Note: Due to the personal nature of this account, it is published under a pseudonym to protect the author’s privacy.
I woke in the middle of the night, violently propelled from sleep like a diver breaking the surface of the ocean after an aborted dive. I knew immediately that something was wrong. I could feel my heart pounding rapidly, and waves of nausea hit me as soon as I lifted my head. I staggered to my feet, heading for the bathroom, but only managed a few steps before a burst of dizziness forced me back to bed. In the preceding weeks, I’d been startled awake a few times, but I’d always been able to return to sleep soon afterward. This felt different, as if the earlier episodes had been tremors and now the full force of the earthquake had hit. I tried lowering my head against the pillow and closing my eyes, but this only made matters worse. It felt like a bomb had exploded inside my head, and now the energy of the blast was trapped inside me, wreaking havoc as it pulsed back and forth beneath my skin.
I ran through a list of possible causes. My heart was still pounding like a bass drum, so had I suffered a heart attack? I was reasonably fit and healthy and had low blood pressure, so it seemed unlikely. A second possibility was that I’d had a stroke. This made a little more sense. It certainly felt like something was wrong with my brain, and I was confused and had lost coordination, which were both common symptoms of stroke. On the other hand, I was relatively young and had no numbness or paralysis. A third possibility was that something had gone wrong with my medication. The Prozac I was taking to treat Obsessive Compulsive Disorder (OCD) had started to lose effectiveness several months before, so my psychiatrist had suggested I switch to Lexapro. I’d tapered Prozac gradually over three weeks, waited an additional week to let it wash out, and then started on Lexapro. However, after reacting badly to Lexapro, I had to return to Prozac at a higher dose. I’d been back on Prozac for three weeks when this incident occurred. Were my symptoms an adverse reaction to all the medication changes I’d experienced over the previous months?
At this stage, I was still in a state of confusion. I suspected my symptoms were related to my medication but thought the medication had triggered a physical condition — probably cardiac or neural — that could be diagnosed and treated by the doctors at my local hospital. My symptoms were so powerful and my body in such a state of shock that I was sure a cardiology or neurology exam would reveal something was wrong.
That night, my wife drove me to the emergency center at our local hospital, and after some time in the waiting room, I was seen by a junior doctor. By this stage, my most obvious symptoms were heart palpitations. I could feel my heart pounding as if it were trying to break out of my chest. When I told the doctor this, he hooked me up to an ECG, left me for a while, and then returned to check the results. It was a portable machine with a paper readout, and after studying the results, he told me he couldn’t find anything that was obviously wrong. He said the shape of the waveform was a little irregular, but there was no arrhythmia.
When I mentioned my suspicions about my medication, I noticed a change in his attitude. He seemed to conclude I was suffering some sort of panic attack, and my attempts to describe all my other seemingly bizarre symptoms only served to reinforce his view. At some stage, I noticed he was no longer listening to me and just wanted me to go home. This really frightened me. Although I was on antidepressants, I’d never experienced a panic attack before, and I knew instinctively that something else was wrong. The suggestion that my symptoms were caused by anxiety just didn’t make sense. Naturally, they were causing a great deal of anxiety at this point, but I knew they hadn’t been caused by anxiety in the first place. I did my best to explain this to the doctor, but the more I tried to explain, the less inclined he was to listen. Eventually, he agreed to let me see a cardiologist for a second opinion. The cardiologist was on night duty in another part of the hospital, so I needed to wait until he was free to see me.
It was already morning when the cardiologist arrived. He was older and kinder than the junior doctor and listened to my concerns. He checked my ECG again and did an ultrasound. He said he could see my heart was beating strongly, but structurally, there didn’t seem to be anything wrong. He suggested I could have a thyroid problem and booked me in for some blood tests later in the week. I phoned my work to request a day off, and then took a taxi home. I must have looked exhausted because the taxi driver told me I should get some rest. He said the human body was like a machine, and if you forced it to do too much, it would break down. He said he always took a day off when he was feeling too tired or stressed. I thanked him for his advice, and then said goodbye.
