Update 2023
Since the 2019 publishing of this blog, we’re happy to report progress. Benzodiazepine-induced neurological dysfunction, aka BIND, was chosen by a team of stakeholders and medical experts as the preferred terminology to communicate this problem.
I can’t believe I have to say this, but brain and neurological injuries are not addictions. One way that benzodiazepine-damaged patients are silenced is by being forced to defend themselves against the addiction narrative that is attributed to them every time they share their experience. We need to find a way out of this dangerous loop.
Withdrawal symptoms experienced during cessation can persist for months to years after the last dose.
What people misunderstand about benzodiazepine harm is this: Benzodiazepine withdrawal is widely regarded as the most difficult and dangerous withdrawal of any class of drug. Withdrawal symptoms experienced during cessation can persist for months to years after the last dose. Medicine typically recognizes withdrawal as something persisting for weeks and then resolving. As a result, the protracted symptoms reflective of chronic illness are often attributed to other problems, unidentified by doctors as benzodiazepine-related. When these patients seek medical help, their harm frequently goes challenged or misdiagnosed since medicine overwhelmingly seems undereducated or in denial about prescribed harm, withdrawal, and the complicated art of deprescribing. As a result, patients report a frustrating inability to find any meaningful help within the same system that prescribed them benzodiazepines to begin with.
Getting Past Addiction Language
I wish we could start over with an entirely new language to discuss this problem. Initially, the benzodiazepine-harmed patient groups of the 1970s through the early 2010s used the word ‘addiction’ to describe their plight. Their rationale in doing so was that the problem would get more attention if it were viewed as a medical scandal — doctors and pharmaceutical companies making involuntary “addicts” out of unsuspecting patients.
Their rationale in doing so was that the problem would get more attention if it were viewed as a medical scandal — doctors and pharmaceutical companies making involuntary “addicts” out of unsuspecting patients.
This approach backfired, only creating blame, shame, and further harm to patients. Instead of medicine introspecting about the iatrogenic harm being caused to patients, those made physically dependent on benzodiazepines were now blamed by medicine, denied the repeat prescriptions required to taper, and/or forced to rapidly “detox” or “cold turkey.” This is disastrous as too-rapid cessation increases patients’ chances of developing long-term, severe, and disabling withdrawal syndromes.
Because of the ineffectiveness and resulting negligence from the above approach, Benzodiazepine Information Coalition (BIC) has campaigned heavily to educate that addiction and physical dependence are distinct phenomena that should not be conflated to reduce patient harm, prevent forced withdrawals and to advocate for already-physically-dependent patients to be allowed to stay on the medication, if they wish, or to taper at a self-determined pace. While our efforts have manifested some tangible mainstream change, it’s not enough. This problem needs a name that is an adequate descriptor or people will continue to misunderstand, and patients will continue to be negligently mistreated and harmed.
Language Influences Outcomes
Universally-recognized and accurate language would be a way to distinguish ourselves from the fallacious abuse and addiction narrative that has thoroughly infiltrated the media and medicine. It would also save us the frustration of about 500 words (or more) in every pamphlet, blog, interview, or explanation given about the problem, as we would have an accurate name to reference instead. One woman from the benzodiazepine-harmed community likened this terminology to the struggle of explaining the nuances and issues surrounding slavery without using the word slavery. It is very limiting and time-consuming, making the real problem lost in the explanation in a world of soundbites, word counts, and attention-grabbing headlines.
We are not alone here. Being silenced by language for having an invisible illness has happened amongst other patient groups as well. Like benzodiazepine-harmed patients, those diagnosed with what was once called ‘Chronic Fatigue Syndrome (CFS)’ attribute much of their mistreatment to that name. According to a New York Times article on the topic, the CFS label “often elicits very trite comments, possibly intended to be humorous, like ‘I’m tired, I must have that too.’”
CFS/ME patients, like benzodiazepine patients, are also often disbelieved and develop trauma around their experience with their doctors. Dr. Nancy Kilmas, an expert in ME/CFS, shares an observation whose sentiment most benzodiazepine-harmed patients can identify with: “They came to a doctor with Chronic Fatigue Syndrome; they left the doctor with PTSD.”
“You can’t start on a false premise and make it better.”
Most patients now prefer the term ‘Myalgic Encephalomyelitis (ME)’ to more accurately describe their condition. A quote by Dr. Byron Hyde, an ME expert, regarding the CFS vs ME debate, resonates deeply as it is relevant to the benzodiazepine problem as well: “You can’t start on a false premise and make it better.”
The “Floxies,” harmed by fluoroquinolone antibiotics like Levaquin and Ciprofloxacin, are another patient group forced to band together and advocate for themselves. The FDA received reports for decades detailing hundreds of thousands of “serious adverse events” resulting from the antibiotic class. In 2015, the FDA voted to recognize Fluoroquinolone Associated Disability (FQAD) as a syndrome based on 178 cases that the agency regarded as clear-cut. This recognition came with new FDA-boxed warnings, class action suits, and subsequent research. While the fluoroquinolone problem is far from solved, as many patients remain permanently disabled and the drugs are still overprescribed, it has at least been recognized and given an official name. Despite the overwhelming number of cases on file with the FDA, the same cannot be said for benzodiazepine-induced harm. This lack of recognition may be one reason why there is still inaction and a lack of pharmacovigilance for benzodiazepines after all this time.
Like the ME and the Floxie communities, a plethora of online benzo patient awareness and support groups have emerged. These groups don’t exist because medicine is handling things well; instead, they are a sign of the magnitude of impact that continued mislabeling has on actual patients and their lives. The discussions within the groups center around the severity and duration of symptoms and trying to survive the secondary wreckage faced in other aspects of life (financial, social, employment, etc.) resulting from benzo harm. Addiction-related talk barely exists. The groups are much closer to a cancer forum in comparison, except our “cancer” doesn’t typically exist in the minds of many medical providers, and nobody outside of those living with it and their families seems to care.
The groups are much closer to a cancer forum in comparison, except our “cancer” doesn’t typically exist in the minds of many medical providers, and nobody outside of those living with it and their families seems to care.
