In hindsight, I should have never accepted a Xanax prescription from my doctor. What followed was catastrophic — rapidly developing tolerance and physical dependence on the drug and a prolonged illness. Three-and-a-half years later, I am still slowly tapering off Valium (having transitioned to a longer-acting benzodiazepine to aid in tapering) and experiencing debilitating symptoms daily.
I was unprepared for what happened to me by my medical training, my physician, and the drug sheet I was given at the pharmacy. Later I would find that some of the most serious risks are not mentioned in the FDA Label — specifically that patients can suffer disabling neurological damage from benzodiazepines, which in some cases may be permanent. Had I known about this possibility, I would have never filled the prescription. But because I was never truly informed of the risks, my health and life as I knew it have been destroyed.
My experience is far from unique. The unfortunate truth is that patients prescribed benzodiazepines are not receiving true informed consent. While many were cautioned about the risk of addiction, the overwhelming majority of patients in online support groups for benzodiazepine withdrawal report having never been warned about the possibility of physical dependence, severe withdrawal, and neurological injury. In fact, in a 2013 survey of the largest online forum, BenzoBuddies, almost 60 percent of the respondents reported receiving no warning at all from their provider about the potential side effects and risks of benzodiazepines.
I’ve been asked many times how this could have happened to me. After all, I’m a doctor — I should have known. The truth is, physicians are not adequately trained about the possible adverse effects of benzodiazepines. As a medical student and internal medicine resident, I was taught about benzodiazepines’ potential for addiction and abuse, their increased risk of overdose in combination with alcohol and opioids, to prescribe them only “short term” (which I now know is <2- 4 weeks), and to use caution in the elderly. But what happened to me, and so many others, was never mentioned as a possibility. As I found out the hard way, the medical profession is grossly uneducated about the potential harms of this drug class.
Unfortunately, in the past few years, I’ve been forced to learn what could fill volumes about benzodiazepines through my research, participation in online support forums, and my advocacy work. While not a comprehensive list of the risks, here are the things I wish I had known before ever accepting a prescription for a benzodiazepine:
- Physical dependence on benzodiazepines can develop in a matter of days or weeks. This can, and often does, occur in the absence of abuse or addiction. Physical dependence and addiction are two distinct entities. Being warned only about the addictive nature of benzodiazepines gave me a false sense of security, since I took my medication only as prescribed.
- Withdrawal symptoms can be intolerable and disabling in spite of a very slow taper over the course of years. The worst cases may become bedridden (or suffer severe symptoms such as akathisia), unable to do basic self-care tasks most people take for granted such as showering or cooking. Not everyone will experience symptoms to this extreme, but currently there is no research to predict which patients will have problems.
- Even commonly prescribed or “low doses” of benzodiazepines can be problematic. I took the lowest dose of Xanax possible (even lower than my prescribed dose), but I developed major problems nonetheless. The bottom line is, there is no such thing as a “safe” dose of any benzodiazepine.
- Benzodiazepine adverse effects, tolerance, and withdrawal can create a myriad of symptoms which are often confused with many chronic health conditions. Many patients, myself included, visit numerous doctors in search of an answer to the their problems, only to later discover the cause is their prescribed benzodiazepine.
- Perhaps the most disturbing thing is that these drugs can cause long-term brain damage, resulting in a protracted withdrawal syndrome that can persist years and may even be permanent. How many people would sign up for a benzodiazepine prescription if they understood this risk?
Fully informed consent regarding benzodiazepines is not happening in current practice, and that needs to change. The first step in solving the problem is ensuring that prescribers are fully aware of the risks. To start, all prescribers of benzodiazepines should educate themselves by reading the Ashton Manual, which contains information about benzodiazepine withdrawal and safe taper protocols. They should also read the prescribing guidelines for benzodiazepines (such as Pennsylvania and New York City), as well as websites containing educational material on benzodiazepines (such as Benzodiazepine Information Coalition, World Benzodiazepine Awareness Day, and the Alliance for Benzodiazepine Best Practices).
Once educated, prescribers have a responsibility to fully inform their patients of the risks of benzodiazepines–it’s simply not enough to expect a patient to read the drug sheet handed to them at the pharmacy. These drugs are so dangerous that written consent administered by the prescriber should be required before patients receive a prescription. This is currently not mandatory, but as more patients are recognizing they have been harmed by benzodiazepines, the push for this is growing. Informed consent bills initiated by benzodiazepine-injured patients are currently in progress in several states including Massachusetts, New Jersey and Connecticut.
Patients deserve to be given all the information needed to make the best decisions regarding their health: Anything less is unacceptable. Knowing that lack of adequate informed consent about these drugs is a gaping hole in current medical practice, I authored a consent form for benzodiazepine prescription, which contains everything I wish I’d been told before being given that Xanax prescription. Using this form has the potential to reduce patient suffering and save lives, so I am urging all prescribers to integrate this tool into their clinical practice.
This article originally appeared on KevinMD.com
Does anyone know how to become a BenzoBuddies?
