MISSD’s latest akathisia awareness campaign features billboards in Northeast Ohio, near Cleveland medical centers. Shelly and her husband proudly collaborate on this campaign to ensure others are safer and better informed than she was. Her powerful story reveals how akathisia is often misdiagnosed and mistreated and highlights the pressing need for akathisia education.

They Said It Was Anxiety–But It Was Akathisia , By Shelly from Ohio

The Beginning

My mother was one of my best friends. We swam together at our local rec center and enjoyed special moments just goofing around and having fun. With a caring, outgoing personality, my mom made strangers feel at ease and could make anyone laugh. During our last Thanksgiving, as we prepared dinner together for our family, I recall feeling like I was on top of the world. I was newly engaged to a wonderful man I met late in life; it was an exciting time filled with dance lessons, golfing, and getting to know his family and friends. It was a great Thanksgiving, and I looked forward to many happy years ahead.

Later that holiday weekend, my mom said she had received some abnormal test results. She shared devastating news: She had lung cancer, small cell carcinoma, an aggressive cancer. In just six weeks, she deteriorated, and on January 5th, she was gone. My entire family was in shock. 

Even though I was crushed and heartbroken, what I was going through was normal grieving. It wasn’t anxiety or depression, nor did I have a history of such. In addition to the shock of how quickly my mom died, I was also worried about my newly widowed father, who seemed a little lost. 

This situational stress and grief led me to see my family doctor, who prescribed Ativan (lorazepam). Having an academic degree in the healthcare field and a previous career in the profession, I made sure to ask him about possible side effects. I recall he casually described the medication as “like drinking two beers.” That was it—the only information he shared.

Ativan is a benzodiazepine; “benzos” are psychotropic medications often prescribed for anxiety. Other benzos include but are not limited to, Valium, Xanax, and Klonopin. I share this educational info because most people are unaware the anxiety medications they are taking are benzos. Further, benzos are often prescribed off-label for unapproved conditions.

• Missed opportunity: Receiving proper informed consent from my family doctor, who prescribed Ativan, would have prompted me to seek other non-medication options.

Symptom Escalation and Misdiagnoses

I took Ativan as prescribed and took it sparingly as needed, which was four or five pills a month, about one pill per week. I thought I was being cautious and doing the right thing. Within the first couple of weeks, I experienced frequent insomnia and occasional heart palpitations. Thinking it was from the stress of my mom’s death, I just tried to deal with it.

For the next few years, I took Ativan in the same manner, and my insomnia and heart palpitations became more severe and frequent. I also developed a sensitivity to noise and light and an indescribable restlessness. These symptoms never felt like anxiety. I can best describe the restlessness as feeling like I would fall out of my chair. Other symptoms soon emerged. They included dizziness, sometimes vertigo, ringing in my ears (tinnitus), and this frequent, unbalanced feeling of “being on a boat.”

Eating at restaurants and driving on the highway became difficult and eventually impossible. Sitting at busy intersections made me feel restless and trapped. Simple things were out of the question, such as having friends and family over to visit. Losing my ability to participate in routine daily activities was particularly distressing, considering that before my mom’s death, I was an outgoing woman who enjoyed social events and passionately supported my husband’s growing business.

Alarmed by symptoms I had never before experienced, I needed to know what was happening to me. I scheduled an appointment with a new General Practitioner because my family doctor was retiring. His nurse practitioner received a detailed history of my symptoms and medication. I said these symptoms and sensations felt markedly different from anxiety. However, she disagreed with me, insisted it was anxiety, and suggested I increase the frequency of the Ativan.

When things did not improve, almost two months later, I saw an Audiologist and an Ear, Nose, and Throat Specialist. I hoped that these two specialists would help me. However, after a series of tests, I was again told my symptoms were due to anxiety and that the mild dizziness was from an “unknown cause.” Neither specialist suspected that Ativan was causing problems.

• Misdiagnosis: Had the nurse practitioner and medical specialists accurately recognized akathisia, it would have helped me explore a patient-led, safe-tapering option.

Fateful ER Visits 

As my condition worsened, my husband and I thought for sure that I had a brain tumor. Our concerns led us to the local ER, affiliated with a well-known, reputable medical facility we trusted. 

