December 6, 2015 at 10:14 pm

The Agony of Akathisia: In their Own Words

It’s difficult for those of us who have never experienced the powerful sensations of akathisia, a potential but horrific side effect of many psychotropic medications, to truly understand what those afflicted have gone through. The words of people who have experienced it firsthand can give us a glimpse into the utter torture that it is to live with this dreadful disorder, which creates a sense of dread, restlessness and agitation like little else. Phrases like “a sense of doom,” “a living nightmare,” and “hopelessness for no reason” are just a sprinkling of descriptions people who have suffered through this disorder share. David Foster Wallace, a writer who took his life in 2008, explains the desire for death when afflicted with this condition this way: “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.”

“The mechanisms that lead a drug to cause suicide are the same that produce violence. The first of these is akathisia. Akathisia is a state of increased tenseness, irritability, restlessness, insomnia and a feeling of being intensely uncomfortable.”
This accurate description does not fully capture how terrible the experience of akathisia can be. The following comments were posted on the internet by people about their experience of akathisia:
“I feel like I have worms crawling under every inch of my skin.”
“I can’t stop squirming, so sleep/rest is impossible no matter how exhausted I am…”
“My mouth felt like I was sucking on a battery; tingling, electrical.”
“The feeling of suffocation was worse; at the peak it felt like I was being burned alive. I couldn’t stop crying. I wanted to die, every fiber of my being wanted to be dead.”
“It was like a wave of sheer terror and panic. I would have done anything to make it stop.”
“has anybody experienced a sense of doom from their akathisia? When I get akathisia, it feels like it’s going to last forever and stay the same or get worse, that all that is or will be good for me has gone from the world.”
“It felt like someone close to me just died and I couldn’t stop crying. I’ve never felt such doom and hopelessness for no reason.”
“It was an anxiety so intense and deep-seated I thought I was losing my mind.”
“but damn, akathisia is a living nightmare, makes everything else I’ve suffered from up till this point look like child’s play.”
“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.”
“Yesterday I had a strong urge to kill myself not because I want to die but because I want to kill myself.”
Perhaps the best description of all was put forward as a comment on the Aug 3 RxISK.org post The Man Who Thought he was a Monster: Antidepressants and Violence:
The best description I have ever come across of why some people die by suicide which may go some way to help people understand – especially those angry, devastated and confused by the loss of a loved one to SSRIs – is by David Foster Wallace (who was treated for years with Nardil; some surmising that it may have been withdrawal from Nardil which led to his suicide):

“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.”
In his book Medication Madness, Dr. Peter Breggin discusses akathisia under the title “A Painful Dance of Death.” He describes akathisia as “a drug-induced neurological disorder that is known to drive people to suicide and violence, and to madness”*. He notes that “while studies of SSRI-induced akathisia vary greatly…the weight of evidence confirms that it is common.” He cites various estimates that range from 9.7 % of users to 25% of users.** The intensity of the condition can range from discomfort to agony. In his book Brain-Disabling Treatments in Psychiatry, he 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 seen to be describing physical phenomena, as if they are being tortured from the inside out.”***
Akathisia is a fairly common side effect of SSRI (and other) medications. In extreme cases it can cause such mental and physical agony that people are driven to do things they would not normally do.
 
*Medication Madness: A Psychiatrist exposes the dangers of mood- altering medications, by Peter Breggin, St. Martin’s Press, 2008, Page 15
**Ibid, Page 16
***Brain-Disabling Treatments in Psychiatry, by Peter Breggin, second edition, Springer Publishing 2008, Page 48