This is Akathisia

Akathisia is an extremely distressing neurological disorder that most often causes severe agitation, an inability to remain still, and an overwhelming sense of terror. It is so torturous that it can lead to impulsive suicide and acts of violence,1,2 and it is suspected to have played a role in certain mass shootings.3,4

Although the Greek term “akathisia” loosely translates to an “inability to sit” and it is classified as a movement disorder, “it can present as a purely subjective clinical complaint without overt movement abnormalities.”5 Therefore, akathisia cannot be ruled out solely based upon the absence of visible signs. It is evident in the support groups that this may be the primary reason akathisia is “generally underdiagnosed or misdiagnosed.”6

Akathisia can occur in Parkinson’s disease, traumatic brain injury, and other neurological disorders; however, it is most often a medication side effect or withdrawal syndrome. It is most commonly associated with antipsychotics, antidepressants, antibiotics, and anti-nausea medications; however, the list of medications and supplements that can cause it is very long. Akathisia is also common in benzodiazepine withdrawal, especially when discontinued too quickly after long-term use. It can result from the withdrawal of opioids, cocaine, amphetamines, and other similar drugs as well.

Akathisia most often occurs when starting, stopping, or adjusting dosages. Abrupt discontinuation of any psychotropic medication commonly causes akathisia, especially following long-term use.

Signs and Symptoms

IMPORTANT: As mentioned above, although the term “akathisia” literally means “an inability to sit,” excessive movements are not always present. Because the subjective (invisible) symptoms are the “most dangerous” 7 and can lead to suicide, it is crucial not to rule out akathisia simply because there are no visible signs.

The symptoms most commonly associated with akathisia are listed below.

  • Intense physical restlessness with a need for constant movement (e.g., pacing, rocking, leg swinging, foot tapping, shifting weight from one leg to the other, etc.)
  • An overwhelming sense of terror that is organic or “chemical” and much more severe than any pre-existing anxiety
  • Extreme agitation with a feeling of being “out of control”
  • A feeling often described as wanting to “jump out of my skin”
  • Racing thoughts with pressured or rapid speech
  • Suicidal and/or violent impulses
  • Monophobia/separation anxiety (a need to be near “safe” people at all times)8,9
  • Agoraphobia (a need to be in “safe” places at all times)10
  • Subjective physical sensations such as “electrical zaps,” buzzing, vibrating, burning,  or vibrating feeling, bugs crawling under the skin, burning sensation, etc.
  • Depersonalization-derealization – Feeling disconnected from the body, as if observing it from the outside, or a sense that the world is unreal, similar to living in a dream/nightmare.11,12
  • Vocal tics (throat clearing, sniffing, grunting, etc.)
  • Nonsuicidal self-harm (e.g., hitting, cutting)
  • Insomnia
  • Hypersensitivity to light and sound

Misdiagnoses

Akathisia is often misdiagnosed as:

  • Worsening of a pre-existing mental illness
  • Emergence of a new mental illness
  • Functional neurological disorder (conversion, somatization, psychogenic, etc.)
  • Acute psychosis
  • Agitated depression
  • Psychomotor agitation
  • Generalized anxiety disorder
  • Panic disorder
  • Restless legs syndrome
  • Borderline personality disorder
  • Bipolar disorder
  • ADD/ADHD

Akathisia Types

Akathisia can be classified with respect to duration:

  • Acute akathisia – lasts less than six months
  • Chronic akathisia – symptoms present for longer than six months, though they may be milder than at onset

And according to the nature of onset (Salem, Nagpal, et al., 2017)13:

  • Acute akathisia – develops within hours or days of starting, stopping, or changing the dose of a medication
  • Tardive akathisia – symptoms develop more than three months after starting, stopping, or changing the dose of a medication
  • Withdrawal or rebound akathisia symptoms arise with discontinuation or a decrease in dosage, usually within six weeks (Qureshi, Cervantes, 2007; Sachdev, 1995).14,15
  • Interdose or end-of-dose akathisia – symptoms occur when a medication dose wears off and resolve with the next dose

Cause / Pathophysiology

One of Akathisia Alliance’s central goals is to help uncover the exact cause or pathophysiology of the condition – until this is better understood, treatment and prevention will remain problematic. Although researchers do not know the exact biological cause of akathisia, one current hypothesis explains it in terms of dysregulation within dopaminergic, cholinergic and/or serotonergic systems (Salem, Nagpal, et al., 2017).16 We are currently setting up a website at journalofakathisia.com where a much more detailed discussion regarding the pathophysiology of akathisia and potential avenues for future research will take place.