We Cannot Fix What We Cannot Communicate
At BIC, we often receive inquiries from journalists and other media outlets wanting to do a piece on “benzo addiction.” Our organization then will ask which “addiction” they are referring to — real addiction, or physical dependence, and other prescribed harms that are just being misclassified under the addiction umbrella? This usually prompts a discussion about the differences and results in (mostly) accurate terminology used in the final media story. Unfortunately, BIC isn’t consulted for every piece out there, and the internet is littered with dangerous misinformation from media outlets around this issue. How can consumers and the public get informed if this is what we are up against?
Seeking help from the medical field doesn’t typically go any better. Instead of having their damage addressed, chronically ill benzodiazepine patients are often forced to see addiction medicine specialists. As one may expect, these addiction medicine specialists tend to see every patient through an addiction lens. They, like many medical professionals, are often unaware of the level of harm benzodiazepines can cause and frequently invalidate benzodiazepine-harmed patients with observations and diagnoses such as “unwillingness to get better,” “malingerer,” or “underlying mental illness.” Some professionals are more sympathetic but still remain unable to provide any useful help simply due to a lack of education and scant benzodiazepine-harm-focused research around effective treatments.
Benzodiazepines are known to impact GABA-A, a receptor site that impacts nearly everything in the body. They also are associated with many system-wide problems including, but not limited to thyroid, menstrual irregularities, cancer, miscarriage, and even Alzheimers. It isn’t a stretch to take it further and say they may profoundly impact a patient’s health adversely; the possibilities for what could be occurring are enormous. Stephen LaCorte, J.D., who serves on BIC’s Board of Directors, wrote an extensive paper in which he hypothesizes one potential cause of benzodiazepine pathophysiology. He states:
Once triggered, the elements of the NO/ONOO(-) cycle perpetuate pathophysiology, perhaps including reduced GABAA receptor functioning, that may explain protracted withdrawal associated symptoms while the vicious cycle nature of the NO/ONOO(-) cycle may explain how withdrawal becomes a chronic state.
These are the types of questions medical researchers should be asking. What physiological changes have been induced by taking benzodiazepines as prescribed? The answers to questions like these and similar might one day alleviate the suffering of those harmed by prescribed benzodiazepines. We will never have answers if the “addiction” status quo persists.
We will never have answers if the “addiction” status quo persists.
Getting An Accurate Name
Benzodiazepine-harmed patients, already tasked with solving this problem on their own because of the lack of awareness and formal recognition, have brainstormed terms they think might better describe the problem. Some examples include Protracted Withdrawal Syndrome, Post Acute Withdrawal Syndrome, neurological damage, brain injury, Lader-Ashton Syndrome (named after UK benzodiazepine experts Dr. Malcom Lader and Dr. Heather Ashton), neurotoxicity, benzodiazepine-induced autoimmune disease, Benzodiazepine Injury Syndrome, and Benzodiazepine Withdrawal Syndrome (BWS) — the latter being the most recognizable due to it having an existing Wikipedia entry. I think BWS is the most used alternative to the addiction narrative, but it is not optimal as it is unclear in that the term ‘withdrawal’ implies it’s short-lived. It’s also not ideal in that many patients are quite sick from benzodiazepines, due to tolerance and other adverse effects, well before they ever withdraw from them.
Nothing in either the ICD-10 or the DSM-5 seems to address the real harm that benzodiazepine patients are experiencing.
I am not proposing to know what the new language should be — it’s up for debate. I hope to start conversations inside and outside the community about why a new language is needed. If we agree, the next steps could be taken to narrow down an official name for this condition that might be formally recognized. Getting a new diagnosis code is a complicated process involving petitioning the ICD-10 Coordination and Maintenance Committee (C&M) with evidence or convincing the next DSM committee. Nothing in either the ICD-10 or the DSM-5 seems to address the real harm that benzodiazepine patients are experiencing. It’s hard to pick a name now when the science is so premature in even identifying what’s occurring in patients on a biological level to cause the problems being experienced. I’m unsure if we would be successful with this route, but it’s at least worth discussing.
The burden has always been huge on benzodiazepine-harmed patients to inform their prescribers, their families, legislators, the media, and the public about the problems associated with prescribed benzodiazepines — especially correcting preconceived notions. The lack of existing research leaves patients and activists in a frustrating dilemma. What do we call ourselves to distinguish our plight? Does it even matter what we call ourselves if the media, prescribers, and legislators don’t understand it because they are so married to addiction narrative? What do we do to stop this confusion and start getting the help we need to stop this prescribed patient-injury epidemic?
Thank you for this. It is comforting to know this and that I am not alone, or crazy.
A couple of resources that I found helpful are:
1) The Withdrawal Project/TWP
2) A film titled, Medicating Normal. It’s private and presented by different platforms and therefore cost $10 but worth every penny.
I did a huge mistake in 2016 when i asked a doctor to prescribe me Clonazepam in sweden when i Was working there. My wife has put a lot of pressure to Come back to her country. So i couldnt cope with all the interviews, flying and my current stressfull job. I Was also drinking heavily at that point of time, since I Was so frustrated, because i didnt want to lose my current dream job i Was battling for. But the bitch insisted. The doctor didnt warn me abou the risks… I took it 4 month long while also drinking heavily. Just now i understand that i simply could die any time during this time. I found 20 New jobs, signed a contract a stopped taking clonazepam, basically CT. I didnt know that such thing like withdrawal existed. I did CT while still flying to business trips, you can understand how felt. I simply couldnt talk and walk straight. My wife insted of helping me Just put me more under pressure. When i started New job i could cope with all the stress and had to ask for a medical help. I Was put on lamotrigine, remeron, amytriptilie. I Was declining in health and didnt know what Was happening with me. I Was a project leader and couldnt take any time to rest, worked under this condition till the end of the project. I finished the project and went for a sick leave in May 2019. I felt so bad that i Was literary dying. My wife Was there all the time and didnt do anything and even forced me to fly to their relatives in this condition, i dont even see the point because i Was also lying and dying there. When i came back i voulantary asked me to put me into the psychiatry where they gave wean me off everything. My Mother Was there with me and had everything under control. My wife told my Mother to fly back home and told me to go other klinik only to have conversations and do some sports program. When i went there my wife told me to go back on medication and her brother talked to the doctor to put me on pills. I couldnt fight with them all anymore and started to take AD, neuroleptica. They tried all the med they had on me. I Was lying with a high temperature, didnt sleep, developed akathisia. When i filled it and sent it to my wife and her brother they said its Just side effects, nothing else… When I said to the doctor i have a brain damage they were very cruel and said it is not a posion what they give me. Finally they made a decision to give me benzos… And killed me completelly, they put me in a vegetable state, where i am untill now… 100% mentally handy capped,living with my parents. My wife has stollen all my money, daughter and our flat (even changed the locks). She divorses from me now saying I am not the guy She has married… When I came there once to see the dauther together with my mom She forced me to go to closed facility and to give her my passport (dont understand why, maybe to convert a mortgage on my flat on my name).
