Akathisia - in the words of patients and loved ones

The following are true stories that illustrate the dangers of medication-induced akathisia and the harm being caused by health care providers who fail to recognize it. If you or a loved one has had akathisia and would like us to post your story, please email it to [email protected]

Marcello

Marcello

Last April, eight days after starting a new SSRI for anxiety/depression, I had a reaction called Serotonin Syndrome. It felt like a bomb going off in my central nervous system; the reaction was the most acutely painful thing I have ever experienced. At the time, I didn’t know what was happening. A few weeks later, after the effects of the reaction (appeared to have) settled, my psychiatrist tried me on a different SSRI. While on an extremely low dose of the second SSRI, I experienced my first episode of akathisia, which also came and went.

In the following months I felt extremely uneasy as if I were having some new kind of hellish panic anxiety that I had never experienced (which was really just akathisia building slowly). I didn’t think to connect the way I was feeling to the reaction that seemed to have cleared. The same psychiatrist then prescribed me Xanax which I took daily for about 3 months. This is when all hell broke loose. She completely failed to inform me of the physical dependence that occurs in anyone taking a benzodiazepine (Xanax) for longer than a week or so. My body hit tolerance on the Xanax at month 3 and I was dropped into full blown akathisia. She tapered me from the Xanax fast enough to be considered medical malpractice. I should have been tapered off for months or even a year at liquid titrated doses, she pulled me off in 9 days which sent my nervous system into complete dysfunction.

There are no words to describe how gruesomely horrific akathisia is. It is a neurological condition caused by medications that look (on the outside) like horrific anxiety or psychosis, but feels nothing like the two to the sufferer. With akathisia, comes extremely strong suicidal urges and rage that you can’t control despite wanting desperately to live. It is pure mental and physical torture unlike anything I ever knew was possible. You feel like you need to rip out of your skin and run away from your body as if it is the worst threat imaginable. It feels like being lit on fire. Pure urgency and impatience for no reason. It is hell and it’s happening inside of you so you have nowhere to go. I live with this hellacious pain every second, clawing through every day completely imprisoned inside a true torture cell for a body. Sometimes it is less severe, and other times it’s like someone turns up a knob and it screams at 150%. I truly do not know how I have survived this long.

I have NEVER in my life felt suicidal before this, so you can imagine how extraordinarily terrifying it is to be filled with these purely chemical urges on a constant basis. I have to forcibly isolate myself when it gets really bad and keep ALL stress to a comically low level (singing to myself is a daily occurrence now). I often experience intense rage as if I’m a caged animal being painfully tickled/tased from every direction. It’s unimaginable and entirely outside of my control. I’m able to isolate myself in these times. 

Eric

Eric


By Adam Marquez, in memory of Eric Brennan:

Eric Brennan lived an amazing life that was tragically cut short by akathisia. He was married to his soulmate for over 10 years, and they had been together for 16 years. He was the father of two children, ages 5 and 8, whom he loved so dearly that he wrote songs about them and stayed home to care for them. He supported his wife, a physician, in so many intangible ways. He had a creative mind with an incredible gift of gab and a quick wit – no one could make you laugh harder. An only child, he had a tremendous relationship with his parents who lived nearby and he spoke with them daily.

He was a sensitive and empathetic soul who lived his life in such a way that he brightened the path of everyone he encountered – you would always feel better after being around him. He had a core group of close friends and hundreds of friends made throughout the years. Eric was a favorite parent and friend in his community; helping coach t-ball, carpooling, hosting birthday parties, sleepovers, pool parties and holiday parties with his wife. He enjoyed playing music, painting, cooking, watching his children play sports, and most of all, family time with his wife and kids. He was 41 years old, and often said these were the best years of his life.

In the spring of 2020, Eric developed some recurrent anxiety. These were feelings he had encountered and worked through before. He spoke to his primary care physician about the symptoms. He was prescribed Lexapro, a selective serotonin reuptake inhibitor (“SSRI”), generically named escitalopram. Within just three days and three doses (10 mg each night), his anxiety intensified. On the fourth day, March 9th 2020, he woke up and had what he called a panic attack in the morning. He said his heart was pounding, he heard a loud sound that sounded like an airplane crash in his head, he dropped to his knees and vomited. Throughout this fateful day, he had said he felt weird and in a fog. Pacing around the house, he questioned whether he would ever find joy again. 

