Akathisia is described as a movement disorder characterized by the inability to sit still. According to WebMD, akathisia causes the urge to move and pace, and is frequently caused by taking antipsychotic medications (https://www.webmd.com/schizophrenia/what-is-akathisia#1). What akathisia really feels like though, is so much more than this.
What places like WebMD fail to state is just how horrific this condition actually is. Unless one seeks out personal accounts, most places will state that akathisia is simply “the urge to move continuously”. The distress akathisia truly causes is often overlooked or explained away as an underlying mental illness by medical professionals.
There are four different types of akathisia:
- Acute akathisia (occurs immediately after taking a medication).
- Chronic akathisia (akathisia that lasts >6 months).
- Tardive dyskinesia (delayed onset months or years after taking a medication; characterized by involuntary, jerky movement).
- Withdrawal akathisia (akathisia caused by withdrawal of a medication).
Many people are tapered off of their psychiatric medications too fast by their doctor. Withdrawal akathisia is so distressing that many decide to continue taking their medication permanently. Under the impression it is their “underlying mental illness,” people are led to believe that they need the medication to function.
What can cause akathisia?
- Neuroleptic drugs (Seroquel, Abilify, Clozaril, Geodon)
- SSRIs, SNRIs & Tricyclic Antidepressants
- Withdrawal from illegal street drugs
- Rarely, anti-migraine and anti-nausea medications
- Disease (Parkinson’s, encephalitis & traumatic brain injury)
What does severe akathisia feel like?
To read about first hand accounts regarding akathisia, see https://missd.co/256/. Here you will find many quotes by real people who try to describe the horror of akathisia. One person describes the condition as this:
“There’s no sense of DOOM and DARKNESS like what is felt during Akathisia. It’s inexplicable. I knew if I didn’t just die from it, I would kill myself if it didn’t let up. I was so sure I absolutely had to die. Because I could NOT STAND feeling that way one more minute.”
Here is another first hand account of akathisia on Mad in America. This account not only describes the crippling symptoms of the condition, but also describes how these symptoms were discredited by medical professionals – https://www.madinamerica.com/2018/11/drug-induced-akathisia/.
Possible akathisia symptoms
(1) Akathisia can feel like a “chemical terror”.
The chemical terror of akathisia can only be described as an unnatural sensation of frantic anxiety. It feels like some sort of “demonic possession”. Unlike the familiar sensations of panic attacks, the terror felt in akathisia feels almost inhuman in nature.
Severe akathisia sometimes doesn’t feel like anxiety at all. Instead, it feels like an out of control oblivion arising from within.
(2) The urge to pace does not stop.
Akathisia causes psychomotor activation and the urge to continuously move. Pacing may be the only way to escape the inner restlessness. Attempting to sit still only heightens the chemical terror from within.
Like running on a motorized mouse wheel, the movement does not stop. Exhaustion sets in from lack of rest, but sleep doesn’t come. The desire to rest is overwhelming, but inner agitation will not allow it.
(3) It does not feel like standard depression or anxiety.
For many, akathisia does not feel like depression or anxiety; it feels like a powerful dismantling of ones entire spirit. Akathisia feels like a mutated version of depression and anxiety, unfamiliar and haunting in nature.
Having akathisia can make a person feel like they are being haunted by an unseen force. Standardized treatment plans for anxiety and depression fail to treat it – sometimes making it even worse.
Here is a case study about a 38 year old man with “intolerable akathisia,” – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3670081/.
(4) Appetite and sleep can be affected.
Akathisia can cause a severe loss of appetite. Extreme anxiety can often disrupt the gut, leading to nausea. Vomiting can also occur, triggering dangerous weight loss.
It can be extremely hard to fall asleep and stay asleep while experiencing akathisia. Inner agitation and restlessness create a constant “alertness” at all times of day. The result over weeks and months is an all-over exhaustion which aggravates the symptoms further.
(5) Like “agitated depression,” it impairs functioning.
During akathisia, the nervous system descends into complete instability. Despite being full of energy, the exhaustion prevents the sufferer from doing basic day-to-day tasks.
It feels like being on heroin and speed at the same time. The most simple tasks seem completely overwhelming. Lethargy from exhaustion (inability to rest) combined with extreme energy creates a very dangerous mental state. It feels like an agitated depression or mixed state for some people.
Functioning can be so impaired by akathisia, many will go on to seek professional help soon after symptoms arise. Unfortunately, many cases are overlooked or discredited.
See https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3670081/ to read about how akathisia is overlooked, at a cost.
(6) Intense discomfort and distress.
Akathisia causes people to feel extreme levels of physical, emotional and spiritual distress. Absolutely nothing will bring relief to these symptoms. Almost all intervention to subdue the symptoms end up failing.
Discomfort is an understatement really. This type of discomfort feels like sitting on the edge of a cliff, knowing any moment you’re going to fall to your death. Death itself may seem welcoming, as every passing second spent in akathisia is unbearable.
(7) Akathisia makes your brain feel damaged.
Akathisia convinces people that they will never fully recover from it. In a sense, they may feel their brain is “damaged”. Problems with cognition, thought and memory are common.