Back home, I felt drained, but for some reason, I couldn’t sleep. Whenever I lay down, the palpitations would intensify, and something prevented me from losing consciousness. Even worse, I noticed a terrible inner restlessness that made it difficult to sit still. I would move around the house trying to find a position I could rest in, but no position worked. This feeling increased until it became unbearable. I was physically tired, but my body wouldn’t let me sit still or go to sleep. Eventually, it got so intense that I had to go outside for a walk. I made my way to the park and marched around it repeatedly in an attempt to burn off the excess energy. At some point, I tried to run, thinking a more intense form of exercise would be more effective, but the palpitations were so bad it was impossible. That first day, I must have walked for three or four hours before returning home. I didn’t know it at the time, but this was just the beginning of the nightmare.
When I tried to go to sleep that night, I would start to drift off, and then something would wake me up with a jolt just as I was about to lose consciousness. This happened over and over again, and I got no sleep at all. I tried resting in different positions, even different rooms, but nothing made a difference. The second night was basically the same, although I eventually got one or two hours of fragmented sleep. I’d taken the previous two days off work, and had responsibilities I couldn’t delegate to my colleagues, so I decided to go to work the next day. I got through the day in a kind of dream state, running on adrenaline. The following day, I had to go to the hospital for blood tests in the morning, and then I went to work in the afternoon. I was still getting only two or three hours of sleep each night at most. I didn’t realize it yet, but the next day would be my last day at work for a long time.
I arrived in the morning and tried to do some work at my desk, but the inner restlessness had returned with a vengeance and it was impossible for me to sit still or concentrate on anything. I worked in a large industrial complex, so I went downstairs and tried to do some tasks on the factory floor. I needed to be in motion, so I picked up some garbage cans and carried them to the disposal area about 50 feet away. I kept doing this until all the cans were empty, but my inner restlessness showed no signs of easing. I had to keep moving, so I picked up scraps of paper and transported them to the disposal area. I needed them to last as long as possible, so only transported a few scraps at a time. At some point, I noticed my behavior was drawing attention, but I couldn’t stop — staying still for more than a few seconds was almost unbearable. The inner restlessness itself was tortuous, but so was the realization that my colleagues might think I was going crazy. How could I even begin to explain what I was experiencing? It wasn’t in the realm of normal human experience, and unless they had experienced it themselves there was no way they could understand. Somehow I got through the morning, but I couldn’t bear the thought of staying trapped there any longer. I told my boss that I was sick and needed to go home. I remember walking to the car park wondering if this was the end of my life as I knew it. My colleagues and the factory seemed to exist in a different world to the one I now occupied — I wondered if I would ever make it back.
The next few weeks consisted of trips to the hospital, and walking in the park whenever the inner restlessness got too bad. The cardiologist arranged for me to be tested for hyperthyroidism, sleep apnea, gastroesophageal reflux disease (GERD), epilepsy and angina, but nothing came back positive. I still couldn’t sleep at night, so I visited my psychiatrist to see if he could help. I explained my theory that I’d suffered an adverse reaction to my medication, but he wasn’t interested. He was a busy man, and I could sense his impatience growing as I tried to argue my case. He maintained that my problems were caused by anxiety and could be treated with additional drugs. He gave me Valium to take during the day, and Ambien to take at night. He also gave me a second sleeping medication to add to the Ambien if it didn’t work alone.
I hated the idea of taking additional medications. I’d only ever taken one small dose of Valium, and had felt vaguely sick for days afterwards. I desperately needed to sleep though, so I decided to try the Ambien. It felt like I had nothing to lose. I was willing to accept the potential damage to my body just to get some sleep. I’d never taken a sleeping pill before, so I had no idea what to expect. The first time I took it, it knocked me out for a couple of hours, but I didn’t feel rested when I woke up. I also experienced the vaguely sick feeling I’d had with the Valium, so after a few days I gave up and decided to try and deal with the insomnia another way. By this time I’d consulted several different psychiatrists and doctors, but none of them could explain what had happened to me. They all seemed to think my problems were psychological in origin. In fact, the more I insisted my problems were physical, the more they insisted they were mental. This frightened and frustrated me because I knew intuitively that it wasn’t the case.