After sharing my medication and symptom history, they treated me with Reglan (metoclopramide) and Benadryl (diphenhydramine), a combination called a “migraine cocktail.” Not to be confused with a drink, the migraine cocktail was a polypharmacy mix administered intravenously. I thought I would finally get relief from the last few years of suffering.

Before administering the IV, the doctor and physician’s assistant said, “This cocktail may cause slight, temporary irritability.” That was it. There was no mention of any serious adverse risks or the FDA black box warning.

Within minutes of the IV push, my heart raced, and I instantly felt sheer terror and agitation on an inhumane level. It felt like my brain was burning. I shook, got up, and began uncontrollably pacing. My husband saw it all unfold and later reflected, “My wife as I knew her changed in an instant–from someone normally at ease to having a look of terror and pain on her face.” 

When the doctor became aware of how dreadful I was feeling, he brushed it off as no big deal. I was discharged in far worse condition than when I arrived, and we left the ER clueless. I felt deathly ill. Knowing something was terribly wrong, we Googled “Reglan” on our way home and easily found info about its severe adverse effects and the Food and Drug Administration (FDA) black box warning. The warning mentioned tardive dyskinesia but failed to mention akathisia. 

• Informed consent: I would have NEVER permitted the ER to administer Reglan had I been properly warned of the possible severe adverse effects.

I went to bed that night in such a horrible way; it was a nightmarish, constant state of terror. I felt ‘lightning’ in my brain. My body was strongly vibrating, mostly in my chest and legs, and I asked my husband to put his legs over mine to reduce my shaking. I thought he could see all my movements but later realized that some of what I felt, the restlessness, was also internal.

I didn’t sleep at all. My unexplainable intense sense of doom and agitation was peppered with intrusive thoughts that can only be described as a sci-fi movie. They were nonsensical and frightening. 

The next morning, I paced uncontrollably in my living room. With no relief, I returned to the same ER. They provided Xanax and a diagnosis of “medication reaction.” Xanax can cause akathisia, yet nobody ever mentioned the word akathisia.

• Mistreatment: Prescribing akathisia-inducing medications to a person who is suffering from akathisia can cause further harm.

Uncovering the Truth

As my life-altering symptoms continued, my husband and I adapted to improve my safety. We made several physical changes to our home, such as installing handrails in the shower and moving necessary items to the first floor since I couldn’t use the stairs. We also changed our daily routines and eliminated social activities that would be impossible for me to endure.

Increasingly isolated and desperate to find someone who would listen to me and consider my symptoms, I again turned to the Internet. After Googling “urge to move, uncontrolled movements and pacing,” I saw it right there on my cell phone screen: Akathisia. It was a term I had never heard, yet the more I read, the more apparent the cause of my symptoms became.

This newfound knowledge helped me realize that I had early signs of akathisia when I started Ativan. That I was frequently misdiagnosed and mistreated caused me further harm. This type of harm is iatrogenic, which means caused by medical error or medical intervention.

When I ordered my medical records, I discovered something shocking in my chart from my second ER visit. In a part of the chart that patients don’t see unless they request their records, the doctor wrote: “Akathisia not responding to Benadryl.” 

Why was this critical info never shared with us? Why was akathisia kept in the dark? Withholding this information was wrong. It denied me the opportunity to understand what was really happening, seek appropriate care, and make choices to help me heal sooner. 

Although it was a relief to learn my symptoms had a name, there was still no relief from my symptoms. Feeling like I might not make it to Christmas, we sought help from a counselor nearby. We brought akathisia information from established medical journals and explained how Ativan and Reglan harmed me. Yet again, I was told my symptoms were just anxiety, and he said my excruciating urge to move was “part of my personality.” Even after my husband’s insistence that this was not who his “wife was before these medications,” the counselor still disbelieved us. He dismissed the akathisia info–and even made a joke about my symptoms. That was the last time I sought help from medical professionals.

Medical Gaslighting and Five Lost Years

I was always a person who was available to help friends and family, but my symptoms were so debilitating that some of my friendships ended, and others were put on hold. Explaining my situation became exhausting. A few friends didn’t take it seriously, and others likely didn’t believe me. The intense suffering and uncomfortableness that acute akathisia can cause are on a scale few can understand. 

