I never even needed to be on that pill is all I could keep telling myself, feeling weak and ashamed. There are so many other coping mechanisms I could have used for my anxiety. Why didn’t I do my own research? What was I thinking?! Why did I trust the doctors? These thoughts went over and over in my head after I had finally cracked the code and figured out what was causing my horrific and bizarre symptoms. Why will the medical doctors not admit it? Why does the psychiatrist just want me to take more drugs and doesn’t believe a word I say? It’s all over the internet and so many have told their horror stories on countless forums. I thought I was going to die or go insane. For a while, I even thought that I could have quite possibly been under spiritual attack.
I knew if I lived through it, I was going to tell my story. I was going to try to support others going through this, those whose voices go ignored by psychiatry and conventional medicine. I knew I wanted to be an advocate for holistic living and to spread warnings to others about the dangers of these evil psychiatric drugs and some of the big pharmaceutical companies who back them.
It all started after my gastro doctor put me on a drug called amitriptyline. This is an older antidepressant drug of the tricyclics class. I had read on the internet from various sources that this class of drugs was usually not the preferred choice of antidepressant medications these days as there are newer and safer ones on the market now. Of course, I had no idea about any of this the day the doctor prescribed it for me. I just trusted him. I found out everything about its dangers on my own, later.
I believed my doctor knew best about my health. I trusted that he knew it would be safe to switch me from an anti-anxiety drug that I had been taking for several years consecutively and put me on this new drug. It was only during the horror I went through afterward that I found out everything about this evil drug all on my own.
Many say it can be a bad thing to keep reading on the internet. In my case though, it served as a beacon of truth and support — truth and support that I did not receive from the medical or psychiatric community.
The symptoms all started in my sleep. Soon sleep turned from comfortable and relaxing into the biggest fear and anxiety of my life. The first thing were the noises — not external sounds, but a strange array of bizarre sounds in my head. At first, I ignored them, but they only got worse in frequency and intensity. Being that all of this started happening shortly after my doctor increased the dosage of the amitriptyline, my gut told me that drug was the culprit here. I called the doctor’s office immediately and told them I would like to stop taking the drug and asked if they could please tell me the best way to get off it. They told me just stop taking it altogether.
My intuition told me that did not sound right, but I trusted them and did as they said. Again, I believed my doctor. I was expecting some relief. Boy was I wrong. This was only the beginning of the horror.
Shortly after taking my last dose of amitriptyline, things got a whole lot worse. A bizarre cluster of symptoms started. Many were foreign to me, that I had never in my life experienced before. The symptoms were mainly in my sleep, although I did have some occur in my awake state also. Adding to the sounds in my head while I was sleeping, I felt a jolt-like sensation to my head. This scared me half to death. I was baffled as to what it was and what to even call it. Some of these electrical shock sensations were more intense than others. These sensations only occurred right when I was falling asleep. They woke me up each time, sometimes all night long, robbing me of precious sleep. Soon more symptoms were added such as involuntary movements that woke me up out of deep sleep, and other bizarre sensory sensations that I still find hard to describe in words.
Panic attacks were frequent. I felt detached from myself. I felt a sense of impending doom and intense fear, a fear of what might happen to me next. I was scared half to death to go to sleep. I went around in a zombie-like state trying to fight sleep. It felt like the Freddie Krueger movies where victims were afraid to sleep because that was when all the scary things happened. I had crying spells. Some nights I slept for one hour only or not at all. This led me to realize how badly I had taken sleep for granted before. I started thinking about many things I had never thought about before, like how vital sleep is to our lives and how it provides equilibrium. My equilibrium was all out of whack, and I felt like I was caught up in a real-life nightmare. Just writing about it gives me the same fearful feelings that I felt when it was happening.
I could not figure out what was wrong with me. I had been off amitriptyline for several weeks now, and it would have been out of my system because it has a short half-life, plus the doctors told me so. Of course, I checked other sources, such as on the internet, and most sources mentioned the 20-hour half-life. I later found out from other internet sources that just because amitriptyline may have been eliminated from my plasma, this did not mean that its metabolites were also cleared. My medical doctors told me there was no way amitriptyline was causing my symptoms. I started to take guesses as to what could be wrong with me and became very paranoid. I started to request every medical test I could think of from my health care providers. They looked at me like I was nuts and some told me it was my anxiety.
