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What is Akathisia?
What is Akathisia?
Akathisia is an extremely distressing neurological condition characterised by intense inner restlessness, inner terror and an often overwhelming need to move. People may describe feeling unable to sit still, extremely agitated, anxious, frightened or physically unable to relax. For some people, the experience can be extraordinarily distressing and has been associated with suicidal thoughts and other severe behavioural disturbances, including acts of violence.¹ J. E. Schulte's 1985 paper, "Homicide and suicide associated with akathisia and haloperidol" published in The American Journal of Forensic Psychology, found an increased link between akathisia and acts of self-harm, suicide and homicide.²
The word akathisia comes from Greek and roughly means “inability to sit.” It is often thought of as a movement disorder because people may pace, rock, shift their weight, constantly move their legs or repeatedly get up and sit down. However, akathisia can also be invisible: a person may experience an intense internal feeling of restlessness without obvious movements that an observer can see.³
This is important because the absence of visible pacing or agitation does not automatically rule out akathisia. Someone may simply describe an unbearable feeling of inner agitation, an inability to relax, or a feeling that they need to keep moving. Because of this, this can make akathisia difficult to recognise, particularly when its symptoms are mistaken for anxiety, worsening psychiatric illness or ordinary agitation.³ It is quite apparent in support groups that akathisia is "generally underrecognised or misdiagnosed".⁴
Akathisia can occur in Parkinson's disease, traumatic brain injury or other neurological conditions, however it is particularly important in the context of medication, where it may present as an adverse reaction or during withdrawal. It is most strongly associated with antipsychotics, antidepressants, antibiotics, and anti-nausea medications; however, this list is not exhaustive.⁵
Akathisia can appear when a medication is started, increased, reduced, stopped or otherwise changed. It can also occur during withdrawal from certain medications, and is commonly reported in the case of benzodiazepines.⁵
"Abrupt discontinuation of any psychotropic medication commonly causes akathisia, especially following long-term use."¹
Signs and Symptoms of Akathisia
Signs and Symptoms of Akathisia
Important: Although akathisia literally means an “inability to sit,” a person does not always have obvious or excessive movements. Akathisia can sometimes be experienced mainly as an intense, internal feeling of restlessness and distress that other people cannot see. Because these invisible symptoms can be extremely severe and have been associated with suicidal thoughts and behaviour, the absence of visible restlessness should not be used to rule out akathisia.³
Symptoms include:
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)
Agoraphobia (a need to be in “safe” places at all times)
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.
Vocal tics (throat clearing, sniffing, grunting, etc.)
Nonsuicidal self-harm (e.g., hitting, cutting)
Insomnia
Hypersensitivity to light and sound¹
Misdiagnoses
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/ADHD¹
Why Akathisia Can Be Misunderstood
Why Akathisia Can Be Misunderstood
One of the problems with akathisia is that its psychological symptoms can be so intense that they may overshadow its physical origin. A person experiencing akathisia may say:
“I feel like I need to escape my own body.”
“I cannot sit still.”
“I feel unbearably restless.”
“I feel terrified for no reason.”
“I have to keep moving.”
“Something is terribly wrong.”
These experiences can easily be interpreted as anxiety, panic, worsening depression or another psychiatric symptom. However, when they occur alongside characteristic physical restlessness - particularly following a medication change - akathisia should always be considered as a possible explanation.⁵
The distinction matters. If akathisia is misdiagnosed, it can lead to the patient's care provider mistakenly advising them to updose a medication, reduce [by means of rapid taper or CT], or add another medication to an already injured nervous system. This can lead to a phenomenon known as being 'polydrugged' by means of polypharmacy - instead of recognising akathisia as a CNS injury, doctors may mistakenly throw multiple drugs at the wall to see what will stick and fix the issue. Because of the nature of akathisia, many of these drugs fail to work, whereas others are contraindicated.⁶
Akathisia Types
Akathisia Types
The Akathisia Alliance explains how akathisia can be classified with respect to duration and according to the nature of onset⁵ :
Acute akathisia – lasts less than six months. Typically develops within hours or days of starting, stopping, or changing the dose of medication
Chronic akathisia – symptoms present for longer than six months, though they may be milder than at onset
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 weeks⁷ ⁸
Interdose or end-of-dose akathisia – symptoms occur when a medication dose wears off and resolve with the next dose"¹
"If I had to describe what akathisia feels like- consider the worst case of restless legs you can imagine, except it isn't just your legs: it feels like your literal soul is trying to escape your body. Pair that with the jolt of panic you might feel when missing a step on the way down the stairs, over and over and over again" - E.H
Stephen's Voice
Stephen's Voice
The following story comes directly from Stephen's Voice, with the intent to spread awareness of the catastrophic consequences of akathisia.
