Akathisia: Very Nearly the Death of Me

On an afternoon in early July of 2020, at the age of 58, I was somewhere I never, ever thought I’d be—at a shooting range learning how to shoot a gun. I hate guns, but was desperate to learn how to use one so I could buy one and shoot myself in the head with it.

Of course, the trainer thought I was just wanting to learn how to handle a gun for self-protection. He spent an hour with me, patiently teaching me how to handle several different guns. I learned how to push in the cartridge and hold the gun firmly with both hands to keep it level. I put on ear muffs, pointed the gun at the target paper, and shot bullets into the stand. It was surreal—but then the whole previous year had been surreal and horrific. As I came to understand later, I’d been experiencing something I’d never heard of before: akathisia.

akathisia

What is akathisia? It’s severe, relentless inner agitation that can drive anyone to extreme violence, to themselves or to others. For me, every day for over a year, I had the strongest urge to kill myself. I thought about different ways I could die, but shooting myself in the head seemed like the best way with the most likelihood of success, instead of something else like stabbing myself (several times I took a kitchen knife and touched my chest with it, but couldn’t bear to think I might severely injure myself instead of dying). I’m 99% sure that if a gun had been easily accessible to me at any point during that year, I would have shot myself to death.

I’ve always considered myself to be a pretty resilient person. I’ve traveled to many countries and continents, often on my own with just a backpack, keeping plans flexible to take roads less traveled. I lived and worked overseas for over a decade. I’ve studied a lot about human nature and have a bachelor’s degree in psychology and a master’s degree in public health. I’m stubborn about a lot of things and avoid taking medicine whenever possible. If I do have to take medicine, I take the bare minimum for the shortest time possible. I firmly believe in the mind/body connection and am a proponent of natural healing methods. I’ve had my share of life’s challenges, but never have been remotely suicidal. How in the world had I ended up in this insanely critical situation?

In March of 2019, a confluence of several extreme stressors with my family resulted in my having a really hard time sleeping. After about a month of not being able to sleep for more than four hours a night, I thought maybe I should try some kind of medicine, so I went to an internist who prescribed a sleep med. After a short time when that didn’t seem to help, someone mentioned I could ask for a different med that’s commonly prescribed for sleep (which unbeknownst to me and probably a lot of people, turns out to actually be an SSRI antidepressant). My sleep still didn’t improve, and I started feeling really anxious all the time. So next I was prescribed a benzodiazepine to help calm me down. That didn’t help at all, so I went back and told the doctor maybe I should try an anti-anxiety med I’d heard about that an acquaintance was taking, and he gave me a prescription for that.

During this time, in May of 2019, I went to an ophthalmologist because of a small floater in one eye. The visit was a disaster. I walked into the appointment with clear, perfect vision (except for the tiny floater). After eyedrops that stung and a procedure to insert a mirror lens behind my eye which revealed no problem with the eye, I left that appointment with more than 30% loss of vision with huge floaters, light sensitivity, blotchiness and narrowed sight in both eyes that continues to this day. Follow-up trips to different ophthalmologists and optometrists didn’t help at all. So on top of everything else going on, I had great distress and despair over the completely unnecessary damage to my beautiful vision.

I continued to not be able to sleep for more than four hours and always felt agitated. My whole body was jittery. My usual cup of coffee was out of the question. Nothing seemed to help—taking deep breaths to try to calm down, lying down for a while, taking walks, eating healthy foods. I developed tinnitus. I felt depersonalized, out of touch, confused, scared. It was hard to focus to get basic things done. I found it hard to explain to anyone how intensely nervous I felt. I started to become afraid to go out, and feared I would develop agoraphobia if I didn’t figure this out. In June, someone suggested I request to attend an Intensive Outpatient Program for a week or two. At least the program forced me out of the house each morning and I could interact with others who were struggling, but my inner turmoil didn’t improve, and the psychiatrist in the program increased my dosages of meds.