During the worst of it, I set timers at one-hour increments to engage in distractions such as doodling and coloring. I focused all my energy on healing and relied on my husband to do almost everything, which was a humbling position to find myself in. I was:

• So physically weak that I needed a cane and sometimes a walker.
• Unable to climb stairs. 
• Too dizzy and unbalanced to shower while standing.
• Unable to drive. 
• Too over-stimulated to read, watch TV, or listen to music.
• Unable to sit still.

The list goes on, but looking back on it today, I think the worst of it all is the trauma of being gaslighted by the very professionals I trusted and turned to for help. I lost five years of my life to akathisia misdiagnosis and mistreatment. These errors were made possible by inadequate akathisia knowledge and not being believed. I knew myself well, and my husband knew me well, too. All of us are experts on ourselves. That is, caregivers and patients should be listened to and trusted when they provide detailed information that explains one’s “baseline” – how the person was before taking medication.

Unfortunately, my adverse experiences are not rare. Still, I feel a bit lucky, considering that one of the most serious symptoms of akathisia can include medication-induced suicidality.

In the early days of my “acute phase,” I remember developing this awful, strong urge to open the car door and jump out of our moving vehicle. These thoughts made no sense given that prior to akathisia, I loved my life and was incredibly happy. Never had I ever had such thoughts. It is important to note that these thoughts and urges always felt chemical in nature and foreign to me. I’m so grateful this symptom disappeared as I healed. 

Understandably, it is difficult to revisit and share medication-induced suicidal thoughts. It’s also challenging to comprehend that a medication-induced disorder can cause such severe symptoms. Yet, drug companies and regulators have been aware of this risk for decades. Akathisia-induced suicidality is noted in internal pharmaceutical documents, published in medical journals, and became apparent during clinical drug trials with healthy volunteers. Some clinical trials for various medications also miscoded akathisia as anxiety, similar to what I experienced.

Erroneous Beliefs 

In college, my courses briefly covered extrapyramidal symptoms (EPS). They touched on some extreme and obvious physical signs, like those caused by tardive dyskinesia. But we didn’t learn about akathisia, a word never once mentioned. We were taught that it was only first-generation antipsychotics that caused EPS. This misconception continues today. The reality is EPS is associated with hundreds of medications prescribed for various ailments such as acne, infection, and high blood pressure. I learned this lesson years too late—and learned it the hard way—when I developed akathisia. (For an extensive list of medications that can cause suicide, see RxISK.org at https://rxisk.org/drugs-that-can-cause-depression-agitation-suicidality/ and https://rxisk.org/500-drugs-that-cause-depression-and-suicide-aka-akathisia/.)

The adverse psychiatric symptoms of akathisia aren’t caused by situational challenges and are not DSM-labeled disorders. Yet my experience and that of thousands of others show that many healthcare professionals often believe otherwise. Akathisia-induced suicidality is not due to anxiety or depression, and akathisia-induced suicides aren’t traditional “deaths of despair.” 

Another misconception is that once an akathisia-inducing drug is out of one’s system, symptoms automatically subside. This is not always the case. Withdrawal akathisia is one of the four types of akathisia, and symptoms start when the medication is discontinued. I liken akathisia to being injured by a rock. The injury is not over after the rock hits you. Time is needed to heal after impact, and this timeline for healing varies from person to person. 

Lastly, many healthcare providers and consumers believe that benzo injury is an addiction of sorts and that those suffering experience cravings. This falsity misleads both healthcare providers and patients to erroneously believe that because there are no cravings, the medication is not causing their symptoms. 

Gratitude and a Supportive Path Towards Healing

We were now painfully aware that seeking help from medical professionals who were grossly undereducated about akathisia could cause me more harm than good. Eventually, I found people who not only listened to me but clearly understood my medication-induced harm. Their knowledge and this kind, gentle support system, along with my husband, helped remind and reassure me that my symptoms were temporary. Having this hope was crucial to my survival.

Some of these online support communities have been around for over 20 years and collectively have more than 100,000 members. These numbers reflect that akathisia and psychotropic medication-induced harm is not rare. In hindsight, I realize that akathisia has also affected friends and family. When one friend of mine presented to the ER with involuntary movement, EPS, and akathisia, she, too, was wrongly told it was just anxiety.

