hope to end this dark age of prescriber ignorance, thereby reducing patient injury and giving this epidemic, and the patients impacted by it, the recognition and care that is deserved.
Janice Curle was working on her Masters in Clinical Psychology when she became disabled by taking Ativan as prescribed by her physician. She founded Benzodiazepine Information Coalition in 2016 to facilitate awareness, education, research and change.
Janice I hear you!! Mine has been 40 years!
I am so scared. I have been on 2mg of klonopin for years. Not once did a doctor tell me about any of this. I don’t know what to do. I don’t think I’m strong enough to go through a withdrawal. If someone would have told me this could happen I never would have taken pill one. I only started learning about this a few weeks ago from Reddit of all places. I don’t know what to do. I am so very scared. Thank you for trying to help people… like REALLY help.
Try not to be too scared. You’re going to be ok. There are far deeper, trickier benzodiazepine hell’s than 2mg of clonazepam. Just remember: you’re going to be ok.
Dear Elizabeth,
First of all, I am so sorry x I too, suffer from the same. I try to stay positive and take the good days when they come.I found friends fell by the wayside as usually I look fine, so they don’t understand what’s going on inside. I’ve tried to find others in my area suffering with this too for support- but nothing. It’s something I’m resigned to now and just take the good with the bad. Haven’t got any really helpful advise for you, just wanted to let you know you’re not alone x
I took Benzos nightly for 30 years. Over time, especially in the last 15 years I took them, my health began to go downhill. I felt weak, tired and had a lot of unexplainable aches and pains. I saw several neurologists and all told me I probably had fibromyalgia, maybe M.S., mabe CFS and possibly Patrkinsons. In the last 4 years on benzos, my weight dropped to 85 lbs. But the worst thing was I began falling for no reason. I would just go down. I broke a bone in my neck, and had surgery to repair this. Then I fractured my femur and blew apart a knee replacement. I was told I could lose that leg. The pain was so extreme I fainted. Luckily a good surgeon saved the leg but my recovery was very long. OI used a walker for several years and then used a cane. About a month after the surgery . on Levaquin IV and then had the only panic attack of my life. I know know that those antibiotics threw me into withdrawal. My doctors did NOT know this. Not long after that fall, I fell yet again and broke my hip.
Fast forward: my PMD finally began to think the benzos were causing my problems so he called ther psych doc who wrote my prescriptions. I was abruptly cut off from Klonapin 6 mgs, Ambien 10 mgs and two antidepressants. Within a day I began having terrible withdrawal symptoms. My withdrawal was epic and lasted FAR longer than I expected. About 4 months into it, I discovered BenzoBuddies. That was my sole support and they were extremely helpful. It was on BB that I began to understand that I DID NOT have Fibro, CFS, or any other odd disease. It was ALL caused by benzos. I was in tolerance withdrawal for years, and NONE of my physicians knew that this exists. My withdrawal went on for over 3 years and after that, I STILL had WD symptoms. I learned over time how to deal with them, thanks to what I learned on BB and other sources. I believe I am the perfect example of the severe harm that can happen if you take benzos. I am now 69 years old, and healthier than I have been in perhaps 20 years.
Your story is close to mine as far as chronic diseases and symptoms throughout years. I am on benzo medications for almost 40 years!! I was put on benzo medication at age 19 for nerve damage pain. I had no Anxiety throughout my life until months ago attempts to get off benzo medications. During taper I never stabilized Period! No Windows. All Waves. I finally got off and each day off my symptoms got worse and worse. 11 months completely off and I was in sucidal thoughts very intense and I knew I would go through with it! I had severe electrocuted symptoms throughout my entire body including my vagina, brain zapping and electric shocks throughout my entire body day and night! I have a benzo belly which looks like I’m 9 months pregnant with twins and the pressure is unbearable. My breast went up to 2- sizes and I cannot wear a bra because of sensitive breast and pushing pressure in my ribcage takes my breath away and some. I have so many symptoms it’s insane! I went to my Neurologist and flat out told her she needed to reinstate me back on Xanax immediately because I was seriously going to kill Myself because of the severity of withdrawaling symptoms. She would only give me half of the medication prior to taper and the only symptoms that subsided was Sucide mode and brain zapping along with extreme body shocks. But severe acute symptoms are still strong and my body is swollen. The Ashton Manual States If in acute withdrawals and reinstatement should be done right after taper not wait. For it may not work also many people need to go back on original dose prior to taper or higher dose to stabilize then once stabilized wait and go to a super slow taper method. Some patients are permanently damaged by benzo medications and I could possibly fall into that percentage of patients since on for 39 plus years taken Multiple times daily dose. I’m alone and scared without a willing doctor to read print out of Ashton Manual and to put me back on Xanax at the proper dose to stabilize my body and soul! All doctors are clueless and I have so many mri, labs, brain ultrasound ect all abnormal and Shows on scans abdominal distended which Gastro doctor can’t figure out why or listening to what I am saying, Endoscopy done showing slowing of of my entire Gastro System Which another I don’t know what is happening. My list goes on and on! And so does the Torturous day and night! How long can one person go on like this without anyone willing to help me and read up on benzo patients nightmares and HELL!
I’ve been on up to 4mg a day at one point in 2016.