By July of 2019, I knew all the meds weren’t working for me. As far as I remember, no one told me to never stop taking the meds cold turkey. Although I’d been taking the meds for ‘only’ a few months, when I stopped taking them, for two nights in a row I had headaches and woke up in the middle of each night seeing vivid flashing colors in my brain, hearing jingles from when I was a kid, and hearing several songs over and over again. One song got stuck in my head and played literally all day every day for over a year. What kind of insane side effect is that, on top of all the other side effects? This wasn’t just an ‘ear worm’ that people kind of laugh off as a common thing. I looked up the side effect of a song stuck in your head and found only one mention of it in a clinical research article. (One doctor I spoke to said it sounded like I’d experienced something like an LSD drug trip. I’ve never used illegal drugs in my life.) Also from that time on for over a year, I slept no more than four hours a night, woke up in the middle of each night drenched with sweat, had severe diarrhea every morning, couldn’t focus well, developed numbness in my toes, experienced relentless agitation, and wanted every day to shoot myself in the head.

Throughout that year, I did what I could in my constant state of agitation to find help from therapists and doctors. Most thought I should take more meds, and no one mentioned akathisia. No one seemed to understand what I was experiencing or put two and two together that the original meds may have caused the intense inner nervousness. I did find a Reiki therapist who was very kind and supportive and was able to calm me a bit with her presence and healing practice, and I had some helpful sessions with an encouraging counselor. I was supported by family and friends as much as possible, but they couldn’t know the torture I was going through. It’s like your brain is hijacked. It’s truly an indescribable thing—and has to be one of the most hellish experiences on earth. Every day I thought could be my last. I couldn’t see how I could keep living like this. Every day when I fed my dog I wondered who would take care of her the way I did when I was gone. I wrote at least five suicide letters. They were hard to write but there had to be something so my family and friends would have at least some understanding of what I was going through and how sorry I was that I couldn’t go on.

When I told people about my profuse sweating, they said I must be going through menopause. It was frustrating. I knew it wasn’t that. People told me I should just relax and do positive, active things, and everything would be fine. I was desperate for company to distract me and to feel comforted. Family and friends came over to visit whenever they could, and took me on drives to see some nice scenery. It was tough not being able to see the world clearly because of my damaged eyesight. I tried not to complain too much about it, since there wasn’t anything anyone could do about it anyway, but it was an ever-present added stress, and some people definitely got an earful. Nothing I did—walking the dog, outings into nature, Reiki sessions, therapist visits, game nights with family, watching movies—seemed to reduce the inner agitation.

Every once in a while, like in the middle of a movie or sitting by a river or watching birds fly or during a Reiki session, I got the sense of nerves slightly settling, but that feeling wouldn’t stick. Many people strongly suggested I take anti-anxiety medicine. Some recommended TMS (transcranial magnetic stimulation) or ECT (electroconvulsive therapy) since my anxiety wasn’t going away. I didn’t have much resilience, but luckily a few family members were adamantly opposed to those procedures, which supported my sense at a deep soul level that those things would not lead to long-term healing and could do who-knows-what damage to my brain. Having my brain zapped by magnets or electricity seemed completely crazy to me. I clung to the belief that the only way through to the other side was to keep pushing each day without medical intervention.

After the shooting training, I knew I didn’t have much time left and had to do something radical right away. Within days, I got in my car and drove and drove for my life to another state where some family lived and where there was an anxiety program I could attend. The two-month program was helpful in getting me out for four hours each day and meeting others who were experiencing something similar and recognizing that I’m not the only one suffering like this. I met one-on-one with a therapist each day to do cognitive behavioral therapy and exposure activities created uniquely for me. That kept me on a schedule and seemed to help some. There was always the assumption that I should be taking meds while in the program, but I continued to resist. We were discouraged to talk to others in the program about any specifics going on for them, but I did find out that two of them had had TMS and it hadn’t helped them at all.