I am slowly healing and well on my way towards recovering my true self. While I’m not a doctor, and everyone’s path will differ,* I have made significant progress. For me, time, being medication-free for five years, and excellent self-care really helped. Also key to my recovery was the unwavering support from my husband and Angela Peacock, a trauma-informed coach who assists people recovering from medication harm. 

I am endlessly grateful to my husband, who never stopped advocating for me, and to family, friends, neighbors, and work colleagues who “stepped up to the plate” to help. I am joyfully reclaiming my life! 

Just last week, I went Christmas shopping for the first time in years. We even enjoyed a meal at a restaurant, and I didn’t have to rest for days afterward. Family and friends are invited to visit, and I don’t worry about how I might feel once they arrive. I used to sit on a bedroom chair, exhausted and in pain, just looking out the window. I couldn’t see a future for myself. But now I find myself daydreaming about future plans, and I take steps to put them into action. Although I was a prisoner of pain for five years, things are looking up. I attend outdoor concerts, drive, go to the park, laugh with friends, and even use the stairs. I’m thankful to regain my freedom and autonomy.

A Call for Education and Awareness

There is an urgent need for systemic change in how akathisia is understood and addressed. That akathisia-inducing medications are so widely and casually prescribed is also a significant factor causing immense and avoidable harm. Healthcare professionals must be educated about akathisia and its symptoms. Proper informed consent, thorough medication histories spanning several years, and attentive listening are critical. Patients and caregivers should also be empowered to advocate for themselves and trust their instincts when something feels wrong.

As I look back on my ER visits, I can’t help but consider things that may have helped me avoid misdiagnosis and mistreatment. One possibility is for medical facilities to have an informative akathisia poster on their wall, similar to a pain-rating scale with emoji-like faces used to assess a person’s pain level. An akathisia rating scale wouldn’t start with a happy face as these pain-rating tools depict. However, an akathisia poster can help ER staff accurately identify symptoms and highlight that akathisia can cause medical emergencies.

Other calls for action include:

• Mandatory medical education and ongoing training about akathisia and related adverse drug effects to include medications associated with akathisia, risks, and symptoms.
• Informing healthcare consumers and caregivers about the risks of akathisia and symptoms to watch out for and report. This info should include that akathisia can start after a final medication dose and that, in some cases, symptoms can last for months–even years.
• Providing proper Informed Consent. There can be no medical freedom of choice if patients are unaware of real risks.
• Offering a variety of treatments: treatment options to help people effectively deal with situational life challenges should include talk therapy, exercise, improving diet, improved sleep, self-care, getting a hobby, nature therapy, lifestyle changes, career changes, life coaching, etc.
• Taking akathisia out of the darkness. Patients exhibiting symptoms of akathisia should be told straightforwardly. This knowledge can help sufferers and their caregivers seek therapeutic care and prevent further injury. 

Let’s get comfortable saying the word “akathisia” and not keep it a secret.

Advocacy and Hope

After our adverse experiences, my husband and I are forever changed in various ways. While neither of us ever intended to become akathisia experts, the fact is, we are. We’re experts through years of lived experience coupled with extensive research that was necessary for our healing. It’s an unfortunate reality to find we have to educate medical professionals. One example is when my husband went to the ER for a kidney stone. He was speaking with the ER nurse about my Reglan injury, and she said, “I hate giving that drug because of that reaction. Not all ERs use it, but some still do.” We were glad she knew about ‘that reaction’ but disappointed she was unaware it’s related to akathisia.

We seldom miss an opportunity to educate people about akathisia. From our participation in support groups to discussions with healthcare professionals, family, and friends, we share our knowledge with the hope that doing so can prevent others from enduring what I did. That our advocacy and awareness efforts have grown from first-person conversations to public health billboards in our community, is a proud achievement. Increasing public awareness is currently an unfortunate necessity. Yet, we hope doing so helps akathisia become a household word.

*Disclaimer

This article, “They Said It Was Anxiety, But It Was Akathisia,” by Shelly from Ohio, is for informational purposes only and not intended to be medical advice. It neither diagnoses nor treats any illness. Please consult a trained medical professional if you have any concerns about your health or well-being. Readers of this article take full responsibility for their decisions and actions and hold the author, Shelly from Ohio, not responsible for such decisions or actions.

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