The Problem - Undiagnosed Akathisia
Patient 1 – This 32-year-old male had akathisia due to SSRI withdrawal that was misdiagnosed as psychosis. He was then prescribed an antipsychotic. Knowing this could worsen his akathisia, he refused to take it. He was then force-medicated. The following excerpt was taken from his final post in an online support group —
August 1, 2019
Being force-medicated with Abilify for four weeks and sectioned if I don’t follow through. Says burning and pain is psychotic. If anything bad happens to me, can you please explain how bad this is on my Facebook wall?
Support Group Members
- Antipsychotics are the worst possible class of drugs to give to a person with this condition. It’s like giving peanut butter to treat somebody with a peanut allergy.
- I am so upset for you — I am shaking so bad I can hardly type this — I wish you were closer man, you could come stay with my parents and I. The mental health system is completely broken — how can it allow this kind of treatment to iatrogenic patients?! Abilify is the drug that caused my akathisia and tardive dyskinesia. Why can’t they understand it will cause you further harm, both mentally and physically? How close will they watch you… can you pretend to take the drug and dispose of it somehow? You’re a warrior — sending lots of positive energy, strength and love your way!
- Your doctors are totally ignorant. These side effects – direct effects are in the Physicians’ Desk Reference and package inserts.
- No man the pain and burning is not psychotic. I can promise you that. I had intense pain and burning so bad it was like I was lit on fire during cold turkey benzo withdrawal and akathisia. It’s from over excited nerves. Totally physiological. I know this for a fact. When I reinstated it went away entirely. When I’m off benzos after a proper taper it doesn’t come back.
- I don’t know if this will help, but can you ask to see a neurologist? Apparently there are some now that do acknowledge akathisia and psych med damage.
August 15, 2019
The patient was force-medicated with the antipsychotic for two weeks. His akathisia worsened and he took his life.
Loss of Family Support
Patient 2 – This 30-year-old female had akathisia that was misdiagnosed as an anxiety-based disorder (functional neurological). Her doctor reported this misdiagnosis to the family which resulted in loss of support. These are her final posts on social media —
April 27, 2018
I have severe agitation, panic and terror. It started a few months ago after being on fluoxetine, I stopped it and symptoms went away, but 2 weeks later the panic and agitation came back. I ended up back in the hospital and they started me on pregabalin and diazepam. I’m like a basket case pacing and screaming for hours in the mornings until the diazepam kicks in. I can’t sleep because it’s complete terror. The mental health team isn’t recognizing it as akathisia, they think it’s severe anxiety. I don’t know what to do.
April 29, 2018
My symptoms are getting worse and worse. I’ve been on the phone to the crisis team all morning, they spoke to the consultant and he said he’s not changing my meds. I’ve taken loads of diazepam and it’s not touching it. It seems like it’s building in intensity every day. My dad is shouting at me, telling me to shut up and sit down. I can’t live like this, I truly can’t. I can’t get through this next hour, it’s extreme.
May 9, 2018
Support group administrator
It pains me to announce [the patient] passed yesterday. Her family continued to not give her the validation she deserved and desperately needed. I have several screenshots from messages and comments where she said they wouldn’t watch any videos, wouldn’t research, fed her drugs and told her to just kill herself because she was hurting them with her “delusions.”
Involuntary Hospitalization and Mistreatment
Patient 3 – A 42-year-old emergency medical technician was prescribed a benzodiazepine for his undiagnosed akathisia symptoms, which he took as directed. When the symptoms recurred – likely due to tolerance – this happened —
I was put in a god awful drug treatment center. They cold-turkeyed me off the benzo and off trazodone which I’ve been on for many years. Needless to say, my akathisia got worse. After over a week of sleeping hardly at all, I went completely berserk and was having a total meltdown. I started begging for an ambulance for a couple of days. They refused and wouldn’t even let me speak to my family. Every time I mentioned the word akathisia they got angry and denied it even existed – eventually said I was an entitled little piece of shit and showing drug-seeking behavior – threatened to beat me up – I begged for an ambulance – they called the sheriff and had me admitted to a psych hospital – transported me handcuffed and shackled three hours away to a horrible facility where I begged for help and they forced injections of haldol and geodon on me – causing me horrific tardive dyskinesia almost immediately. I wish that any of this story was not true.
In each of the above cases, the failure of a physician to recognize and diagnose akathisia correctly resulted in significant worsening of the patient’s condition and lessened their chance of survival — and this is going on all over the world right now.
The Solution - Recognizing Akathisia
- Akathisia is an organic neurological disorder composed of both neurological and psychological symptoms.
- Motor symptoms can be variable, briefly suppressible, increase with attention, and decrease with distraction, as can also be seen in Parkinson’s disease (see videos below).
- Motor symptoms may increase with psychological distress, also common in Parkinson’s disease (2020).2
- Excessive movements are not always evident.
- Due to the above-noted motor characteristics, akathisia can easily be misdiagnosed as a functional neurological disorder.
