I have a YouTube channel called “Benzo Brains.” My channel solely focuses on benzodiazepine education and awareness. You’d think that a personal little channel, with no gimmicks or entertainment value, which focuses on such uncomfortable and unrelatable subject matter as benzodiazepine dependence, withdrawal and associated disability would receive very little attention. Yet I have a surprisingly substantial audience with over 1,300 followers, and that’s just a fraction of the many thousands in online support groups. Why is this?
I think the answer to this question is the same answer to the question presented in the title of this piece: “Why World Benzodiazepine Awareness Day?” The answer is because it’s desperately needed! You only have to look at some of the comments left under the video I made for World Benzodiazepine Awareness Day (W-BAD) last year to see how desperate people are for help:
“My withdrawals are still horrible on the Valium and my own family and none of the doctors believe me.”
“I had no idea 0.5mg of K [Klonopin] is equivalent to 10mg of Valium! What was my doctor thinking?!”
“I went to my regular doctor regarding tapering and he told me to take 5 mg for 2 weeks then 2.5 mg for 2 weeks, then stop. The symptoms I went through detoxing this rapidly were actually demonic… since then I have learnt tapering is meant to be 10% every two weeks. but I guess I was unlucky… truly a crime against humanity.”
“I stopped C/T [cold-turkey] as my doctor told me that I would be fine. Hah, go figure!”
“My greatest fear of all… is that I’ll walk into my appointment and be informed that day that she can no longer support my taper and tell me I have 2 weeks to wrap it up.”
The common thread in all these comments is that people who are suffering from a benzodiazepine associated disability (BAD) have little to no support from friends, family or the medical community on whom they are often completely dependent. W-BAD exists to bring those of us who have been injured out of the shadows and into the public conversation so the community of iatrogenically ill can receive the validation, compassion and medical attention they need. Right now the benzo-injured face two main problems in getting the help they need:
- Recognition of the illness itself
- The stigma of taking a controlled substance that is also a psychiatric medication
BAD is bad enough, but to add insult to injury, when we reach out for help to medical providers, we are either labeled as “addicts” and directed toward addiction treatment programs or are misdiagnosed with various mental illnesses (and other disorders) and prescribed even more psychiatric medication. This is in spite of the fact that the majority of people prescribed benzodiazepines never abuse them, and many are prescribed this class of drugs for things other than psychiatric illness, such as tinnitus or muscle pain. The following stories from people I have interviewed show us why both the addiction and psychiatric approaches are not only inappropriate, but also harmful to people who have been injured by a benzodiazepine taken as prescribed.
Robert Pfeffer: Dallas, Texas USA
Robert was a high functioning individual with every expectation of a prosperous career and good life. He started out at the University of Chicago and then received his masters at Oxford University. He went on to complete his studies at the University of Alabama School of Law. Deciding that he wanted to utilize therapy to help him deal with the everyday stresses of such a high performance job and his own strict standards of perfection, Robert reached out to a psychologist for therapy. The psychologist insisted that she would not treat anyone who was not utilizing psychiatric medications in conjunction with her therapy. She referred him to a doctor who prescribed him Paxil and Klonopin. After taking the medications as prescribed for some time, the adverse effects began to take their toll on Robert’s health. Over the next 18 years, Robert was prescribed various psychiatric medications to combat the overwhelming adverse effects of his original prescription, including Prozac, Elavil, Doxepin, Neurontin, Remeron, Buspar, Seroquel, and several blood pressure medications. Robert had many visits to the ER with severe blood pressure spikes but no one ever attributed any of his symptoms to the medications he was taking.
Eventually Robert was able to get off all his prescriptions except Klonopin. To rid himself of the Klonopin required that he spend two and a half years painfully tapering from it. Finally, at the age of 45, Robert was drug free. Unfortunately, this did not mean he was free of the long-term effects of having taken a benzodiazepine for so many years. Six years off Klonopin, while most of his neurological symptoms have cleared up, Robert is still plagued with chronic debilitating neck spasms, head buzzing and tingling throughout his entire body. He is so disabled by the neck and head pain that he is unable to work. Neck injections, radiofrequency to burn the nerve endings, pain medications and therapy have all been utilized to no avail. The only thing that relieves his muscle spasticity is an occasional low dose of Klonopin. His chronic ill health has has led to Robert’s wife of five and a half years moving out (sadly, many caregivers of people experiencing BAD experience “burnout” due to the sometimes chronic nature of benzodiazepine suffering). Robert’s friends keep telling him to “get help,” not understanding that it was the “help” that created this disability in the first place. Having reached the limits of his endurance and feeling that he has no quality of life, Robert has reached out to Dignitas and is preparing for his final interview before they determine if he is a candidate for end-of-life assistance. According to Robert, he has not fully decided yet if he will follow through with this plan, but his situation feels desperate enough that he is giving it serious consideration.