(via Facebook)
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"This post contains content relating to suicide which some readers may find distressing
****
My name is Stephen O’Neill; I was a singer and musician, lived a healthy lifestyle, never had touched a drop of drink in my life, smoked or took drugs. I was in to fitness, ran marathons and loved to raise money for local charities. I lived for my family. I had no money worries, I was comfortable in life.
However in 2016 I was having trouble sleeping and switching off at night, I decided to go to the doctors and on 16th June 2016 I was prescribed 50mg of Sertraline for “mild anxiety” and “sleep disturbance”.
My brother in law picked me up from the doctors that day and we went on a few deliveries. I told him I had just been prescribed anti-depressants and that I had been having trouble sleeping. We had a good chat and then I went to pick up the tablets. I told the pharmacist that I didn’t want to go down the medication route, I had responded well before to CBT after the death of my parents but there was a wait list for the talk therapy so I thought I’ll try what the doctor prescribed. I was feeling my usual upbeat self, what harm could they do?
In the early hours of 18th June, after taking the tablets for just 24hours, everything changed. I experienced the scariest night of my life. My heart was racing; I felt feelings of agitation so strong that I could not sit still. Thoughts were running through my head a million miles a second, my mind was in over drive with scary thoughts I had never had before. I don’t know why, but I put a belt around my neck. At about 2am I ran a cold shower to try snap out of this feeling, it didn’t work. I went for a walk at about 3am to try and get rid of the restless feeling in my legs and clear my head, it didn’t work. I came back home and took the Sacred Heart picture off the wall and held it, praying for the sun to come up.
As soon as morning came I went to my sister’s next door and told her I needed to see the doctor ASAP. She didn’t understand what was happening but as it was a Saturday said I should go see the pharmacist. Without even getting freshened up, I went down the town. I know the pharmacist was shocked at the change in my appearance. I told her it was the tablets; they had done something to my head. She rang the out of hours doctors and they told me to stop the tablets immediately and gave me diazepam.
I went home but still couldn’t shake the feeling. I rang my other sister and she picked me up. I told her everything; I was having dark thoughts that were never there before the tablets. We rang the out of hours doctors again and they sent out a crisis team. I told the crisis team the same thing I had told my sisters and the pharmacist, the tablets had done something to my head.
I was so scared and desperately wanted to get better so I voluntarily went into a local psychiatric unit. I told anyone who would listen that there was something wrong with the medication, I felt like it was poisoning me. They noted that I wasn’t clinically depressed and that I had an adverse reaction to Sertraline but they didn’t really seem to take on board what I was telling them.
Over the next six weeks, instead of just taking me off medication, the doctors kept prescribing me tablets. In that short space of time I admitted myself to the unit twice more and I was given Quetiapine (antipsychotic drug) and Mirtazapine (serotonergic drug), Buspirone (anti-anxiety) as well as other drugs such as Diazepam, Propranolol and Zopiclone. A cocktail of drugs, each one just seeming to exacerbate the symptoms.
The feelings were unbearable, I had to phone and cancel all my music bookings. All I wanted to do was walk. I must have walked for miles trying to shake the feelings of restlessness and agitation. If i couldn’t go for a walk I would just pace round and round the house. I just couldn’t settle. All my thoughts were multiplied by 1000. I couldn’t sleep, I felt so nauseated I would even retch but nothing was coming up because I couldn’t eat. I had no appetite. I lost about a stone and half in weight. My hands were shakey and my legs were twitchy. Sometimes I felt like I had mice crawling up my legs and that the hair was standing on my head, tingling. Everything seemed louder too; a slight bang would have me jumping. I had this overwhelming feeling of fear. I was twitchy, jittery, tearful, exhausted.
But I was determined to fight this feeling; I was determined to get better. Because the doctors kept telling me that it couldn’t be the tablets I began to think of what else could be causing this. I had lost the sight in my eye when I was younger after an accident so I even went for an eye test incase something would show up behind the eye and I was also looking into booking private for a brain scan. I even tried a spiritual healer in my desperation. I just didn’t know what was happening to me. They just kept telling me and my family I would not act on my thoughts, that my physical body would not be harmed.
We called the crisis team again on 27th July as I collapsed in front of my sister. She even told them I had woke up in the hallway with a rope around my neck; I had snapped out of trance and didn’t know how I got there. I was scared. But I was told not to come down to the unit; I was told again it would take a few more weeks for the tablets to work.
But it was too late, on 29th July 2016 I was dead, six weeks after I first took medication; I was found by brother, in the backyard.
**************************************************** Stephen dedicated his life to helping others. He will continue to help others through his story. We are not anti-medication, we are pro-informed choice and transparency.