Anxiety vs. Organic or "Chemical" Terror

Jennifer explains the significant difference between anxiety and the organic or “chemical” terror of akathisia…

Descriptions

When asked to describe akathisia, patients gave the following very similar analogies —

“Take every horrific feeling you’ve ever had in your life, all at once. Now, times them by 200, right in your gut. The ‘my- mother- just- died- and- so- did- my- cat- and- my- wife- left- me- for- my- best- friend’ feeling. On top of those? A feeling of terror, panic, fear, as if you LIVE in a horror movie, and you must do something, or everyone you love will die, YOU will die — and you’ve no clue what that ‘something’ is. So sick with this pain, caused by this neurological condition… so sick from it you can barely eat. That is how akathisia pain feels. It’s how it feels to me, and countless others who are experiencing it, or who have.” ~ J.A. Carter-Winward

“I am incredibly anxious and almost completely consumed by a sense of terrified foreboding and/or danger. Even that feels physical, which I know doesn’t make any sense, but I don’t know how else to put it. I want to scream and shout and bang my head off the wall and stab myself and cry. Earlier, I considered going to the petrol station with a view to purchasing flammable liquid to set myself on fire. Extreme perhaps, but in a way I cannot explain, even the indescribable agony of burning seems preferable to the indescribable ‘somethingness’ of this.” ~ Anonymous

“It’s sheer terror, like I’ve been lit on fire or thrown out of an airplane without a parachute” – Laurie U

“An endless desire to die (often in the most savage manner imaginable), [a need] to escape the endless feeling of suffocation in your body and the depraved need to spontaneously combust that might stop you from using a knife to peel the skin from your body.” – Robert B

“…like being buried alive” – Jackie R

…like the skin is being peeled off my body if my skin were inside me. It’s virtually impossible to describe, but there is no other feeling like it and there is no feeling worse than it.” – Alexandra

“…like being held up at gunpoint and watching my children being dangled off the Grand Canyon” – Jill S

“…like being trapped in a box and I can’t get out as I hear my babies crying for help while being tortured and killed.” – Cate K

Suicidality Due to Akathisia vs. Depression

“The suicidality of akathisia is distinctly different from the suicidality of depression. When people get this side effect, they will tell you they want to kill themselves to escape this severe inner agitation, they feel like jumping out of their skin, they feel like jumping off a building, or hanging themselves. When people are depressed, they’re hopeless, helpless, worthless, and that’s what they’ll tell you they’re trying to escape. It looks totally different.”

~ Joseph Glenmullen, M.D.

Best-selling author, David Foster Wallace, died by suicide in 2008. According to his widow, Karen Green, he had taken the antidepressant, Nardil (phenelzine), for 31 years when he was advised to stop taking it by his doctor in 2007. She recalled that he quickly became very unstable and that “he was scared out of his mind” prior to his suicide in 2008.17

Although David he did not have an official diagnosis of akathisia at the time of his death, he describes the difference between suicide due to akathisia and suicide due to depression in his best-selling book, “The Infinite Jest”18:

“The so-called ‘psychotically depressed’ person who tries to kill herself doesn’t do so out of quote ‘hopelessness’ or any abstract conviction that life’s assets and debits do not square. And surely not because death seems suddenly appealing. The person in whom its invisible agony reaches a certain unendurable level will kill herself the same way a trapped person will eventually jump from the window of a burning high-rise. Make no mistake about people who leap from burning windows. Their terror of falling from a great height is still just as great as it would be for you or me standing speculatively at the same window just checking out the view; i.e. the fear of falling remains a constant. The variable here is the other terror, the fire’s flames: when the flames get close enough, falling to death becomes the slightly less terrible of two terrors. It’s not desiring the fall; it’s terror of the flames. And yet nobody down on the sidewalk, looking up and yelling ‘Don’t!’ and ‘Hang on!’ can understand the jump. Not really. You’ d have to have personally been trapped and felt flames to really understand a terror way beyond falling.”
 

