A major part of the symptom picture of benzo withdrawal or BIND is the drug-induced hell called Akathisia.
From the Akathisia Alliance for Education and Research, Dec 10, 2021:
“Kathleen Fliller is the sixth friend we’ve lost to akathisia since August. [She sent a] voice message to a friend shortly before taking her life. It’s difficult to hear, but we want everyone to know the whole story, that these people are not dying solely because of akathisia. They are also being abandoned by family and friends because they cannot get the correct diagnosis from their doctor, so no one believes them.”
Akathisia can include agitation, tremors, a sense of inner agitation and overstimulation with or without overt movement, outbursts of anger or panic attacks, insomnia, a skin crawling feeling with itching all over, and many various neurological problems. It’s often described as a feeling of “jumping out of my skin.”
It’s not just the discomfort of agitation, but can be truly agonizing especially because it can be so unremitting day and night.
Akathisia can be caused by benzos, antidepressants, antipsychotics, and many other drugs not used as psych drugs such as anti-nausea drugs, certain antihistamines, and fluoride-based antibiotics. People can experience Akathisia while taking the drug, when withdrawing from the drug, and often for long periods of time afterward.
A often overlooked fact is that withdrawal often occurs between doses too, as well as when a person has reached tolerance at a certain dose. That means that many of these symptoms can occur any any point.
Most doctors and medical personnel are unaware of Akathisia, its severity or its prevalence.
I’ve had Akathisia for most of my adult life, running the gamut from an uneasy inner shaky feeling to the sleep deprivation torture of extreme insomnia even while beyond exhausted, to inner nerve pain with convulsions that was the most profound suffering I ever experienced.
I told my doctors that I felt like I was in a medieval torture chamber. They didn’t know what to make of that. The palliative care nurse practitioner only knew to give me more benzos to try to provide some relief. The rationale was that different benzos can have different effects, and “it can’t hurt to try.”
At that point I was still uneducated about benzos and Akathisia, and I was looking for a better drug to rescue me from the torture. Well, the Ativan she prescribed plunged me into the most profound agony for several months. I switched back to Valium and a year later after tapering I’m drug free and beginning to heal.
Here’s an excellent 3-page guide to Akathisia suitable for printing and sharing.
The following quote from a support group member may help people understand the behaviors of someone with Akathisia, why they are consumed with the distress they are experiencing and why they often can’t listen to what you may think is helpful input. It’s not avoidance of issues. Their central nervous system is simply too overloaded and exhausted due to the chemical poisoning.
“It’s like someone sets you on fire…now try to have a conversation with someone while you are consumed by the flames. Try watching a movie like that. Check your mail while you are burning. Try taking a nap while the fire burns relentlessly. You can’t. It’s impossible. The simplest tasks become completely overwhelming because your one and only focus is the fact that you have been set on fire. And, what’s worse…no one can see the flames consuming you.”
“Aka-What? The Need for Education
With rates that high, one would think that most medical and mental health professionals would recognize the condition. Sadly, that’s not the case. While many psychiatrists are trained to recognize the disorder, many medical and mental health professionals are unaware of it or have only read about it in a textbook. Even the DSM-5, the Diagnostic and Statistical Manual of Mental Disorders published by the American Psychiatric Association, merely touches on the condition.
As a result, akathisia often goes undiagnosed or misdiagnosed as a psychiatric problem. Patients who do not present with the classic motor symptoms and experience only the subjective feelings of terror or agitation are often misdiagnosed as having anxiety. Sufferers themselves are sometimes unable to differentiate between anxiety and the agitation associated with akathisia. A misdiagnosis can lead to prescribing more medications that can further exacerbate the problem.”
-NCCHC website
From the Akathisia Alliance:
Misdiagnosis and Suicidality
Akathisia is not subtle. Its symptoms are so severe, in fact, that there are many reports of people with no history of mental illness or depression who took their lives within days of its onset. The importance of an accurate and swift diagnosis cannot be stressed enough. As the suicidality is primarily due to its subjective symptoms, it is crucial to consider a self-diagnosis – even when a patient exhibits no objective signs. Failure to do so and an alternate misdiagnosis are currently resulting in unnecessary involuntary hospitalizations, forced drugging with medications that worsen the akathisia, loss of family support, abandonment, homelessness, and a much greater risk of suicide (see page 3).
Common Misdiagnoses: Worsening of a mental illness, new mental illness, generalized anxiety disorder, panic disorder, personality disorder, bipolar disorder, attention-deficit/hyperactivity disorder, restless legs syndrome, health anxiety.
Guide for clinicians:
waves and windows 