Doug Joiner: Lynchburg, Virginia USA
Doug was an extremely motivated and successful pharmaceutical sales rep who graduated in the top of his class. Dealing with the stress of a highly competitive profession and the death of his father, Doug went to his doctor for help. There he was prescribed Xanax. The effects of Doug’s iatrogenic injury from long-term benzodiazepine use became apparent when he began working for a new company. He was unable to concentrate and had difficulty learning the new systems required to perform his job. He was also suddenly plagued by screaming tinnitus, debilitating pain and deep depression. Eventually, all of this led to Doug being let go from his position in the company. He tried yoga, meditation and exercise in an attempt to cope with the “anxiety,” but nothing worked (benzodiazepine-induced “anxiety,” from tolerance and withdrawal is a chemical anxiety as opposed to an intrinsic anxiety and does not respond to standard treatments). Realizing Xanax was the source of his problem, Doug decided to check himself into a “detox” facility, even though he had not been abusing his prescription and was taking it as prescribed. He was prescribed other medications during his treatment which did not help. Like so many others who are subjected to a cold-turkey or rapid withdrawal for benzodiazepine dependence, Doug experienced life-threatening seizures. This terrified him, causing him to check out of the center before he was due to be released. Two weeks later, Doug shot himself, leaving behind his daughter and fiancé. In a note to his family, Doug said the following:
The Xanax, Ativan and ultimately Valium eroded my mind and will to where I cannot stand the depression and fight anymore… I don’t believe I would be able to be employed due to age and inability to concentrate. I am not stable enough now to be accepted at Pathways [another drug rehab center] and withstand further withdrawal… Everyone please, please, go on without me…
I would like to say these stories are extreme examples, but they are not. It may be that only an estimated 20-30% of the population has such a severe reaction to benzodiazepines and that most can and do heal from BAD. However, in the 20-30% who do have severe effects, BAD is so mentally and physically disabling, so unbearable, that those who have experienced chemotherapy for stage 4 cancer, childhood sexual abuse, losing a child and war have all stated that BAD far surpasses any suffering they have previously experienced. People like Doug and Robert are not weak, instead they are like a man in a burning building who seems to have no options other than to burn or jump out of the window. We need better options for those of us who have been caught in that burning building.
Stories like the ones told above are why I am joining with W-BAD today, July 11th, and why I am asking you to do the same. If those aren’t compelling enough reasons, consider that 40-90% of the time benzodiazepines are prescribed there is no clear medical reason for doing so; benzodiazepines are contraindicated in the treatment of PTSD and yet they are regularly prescribed to soldiers; Valium and all the others increase the risk of Alzheimer’s and dementia in the elderly by 83% and yet people over the age of 65 are prescribed benzos more than any other age group; innocent people are being rendered homeless and friendless because they can’t get a valid diagnosis or get on disability for their condition, as BAD is so misunderstood and disbelieved. Finally, I am participating in W-BAD today, and you should too, because you know somebody right now who is taking a benzodiazepine and that person might just be dealing with chronic health problems, unaware that they are result of taking the medication as prescribed.
When people turn to some random ex-school teacher/musician on YouTube with no medical experience for advice on how to safely taper off their benzodiazepine and appropriately manage symptoms, you know they are desperate for help. Please do something on July 11th to bring these people out of the shadows and educate those around you. Participating is easy. Visit w-bad.org. Change your Facebook profile picture for a day. Share this video. Donate to the “As Prescribed” documentary film. Share an article. Share your own story. Heck, share someone else’s story! Do whatever you can to reach out. If I have learned anything through my own personal activism efforts it’s that you might be saving the life of someone you didn’t even know was listening. While nothing can replace the losses experienced by the victims and loved ones of BAD, your compassion just might mean their struggle was not in vain.
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.