I am 100% mentally handy capped and dont know how my future looks like. You May understand the only thoughts i have… I had 2 university degrees in economics and mathematics, life which you could only dream about, perspectives and so on… I didnt want to marry this bith but She insisted (She Was like a hitler). My life is ruined, my parents cant do anything with me hoping i Will be back on the horse in couple of months, but i Will never be… Ruined life… Whom should i blame? My wife? Myself that didnt learn to say no and always did everything against my Will, that i had to drink alk to forget how weak i am? Doctors Who prescribe this killing pills after 5 min of conversations? This fucking pharma companies Who make the packages with 90 pills!!! Why now only 5 or 10???.
I am a vegetable now with only 2 interests: to go for a smoke and to play smart Phone games… And to eat sweets i forgot. I played this real life game and Was too week for it. It has eaten me completelly. I really hope i can recover for at least to work as smth. usefull in this society. My stupid life..
Tony
Tony, I am so incredibly sorry to read your story. I understand you completely though. I have gone through the same with having been on clonazepam for 15 years. It was prescribed to me for sleep! But it has ruined my life completely. I was a good school teacher for many years and had to lose my career too.
Have you heard of a website called “The Withdraw Project”? There is also a film online only called “Medicating Normal”
Both are excellent resources that will offer at least some help in the way of understanding all of this better. You have my sympathy and compassion because I know what a horrible experience this is. It’s so sad and the pharmaceutical industries are who is truly at fault. They knew how bad these meds were and gladly handed them out. I’m here if you ever want to write and vent or just talk.
Take Care~
Jody
Excellent article. Thank you.
Yes, your article put it so well. We may see a sentence on news that starts with benzo-damage and without transition ends the thought with Inappropriate addictopn talk.
Communication with UK leaders seems especially fruitless. Officials and physicians and charity representatives still call iatrogenic benzo illness, addiction. When corrected, they commonly claim that benzo patients are “involuntarily addicted”.
So your well-done article should be spread the world over. Unless we call the damage what it is, we will not begin to effectively address it. We will allow further harm to the already harmed.
Well done!
Been taking Xanax for 25 years + and I so very sick
If the medical community knew anything about this “process” of eliminating benzos from one’s body…we would have some peace and confidence. This is the tragedy. Nobody seems to know…
1. How long does it take to eliminate benzos from one’s body?
2. What has happened to the brain of a user of benzos?
3. Is tapering WORSE or WORTH THE SUFFERING or is a certain dose acceptable for the remainder of a person’s life?
4. Will the patient be able to return to a peaceful…healthy state after detox?
5. Why was the Rx dispensed for years…and in many cases…a lifetime…when the current recommendation is no more than 2 to 4 weeks?
5. Are there new studies that have identified a problem with benzodiazepines that was NOT known for decades prior?
6. What new understanding of this Rx has resulted in the detoxing and drastic reduction of prescriptions during the last few years?
Numerous doctors have provided numerous answers to these questions…all answers were different. Something is very wrong here.
These were brilliant questions. After 6 years with my most recent provider, I asked some basic questions as he terminated my care under false pretenses to justify his inability to work with me. Questions he wasn’t able to truly answer:
1) Do you even know why I was prescribed this by another provider? He said no.
2) Do you know exactly how long I’ve been taking it? He said no.
3) You don’t know how many times I’ve gone into abrupt withdrawal either, do you? He said no. This is significant in that with each abrupt withdrawal, it’s not kindling you need to worry about. The more withdrawals you’ve had the more it increases your risk of death.
What a Godsend you all have been. I was “weened” off Clonopin over 8 weeks by a doctor. Little did I know until now that was way too fast. I was prescribed Clonazepam 15 years ago. Over 15 years, by 6 doctors, they increased my dosage because I was re-diagnosed with Bipolar 1 Disorder in 2008. For the last 11 years, I was prescribed 6 mgs. a day. I took it as directed. Withdrawal has left me in so much pain…I feel like I have a massive sinus infection, my heart races, I cannot breath right, my brain and mouth do not connect, I cannot sleep. The doctor’s answer…to try to give me another Benzodiazepine prescription. No way!!! I’d rather suffer in pain then ever go through this again. I’m so thankful I’m alive. I shouldn’t be after the hell I’m going through. I’m thankful I’ve found an outlet and people I can turn to who understand.
I suffered sever anxiety after medical procedure went wrong. I am already on an antidepressant for medical fears. I was put on clonazepam while I was waiting for the meds to kick in. I was on it for about 1 month and looking to get off but the pain from the torn rotator cuffs put me right back in it. It has been 3 1/2 months. I also suffer from stress IBS. I tried to ween but am such a mess. Can anyone give me some advice on treating both issues. I do not have a psychiatrist just a family practitioner who really doesn’t understand.
Robin.. go to benzobuddies.org They understand the Ashton Manual… and there are
people there that will tell you how to get off safely. I had to cross over to Valium ..and then taper. I am still tapering very slowly. I went off Ativan in 6 weeks and ended up
in hospital with a heart attack.. Soooo don’t do that. .5 Ativan is equal to 15mg Valium. That is how strong those benzos are. Benzo buddies ..will tell you how to turn a portion of your pills into liquid … I take pills and pour out 2ml of liquid which equals 2mg valium and withdraw with a syringe some every day for a few days and then I hold that dose for 5-7 days then withdraw again. It is the only way I can do
it and not end up in the hospital.