During that period in early fall of 2020, I decided I needed to do something to supplement the anxiety program. I’d learned about different kinds of natural mind/body therapies before all of this (and had experienced Reiki recently). I knew about the power of the subconscious mind to heal, and intuitively understood that my road to recovery had to incorporate something more than talk and exposure therapy. Mind/body therapeutic techniques could let my subconscious clear emotions and guide my healing. So I found several healers in the area who practice hypnotherapy, breath work, Brainspotting, and Somatic Experiencing, and did some sessions with them. (There are many, many other natural healing modalities.)

At the same time, I kept pushing myself to do things that’d always lifted my heart, like taking drives in nature or giving my niece a gift card or listening to music or buying flowers for my sister. I signed up for a Zoom class with trepidation, hoping I wouldn’t seem too ‘out-of-it’, and discovered I enjoyed the mental stimulation and could follow what was going on well enough. During walks, I made it a point to smile and say hi to people, and looked for interesting details everywhere, like a tiny purple flower sticking out of a rock wall, or the shifting shapes of moving clouds, or the light bounce of a dog on a walk, or a bird showcasing an intricate melody, or the sweet scent of a rose filling my nose. Beautiful things! It was important to develop the habit of noticing Good all around. I initiated small talk with cashiers and other customers in stores. People’s kindnesses—words and gestures—meant the world to me. Through the constant blur of disorientation and nervousness and overwhelm, I clung to those kindnesses. My sister had encouraged me: “Take baby steps.” So bit by bit, I pushed and stumbled along each day in hopes for freedom from this wretched state of being.

And then, one day in October of 2020, as I was standing in an aisle of a supermarket, I paused and couldn’t believe it—I wasn’t feeling that uncontrollable nervousness in my body that I’d felt for over a year. I looked around and thought Oh my god, is this possible? I decided to return to the store the next day to see if I still felt the same way, and, thank god, I did. I knew then that I’d be okay. There was still healing to do, but it was a clear shift. I was feeling calmer everywhere I went. I could fall back to sleep after waking up in the middle of the night, and get six or seven hours of sleep instead of three or four. I started waking up each morning with a sense of relief instead of pure panic. I continued to have tinnitus and numbness in my toes, but I stopped hearing the song that’d been stuck in my head for over a year (hallelujah!). I began feeling more connected with everyone and everything. The me I used to be—my spirit—was returning. I started to sing along with my favorite music again. I had more energy and could accomplish more. I was better able to handle the everyday responsibilities in life. I was able to call a company about a mistake in billing and hold my own and get it corrected. Resilience and strength!

Throughout the 18 months of immense suffering and trauma, I somehow hadn’t thought of looking for support groups online. It was only after I started getting better, in October of 2020, that I began to read and watch videos and discover the magnitude of widespread harm that’s been done and continues to be done to an astonishingly large number of people. Countless people’s lives and the lives of their loved ones have been horribly impacted by the side effects of psychotropic medicines. The more I researched, the more I discovered thousands of references—from over many decades—of injury caused by psych meds. I read how pharmaceutical companies do everything they can to market drugs despite the drugs having questionable efficacy and significant or even deadly side effects. I’d had a sense of that before, but hadn’t realized the extent of data manipulation and cover-up and deception that’s been going on.

I learned the word akathisia and knew immediately that it was akathisia that almost killed me. I wondered why so few people seem to know the word. I wondered why a visit to a doctor doesn’t include a conversation about akathisia as a possible side effect to psychotropic meds (and other meds, as well). I wondered why people are likely to be immediately prescribed increased dosages of meds and/or different meds when they tell their doctor they’re still anxious, rather than the doctor considering that they may be experiencing akathisia from the original meds and that adding or changing the meds could make things worse. These days, every time I hear of a suicide or a mass killing, I think: “Could akathisia have been behind it?” Of course, not all self-harming incidents or suicides or mass killings are attributable to akathisia, but my guess is a significant percentage of them are. It’s clear to me how necessary it is for akathisia to become a well-recognized household word. Everyone, including and especially all health care professionals, should know what akathisia is and be on the lookout for signs of it.

