Since the advent of the internet and rise of social media, patients can connect and compare their experiences with prescribed drug withdrawal. A problem that was once considered rare is a worldwide epidemic that is finally getting noticed. A recent New York Times article discussed the problems many have discontinuing antidepressants, and more than 8,800 readers responded about their difficulty stopping these drugs. Another recent article discussed the role of online communities in supporting patients withdrawing from prescribed drugs. This led me to reflect on my observations as both a doctor and patient navigating online benzodiazepine withdrawal support forums.
The good
I discovered my prescription Xanax was making me ill via a Google search. After finding Benzobuddies, an online forum for benzodiazepine withdrawal, everything I was experiencing became clear. In the early days of my taper, this website was a lifeline. I found people with similar experiences, my suffering was validated, and I learned how to taper. My friend Ernie had just completed a four-year Valium taper when we met on Benzobuddies. He immediately adopted me, taught me tapering and coping skills, and shared everything he had learned through his own journey. He has supported me throughout my entire ordeal, for which I am eternally grateful. While my doctor has been supportive, he did not have the knowledge I learned from fellow forum members.
Once I had a taper plan, I utilized Benzobuddies for friendship and emotional support. It was here that I met my friend Ed, who started a blog documenting the last part of his taper. His good-nature and positivity were infectious, even in his suffering. Soon he amassed a group of friends who regularly interacted on his thread. We discussed our tapers and symptoms, but we also talked about our lives, families, hopes, and dreams, and provided each other with prayers and emotional support. We even discussed plans to meet up for a celebration cruise when we are healed. Ed used a highly sensitive lab grade scale to microtaper. He sent it to me as a gift after completing his taper, with the stipulation that I pass it on when I’m done. Ed’s doing better now and rarely on his blog. I’m thankful for his blog as I made several lifetime friends there. Most of my closest friendships from the forums have since migrated into real life, and we communicate via Facebook, text message, or phone. A few I’ve had the opportunity to meet in person.
The bad
While the forums can be a lifeline, there are also disadvantages. Suffering is everywhere, which can cause additional anxiety. Many are very sick, and horror stories abound. Posts about suicidal ideation occur almost daily, and suicides happen frequently. If you read long enough, you begin to experience a sense of doom. Some members are confused, angry, aggressive and paranoid (all symptoms of benzodiazepine withdrawal), so arguments break out often. Although forum moderators are quick to diffuse these situations, members are often exposed to triggering material.
Giving emotional support to others while you are ill is incredibly draining. By now, most members know I’m a physician because of my efforts to raise awareness. I receive messages almost daily asking for help, advice, or simply to tell their story. I always provide support when I can, but I am unable to give medical advice over the internet. When I become overwhelmed, there are times I have to unplug to protect my health and sanity.
As a physician, some of the medical advice I see on the forums makes me cringe. Giving advice is technically not allowed, but it happens anyway. There is a fine line between suggestions, personal experience, and advice. Some advice is good, but some can be life-threatening. Unfortunately, some of the most vulnerable members are not able to discern the difference. Many people are very angry at the medical establishment for their benzodiazepine injury, and often, denial of said injury, and that sometimes results in patients becoming entirely anti-medicine. One of my friends developed MRSA pneumonia and was prescribed antibiotics. She was told by several forum members to skip the antibiotics and try colloidal silver. Fortunately, she heeded her doctor’s advice. The worst case scenario is that people do not seek needed medical care based on the advice of other members.
The ugly
The ugly truth is these Internet forums exist because a certain percentage of patients will have iatrogenic complications and/or difficult withdrawals that often go unrecognized by the medical profession, particularly with benzodiazepines. Patients who become ill from their prescribed benzodiazepine often have their dose increased or are given other medications to treat the symptoms, with the assumption they have developed a new medical condition or their psychiatric condition has worsened. Many patients bounce from doctor to doctor receiving multiple negative tests and no diagnosis. Most health care providers are not adequately trained in recognizing benzodiazepine tolerance, side effects, or benzodiazepine withdrawal syndrome and are ill-trained in utilizing slow taper protocols. Current tapering guidelines espoused by the medical community are too fast for many that eventually end up on the forums. For instance, the FDA Xanax label suggests “the daily dosage be decreased by no more than 0.5 mg every three days”, which is ridiculously fast by any standards. It provides no other instruction except that some patients may require a more gradual reduction. Many, once they have problems withdrawing, are treated with the standard addiction model and sent to rehab, but a traditional 12-step model is not effective for those with prescribed drug dependence. In-person support resources from the medical community tailored for patients with dependence are mostly nonexistent. Consequently, patients are often left to taper off benzodiazepines alone.