Don’t give up. But do get advice from people who have been there. I’m a long way
from being off … I figure at least 9 months to a year. And then I pray I don’t have a rebound effect after a few weeks. That is what happens to a lot of people. That is the reason to go low and go slow. Valium is a good cross-over because it has a long
half life and that helps with the whole process.
Good luck and don’t give up. You got this. You just need information on how to do it.
Tricia
Respectfully, I must disagree with Benzo Buddies.
1) The atmosphere is extremely toxic. Users are often quite harsh with others – especially if the person had to reinstate.
2) People go there mostly to whine and complain. Many people who were on benzos for just a few weeks at very low doses begin acting as though they too have major withdrawal symptoms.
3) Heather Ashton is like God to them. You disagree and everyone jumps on you.
I’ve read Ashton’s research and her taper manual was derived from researching maybe 50 participants. She Ran a clinic for a decade but it wasn’t dedicated to benzo dependence. Her initial estimations of the half life of valium were way off. That research was done decades ago. We know so much more now.
Advice: Find a way to treat the cause of the IBS. CBD, exercise, stress reduction techniques, cognitive behavioral therapy, acupuncture, etc… Find a psychiatrist, a psychopharmacologist, or neruopsychiatrist. Find one who is benzo wise. If they can tell you the difference between dependency and addiction and advise you to avoid detox and rehab then you’ll have found a good one.
Anne i was on 2.5mg Valium for 6 weeks and my wd sxs were so severe I’ve had 2 strokes due to severe adrenaline surges putting my heart into Afib. The most recent stroke was 3 months ago and i lost my vision. Dr’s have verified that all that I’m suffering is due to bwd.
It doesn’t matter the dose or duration, sxs can be extremely severe. Please don’t think otherwise.
Please re-read. I said, “very low dose.” A dose of 2.5 mgs is not a low dose.
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I wasn’t aware this site had a floating comment section for each article.
Since there’s been recent medical research differentiating between addiction and dependence, I’m not in favor of change. The medical billing code is: ICD-10-CM F13.20. Benzo dependent. It’s a quick and easy way to signal that a person needs it as a matter of life or death.
If you’re advocating for a code for PAWS that complicates things because so many separate conditions like Tinnitus comprise PAWS. Physicians don’t treat or understand dependence in my experience, and they sure don’t believe much in PAWS.
I totally agree with you about the benzo sites. They’re horrible and the last place a person should look when tapering. They’re all ready to die tomorrow on this site. And will never get they’re life back.
I now respectfully disagree with you.
I have found Benzo Buddies to be an excellent source of hope, validation, optimism, and sound advice from both laypeople and scholars alike. I have encountered very few instances of people being harsh to one another on BB. I have seen what you describe in your #2 above, and it is sometimes curious, but I try not to question or doubt the level of symptoms that another person claims to be experiencing. Overall, I would not at all consider BB to be a toxic atmosphere.
I’m very puzzled by your comments about Heather Ashton’s work, and I have to wonder where you got your information on her research. First, her taper manual was derived from researching over 300 patients, not 50 as you have stated. Second, she ran her clinic for 12 years, from 1982-1994. Third, the clinic was absolutely solely dedicated to benzodiazepine withdrawal, which fully encompassed issues of dependence. Why would you claim otherwise? Furthermore, you state that “we know so much more now.” Unfortunately, very little research has been done in this area to further that of Ashton’s. A huge majority of what is known to this day about the effects of benzodiazepines is found in the Ashton Manual. Indeed, Heather Ashton is still currently internationally recognized as the world’s leading (late) expert on benzodiazepines. If you believe that we know so much more now, please cite your references.
Thank you for this
thank you so much for this article and this conversation. Your recognition of my current experience: harmed by the denial of the providers who initiated this harm to me out if ignorance that persists, is yet another hurdle in the challenges of this debilitating problem if iatrogenic harm.
I now respectfully disagree with you.
I have found Benzo Buddies to be an excellent source of hope, validation, optimism, and sound advice from both laypeople and scholars alike. I have encountered very few instances of people being harsh to one another on BB. I have seen what you describe in your #2 above, and it is sometimes curious, but I try not to question or doubt the level of symptoms that another person claims to be experiencing. Overall, I would not at all consider BB to be a toxic atmosphere.
I’m very puzzled by your comments about Heather Ashton’s work, and I have to wonder where you got your information on her research. First, her taper manual was derived from researching over 300 patients, not 50 as you have stated. Second, she ran her clinic for 12 years, from 1982-1994. Third, the clinic was absolutely solely dedicated to benzodiazepine withdrawal, which fully encompassed issues of dependence. Why would you claim otherwise? Furthermore, you state that “we know so much more now.” Unfortunately, very little research has been done in this area to further that of Ashton’s. A huge majority of what is known to this day about the effects of benzodiazepines is found in the Ashton Manual. Indeed, Heather Ashton is still currently internationally recognized as the world’s leading (late) expert on benzodiazepines. If you believe that we know so much more now, please cite your references.
Anne, I see much of what you report.
The atmosphere is threatening. Specifically, the management lacks very elementary education and so is unable to reason scientifically. There is no excuse to harass a member who offers validated science. Why would it be necessary to forbid mention of actual science or report inconvenient results.
We hear of studies of the “Ashton Method”, but where are they? That manual makes statements without citing actual and valid studies.
However, one item in that Ashton Manual is both valid and essential. She reminds the reader that half-life and duration of action are not the same concepts. This is usually ignored. The difference is essential to understand.
Most help-sites are unable to differentiate these concepts and so they issue instruction as if the estimated time between ingestion and the state of 50% of the benzo having been eliminated and the amount of benzo remaining in an individual were identical. They may be remarkably different intervals. This cannot be good.
BB’s, at best, is a place where people repeat second hand talk and hearsay and confuse verified science with opinion.
A fact is a fact no matter who repeats it. Is the sum of two and two more four if a mathematician says it? Might medicine take an invalid stance as a non medical person makes a valid statement? This is ad hominem as opposed to ad hoc, and this is the stock in trade at too many benzo-sites. Yes, I am talking about that one as well.
The benzo history has gathered a lot of moss. I’d urge people to use their own intellects and look for primary sourced evidence. It is in short supply. Let’s exchange ideas and not insults.
