In Their Own Words
This page is dedicated to the many people who want to tell their akathisia story, including the trauma they endured due to misdiagnosis. We have not edited these stories, and the views expressed do not necessarily reflect those of the Akathisia Alliance.
If you or a loved one has had akathisia and would like us to post your story, please email it to [email protected]
The people who have been affected by akathisia are suffering, and this encompasses entire families. There are some family members that offer support and others are downright dismissive.
I have been fortunate to have two adult daughters that believe me when I say that I have been damaged due to prescription medications, when I say that I have psych drug withdrawal and when I say I am suffering so much because now I have akathisia.
When I say I have never had autonomy of my body since I have been prescribed harm, they believe me. They have been there, they have watched the levels of damage these drugs were causing and they too have been harmed. They have had to watch their mother suffer without knowing exactly where this was coming from. Each new medication adding another layer of fuckery. The medical abuse, the torturous inpatient hospital stays and the stigma. The stigma affected us all.
After all that damage, I am seeking a peaceful death. I am seeking autonomy. I am seeking to make a choice before my “caretakers” make it for me. I am seeking support from my community.
Please click on the link below to read my story in my oldest daughters words.
Kathleen Fliller 1963 - 2021
Written by: Lisa Hughes in memory of my friend
Kathleen was my friend and we both suffered with akathisia from psych drug withdrawal. We both lived alone and supported each other by being on the phone every day for hours and hours. Kathleen was told by her doctor to cold turkey off of psych meds she had been on for 27 years. Her doctor told her that she shouldn’t have any issues, and if she did they would mild and only last a few weeks. She began to have a lot of symptoms, she counted over 70 and her family, her doctors, her friends all disregarded her because what they were seeing when they would look up these medications is exactly what the doctor had told her. That these symptoms would be mild and only last a few weeks. She suffered months and months and saw many doctors that only offered more prescriptions and when she had increase of symptoms, she was labeled and coded as delusional, medication non-compliant, hypochondriac, and factitious disorder, making up her illness as she is reading about it online. Kathleen gave her family permission to talk to her doctors because she was sure they would all realize her suffering and be able to help navigate how to deal with these symptoms. Her life was becoming unmanageable without help.
Sadly, the medical doctors, therapists, and hospitals all agreed that there was no way that Kathleen could have all these symptoms from discontinuing two medications. These medical doctors actually inadvertently hurt Kathleen the most by their misdiagnosis. Kathleen’s family trusted the doctors and as Kathleen’s symptoms worsened, her new diagnoses were simply not supporting her reality. Thus leading to lack of family and friend support. She was 100% off of all medications, she was changing her diet and researching how to get help with her symptoms. The family later would use this research against her making it look like it was simply her hypochondria, depression and anxiety that was causing her symptoms.
She once explained it to me like this…. She said she felt like she was in a shark tank and no matter which way she would turn, there was another shark, ready to harm her. Be it the medical community, or her family or her symptoms. She shared with me that was planning on ending her life. She recognized that some of these thoughts were from the akathisia, but what other ways were there to avoid the sharks?
For the past fourteen months, I have been living a uniquely horrific nightmare that most will thankfully never have to experience. Last summer, I began taking an SSRI antidepressant for anxiety, which I have always experienced to some extent. The psychiatrist I visited claimed it was perfectly safe to try and that I could stop taking it if I didn’t feel better. I’d always been reluctant to use meds because I knew that my anxiety wasn’t terribly serious compared to other major mental health issues. Ultimately, I decided to try the medication, completely unaware of the fact that this substance was about to be extremely poisonous to my specific genetic makeup.
Almost immediately upon starting the drug, I developed akathisia. To a first timer, this feels like a nuclear bomb going off in your central nervous system; the initial reaction is as frightening and shocking as anything can be. To call akathisia a human rights violation is the understatement of the century; it is truly the most evil thing I have ever, will ever endure. Akathisia is a bizarre constellation of grotesque neurological symptoms, extreme inner agitation and restlessness being the most dangerous, which is powerful enough to remove even the strongest will to survive form anyone – and I mean anyone. Pharmaceutical companies are well aware of how common akathisia is, and that it causes suicide and violence in healthy people who reluctantly agree to try new medications, yet they continue to downplay how serious and long-lasting it can be. As I would later find out, akathisia is actually a form of medication-induced brain damage, which comes as no surprise to anyone unlucky enough to experience it. About 10% of people who take a drug that can cause this, will get it. I was not given informed consent that this was possible, and I am still being truly tortured by akathisia around the clock, a full year off the medication that triggered it.
I am unable to rest or relax, drive, sleep normally, cook, watch movies, listen to music, do photography, work, or go to school. Every hour that I am awake is devoted to surviving the intense physical and mental torture. Akathisia causes horrific non-stop pain that feels like you are being continually doused with gasoline and lit on fire. The desperation to move away from the flames becomes so intense, that some are magnetically and involuntary compelled to end their lives. Akathisia related suicide needs to be considered self-inflicted murder for this reason.
My hope is that by writing about medication-induced brain injury and akathisia online, more people will become aware that this can happen, and know how to survive it when it happens to you or a loved one. Once you are damaged by a med, there is no cure. There are 800+ medications on the market which can cause akathisia, but psychiatric drugs, such as antidepressants and benzodiazepines, are the leading cause.
If you or someone you love takes a medication, you owe them this level of informed consent. Chances are, you won’t be getting it from your catastrophically misinformed psychiatrist.
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.
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.