During the day, I could ease my inner restlessness a little by walking in the park, sometimes for five or six hours at a time. However, there was nothing I could do about the insomnia at night because something would jolt me awake as soon as I started to drift off into sleep. It felt like a mini explosion or electric shock that ran through my body from head to foot. It was hard to describe in words, so I decided to film my sleep to see if anything would show up on camera. I set my video camera on a tripod, put a sleep mask over my eyes so I could leave the light on for the camera, and then lay down to sleep. After a while, I started to drift off before being jolted awake as I had countless times before. I stopped the video camera as soon as I woke, and checked the footage on my laptop. It showed me slowly relaxing into sleep, and then my body jolting suddenly as a spasm ran through it. After doing some research, I discovered that this phenomenon is known as a hypnic jerk — an involuntary muscle contraction sometimes experienced when falling asleep. These contractions can be accompanied by other symptoms such as rapid heartbeat and sweating, and importantly, they are a known side effect of antidepressants. Finally, I had something I could pin on the drugs.
It was around this time that I found the Surviving Antidepressants website, a peer support group for people harmed by psychiatric drugs. It was clear that my doctors couldn’t help me, so I needed somewhere else to turn. When I found the site, I no longer felt so alone, and it was comforting to have a community I could ask for advice. However, there was also a more sobering aspect to the site. Some people had experienced symptoms like mine for many years and were still in recovery. Reading their stories, I realized my situation was serious and there was no way of knowing when it would end.
I did some more research and learnt that the inner restlessness I was experiencing had a name — Akathisia from the Greek word meaning an inability to sit still. It is described in the medical literature as:
A movement disorder characterized by a feeling of inner restlessness and a compelling need to be in constant motion.
During my research, I found some quotes by doctors who had experienced akathisia firsthand. One, the psychologist Dennis Staker, described it as ‘the worst feeling I have ever had in my entire life. I wouldn’t wish it on my worst enemy.’ Another said he was willing to sell his family into slavery to make it stop. These descriptions may sound dramatic, but anyone who has experienced akathisia will know that they are not. In fact, it is almost impossible to describe the horrors of akathisia in words. Imagine being trapped in the torture chamber of your own body, forced to pace back and forth for hours on end just to get a small measure of relief. In her memoir, Giving up the Ghost, the novelist Hilary Mantel describes it thus:
Akathisia is the worst thing I have ever experienced, the worst single, defined episode of my entire life . . . You are impelled to move, to pace in a small room. You force yourself down into a chair, only to jump out of it . . . You want to hurl yourself against the windows and the walls. Every fibre of your being is possessed by panic. Every moment endures for an age and yet you are transfixed by the present moment, stabbed by it; there is no sense of time passing, therefore no prospect of deliverance. A desperate feeling of urgency — a need to act — but to do what, and how? — throbs through your whole body like the pulses of an electric shock.
This was the feeling I wrestled with constantly in the spring of 2017. My sleep had started to improve a little, but the akathisia would kick in as soon as I woke, forcing me to make my daily pilgrimage to the park. I must admit that during this time, I contemplated suicide. I didn’t want to kill myself, but I needed to know there was a way out if things became unbearable. In a strange way, knowing suicide was an option helped me get through the day. I’d also started seeing a different psychiatrist, who acknowledged that my problems might have been caused by my medication. He could see I was suffering, so he gave me a benzodiazepine, clonazepam, to take if things got really bad. As I’d done quite a bit of research on psychiatric drugs, I knew that benzodiazepines were among the most addictive and dangerous around. I’d read reports of benzodiazepine addiction and withdrawal being worse than that of heroin, so I knew I had to treat clonazepam with respect, and only ever take it as a last resort.
Sadly, there were times when I had no choice. I would endure the akathisia for days on end, and then give in and take a small dose of clonazepam. I was terrified of getting addicted, so I would only take half of a 0.5 milligram pill. Taking clonazepam was like pouring water on a fire. When I took it, the fire would die down for a while before gradually roaring back up. I would go through cycles of taking a dose, and then seeing how long I could endure the akathisia once it returned. I was usually able to endure it for 4 or 5 days before I needed to take another dose. On the days that I took clonazepam, I felt relatively peaceful, so the thought of taking it every day was tempting. However, I knew my tolerance would grow quickly, and I’d need larger doses if I started taking it regularly. There were also side effects to consider. I’d noticed a decline in cognitive function, and my body felt weak and uncoordinated, even on such a low and infrequent dose. I dreaded to think what would happen if I took it every day.