J. Hill
I tried benzo groups and fibromyalgia groups as well.My experience has been depressingly disappointing.
Can someone help me? I’ve been taking benzos for at least 6 years. Mostly clonopin and Valium. I have had anxiety most of my life, but after menopause and several back to back traumatic events in my life it worsened. I take 1mg 2 and now 3 times a day. How do I get off them safely??? I’m terrified. I don’t even know what to expect coming off them. What damage has been done? Please tell me where to go and what to do?
Elizabeth… go to benzobuddies.org. You need to completely cross over to valium..it has a long half life..Klonopin is very strong. .5 is equal to 15-20 mg of valium.. there is a benzo calculator if you google it. Benzo buddies will tell you how to turn it into a liquid and withdraw a small amount every day for a few days – then hold for 5-7 days and just keep doing that till you are done. You can’t hurry it. You have to go slow. You could have a stroke or heart attack if you don’t go slow.
Good luck. and don’t give up.
Benzo Buddies is a group of patients. This person needs a qualified and well-educated psychiatrist. A taper should never be done without the supervision of a physician.
Of course a qualified and well-educated psychiatrist would be an enviable resource for anyone wishing to taper off a benzo. Unfortunately, such physicians are extremely rare, especially in the U.S. Once a patient has decided on a method and rate of taper, (using resources like Ashton, BIC, Benzo Buddies), all the patient needs is a compliant physician who is willing to furnish the necessary prescriptions.
Indeed. Thank you.
Ideas for Safer Benzo Management:
Let’s be real. There will be no change in the torment of this drug, or any seriously damaging drug where there’s major support groups for long-term use or post use until we take control of the human nature GREED within this rediculously stated “first, do no harm” medical industry.
One suggestion is that it will take a personal patient-doctor contact of a sort, regarding a benzo contract between a doctor and a patient, and within it, there should be updated info with listed potential adversities and clear pharma representation of the prescriber and the prescriber’s qualifications, and possibly even a real life experience with the details of devastation that became regrettable, including the, possible, weaning process details where resources — without any liability factor — were available to assist or if they were not. And, were there any out-reach for any support group involved, as a result of using this medication?
As well, in this contract, there should be an actual betterment experience that, possibly, involves a safe discontinuation, long-term usage — a verified safe treatment result, and not simply moved onto another drug, or where it became necessary to rely on another drug.
This info would give the extremes of benefit or risk for gains, adversities before choosing to take one pill. In this contract as well needs to have up-to-date, true risks of adversities in common language, not medical terminology, such as “it may cause OSA,” and there needs to be a clear disclosure that any minimizing statements, whatsoever, is unlawful at that time or anytime afterwards within the initial management with benzodiazepines.
No minimizing.
No exceptions.
Yes, the intention is to scare them to where they do not want to use it unless it is absolutely necessary, and as for as short amount of time possible.
Benzodiazepines are very dangerous drugs and have been mismanaged for years, decades. It’s taken countless lives, both with a continuing heartbeat where the brain is barely functioning and literally where there is no heartbeat, after much horrible suffering.
This discovering after it’s too late result has got to stop.
Any mismanagement has got to stop.
The truths need to be told, first, not as an end result lesson.
The recent Lisa Long benzo program, in my opinion, was severely lacking and misleading in that “patients are Iacking in due diligence before taking it,” when, within the privacies of an appointment, doctors are minimizing and outright stating the warnings do not mean anything, when it’s learned too late that they are very real — I’ve personally learned this the hard way, after losing everything trying to get the truth when things went very wrong.
Truly it’s already a serious, silent epidemic… One for instance: how many people are being treated for sleep apnea, thinking it’s genetic when it’s actually the bevzos that’s causing such? And then there is the Alzheimer’s disease and Parkinson’s that’s becoming more and more common…
While the profits outweigh the lawsuits, greed will prevail. Contracts need to be implemented and minimizing statements about the potential drugs’ adversities needs to be stopped, outlawed!… And any longer than their said-to-be safe use should require a sleep study, if not somehow before the first pill.
There’s so, so much that needs to be done to prevent such deadly, damaging disasters, as it’s taken 13 year’s, and counting, of my seriously compromised life that could have been, and should have been avoided.
We as patients need to have common-sense medical greed protection!
Outstanding response. What happens to drs. that keep prescribing these horrible drugs. It is criminal what they do to us, two lost jobs, a lost marriage, possibility of my daughter having to care for me with dementia or Alzheimer’s…my quality of life was stolen. My dr told me we would retire together, with him saying he would retire leaving me damaged. Fortunately I tapered myself off Clonazepam, he didn’t even offer to help. It’s all about risk…
I just watched the CNN Lisa Ling episode regarding the benzo problem and I’m terrified to say the least. I’ve been prescribed Xanax for ten years for anxiety, 0.5mg twice a day. Should I Keep taking it? Should I tell the doctor I want to stop?
I’ve also been experiencing tingling in both feet since April of this year. Tests were done by a neurologist in June and no nerve damage was found.
Go to BenzoBuddies/taper methods….dr won’t help you or may even not know how to wean you off…whatever you do go VERY slow, there is no hurry. I used the liquid titration and it worked great, took me 11 months
No, please consider discontinuing the xanax. I’m day 3 of reducing on my own after seeing my physician and offered no help to stop taking it. I’m scared, terrified, already having withdrawal but I can’t continue living on a pill that is killing me instead of making me better. Too long 15 plus years is too long they just keep upping the dose.
Its horrific. its shocking how doctors seem to know so little about the withdrawl effects of these drugs and how to taper off them. I suffered miserably for months when i was withdrawing off them way too fast. Cheekbones, teeth and tongue burning tingling. Same with nerves in feet. Eating was impossible. Lost 40 pound in 3 months. Had sinus scan, stomach scan, colonoscopy, dental xrays, blood work ups and more to no avail. Kept telling my doctors it had to be the Ativan. After lengthy research on my own came across benzobuddies.org and people on there basicaly saved my life. The Ashton manual was a God send. Tapered for over a year and that was still too fast. Going on 3 years since done tapering and still have the tinitus and nerve damage in feet. Until I figured it out it was the worst experience of my life. I really thought I was not gong to survive. Its unfathomable that the doctors who prescribe these drugs know so little about them.