I’ll try to make 10 months of Pain, Sleepless nights, Tremors and overall feeling ill as brief as possible. I am now 79 and after hearing horror stories about Benzodiazepines, my nightly dose was 6mg, I told my Primary Care Doctor (he is not the one who prescribed it 14 yrs ago) that I wanted off. I asked him how long it would take and he said 7 days, yes SEVEN DAYS. I stopped that day and felt I would have zero problems based on Oxycodone I had been prescribed for two months after total knee replacement and when I stopped the Oxycodone I had no problems. After 7 days I was on Deaths Doorstep. My Doctor started the taper of 6mg Lorazepam to .5mg of Clonazepam. Make a long story short I suffered and suffered and told myself I was going to get thru this. Every side effect of withdrawing I had. Finally asked the Pharmacist what the equivalent of 6mg Lorazepam to Clonazepam, he told me 3mg not .5mg. end of story. Can’t bear to go in all the gory details as I am on another journey to try and save my life.
I’ll try to make 10 months of Pain, Sleepless nights, Tremors and overall feeling ill as brief as possible. I am now 79 and after hearing horror stories about Benzodiazepines, my nightly dose was 6mg I told my Primary Care Doctor (he is not the one who prescribed it 14 yrs ago) that I wanted off. I asked him how long it would take and he said 7 days, yes SEVEN DAYS. I stopped that day and felt I would have zero problems based on Oxycodone I had been prescribed for two months after total knee replacement and when I stopped the Oxy I had no problems. After 7 days I was on Deaths Doorstep. My Doctor started the taper of 6mg to .5mg of Clonazepam. Make a long story short I suffered and suffered and told myself I was going to get thru this. Every side effect of withdrawing I had. Finally asked the Pharmacist what the equivalent of 6mg Lorazepam to Clonazepam, he told me 3mg not .5mg. end of story. Can’t bear to go in all the gory details as I am on another journey to try and save my life.
My primary care provider, which is an FQHC (Federally Qualified Health Center) has been doing informed consent, which I have to read and sign in the office, in addition to med reviews – now required every 3 months – for many years now. Perhaps it is the private practices that are not required to do this for benzos? My family member who takes clonazepam, as I do, has not been required to do this, and does not receive informed consent forms. And he receives many more refills per prescription than I do.
Alas, by the time they started doing all this it was too late for me, as I had already been prescribed clonazepam for several years by that time. And I had this feeling, even when a doctor spoke to me about the possibility of benzo dependence at small prescribed doses, that if a doctor was prescribing in the first place, that it couldn’t be that bad for me. Truthfully, I did not experience negative side effects while taking the prescribed dose, I only experienced relief from debilitating insomnia that nothing else, including cognitive behavioral therapy for insomnia and several alternative meds, could give me. It is only since I got a new young practitioner who forced the issue a bit, that I have been motivated to discontinue after 15 years of use. That was two years ago and I have been in an agonizingly painful taper since, with no end in sight. I functioned in my profession, in my personal life, I felt fine. Now I can barely function on most days. Covid isolation? Don’t even notice, I’m in withdrawal isolation, I barely leave my house, and I wonder if I’ll die before I get to live again. In part, practitioner approaches to benzo prescribing, seems to be generational. My relative’s practitioner has no problem whatsoever prescribing, after years, as long as my relative continues to say yes when asked if feeling continued benefit. I understand how damaging this drug can be, for me the greatest damage has resulted from discontinuation efforts.
Google “Point of Return”. I am not endorsing them just I wanna help ppl like you who were screwed by big pharma on benzos. I just finished my taper. Its hard but possible. May God help you.
Please please please give them a shot for your own sake.
I am 61 year old male protracted user, I was on Xanax and paxil for 6 years for neck injury, I have been drug free for 8 years , until this day I have still withdrawal symptoms from these drugs , from head pressure, burning skin, muscle pain , off balance issues , trembling legs . I was never warned about side effects of these drugs.
Hey man Google “Point of Return”. I am not endorsing them just I wanna help ppl like you who were screwed by big pharma on benzos. I just finished my taper. Its hard but possible. They can help you with protracted. May God help you.
Please please please give them a shot to get your life back. Again I am NOT endorsing them, just wanna help u or anybody. From experience, man its tough these withdrawal symptoms. THE HARDEST THING I HAVE EVER DONE.
where Can I find a Dr in California who can help with a taper prescription?
Hey Google “Point of Return”. I am not endorsing them just I wanna help ppl like you who were screwed by big pharma on benzos. I just finished my taper. Its hard but possible. They can help you with protracted. May God help you.
Please please please give them a shot to get your life back. Again I am NOT endorsing them, just wanna help u or anybody. From experience, man its tough these withdrawal symptoms. THE HARDEST THING I HAVE EVER DONE
I was prescribed clonazepam for approximately 18 years best I can remember. I was apparently in such a brain fog for so many years I don’t remember much from when my daughter was born to when I finally tapered off and as of now four months Benzo free.
