WARNING: If you are currently taking a benzodiazepine (such as Xanax, Ativan, Valium, Librium, or Klonipin), NEVER discontinue the drug abruptly! Doing so can have serious long-term health effects and can even be fatal.
Also, never consume any amount of alcohol with these medications, and/or when tapering off the medicine. Even a small amount of alcohol will have detrimental effects. (H/T to Mr Robert for the reminder to add this to the warning.)
Once a fairly regular writer and commenter on Daily Kos, I’ve been very quiet of late. I normally just don’t have the stamina or focus to do anything else in the evenings—after I’ve managed to make dinner for the family and do chores (when I even have the energy to do that much), it is all I can do to even read, much less write.
I’m fortunate to still be able to work—my days are normally not that bad, aside from the racing thoughts and chemically-induced feelings of fear—but I worry there might come a time where I may be unable to do even that. As my husband advises, I try very hard not to engage in “what-if” thinking, but with two kids and a household that depend on my income, I do worry. I want to remain healthy and function in my job and home life, even if I can’t always write or participate in the things that I used to enjoy.
What has brought on this perpetual state of duress? A tiny pill and the fact that I put too much trust in the medical system that prescribed it.
As a preface to my recounting my experiences, it is not my intent for readers to feel sorry for me, but instead to bring about awareness. Tens of thousands like me, maybe even millions, are in the same boat as me. Many have had exponentially worse experiences than I have had, and with little to no support from their families, friends, employers, and doctors.
On three of these four counts, I am lucky. I am blessed with a wonderfully supportive family and circle of friends, and also an understanding employer. However, I still struggle with my doctors and the medical and pharma communities at large who still have a gross misunderstanding of the dangers of benzodiazepines (“benzos” for short) and just how negatively they can impact people’s lives.
My own journey with benzos began when my psychiatrist switched me to several different antidepressants when my previous medicine had ceased to work. Due to the medication changes, I was experiencing quite a bit of insomnia and anxiety—more than I normally experienced—so my doctor prescribed Valium for me. Never once did my doctor warn me about the possible adverse effects of long-term use, or even the consequences of suddenly stopping the medication.
It was this lack of information that led to my being hospitalized briefly in a mental health center and the fallout afterward (more on that later). One could posit that the shame is on me as I didn’t research the medication upon starting to take it. However, I simply did what many in my emotionally vulnerable state did: I trusted my doctor.
The medication wasn’t alleviating my symptoms, so the doctor proceeded to switch my medications numerous times, advising me all the while that I could keep taking the Valium to keep my anxiety and insomnia at bay. I found that I needed to take more of the medicine for it to work properly...and soon the Valium itself began to make me depressed. Horribly depressed. More than I’d ever felt, even when I wasn’t taking anti-depressants at all.
So I quit taking the Valium. A day or so later, the depression would subside, only to be replaced by gripping anxiety and feelings of panic. Hyperventilation, tremors, high adrenaline, and other high-anxiety symptoms. So I’d do what my doctor advised and take some more Valium, but then I found that I’d become very depressed again. So I’d skip the Valium for a day. Lather, rinse, repeat for weeks on end.
Even in my most depressed states in life, I’d never had the urge to kill myself. But now, I started to ruminate about it. After what was now months of being on an emotional rollercoaster of depression-panic-depression-panic, I was so sick of feeling that way that I’d just wanted to give up. I didn’t have an official plan of acting on my thoughts, but the thoughts themselves terrified me.
My first trip to the ER was in early November of last year. With my parents, sister, and husband around me in the ER room, a psychiatrist over a Skype monitor told me that doctors should never give depressed people Valium and that I should be on something like Klonopin instead. He then said I seemed to have sound judgment and released me with a script of Klonopin.
I was only on that medication for less than a week. It, too, made me depressed as well, so I quit taking it. Again, no doctor warned me of the ramifications of quitting one of these medicines “cold-turkey,” so a week later, I ended up in the ER again—and this time, with the support of my family and workplace, I Baker Acted myself and checked into a mental hospital.
My experience there was, to say the least, not pleasant. I was met with doctors and nurses who had no idea what I was going through—hell, I didn’t know what I was going through. They put me on a new cocktail of meds, and the most they gave me in the way of therapy was some young nurse “counselling” me tersely and repeatedly to “accept your anxiety, embrace your anxiety...and then you can let it go.” I went without sleep for almost four nights, and when I asked a nurse for some sleep medicine, she said she would not give it to me and told me to “use your coping skills instead.” Although, aside from deep breathing and distractions like coloring and reading, I had no idea what those coping skills were supposed to be.