Benzodiazepine Brain Injury or Benzodiazepine Brain Damage
Those would be my 2 choices for the name of the illness.
“…nobody outside of those living with it and their families seems to care.”
Education example to make the general public care:
“ANYONE who takes a benzodiazepine can suffer from Benzo-induced neurotoxicity. There are NO studies that have determined who will or will not suffer short or protracted symptoms [alt. temporary or permanent damage], and who will show no signs of damage at all.”
(Is this language not accurate?)
BIN – Benzodiazepine Induced Neurotoxicity. You pegged it in the article title, JC! Covers withdrawal and post withdrawal, right?
I haven’t looked at the ICD codes for benzo damage, but I was one of the fiercest ME advocates for name and definition issues in the late 90s – early-mid 2000s. Launched one of the few early info & advocacy ME sites (distinct from but inclusive of ‘cfs’-labeled patients) in the US (name-us.org, now archived in Wayback). And I think a fellow advocate and I were the first to proactively and successfully lobby researchers Lenny Jason & Nancy Klimas to help distinguish ME & “cfs” when ICD reviews came up in the mid-oughts (2004-06 or so?).
It’s all very fuzzy now, due to benzo damage (1 mg K 2006-2016 for sleep and RLS; fast taper early 2017, ‘BIN’ ever since). But I do believe there are ICD revision periods where stakeholder participation is encouraged (I’m sure you know that already). At the time we participated, we felt more weight would be carried if our seasoned experts were the ones who submitted carefully worded comments. We were able to successfully thwart a CDC effort to further muddy and dismiss ME & cfs by combining them in the same ‘junk’ code, keep ME in the “Neurological Diseases” category where it has been since 1969, and cfs in the “Signs & Symptoms” (non-distinctive, mishmash per se) category until further research could clarify the different definitions for each entity.
I haven’t kept up, but I think the next generation of ME advocates may have been able to further separate CFS from CF (Chronic Fatigue Syndrome, the US’s politicized warping of what were most likely ME outbreaks/clusters in the 1980s, vs. idiopathic chronic fatigue). Don’t quote me on that though:-)
Anyway, over time advocates did many polls on a list of names. But ME, the earliest, most clear and distinct description of the disease, won hands down every time. Branding / marketing is a HUGE issue in stigmatized diseases, and allowing the CDC to get away with ‘cfs’ delayed research for 35 years! You’re right: As long as the victims themselves continue to use imprecise terminology to ‘label’ their own affliction to the general public with its 10 second attention span, we perpetuate the damage to ourselves. I still lobby ‘ME/CFS’ perpetuators to just drop the friggin CFS already! This is OUR disease; we have the right to call it what it truly is!
So, yeah, all the pwBINs (persons with Benzo-induced Neurotoxicity;-) out there should not use “addiction”, or self-blame for a prescriber’s ignorance in not recognizing tolerance. (Even the term ‘dependence’ is a little iffy, and should be reconsidered.)
(In the first paragraph above, I also should have included “pre-withdrawal” in what Benzo-induced neurotoxicity covers.)
Than God! You really get it. IT’S A DISEASE! I was thrown into this HELL for BPPV vertigo (2 mg Diazepam daily for 5 yrs ) with absolutely no warning and suffered not knowing what was happening to me with a major health decline and now I’m trying to heal from this Disease. The only thing is we can’t get a “cure” We have to navigate through this alone with no help from our doctors for the most part because they have no idea how to help get us through this.
Doctors need to be required by law to have patients sign an Informed Consent before they can prescribe all medications that are addictive.
I’m so sorry you were damaged too!
A quick look just now at the current ICD, in the Injury chapter:
“Chapter 19 Injury, poisoning and certain other consequences of external causes”, with a specific sub section of “T96 Sequelae of poisoning by drugs, medicaments and biological substances”.
That definitely describes benzo-induced neurotoxicity.
We have to make certain our doctors distinguish the “T” subsection from the “F” subsection which denotes “drug addiction” or “dependence” a mental & behavior disorder.
IMHO, we need a better word or phrase for “dependence”, which connotes weakness and thus some degree of victim-blaming. It may be the correct terminology as far as cell biology is concerned (not sure about that), but there’s gotta be a simple general term or phrase that connotes ‘injury beyond one’s control’ (or unintended poisoning?) for branding to the general public that induces empathy rather than dismissal.
I have read this often in a multitude of contexts and while I wholeheartedly agree, I would not want people to think that a law requiring informed consent would work towards helping with this mess. Thinking a law would help protect us may make us become complacent instead of actively protecting ourselves.
In the state of Ohio, there is a law for informed consent of surgical procedures when not due to emergency or unforeseen conditions.
It is my personal experience that any physician who chooses to believe that he alone is entitled to make decisions for patients will continue to act in that manner even when it means falsifying records. If it is easier to grab the co-pay and send a patient out the door with a script within the allotted 8 minutes even though the patient is uninformed of the true treatment plan, a physician may choose that path.
My heart is broken as I have come to realize this truth. There is no person on earth who has had more respect, admiration and gratitude for medical personnel than me. Twenty-five years ago, many, many physicians, nurses, radiologists, etc., worked tirelessly to repeatedly save my son’s life. It is important to note that what turned the corner for my son to survive was when the medical personnel realized my son was a unique individual and possibly the fabled ‘zebra’ of medical education. Once they realized they needed to follow what his body was telling them and not what their books were telling them, they were able to save him.
I did not come to this realization easily. I even briefly considered myself and my use of ativan (pain and cognitive difficulty) as being responsible for undergoing a surgical procedure that destroyed my ability to urinate. I had sought a surgical solution to repair a vaginal vault prolapse. I was not incontinent and the surgeon noted that in my chart. After surgery, I could not urinate and because I could not urinate except through a catheter, the surgeon had me on five 10 day courses of antibiotics for UTIs. For months, I complained of extreme pain with a failure to urinate. The surgeon sent me for physical therapy at a cost of $3000 out of pocket but that was not the worst part. The therapy was a very painful internal massage. I had ten excruciating sessions over 7 weeks before I gave up. Nine months after surgery, I felt the prolapse had returned and I saw a different physician who informed me that the previous surgeon did an extra procedure to fix incontinence even though I was not incontinent. This different physician said that he could reverse the procedure and restore my ability to urinate. He did and I am eternally grateful. Of course, I paid for the reversal.