During the time on clonazepam I lost two well paying jobs (I have an electrical engineering BS and a MS), many friends, bad choices, my house and eventually my marriage and a strained relationship with my daughter. Is it all the Benzo’s. Maybe, probably!
I wrecked my car one morning going to work from the morning brain fog, fortunately only a fender bender. But it was the drug fogging up my brain. My cognitive skills resulted in my job losses and having to overhear other engineers say I am stupid and wondering how I “bought” my degrees. Sadly they made my point, I have a brain injury.
I am 62 and trying to hold onto my job, nearly was fired this past spring for irrational behavior, ie. falling asleep and not able to get along with people…never had that problem before. Agitation and insomnia are terrible. The list of w/d symptoms are long. It is ugly what “we” go through.
As I said before, I am four months from my “jump” from 4mG of clonazepam. Around 1 mG I used the liquid titration method found in the Ashton Manual. I too am a member of Benzobuddies and where I found the Ashton Manual. Invaluable!
I am reading where maybe you heal and maybe you can get back to normal. Nothing is understood about the effects of these terrible drugs. I have asked several doctors and they look at you like you have four eyes. None would help me taper, not even the ass that prescribed this poison to me.
Let me tell you about the psychiatrist that wrote the scrips for years. And I asked him every time I would visit for my med check and new script. He said “we would retire together….” I told him I was addicted and gave me some bs…. He even one time told me how much of the clonazepam it would take to kill me. I was like WOW!
What started me thinking about getting off of my Benzo was IF something happened like a hurricane or other natural disaster and I couldn’t get my meds what would happen. I stopped once and you dont want to do that….SO I knew. I read as much as I could most from Benzobuddies and finally April 2018 I started my taper from 4mG. There were some bad days until I figured the liquid taper which made the taper linear without drops every two weeks.
March 14, 2019 was my last dose of 0.0125. About three weeks later all hell broke loose. Had the flu and minor surgery that month too. I finally realized that when I did get a decent nights sleep I did pretty well. Those days I dont I have major panic attacks and severe paranoia. Thankfully my X came to help me during a few days. My 18 year old daughter doesn’t get it yet. Not that I make excuses but its a real issue most days.
I shall end with saying, I can see better days ahead and I would take this path again over staying on the Benzo! I have good days and they feel great. They happen more often now, it is with this I have hope.
But part of me wants to sue the hell of of that doctor! I could lose everything I worked for in a few years before I could retire and all because of one terrible drug.
JStone (my benzobuddie handle)
July 12, 2019
I was told the lowest dose of Clonazepam is .125 and the lower doses are not available in liquid. Which liquid did you use?
I couldn’t tolerate a .125 taper. Im now on a custom liquid compound of clonazepam and taper 5% per month. I’ve been tapering for 4 months with no side affects. I have hope. Find a compounding pharmacy.
I have been taking Xanax for 6 or 7 years. At first I took it occasionally for an anxiety producing life event. I noticed it helped with back and other muscle spasms I have related to hypermobility and was told by a respected neurologist that I should take it on a schedule.which he generously prescribed for. You know the outcome , now I can’t easily stop it in the past year I’ve been shuffled between doctors because no one wants to prescribe it.
My family doctor decided that I needed to switch from taking the immediate release version several times a day to 2 extended release .5 pills. I was already taking this at night. This was a total reduction of .65 mg. I managed to get through several unexpectedly miserable weeks and , having started reading about the subject, I realize I had been having the beginnings of withdrawal symptoms between doses of the short acting pills. Also I’m curious whether the symptoms I thought I was treating with Xanax are really from taking the drug. ( spine twisting muscle spasms)
There is a question I have. In order to continue to reduce my medication I will have to switch to a different drug. I noticed you are using Valium for this purpose. My doctor has mentioned Klonopin to me but I’m seeing people mention using Valium to get off Klonopin!
Do you have information on this process that I can show to my family doctor as I navigate this?
This may be late but I tapered from 4mG clonazepam (Klonopin), took me about a year. Highly suggest liquid titration, you will find it in the Ashton Manual. Go slow and pay attention to your symptoms..I would go down by .2mL a day vs. taking an step down every two weeks. Didn’t get that sudden drop…
Thank you for standing up on behalf of those still suffering from benzodiazepine related injury, illness. For those benzodiazepine patients who are disregarded and labeled as “somatic illness” by Medical Doctors, Psychiatrists, Licensed Psychologists, Urgent Cares, Emergency Rooms. For those benzodiazpine patients who lost their lives to benzodiazepine and are no longer with us. We all Thank You, and are forever grateful you are helping bringing awareness to our suffering.
where Can I find a Dr in California who can help with a taper prescription?
Hey Google “Point of Return”. I am not endorsing them just I wanna help ppl like you who were screwed by big pharma on benzos. I just finished my taper. Its hard but possible. They can help you with protracted. May God help you.
Please please please give them a shot to get your life back. Again I am NOT endorsing them, just wanna help u or anybody. From experience, man its tough these withdrawal symptoms. THE HARDEST THING I HAVE EVER DONE