- Akathisia can be caused by many non-psychiatric medications and, therefore, every clinician should learn to recognize it (Healy, D., 2018).3
Perminder Sachdev, MD, PhD, FRANZCP has studied akathisia extensively. The following are his observations, as detailed in the book, Drug-Induced Movement Disorders (2004)4:
There is no consensus regarding which movements, if any, are characteristic of akathisia. In our study, the features that best discriminated akathisia from non-akathisia were: i) shifting weight from foot to foot, or walking on the spot, ii) inability to keep legs still (subjectively), iii) feelings of inner restlessness, and iv) shifting of body position in the chair. However, these features are not present in every patient, and in the milder cases, only the subjective report may be present, at least on a brief examination, and only prolonged observation will reveal any motor disorder. Voluntary movements and effortful tasks tend to reduce the movements of AA. The majority of the patients report that akathisic movements are voluntary and in response to subjective distress. Except for the most severe cases, patients are able to voluntarily suppress the movements at least for short periods. A few patients manifest myoclonic jerks of the legs and toes, but these are not prominent features. Tremor of the extremities is not uncommonly associated, and this may be regarded as the co-occurrence of drug-induced parkinsonism. Another feature of the movements is their marked variability over time, and their usual disappearance during sleep.
Functional Neurological, Somatic Symptom, and Factitious Disorders
Patients with symptoms severe enough to cause suicidality may easily meet the diagnostic criteria for these disorders until they find a doctor who recognizes their akathisia. They will appear to have disproportionate and persistent thoughts about the seriousness of their symptoms, have a persistently high level of anxiety about their symptoms, and spend excessive time devoted to these symptoms. They will do their own research, know the correct medical terms, be eager to have numerous tests performed, and have a history of visiting many doctors and hospitals.
Overcoming the Psychogenic/Functional Misdiagnosis
The vast majority of people with akathisia who visit a neurologist are misdiagnosed with a psychogenic/functional neurological disorder. This is likely because akathisic movements can be briefly suppressed, distractible, and/or increase with attention, as mentioned previously. It is important to note, however, that these features may also be present in organic movement disorders such as Parkinson’s disease, as evident in the following videos.
Michael J. Fox demonstrates the ability to suppress his movements —
A Parkinson’s patient exhibits an increase in symptoms with attention —
A Message from the Akathisia Alliance
- The importance of recognizing and diagnosing akathisia cannot be emphasized enough. The vast majority of suicides among our support group members were precipitated by loss of family, friends, employment, etc., largely due to an incorrect diagnosis. Although a patient’s symptoms may not appear consistent with an established organic movement disorder, we hope you will consider the following before assuming a psychogenic etiology, as many treatments for psychogenic illnesses can make akathisia worse:
“Clearly, psychological causation cannot be demonstrated by the mere absence of a confirmed disease diagnosis (argument from ignorance). Medical practitioners simply cannot assume that the current knowledge of disease and its markers is 100% perfect or that all complaints not otherwise accounted for must have a psychological origin….We conclude that there is currently little evidential support for psychogenic theories of illness in the neurological domain” (Wilshire, Ward, 2016).5“Although it is often clinically useful to distinguish a movement disorder as either ‘organic’ or ‘psychogenic,’ this dichotomy is difficult to defend scientifically” (Ellenstein, Kranick, Hallett, 2011).6
- People suffering with the unbearable symptoms of akathisia who cannot get answers from their doctor will do their own research. With the open-access policy of many medical journals today, it is possible for these highly-motivated people to read much of the same literature you can. Yet, they are often being met with condescension and warned against using “Dr. Google” by their physicians. This can increase hopelessness and worsen suicidality.
- We hear stories every day from people who told their doctor they had akathisia, but the doctor disagreed. This often happens repeatedly. The fight for an accurate diagnosis can also lead to hopelessness and significantly increase the likelihood of suicide. As anyone who’s had akathisia would tell you, it’s like getting hit over the head with a ton of bricks. Although you may not know what it’s called until you do the research, it’s impossible NOT to know you have akathisia. Dr. Andrew J. Cutler would likely agree —
1. Salem, H., Nagpal, C., Pigott, T., & Teixeira, A. L. (2017). Revisiting Antipsychotic-induced Akathisia: Current Issues and Prospective Challenges. Current Neuropharmacology, 15(5)
2. The Relationship Between Stress, Anxiety, & Parkinson’s. (2020, February 12). Retrieved from https://www.apdaparkinson.org/article/stress-anxiety-parkinsons-disease/
3. Healy, D. (2018). 500+ Drugs that Cause Depression and Suicide – AKA Akathisia. Retrieved from https://rxisk.org/500-drugs-that-cause-depression-and-suicide-aka-akathisia/
4. Sachdev, P. Acute and tardive drug-induced akathisia. In: Sethi KD (Ed) Drug induced movement disorders. Neurological Disease and Therapy Series. Macel Dekker, New York, USA. 2004;129-164
5. Wilshire, C. E., & Ward, T. (2016). Psychogenic Explanations of Physical Illness. Perspectives on Psychological Science, 11(5), 606–631. doi: 10.1177/1745691616645540
6. Ellenstein, A., Kranick, S. M., & Hallett, M. (2011). An Update on Psychogenic Movement Disorders. Current Neurology and Neuroscience Reports, 11(4), 396–403. doi: 10.1007/s11910-011-0205-z