I requested and paid for my surgical record and saw an Op Note by the first physician stating I needed a vault repair but that I consented to an additional procedure to fix incontinence even though I was not incontinent. Literally, this is what he put in my chart. He failed to offer explanation why this procedure was not listed on my consent form. I briefly wondered if I had possibly blacked out or had amnesia from the ativan during my consultation. I remembered the entire conversation except for discussion of a kelly-kennedy plication. The KKP was listed in the information packet with all of the procedures done by the physician but all of them did not pertain to all women and that one did not pertain to me. I can only assume that acceptance of the information packet meant I implied I would accept any or all of the procedures based on what the physician wanted to do to me while I was unconscious during surgery.
Ohio’s State Medical Board claimed they investigated. Nine of the twelve members were physicians themselves and may have been friends of this physician. The Board informed me the physician “did nothing medically or legally wrong”. This physician violated Ohio law when he performed an unauthorized procedure to fix a problem I did not have but since he remembered to insert an undocumented claim of consent then the board cleared him of wrongdoing. The Board claims a right to keep all information confidential and refuses to share how they came to their conclusion of “did nothing medically or legally wrong”.
(this view of the Board is incredibly scary and this is why I have made arrangements to leave the state of Ohio to have cardiac surgery)
I spent thousands of dollars to undo the damage this physician did to me. I was put at risk for c-diff and sepsis due to the antibiotics. I had an emergency room visit due to hemorrhagic cystitis from antibiotic and catheter use. I never wanted to go out because I was always in pain and was afraid of using a catheter in public. I suffered physically and emotionally for almost a year before the procedure was reversed. The surgeon had falsified my surgical record and he violated Ohio law when he failed to list the KKP on my consent form. If he had truly discussed it and I had consented, then I would have questioned its absence on my consent form and wondered if my surgical plan had changed just as I had once questioned a missing procedure on my son’s surgical consent form. So, no, I had not blacked out or had amnesia from ativan and somehow “forgot” the discussion and consent. It never happened and the physician is a criminal guilty of assault and falsifying records.
This long-winded reply means we cannot force others to change. Bad people are bad people in all walks of life. The Hippocratic Oath is a joke. Assigning blame is not the goal but is likely necessary as a starting point to find a reason and a place where things went wrong. Acknowledgement is necessary to make things right.
Ultimately, I made a decision that caused me damage. I am the one who suffers the consequences so I am the one who needs to find resolution for myself.
I wholeheartedly believe in sharing our experiences as a light on the path we travel but I think it is important to understand we take information offered to us, but we choose what to do with the information. If we are lucky, we get full and accurate information but mostly, too much information is hidden from us so our choices may put us in danger.
I am an advocate for sites such as benzobuddies. But like all things, caution is important. We all are unique individuals and no one knows us like we do. There are no crystal balls but we can pay attention to our own bodies and advocate for ourselves. Then, we can hold out a light for the next one. Maybe our experience has something to benefit others or maybe the next one or maybe the next one. But none of us will find it if we do not keep making noise and holding up our light.
I believe in a democratic society but I no longer have faith in the legislators/government that claim they represent and work for us, the people.
We are the only ones who will help us.
I left a previous comment on the ‘Jordan Peterson and Media problem’ that details my benzo journey.
Thank you for the consideration.
Thank you for this article. I will have to read it again as I did not read all the way through but wanted to mention that I saw Dr. Nancy Klimas about 15 years ago for Fibro/CFS which started post-viral around 1997. I was given Ativan as a sleep aid by a colleague of hers. I wish she would have mentioned then that Ativan should not be taken for extended periods of time….especially to get into REM sleep as suggested for me. Here I am all these years later suffering withdrawal from it with worsening of pre existing conditions and more.
This information is spot on with the shaming and addiction speak that I have received when talking about my klonopin use (as prescribed by a Psychatrist). I am trying to taper off but haven’t gotten there. Best I can tell, I don’t have any effects on being on the medication. I take it to help me sleep.
My heart goes out to all!
I suffered through Klonopin withdrawal after accidentally realizing I had become drug-dependent. I discovered this, while out-of-town on an extended weekend getaway, having neglected to pack my medications. It was HORRIFIC!
The worst part of all, for me, was that I didn’t even know I was dependent. I have been terrified of drug & alcohol addiction since a young age, having witnessed my father’s substance abuse, alcoholism & addiction (note: He was a psychiatrist!). So, to find out, accidentally, that I was dependent upon Klonopin was devastating.
It was a very scary time in my life. Withdrawal was HELL! Having to sit my 3 children down to explain the situation was humiliating.
With God’s Grace, my family’s support and my pure determination to rid myself of this poison, over the course many months I DID IT!
I also made sure my psychiatrist & psychologist knew what my problem was and that I had a good idea of how to solve it.
I told them about the Ashton Study (UK), which had given me some direction and a great deal of hope.
I am benzo-Free and able to FEEL again, both the suffering & the joys of life. Life’s too short to go through it ‘numb’.
I have been working with people addicted to Benzos for 20 years and I do not understand why you would allow patients to continue taking the benzos if they want to continue.
In addition there is so much information out there from people like you and others who warn us about use of Benzos.
We do not need more info we need to stop taking so many meds in general.
You missed the whole point of the article. This is talkong about people not addicted to benzos. If you work with people addicted then you should know the difference between addiction and dependency.
Exactly. I took this for over 30 yrs as prescribed and thought I didn’t need it anymore. What a joke. I messed with the taper for over a year and then stopped. Each month a new disaster appears. I thought I had went through the gates of hell then it just kept coming. Unable to stand for long periods of time, facial pain and severe head pain, stomach bloated huge, weight loss of 18 lbs. and I eat well and weigh 110. It feels like a motor is going non stop in the center of my belly. I have days where I moan and talk to myself it is horrible. And, it is only month 10 after the last dose. I am sitting up writing now, but know this is what they call a window and this will only last a few hours, then back to my head shaking and body violently twitching through the night. No, I don’t think I am addicted to this medication. I hate it. This is real physical damage from taking the crap as given to me by the doctor.