References

1. Shear, M. K., Frances, A., & Weiden, P. (1983). Suicide associated with akathisia and depot fluphenazine treatment. Journal of clinical psychopharmacology, 3(4), 235–236. https://doi.org/10.1097/00004714-198308000-00006

2. Schulte, J. (1985). Homicide and suicide associated with akathisia and haloperidol. The American Journal of Forensic Psychology, 6(2), 3–7. http://www.safetylit.org/citations/index.php?fuseaction=citations.viewdetails&citationIds[]=citjournalarticle_81731_1

3. Lucire, & Crotty, C. (2011). Antidepressant-induced akathisia-related homicides associated with diminishing mutations in metabolizing genes of the CYP450 family. Pharmacogenomics and Personalized Medicine, 65. doi: 10.2147/pgpm.s17445

4. Spingola, D. (2015). Screening Sandy Hook: causes and consequences. Bloomington, IN: Trafford Publishing.

5. Lohr, J. B., Eidt, C. A., Abdulrazzaq Alfaraj, A., & Soliman, M. A. (2015). The clinical challenges of akathisia. CNS spectrums, 20 Suppl 1, 1–16. https://doi.org/10.1017/S1092852915000838

6. Lohr, J. B., Eidt, C. A., Abdulrazzaq Alfaraj, A., & Soliman, M. A. (2015). The clinical challenges of akathisia. CNS spectrums, 20 Suppl 1, 1–16. https://doi.org/10.1017/S1092852915000838

7. Akathisia Alliance for Education and Research. (2019, August 26). Akathisia is Torture [Video]. YouTube. https://www.youtube.com/watch?v=_6eix3cdwoU

8. Forrest, D. V., Fahn, S. (1979) Tardive Dysphrenia and Subjective Akathisia. Journal of Clinical Psychiatry, 40(4):206

9. Atbasoglu, E. C., Schultz, S. K., Andreasen, N. C. (2001) The Relationship of Akathisia with Suicidality and Depersonalization Among Patients with Schizophrenia. Journal of Neuropsychiatry and Clinical Neurosciences, 2001;13(3):336-41

10. Anfinson T. J. (2002). Akathisia, panic, agoraphobia, and major depression following brief exposure to metoclopramide. Psychopharmacology bulletin, 36(1), 82–93.

11.  Glenmullen, J. (2006). The antidepressant solution: A step-by-step guide to safely overcoming antidepressant withdrawal, dependence, and “addiction”. New York, NY: Free Press.

12.  Atbasoglu, E. C., Schultz, S. K., Andreasen, N. C. (2001) The Relationship of Akathisia with Suicidality and Depersonalization Among Patients with Schizophrenia. Journal of Neuropsychiatry and Clinical Neurosciences, 2001;13(3):336-41

13. Salem, H., Nagpal, C., Pigott, T., & Teixeira, A. L. (2017). Revisiting Antipsychotic-induced Akathisia: Current Issues and Prospective Challenges. Current neuropharmacology, 15(5), 789–798. https://doi.org/10.2174/1570159X14666161208153644

14. Qureshi, S., Cervantes, L. (2007). Unhappy feet: one woman’s severe akathisia. Current Psychiatry, 6(10). Retrieved from https://mdedge-files-live.s3.us-east-2.amazonaws.com/files/s3fs-public/Document/September-2017/0610CP_Cases.pdf

15. Sachdev, P. (1995). The Epidemiology of Drug-induced Akathisia: Part II. Chronic, Tardive, and Withdrawal Akathisias. Schizophrenia Bulletin, 21(3), 451–461. doi: 10.1093/schbul/21.3.451

16. Salem, H., Nagpal, C., Pigott, T., & Teixeira, A. L. (2017). Revisiting Antipsychotic-induced Akathisia: Current Issues and Prospective Challenges. Current neuropharmacology, 15(5), 789–798.

17. Adams, T. (2011). Karen Green: ‘David Foster Wallace’s suicide turned him into a “celebrity writer dude”, which would have made him wince.’ The Observer. Retrieved from https://www.theguardian.com/books/2011/apr/10/karen-green-david-foster-wallace-interview

18. Wallace, D. F. (1996). Infinite jest: a novel. Boston: Little, Brown