This condition frequently leads people to believe that it will last indefinitely. The doom-like despair feels like an “outside force,” not a personal (or situational) emotional distress. It can be very easy for a person with this condition to believe that they will never feel normal again.
(8) It feels like being trapped in another reality, or a nightmare.
Not only does akathisia torment ones physical body, it also torments the spirit. Some have described the sensation as a complete detachment from “the light”.
A sickening dread arises when we have a nightmare about a loved one dying. Akathisia feels like that same sickening dread. It feels like being in your worst nightmare, only the nightmare does not end upon awakening. A person with this disorder may believe they are dying, or experiencing psychosis if it is severe enough.
(9) Akathisia makes you feel like you’re being tortured from the inside out.
Dr. Peter Breggin who wrote the book “Medication Madness,” states:
“Patients suffering from akathisia often use electrical metaphors or descriptions such as “electricity going through my veins” or “shocks in my head”. Words like excruciating, torture, and indescribable are commonly used. Patients often say they would rather die than live with akathisia…these individuals seem to be describing physical phenomena, as if they are being tortured from the inside out.”
*Medication Madness: A Psychiatrist exposes the dangers of mood- altering medications, by Peter Breggin, St. Martin’s Press, 2008, Page 15.
(10) It feels evil in nature.
Akathisia feels evil in nature – a perpetual darkness. This condition sometimes removes the sufferers ability to feel any emotions. The lack of ability to experience joy is pervasive in nature. The only emotions experienced are terror and melancholy.
Many first hand accounts of this disorder describe it as state of “Hell”. Many others describe it as infinite darkness or being lost in an abyss. A complete loss of hope and the inability to see a positive future are also common in severe cases.
It feels like the absolute limit of what a human being can endure. This mental state is easily one of the most intense tests of endurance a person will ever go through in their lifetime.
What to do if you have akathisia.
If akathisia is caused by taking a certain medication, the good news is that it will go away once the medication is stopped. If left untreated, the condition could potentially worsen depressive behavior.
Stopping psychiatric medication suddenly is a risky game. Always seek medical guidance before adding or stopping any medication.
To stop withdrawal akathisia, sometimes reinstating to your previous dose is enough to stop the symptoms. Most of the time though, it is highly suggested to only reinstate a smaller amount first. Seek out https://www.survivingantidepressants.org/ for guidance regarding this. Their advice is invaluable. If the symptoms are so unbearable you have suicidal thoughts, seek medical help immediately.
Medications that may treat akathisia:
- Benzodiazepines (Note: These will only provide temporary relief. Dependency can arise after only a few weeks. Do not take these frequently. Withdrawal from these drugs is dangerous, and they should only be used under extreme circumstances).
- Beta-adrenergic antagonists (Clonidine or Propranolol).
- Blood pressure medications
- Anti-viral medications
Natural supplements that may alleviate mild to moderate symptoms of akathisia:
- Omega-3 Fatty Acids
Please note that natural supplements and medications will rarely “cure” akathisia. Coping with the symptoms of this condition requires an unbelievable level of stamina. Removing the drug causing the disorder should do the trick, but please be patient.
Your progress while healing may not be linear. You may experience periods of relief (windows), followed by many periods of symptoms (waves). This is normal.
Even after the symptoms are gone, many people feel haunted by the experience. The traumatizing experience of enduring such a thing can lead to depression and anxiety. Therapy of some kind may be necessary after recovering from this disorder.
Will it ever go away?
Akathisia always goes away in time. Imagine your brain is a snow globe. A drug shook the snow globe, sending flecks of snow into chaos. Over time, these flecks will fall back to the ground once more. Your brain too, will stabilize with time.
The symptoms of this disorder will not last forever. Your brain wants to reach a state of homeostasis. This process takes time. As unbearable as it is, this is only a temporary state of mind that will pass.
The difference between tardive dyskinesia and akathisia.
Tardive dyskinesia is caused by long term use of dopaminergic antagonist medications. It causes involuntary movements in the face, tongue, lips and other parts of the body.
To alleviate tardive dyskinesia, your doctor may need to significantly lower the dose of your medication, or give you a new medication that will counteract the tardive dyskinesia. This disorder may not go away on its own with time, and intervention is required.
Neuroleptic drugs block dopamine. When taken over the long term, too little dopamine causes dyskinesia. Movements become jerky and rigid. These movements are involuntary, and most are not aware of the movement. In akathsia, the sufferer is aware of the movement.
If you think you are suffering from tardive dyskinesia, visit https://emedicine.medscape.com/article/1151826-overview for more information.
Is there hope?
There is always hope. Most akathisia will go away in time. Most of the time, once the offending drug is discontinued, symptoms will decrease relatively fast.
Coping with the symptoms of this condition may not be possible. In this case, going into complete survival mode is necessary. Taking every day on a moment-to-moment basis is crucial.
“There is the solitude of suffering, when you go through darkness that is lonely, intense, and terrible. Words become powerless to express your pain; what others hear from your words is so distant and different from what you are actually suffering.”
― John O’Donohue, Anam Cara: A Book of Celtic Wisdom.
To read about my experience with akathisia postpartum, see http://circumnavigating-madness.com/2019/10/24/my-postpartum-depression-the-descent-into-hell/.