Hi robyn, can you explain what you mean by your body twitching? i have twitches all over, along with other symptoms.
I was prescribed valium 10mg 2x daily for 4mos. after a breakin and being violated in my own home. Then doc ended it cold turkey. That was 40 yrs. ago. Then when I started early menopause symptoms with itching and insomnia doc prescribed klonopin before bed for 2-3 years. I started experiencing vertigo and severe menstrual bleeding. Immune disfunction, allergies, chemical sensitivities. Doctors switched me to zanax, and a as needed dose of norco, for abdominal pain and migraines. I always asked for something else because I questioned why I started having so many health issues that I never experienced before. I am a retired holistic health professional and now after having cancer ,i notice the list of warnings on these medications have grown from a couple to 3 pages full. I chose to get off the medications and made the doctors aware. Big mistake bringing it to there attention. I asked for continued prescriptions to taper gradually to prevent seizures and all the basic withdrawal symptoms i may experience from the harm done to my physical body. I was labeled a drug seeker and addict. I was cut off cold turkey. The norco was not to bad but the benzos are the most challenging. I thank God i came across the bezoinfo and this blog. Due to the fact that I never finished my PhD although I am very knowledgeable. I am so tired of other health professionals dismissing the wounded because they lack the training or the drive to go the extra mile and make a difference instead they pawn us off to rehab and psych hospitals.
Its been 8 mos. now and I am so disabled as I write this my heart rate is extremely irregular and I am breaking out in a full body sweat. I am going to share the site info with my doctors. I can only hope that they are open minded. For the betterment of all.
When I speak about this after being harmed for 6 1/2 years and counting I say it’s benzodiazepine CNS injury. I’m not in withdrawal because that happened 61/2 years ago. What I’ve noticed is withdrawal tends to bring on “addiction” conversations. I’m not dependent because I stopped the medicine 6 1/2 years ago and saying that just doesn’t make sense. I am injured by this medication. I believe unlike ME you have different levels involved with this. People who are withdrawing are dependent. People who come to the end of their taper and still experience withdrawal symptoms are in withdrawal. People who have been off for a significant amount of time and still experiencing symptoms are protracted. However, people like myself 6 1/2 years out in my opinion are injured. I believe injury makes the most sense and impact. Injury definition is from an outside source. We say that we are harmed so disease and disorder doesn’t make sense to me.
Do you know if the patients were actually addicted or dependent? We want to move entirely away from the word “addiction” because it connotes a negative image and doctors want to relegate us into boxes with the label “addiction,” thus washing their hands of us. Iatrogenic dependence is more like it.
And, YES, by all means we need more info!! The more, the better. These pills have been under the radar for far too long. There has been a symposium of doctors and other medical people recently in Arizona, and they are beginning to do real research. We so need published research from people who are scientists and doctors and pharmacologists to present to the world. This CANNOT wait any longer. After 60 years, this is a complete travesty with doctors indeed doing lots of harm to patients.
Thank you.
This was in answer to Anna, but unfortunately it got pushed further down the page.
Because you CANNOT cut a person off cold turkey!!! That is a recipe for a life destroying disaster. And when I took Ativan… as prescribed by a physician…. I had NEVER heard of a benzo… and knew absolutely nothing about the dependency or horrific brain damage they cause.
JC- this article is spot on and articulates so many issues through which our community goes. To form a committee to challenge the ICD10 and DSM5, I believe, would be beneficial.
Of course, firstly,vast you stated, is to have researchers back a study to show what WE already know -how harmful these drugs are. Thank you for all of your hard work.
Is there anyone doing research to find a way to heal the damaged GABA a receptors which I understand causes the ongoing symptoms after having tapered off Benzos??
It is becoming very evident that most of what the medical community considers treatment are simply their magical pills which kill over 150,000 people each year who fill and take their new prescription correctly. Illegal drugs only kill between 50,000 to 70,000 yearly! Who is more dangerous, the illegal drug dealer or the legal one? No figures available for the number that doctors injury yearly.
Doctors and patients need to get informed of the severity of long term prescriptions of benzos! My adult daughter has been suffering for a long time now. We have exhausted a list of specialists and testing over the last three years. After 20 years on benzos, which were prescribed by several doctors, most of her problems are pointing to clonazepam / Klonopin along with several other medications. This is SO DISTURBING that doctors contributed to her illness (and continue to do so) and there are so few resources to try to stop taking these meds!
JC, I need Help! I have been trying to wean off after years of taking and my doctor isn’t helping me do a slower wean like I need to do.
go to benzobuddies.org They will help you get off. In my opinion .. you have to do a liquid titration. pills and liquid you can withdraw from every day for a few days then hold…then do it again and again .. eventually you will get to zero. I’m not there yet,
but I will be eventually. You can’t hurry it or you will have a stroke or a heart attack
or worse.
Again, another post with you aggressively pushing this website Benzo Buddies. They aren’t doctors! Anyone trying to get off of this needs to be under the care and supervision of a qualified medical professional. They need to stay positive and the site you mentioned is full of histrionics. It’s toxic and fails to focus on positivism and what’s going well.
Tricia is not “aggressively pushing” Benzo Buddies. She is recommending them, just as you have made recommendations of your own. Overall, I have found Benzo Buddies to be an excellent source of hope, validation, optimism, and sound advice from both laypeople and scholars alike. A qualified benzo-wise medical professional is very difficult to find, at least in the U.S. That is exactly why so many people are forced to seek out tapering guidelines outside of the medical community. And, even when a patient is fortunate enough to have a truly benzo-wise doctor to work with, the patient is still the one who should ultimately supervise the rate and method of his/her taper. Far too many well-meaning doctors have harmed patients with utterly inappropriate tapering.
Andy . 6
feb 2020. Positivism has no effect on benzodiazepine brain damage Anne, pragmatism is is the only logical way forward. Doctors are the ignorant people who started the benzo problem in the first place , I wouldn’t trust one to get me off orange juice. I understand exactly why people go to benzo buddies It’s because the doctors are bloody useless. This problem has been going on for far too long. WAKE UP DOCTORS you are killing people.
Thank you, JC, (and BIC) for your tireless, informative advocacy.