For these reasons, it’s not shocking patients turn to the internet for advice and support. In a survey of the major benzodiazepine forums, out of 425 respondents, 66% reported their provider did not believe their symptoms were related to withdrawal. Only 9% were utilizing taper advice from their provider, with the overwhelming majority relying on advice from the internet. This needs to change. While these forums are invaluable, they are a sign of a broken system. It is imperative that providers are educated and involved in the withdrawal process. So what can providers do? The most important thing is to recognize that iatrogenic complications and difficult withdrawals from prescribed drugs exist. Then educate yourself via informational websites such as Benzodiazepine Information Coalition, World Benzodiazepine Awareness Day, or Inner Compass Initiative that draw on a wealth of information from years of experience in the patient withdrawal communities. Armed with this knowledge, you can help your patient discern right from wrong in the advice they receive on the internet and support them through prescribed drug withdrawal.
This blog original appeared on KevinMD.com
Christy Huff, MD, FACC is a board-certified cardiologist who resides in Fort Worth, Texas. She attended medical school at the University of Texas Southwestern Medical School in Dallas where she graduated Alpha Omega Alpha in 2001. She completed an internal medicine residency at Washington University in St. Louis in 2004. Her cardiology training was completed at U.T. Southwestern in 2008, with a focus in advanced cardiovascular imaging and noninvasive cardiology. She was in private practice as a cardiologist in Fort Worth from 2008-2011. Following the birth of her child, she made the decision to become a stay at home mom.
Dr. Huff is currently experiencing benzodiazepine withdrawal firsthand after she was prescribed Xanax for insomnia related to a major health crisis in 2015. After developing concerning symptoms and receiving no answers from her primary care doctor and a prominent neurologist, she began to research benzodiazepines and discovered her symptoms were consistent with benzodiazepine withdrawal syndrome. With the help of a local psychiatrist, she is slowly tapering off benzodiazepines using Valium. Christy’s personal experience has led her to realize the dangers of these drugs and the severity of the benzodiazepine withdrawal syndrome, neither of which were emphasized during her medical training. She is an advocate of better education of physicans regarding the dangers of benzodiazepines and how to safely taper patients off these drugs, and stronger regulation of the prescribing of benzodiazopines.
While I agree with most of what you said, Dr Huff, I also have some minor exceptions. I have been active on BB for almost seven years now and served as a Mod for a year. My BB name is eastcoast 62 and you are welcome to drop in on my Success Story. I am well know there.
In my experience on BB, I have rarely seen the extreme negativity and anger you talked about. It does happen, and for the reasons you list. But it IS unusual and BB goers to lengths to stop this sort of stuff. Mods are told to never give medical advice. This is done, however because I am an RN I feel comfortable giving MINOR medical advice privately (Personal Messages). I agree – the forum often does have a lot of people who are truly angry at doctors. Something I have noticed over the years is that in order to truly heal, you just have to stop this anger and focus on the positives. There ARE positives in this journey, if you allow them to happen. Your overall health may get so much better once off benzos (and I also include ADs).You may find you have a new attitude about your life, your medical care, and learn a lot more about yourself now that you are not being numbed by drugs. Something else I have noticed on the forum is that some people just kinda enjoy being the “sick” one. Benzo withdrawal is NOT an illness, it is a condition brought on by getting off these drugs. You may FEEL sick and tired and scared but you are not ill. People who get off on being in the sick role do not seem to heal as well as others.