The myth of a chemical imbalance causing mental issues is dangerous and plain wrong. I didn’t have a chemical imbalance from the original stress I was under. It was the meds that caused chemical damage to my brain and body. I had no idea I’d suffer as I did when I decided to take the meds. If I’d known, I wouldn’t have taken them. Informed consent is a critical aspect of health care. People need to know what they’re getting into before taking any medication. They need to clearly understand what negative side effects might appear when taking any psychotropic medicine. And of course by any measure of ethics, healthcare providers should direct people to non-invasive, non-chemical methods of healing whenever possible, and certainly as a first step. Psych meds are simply not the answer to most emotional issues people face. Many studies have demonstrated that placebos work as well or better than drugs. Yes, there are cases where psychotropics are needed. But for the most part, people are enormously better off managing their stresses and other issues without taking some kind of “magic” pill. The common acceptance of using pharmaceutical drugs to deal with normal human emotions is an epic public health tragedy.

Thankfully, a lot of people are working hard to get the word out about the dangers of psychotropic medications. People are sharing their stories online. Interviews are being posted with health professionals and researchers and with those who have suffered immensely from psychiatric medications’ side effects. People are writing books and articles and giving talks about perilous, out-of-control overprescribing. More and more voices are being heard—voices that are courageous and deeply dedicated to changing the status quo. I’m grateful to all of them! Their experiences and messages help people become more comfortable talking about the side effects of meds in everyday conversation. They encourage patients to take the initiative to become better informed and ask more questions of their health care providers. They prompt people to think about steps they can take to feel better that won’t include brain-altering drugs that have dozens of short-term and long-term negative side effects, including medication-induced suicide.

Medical professionals who are speaking out can embolden their colleagues and medical students to really consider the benefits versus risks of psychotropics. For the most part, doctors do their very best to do what they think is right for their patients, but what they think is right can come from years of embedded distortions of the truth about the effectiveness and safety of groups of medicines. Often, assumptions are made early on and not questioned. Most health care professionals simply don’t have the time to keep up with the research on drugs, and even if they did have the time, much of the research is slanted in favor of Big Pharma. It’s not unusual for physicians to be educated about psychiatric medicines solely by pharmaceutical representatives.

I’m grateful to everyone who supported me through my dreadful journey—family and friends who did as much as they knew how while trying to understand how the person they knew so well could be suffering so; random people who spontaneously and generously demonstrated kindnesses big and small; therapists and healers who reawakened my inner strength and resources. You simply can’t put a price on kindnesses and support. And you can’t put a price on feeling relaxed in your body. It’s a most beautiful thing that I will never take for granted. I’m back to enjoying my morning cup of coffee. I’m dealing with some pretty significant personal challenges, but whenever I feel stress come up and need a re-set, I look for healthy ways to de-stress, like connecting with people, animals and nature and doing bodywork, and learning new things. Fallout from my experience will remain, but the insights I’ve gained are helping me navigate life better, keep perspective on what’s really important and live more consciously. I’m better able to accept the things I can’t change. I live with less guilt and shame. I’ve learned to be less reactive and am simply grateful to be here.

It’s crucial for people to pause and think twice (or three or four times!) before choosing pharmaceuticals or other invasive interventions like ECT to relieve their angst. There are many healthy ways to process difficult feelings in supportive environments and with mind/body healing sessions. No one should have to go through what I and many, many others have gone through, are going through right now, or will go through in the future unless big shifts in societal thinking and policies occur on many levels. Step by step! With increased communication and awareness, the tide can turn. The needless suffering from side effects can stop.

May we look back one day—sooner rather than later—and be grateful for the people from many different professions and walks of life who shared their experiences and knowledge and sounded the alarm about the pharmaceutical industry’s slick promotion of psychiatric medicines. May we come to know how blindly most of us followed along without stepping back to see the big picture and recognizing the tremendous toll these meds were taking on the young and old and everyone in between. May we all strive to be like the little child in the story who bravely speaks up when no one else does: “But the emperor doesn’t have any clothes on!”

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Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.



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