If only we knew then what we know now.
If you think you or your loved one is having difficulty with medication.....you are probably right. You can find lots of useful information and help on the RxISK website.
Speak with your GP, be firm with your feelings.
If this post can help at least one family from avoiding the absolute carnage that our family has suffered then we can take some comfort in knowing Stephen’s Voice lives on
*******************************************************
Please follow Stephen’s Voice for more information on adverse reactions to SSRIs and other medications⁹
Stewart Dolin
Stewart Dolin
The following case comes from the Medication-Induced Suicide Prevention and Education Foundation in Memory of Stewart Dolin (MISSD).¹⁰
Stewart Dolin was a 57-year-old lawyer who, according to his family and MISSD, had been enjoying a happy and fulfilling life. He had been married to his high-school sweetheart for 36 years and had two adult children with whom he was very close. He enjoyed his career, travelling, skiing, dining and spending time with his family and friends.
In the summer of 2010, Stewart began experiencing anxiety related to work. He was prescribed the antidepressant Paxil (paroxetine), an SSRI. According to the account published by MISSD, his anxiety became significantly worse within days of starting the medication. He became restless, had difficulty sleeping, "even asked his wife to listen to a meditation tape with him (hardly typical behaviour)"¹⁰ and repeatedly told her that he still felt extremely anxious.
On July 15, 2010, six days after starting the medication, Stewart died by suicide after going to a nearby train platform. A registered nurse who happened to be there later reported seeing him pacing back and forth and appearing highly agitated. As the train approached, Stewart stepped off the platform, taking his own life.
His death became the subject of considerable attention because his family did not believe that his sudden deterioration was consistent with the person they knew.
"This happy, funny, loving, wealthy, dedicated husband and father who loved life left no note and no logical reason why he would suddenly want to end it all. Neither Paxil nor the generic version listed suicidal behavior as a potential side effect for men of Stewart's age."¹⁰
MISSD was subsequently established in his memory to educate the public and healthcare professionals about medication-induced suicide and related adverse reactions.
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MISSD mission statement:
"MISSD (The Medication-Induced Suicide Prevention and Education Foundation in Memory of Stewart Dolin) is a 501(c)(3) nonprofit that has spent more than a decade working to prevent avoidable akathisia related deaths. Through education, awareness campaigns, professional outreach, and free public resources, MISSD helps ensure symptoms are recognized early so lives can be saved. We are not anti-medication—we support safe, informed use of prescription drugs and advocate for truth in disclosure, honesty in reporting and legitimate drug trials. Donor support makes this lifesaving education and prevention work possible. If this could happen to Stewart, then it could happen to anyone. MISSD will make a difference."¹⁰
MISSD Akathisia 101 Awareness & Training
MISSD Akathisia 101 Awareness & Training
It is imperative that healthcare providers, crisis responders, friends, family members and patients themselves be trained to appropriately recognise and respond to akathisia.
"MISSD's free, one-hour online courses provide essential education on akathisia—an often-missed medication-induced disorder linked to severe distress and suicide. One course offers 1 NASW-approved CEU; the other provides a completion certificate for credit consideration. These courses are free, accessible, and open to everyone—clinicians, crisis responders, patients, caregivers, families, advocates, and the public. No prior training required. If medications touch your life, this knowledge matters."¹⁰
References
References
Akathisia Alliance for Education. (n.d.). About akathisia. The Alliance describes akathisia as an extremely distressing condition involving severe agitation, inability to remain still and intense psychological distress, and discusses its association with suicidal behaviour. Akathisia Alliance — About Akathisia https://akathisiaalliance.org/about-akathisia/
. 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
Barnes, T. R. E. (2003). The Barnes Akathisia Rating Scale—revisited. Journal of Psychopharmacology, 17(4), 365–370. https://doi.org/10.1177/0269881103174013
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
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/10.2174/1570159X15666170118110138
Akathisia Alliance for Education. (n.d.). Akathisia quick reference. https://akathisiaalliance.org/akathisia-quick-reference/
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
Sachdev, P. (1995). The Epidemiology of Drug-induced Akathisia: Part II. Chronic, Tardive, and Withdrawal Akathisias. Schizophrenia Bulletin, 21(3), 451–461.https://doi.org/10.1093/schbul/21.3.451
Stephen's Voice [n.d]. Facebook. https://www.facebook.com/stephenoneillsvoice/posts/pfbid026pHzBF4SuXe4EiNtArG6B5xRFPX1qtZvuDTHhN6JjrgoRfGy784qpa6jaoXQZwqsl.
Medication-Induced Suicide Prevention and Education Foundation in Memory of Stewart Dolin. (n.d.). The story of Stewart Dolin. MISSD. www.missd.co
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