I do believe that some benzo people DO get helped by some 12 Step programs. In fact, the 12 Steps are an incredibly wonderful way to teach yourself new ways of coping. Many benzo people, myself included, hurt people while we were on these drugs. We didn’t mean to but it happened. One of the 12 Steps is to identify who you hurt and try to make amends. I did just that and saved my sisters relationship with me from falling apart. I attended several AA meetings early in withdrawal, and while a lot of the content just did not apply to me, the 12 Steps made a lot of sense and I STILL use them.
@Annie – I was once a member of BB. I left BB because of the bullying and mistreatment I received there. It’s one thing to insult a person in a PM. It’s another thing to insult a person on the board, with thousands of members able to read the insult. At a time of vulnerability and a request for help to get off of a benzo, the last thing someone needs is a moderator taking one to task. I personally would NEVER return to the website, even if it were the only form of Benzo withdrawal support on the Internet.
Oh, and let me clarify. My being ‘taken to task’ was in response to a poll about whether or not there should be a place on the BB board to talk about politics. That has absolutely nothing to do with a person going through benzo withdrawal and looking for support. My comment in response to the poll was much more mild than other comments that I read. However, I was called out for my ‘attitude’ about it.
Dr Huff thank you for concise and incisive comment concerning this unknown and unrecognized addiction and withdrawal syndrome. You are educating us all and we appreciate it. As a physician who grew up in the era of the introduction of tranquilizers to the patients I am appalled at how little is written or known about this crisis in the medical literature. I bemoan the day that these so called wonder “happy” pills were introduced and still this many years later they still are unappreciated for the dangerous effects of use of these medications. Keep up your great work in alerting us in the medical profession of this malady.
As a PhD myself in Biopsychology who was prescribed Klonopin by a well meaning but totally uninformed psychiatrist for over 30 years and tried to taper unsuccessfully I wonder 2 things. 1) This post initially appeared quite some time ago and there is only 1 comment? 2) Does anyone from BIC know the incidence and cause of akethesia which I have suffered from for years and no longer can work.
Thank you.
I had akethesia from withdrawal of very VERY toxic neuroleptics…. anti-psychotic toxic drugs )… It is beyond hell… I could not work.
I could not function. Akethesia went away when a new doctor told me
to throw out the Thorazine !!! Eventually i got better and worked for
24 years. I also got Tardive Dyskinesia from Xanax withdrawal and from
the Thorazine.. Thorazine has been banned in Europe. It is EXTREMELY
toxic.. Poison. Most all anti-psychotics CAUSE paranoia,they do not cure it. Obviously i was misdiagnosed. Akethisia is way way way beyond hell !
Dear Anonymous,
I’m not a doctor but I too was prescribed Klonopin many years ago (1996) for general anxiety, with no warnings of dependency issues. I started developing side effects and in 2006 a tremor. Was told by my psychiatrist it was not related to the klonopin. I was then diagnosed with Dystonia, which, coincidentally, is helped with klonopin. I tried twice to stop taking but had to go back on as I too became too sick to work. My psychiatrist will not see me to help me taper as my neurologist started prescribing the medication in about 2013. I plan to do a slow liquid taper on my own when I retire, sooner than I thought I would but it’s the nature of this beast. I’m sorry that you can no longer work. Are you still on the klonopin?
I am a little confused by your question. Benzos absolutely can cause akesthisia, while yoou are on one and when you withdraw off one! In fact is pretty common. Other psych meds can cause it as well.
Are you aware of “Tolerance Withdrawal”? Understanding what that is might answer your question.
Dear Dr Huff, thank you for such a clear argument for better info on benzos. Since you are a Dr., can you provide support services for people suffering from withdrawal ? If you advertise your services for people with anxiety, you will have the clients in benzos to help. More importantly, you have access to Drs forums and conferences where you can spread the word. I have written to Drs but I have no legitimacy and I think I am not listened to. Thank you for your work.
Same reactions from doctors here. I have no credibility. They do not believe me about severe, severe, severe rebound insomnia from klonopin.
The doctors insist my thoughts are causing worry. Yet, i am convinced it
is because of benzo physical dependency / and my brain needing higher and higher doses.