It seemed to work much better then. Been on it at usually 2-3 mg. Now on 2, but that was because of a recent 4 day stay at a psych unit. I have a VERY big fear of being alone. I also have MECFS, Fibro and Dysautonomia for almost 30 years which no psychiatrist or medical dr understands how sensitive we are to meds. I had a very bad relapse in June and have been bedbound and scared that I’m dying. Hired a lady that I cannot afford to come stay with me, fix meals etc, but I cannot afford her very long. Very isolated; one friend that I’ve had for years, now will not help me. Have had anxiety and panic disorder for years, but now it’s constant. My daughter wants me to go bk to a psych unit and I’ve tried, but it freaks me out. Have bad insomnia now..slept 45 minutes last night…Ambien seems to have stopped working or all my meds seem to be doing the opposite. Never been able to tolerate anti-depressants, cause more panic. The Klonopin I’ve been on for 9 years, before that xanax small dose, and Valium at some point. I know I’m rambling here. Very surprised I can even type this much. Since I seem to have lost the ability to care for myself. WHAT DO I DO?
This could have been written by me!
I’m 58 years old and was put on benzo medications since 19 years old for nerve pain. I recently tried to get off Xanax and the withdrawals were the bottom pit of Hell itself! I was completely tapered off and had zero windows the entire taper. I was completely off for 11 months and my withdrawals intensified every day. I had such severe electric shocks and zapping which included my entire body and most sensitive body parts. I became sucidal and so fearful of reinstatement because it was a decision of kill Myself or reinstate and live. My husband and daughter had made me reinstate due to not wanting me to kill Myself. I reinstated half the amount I had started with and it isn’t controlling everything but it has stopped the severe brain zapping and electric shocks. Doctors didn’t want to give me back the medication and do see this as drug addicts and seekers. I told my Neurologist I was gonna take my own life because of being tortured for way to long! Doctors don’t believe especially when you’re off after 11 months of still experiencing severe withdrawals! Every system is involved with me. I am totally frightened of what to do next and if my doctor will continue to write out my scripts or end it. Of course I will have zero choice but to then take my own life for NO MORE TORTURING ME! Hopefully one day Doctors will acknowledge the harm done to Unknown Patients Torture! I believe I have fell into the category of Permanently Damaged by Benzodiazepines. Almost 40 years on these Drugs!!
Thank you for sharing your story of the horrific suffering you endured and your ultimate survival. Don’t know why I’m always shocked at how young some are who have gone through this torture. I am 63, was prescribed valium 15 yrs ago for electrical surges in my body. I repeatedly ask all my docs if this drug could cause me harm long term. I was ALWAYS told no, you’re on a low dose. As you stated, it doesn’t matter the dose OR benzo. They are ALL poisonous! I have lost my life as I knew it. My family is suffering bc they wonder what happened to me. I don’t have any hope of getting off…I cannot survive life or the thought of years of withdrawals, even though I’ve been in tolerance withdrawals for years. I don’t want to live much of the time. But my hope in Jesus and my G kids draw me back to life. The thing that is so brutal is the absence of any joy and the deep depression. God bless and protect you and all of us who are suffering from this benzo disease.
Your a god sent you are helping so many people like me who are suffering as you are god bless all of you
I took benzos for THIRTY years. I did know they are addictive. But I did NOT know about tolerance WD. I do now. My physician forced me to go cold turkey. That should never be done, but it did to me. My physician called the prescribing psychiatrist and he would no longer give me refils.
My health on benzos had gone steadily downhill for about 12 years, which corresponds to my being put on Klonapin. I became weak, dizzy, lost so much weight I got down to 85 lbs. I hamany falls because my balance was so bad. Specialists told me I had fibromyalgia, CFS, and possible MS or Parkinsons.
I did a cold turkey. The first 4 days I was in a psych hospital, not by choice. I was told if I did not go, the doctor would have me Baker acted. Well, this place had NO clue about benzo withdrawal. NO CLUE. I was treated as a common street addict, publiclly shamed for my addiction by the Social Worker. Thank heavens that after 4 days my insurance refused to pay and the hospital promtly booted me out. In full blown withdrawal! I was hallucinating with all five sense by then and became extremely paranoid that the hospital was going to come get me. The first month was something out of a horror movie. By month 3 I had found BenzoBuddies and that is when my true education began. I slowly began to understand what was going on. I felt totally crazy and sick for about 4 years. It very slowly got better. Six years ago I sold my house and moved to a new town, still in major DP and DR. But now, 6 years later, I am healthier and happier than I have been in perhaps 20 years! ALL my old symptoms disappeared. All along, it was benzos and nothing else.
I forgave my former physician because along the way I realized that going cold turkey was my ONLY chance of getting off benzos. I was so addicted. A taper – no way could I have handled that.
I still going on BenzoBuddies, because I now just want to help other people in the same situation. I literally owe my life to that forum.
I followed your posts in the fb groups during and after my withdrawal from clonazepam. Please know that I and many others understand precisely where you are coming from and are very grateful you have donated your time to BIC.
Excellent article. My brother fell into the category of “cannot cope and ended his life” part of your article toward the end. I am glad that you were “lucky” and that you have helped form the BIC. Please continue to educate and send your articles. Thank you.