All of this was taking a toll on my body. I’d lost my appetite, and my weight had plummeted from 170 to 150 lbs. I had to be careful not to eat too much, as doing so always made my palpitations worse. I had to avoid all stimulants, including caffeine and chocolate, and I needed to abstain from all food at least three hours before going to bed. The akathisia and other symptoms were so tortuous that I was desperate to find a quick solution. I researched various pharmaceutical treatments in the hope of finding a miracle cure, but the moderators on the Surviving Antidepressants website told me the best thing I could do to speed my recovery was actually to do nothing. What they meant was that my nervous system had been destabilized by all the medication changes I’d experienced, and now the only thing I could do was wait for it to settle down. They said adding other drugs would just exacerbate the instability I was already experiencing. At the time, this advice was hard to accept, but in hindsight I realize it was incredibly wise.
By this time, I was on a lower dose of Prozac, and I made sure that I took the same dose at the same time each day. I also took a magnesium glycinate supplement, as many of the posters on the Surviving Antidepressants website had found this helpful. They advised caution, however, because even supplements can have adverse effects on a destabilized nervous system. The rule was to start with a low dose and never introduce multiple supplements at the same time. They said I needed to give the magnesium time to work, and if I added another supplement to the mix, it would be impossible to judge the results accurately.
After a while, I started to notice a gradual improvement in my symptoms. My palpitations calmed down, and then my sleep began to improve. I was still tormented by the akathisia, but being able to sleep at night made a huge difference. I noticed there were times when my symptoms would ease off for a few days, and then come back for no apparent reason. The moderators on the Surviving Antidepressants website call this phenomenon the ‘windows and waves’ pattern of stabilization. Windows are periods during which symptoms ease off, and waves are periods during which they return. The relief I felt when I reached a window was matched only by the disappointment I felt whenever I hit another wave. During the windows, there were times when I felt relatively normal and could do simple things I hadn’t been able to do previously like going to the shops. I even considered going back to work, but then another wave would hit me, and I’d realize I wasn’t ready. This pattern continued through May and into June. Things were definitely improving, but I still needed to take small doses of clonazepam every four or five days to calm the akathisia, and I noticed that my cognitive functions were continuing to decline. I was also starting to receive texts from colleagues asking when I planned to return to work. They didn’t know what had happened to me, and it wasn’t something I could explain, so I worried they would think I was shirking my responsibilities. I also felt pressure to return to work before my sick leave ran out and I was made redundant.
I read an article that suggested the active ingredient in Benadryl (diphenhydramine) might help, so I decided to try it. This was a huge mistake that triggered an awful bout of insomnia and akathisia that lasted three days. In my impatience to find a solution, I had only made matters worse. It set me back a long way, and for the next few weeks I was stuck in a wave that seemed like it would never end. I had to shelve my plans to go back to work, and try and ride it out somehow. One of the worst things about being stuck in a wave is not knowing when it will end, and when it does eventually end, there is always the terrible fear that it will return. Things did start to improve eventually, but it was clear that my nervous system was so fragile and destabilized that even something minor could throw it out of whack. During this time I lived in limbo. When the akathisia got really bad, I would walk endlessly in the park while others enjoyed themselves around me. I watched them barbecuing, playing sports, or just strolling peacefully beneath the trees, and wondered if I would ever experience that life again. I felt so helpless and alone. I would have done anything to get better, but the harsh truth was there was nothing I could do. I could only wait and hope that in time, my body would heal itself.
This pattern continued throughout the summer of 2017 and into the autumn. I ate healthily, walked regularly, and slowly my symptoms improved. However, I still needed clonazepam, and was concerned that I had become addicted. At around this time, I switched my magnesium supplement from magnesium glycinate to magnesium L-threonate, which is reportedly the only form able to cross the blood-brain barrier. I also read an article about someone who had found relief with pregabalin, the active ingredient in the drug Lyrica. As Lyrica was supposedly less harmful than clonazepam, I asked my doctor if he would let me try it. He agreed, so I decided to take a very small dose the next time my akathisia got unbearable. I knew it was risky, but I was under increasing pressure to return to work, and felt like I had to try something. I took it with trepidation, and was disappointed to find that it made me nauseous, as well as triggering side effects similar to clonazepam, such as lethargy and confusion. I decided to abandon the experiment and go back to clonazepam the next time the akathisia got too bad. However, something remarkable happened. For some reason, the akathisia didn’t return. Normally it got unbearable again within four or five days, but a week passed — and then two — without me needing to take clonazepam. To this day, I don’t know if this was just a coincidence. It’s possible that the Lyrica altered something in my brain, but it could also have been the magnesium L-threonate. Perhaps a more likely explanation is that my nervous system had finally recovered. Whatever the reason, I didn’t complain.