He questioned aloud to his wife what this medication was doing to him, and called his doctor. Unable to reach him, he left a message. He spoke to his parents and his friends, but was never able to communicate the seriousness of his situation. Around evening time, with his kids and wife at home with him, he said he was going to go on a beach drive for a few minutes and come back and cook dinner. Before he left, he went upstairs and grabbed his gun. He did not say goodbye or hug anyone, and left no logical reason why he would suddenly want to end it all.

He never came back. Neither Lexapro nor the generic version, escitalopram, listed suicidal behavior as a potential side effect for men of Eric’s age. 

He was loved dearly, he will be missed by his parents, his wife, his children, and many more. We want to share his story to help prevent further tragedy from drug-induced akathisia.

Adam


My full-blown akathisia started with a drug called Seroquel. Before that, I had been bounced around between a few different drugs. A psychiatrist prescribed Ritalin for me to try for a couple weeks. It worsened my insomnia and I became more anxious overall. Later, I went to the doctor and told him what I was going through, and was given Paxil. I started to feel weird — nausea, brain fog and a desire to sleep excessively. I became more depressed.

After a couple weeks, he recommended that I try Zoloft to see if it would improve my condition. Unfortunately, it didn’t. My case worsened and my initial complaint of having mild insomnia turned into chronic insomnia. I went to a different doctor who prescribed Adderall and then changed to Concerta. I had a really bad reaction (extreme fatigue coupled with some beginnings of restlessness) to Concerta and had to quit after a few days. Sadly, it resulted in losing my first job because I couldn’t work for a couple days. I also couldn’t focus and my judgment was somewhat impaired — didn’t do anything unusual but I was less careful. By then, I started just taking Adderall for a while and my insomnia and anxiety worsened. After a year or so, I enrolled in a very demanding graduate program and kept taking Adderall meanwhile which caused major anxiety.

As a result, I couldn’t continue in the graduate program and went back to the last doctor. She thought my anxiety and insomnia may suggest a mood issue and she recommended that I try a mood stabilizer, Seroquel (quetiapine), as a sleep medication that is very helpful for insomnia. I took that medication and my reaction was really bad. I called her and she suggested that I take Benadryl and that would help with what in fact was akathisia. I took Seroquel on and off with other medications and eventually tried propranolol which is a beta-blocker to help with the side effects.

After two years, I started to realize, but not fully, that the medications were playing a huge role in what happened to me — the suffering and the damage that happened to my life. The akathisia worsened and every time I searched, I either ended up thinking that I had ADD or Restless Leg Syndrome and, when I became really desperate, thought it was agitated depression because it fits some of the symptoms. I then gave up and lived in despair, which is an understatement. I started alternating between taking an antidepressant called Remeron, and sometimes taking other antipsychotics, specifically Zyprexa and occasionally Seroquel — the latter of which caused unbearable akathisia.

After years of my ordeal, I started to finally realize that medications were the main cause of my deterioration and stopped my last medication, Remeron, by cutting the dose into half for ten days and then lowered that dose to a half and eventually after a week or two stopped completely. I went into a horrible withdrawal and became extremely depressed, and the akathisia manifested itself very clearly as I was jumping and couldn’t sit still. I had to book an appointment with an orthopedist because pressure on my knees and legs was causing pain, because of constant pacing. This lasted for over a year. After three years from my last medication, I started again to search for an answer because of my neurological and cognitive symptoms (mainly memory and slow word recall), in addition to fatigue and tinnitus.

The lockdown because of coronavirus reminded me and made me think deeply and clearly about the suffering I went through as a result of these medications. The isolation and lonely nature of the lockdown is a familiar fact of life for me because of misplaced trust in the doctors who failed to warn me about the potentially devastating and life-changing side effects of psychotropic medications.