Other patients were similarly given the pills-and-cold-shoulder treatment, and I commiserated on how awful our healthcare system has become in terms of the dignity and respect (or lack thereof) that mental-health patients receive. I won’t disclose the name of this facility, but I did write a message of complaint following my experience and noted that other patients were mistreated as well. Not once did any of these years-trained medical professionals suspect that my intensified anxiety and other symptoms be the result of benzodiazepine withdrawal.
I didn’t even learn this until I was shortly out of the hospital and researching (finally!) the medications that the hospital—and later my psychiatrist—had prescribed to me. One of those medicines was Ativan. Reading the information on Wikipedia (links already provided) was enough. Now it all started to come together—the rollercoaster of emotions, the suicidal ideations that weren’t me, weren’t like me at all.
I began to educate myself on properly tapering off the Ativan, despite my doctor’s insistence that I stay on the medicine because “it helps your anxiety.” I was starting to get depressive effects from the Ativan, but was wisely terrified to stop it abruptly to avoid a repeat trip to the hospital. I made myself go back to work; I appreciate my job because it gives me a purpose and something on which to focus other than my obsession over getting off this medicine and the right way to do it to avoid symptoms. (Yes, obsessive thoughts are both a side effect and withdrawal symptom of these damned benzos.) I’ve since managed to taper down to about half of my original dose, but the lower doses take longer to taper off, and I still have a long way to go. Many months, perhaps.
I’ve since found another psychiatrist who thinks my previous doctor overprescribed (yes), and she would like me to taper off my antidepressant cocktail (heck, so would I!). However, not even she understands how seriously these medications are affecting me now, and how I must prioritize tapering Ativan above all other medications. She admonishes me for “obsessing” over putting the Ativan first and suggests that the Ativan can “help” me wean off the other medicines, but I don’t want to be on this medicine any longer than I have to be.
I already feel the side effects typical of benzos, and especially at night, I’ve had to give up or reduce the amount of time I spend in nighttime activities (Toastmasters, writers’ critique groups, political activism groups) in which I normally love to participate. Nights are usually the worst for me. I feel terrible because I don’t often have the energy to participate in nighttime activities with my husband and sons. I so much want to be a fully attentive, giving wife and mother again.
Although others have discouraged me from looking on the Internet for benzo info, I’ve found a host of online support groups to remind myself that I’m not alone in this struggle, that so many others like me are affected by these meds and go through purgatory to wean off them. I’ve uncovered swaths of helpful information about safe tapering, including the Ashton Manual and water microtitration methods. It is nothing short of a travesty that people who are prescribed these medications—and even the prescribers—are so ill-informed about the terrible impact of benzodiazepines and how to taper off them safely.
Thankfully, people who’ve suffered the negative effects of benzos and their withdrawals are taking action and bringing about awareness. The Benzodiazepine Awareness & Legal Action Facebook group works to bring about awareness and policy changes in how these drugs are administered. The Massachusetts State Legislature has referred House Bill H.4062 to the legislature’s Joint Committee on Mental Health and Substance Abuse; I encourage readers in and outside of Massachusetts to ask the Committee to pass this much-needed bill about disclosure and regulation of benzos. If this bill is passed, it could be a model for other states to follow suit.
More information about H.4062, and how to take action to help get this bill passed, is here:
Coming in 2017 is a documentary, As Prescribed, directed by Holly Hardman and in production via Gobbo Films, which I plan to watch when it comes out. Hopefully, I’ll be in good health by then, but only my body can decide when the brain will be healed from all this mess. You can view a trailer here:
GF AsPrescribed Trailer v29 from Gobbo Films, LLC on Vimeo.
My apologies to the Daily Kos community—and to the liberal community at large—for being so absent as of late. But as my husband says every now and then, this has become my new hobby. I’m still viewing the batcrap crazy primary season with interest, consternation, and dread (especially when it comes to the likely Republican candidate). If any of you has been affected by benzos, or knows someone who’s been affected, please get involved. Many lives can be saved, and many more may not have to deal with the ill consequences of this medicine.
Feel free to share this diary and its call to action, and spread the word. Thanks much ahead.