Of course, things weren’t completely plain sailing after that. I still suffered from palpitations, dizziness, and restlessness at times, but I no longer needed clonazepam to control the restlessness. This signified major progress, as I had been trapped in a cycle of akathisia for over eight months, during which I had taken clonazepam every four or five days. I waited another month to ensure I had stabilized and then returned to work. I found that I was able to sit for long hours at my desk, something that would have been impossible when I was in the throes of akathisia. Returning was deeply emotional because there had been times during my ordeal when I feared I would never be able to work again. I still had residual symptoms such as palpitations and dizziness, but they were not bad enough to stop me doing my job. The pattern of windows and waves continued, but the windows were longer and the waves less intense. I felt extremely grateful because I knew there were people like me who took many years to recover, if they recovered at all.
For the next few years, I concentrated on doing my job and rebuilding my life. I wanted to forget the trauma I’d experienced, so I tried not to think about it too much. However, now, more than three years on, I feel ready to document that time in my life. I’m not writing this to scare people away from psychiatric drugs, but I do think everyone should be aware of the risks. When I switched from Prozac to Lexapro, nobody warned me of the potential dangers, so I was completely blindsided by what happened. I also struggled with doctors who didn’t listen to me and just wanted to add more drugs to the mix. This was one of the most frightening aspects of the whole experience, and made it immeasurably worse. I understand that doctors are often overworked and under pressure, but I urge them to keep an open mind when dealing with cases such as mine. One of the most surprising things I noticed was how little they may know about the medications they prescribe. In fact, it is not unusual for them to dismiss the possibility of side effects that are clearly stated on the drug’s safety data sheet. When something goes wrong, there is a tendency to blame the patient’s illness and not the drug, and I hope this tendency can be redressed.
I’d also like to address those taking or considering taking antidepressants. If you are considering taking antidepressants, please think about it very carefully. There are lifestyle changes you can make such as exercise, diet and reducing stress, that may be just as effective as antidepressants without the side effects. If you do decide to take an antidepressant, aim to find the lowest effective dose. They are powerful drugs and people often take much higher doses than they need. If you are already taking antidepressants, and are considering switching or adjusting your dose, please proceed with care. The moderators on the Surviving Antidepressants website use the analogy of a plant growing on a trellis. The plant is your nervous system, and the drugs form the trellis. If you make sudden or dramatic changes to the trellis, you cannot expect the plant to function as it did before. This is why they advocate making very small and slow dosage changes. Their 10% rule states that you should not adjust your dose by more than 10% a month. Their primary mission is to help people taper off psychiatric drugs, so they usually apply this rule to decreasing the dose. Of course, adjustments of 10% are not possible with standard doses, so to do this you would need a liquid solution of your drug. If you are thinking about reducing your dose, I urge you to read the information available on the Surviving Antidepressants website.
As for me, I continue on a low dose of Prozac. I would like to taper off but am concerned about destabilizing my nervous system again. I also continue to struggle with OCD, and know that my psychological symptoms will intensify if I remove the drug. I guess there will always be an asterisk attached to my recovery from the adverse reaction I suffered in the spring of 2017. The restlessness, palpitations and dizziness are largely gone, but I am left with tinnitus in both ears, and I tire more easily than before. I find that I can do my job, but spending time with people wears me out, and I need to rest a lot in my spare time. Naturally, I wish that none of this had happened, and I certainly wish that I didn’t have to live with OCD. However, when I think back to the early days of my adverse reaction, I’m grateful to be where I am now. It was the worst experience of my life, and I feel incredibly lucky to have survived it.