My primary care doctor ordered me a brain MRI. I was scared that maybe I had a brain tumor. Was I having seizures? These electrical shocks were horrifying. Did I suddenly develop a neurological disease? I started to dig deeper into my research and do more precise keyword searches on the internet. This was when I started to find out all the startling information that conventional and psychiatric medicine ignores. Countless people on different forums telling their horror tales of withdrawal symptoms from anti-depressants. Many subcategories within these forums with even more precise symptomatic information. A whole category on amitriptyline with people telling their experiences that were like mine. This is where I also finally found the proper term for one of my most frightening symptoms: brain zaps. These were the electrical shock-like jolts I was feeling in my head. Finally, I had a term for it. I started a folder with printouts of all the things I found and started collecting them. I would spend all day long researching, trying desperately to find someone who could help me. It was always a dead end with conventional medicine practitioners and the psychiatrists I had turned to. How could they not know the term “brain zaps” when they were prescribing these drugs?! I then turned to a rehabilitation group who said they could help me for $60,000 at their far-off inpatient location.
Was this a scam? I was so desperate for help I tried to figure out how to come up with $60,000 until I realized I could not do that, and how did I even know if their claims were true? The only true support I had that kept me going were the other people on the forums who would talk with me and/or answer my questions. I was presented with one option from the online community: reinstate the same drug or a different antidepressant to try to help severe withdrawal symptoms. I was terrified to reinstate amitriptyline and put that evil drug back in my body. Yet I was so desperate to try to lessen these horrific symptoms that kept me from sleeping. I asked my primary care doctor about this option. She said she would do it if that was what I wanted. It seemed they had no idea if it would work or not. It was either reinstate the amitriptyline or go back on Zoloft, the drug I had been on for several years with no problems before amitriptyline. I chose the Zoloft, praying it would help my withdrawal symptoms.
I was in and out of the emergency room four different times at different locations. The ER doctors all told me similar information. They looked at me like I was crazy, telling me again that amitriptyline would be out of my system by now, so that could not be the cause of my symptoms. None of them knew what “brain zaps” were. The first doctor told me to see my psychiatrist as he was just an ER doctor and didn’t see any need to keep me there. The other ER doctor told me I should get tested for sleep apnea. Still another ER doctor just looked at me baffled and never gave an exact answer. Every time I tried to explain to them about discontinuation syndrome, they looked at me as if I was speaking a foreign language.
After seeing these doctors all say similar things and show no acknowledgment of discontinuation syndrome, I realized I was never going to get anywhere let alone get help from anyone in conventional medicine. I realized that either they don’t acknowledge discontinuation syndrome due to their limited education from the pharmaceutical companies that provide them with the drugs they profit from, or they do not want to admit that antidepressant drugs are addictive to your body’s neurochemistry. Throughout my research I repeatedly saw the same message: that one of the worst things you can do to increase your risk for more serious side effects from stopping antidepressants is to quit cold turkey. I was outraged to think that my doctor who prescribed me this drug not only never warned me of the potential side effects, but also did not even inform me of the proper way to taper off this drug.
I made so many trips and phone calls to my primary care doctor. It seemed my interactions with them were of a role reversal — I was the one always providing them with information, and they would basically take note of it. It felt as if they just mirrored back to me what I was telling them. It seemed no matter how much evidence I presented to them, they still did not want to acknowledge discontinuation syndrome. Like other health care practitioners I had been to, my primary care doctor told me she thought it was anxiety. She even went so far as to suggest maybe I was under some sort of spiritual attack! I began to lose all hope in the medical doctors.
I didn’t have much hope in the psychiatric world either, as the first psychiatrist I went to practiced the conventional medical model of psychiatry. I felt no validation from him and he basically just labeled me. He rushed me along and said I had anxiety, and that some stressful event had just “triggered” these electrical shocks in my head! I was shocked by his lack of acknowledgment for what I had to say and for his ignorant manner. He said there was no way amitriptyline caused my symptoms. I knew my body, and I knew that there was no stressful event in my life that would cause these bizarre physical symptoms — it had to be a chemical! His solution was to prescribe me two more antidepressants drugs and get me out the door.
I tried another psychiatric office. There I saw a nurse practitioner. She said she had at times seen doctors prescribing antidepressants when they should not be as it was not their area of expertise. She agreed with me that I should never have been instructed to stop the drug cold turkey, and should have been put on a taper process (a gradual reduction of the drug) that would have taken months. She told me there was no guarantee my symptoms would ever go away! However, she said she had seen the symptoms go away for some and that everyone is different. I had to keep asking questions and probing to get her to answer. She prescribed me another nervous system drug (gabapentin) to try to help calm down my brain zaps. She said if that drug did not work then maybe she would try some other type of reinstatement of a drug with a similar composition as amitriptyline. However, it seemed she was basically guessing at how to treat my symptoms. There was no exact remedy due to the damage that had been done already by not tapering off the drug the proper way! I was outraged that this was happening to me.
I came to the realization that I was experiencing a cluster of symptoms that were all mentioned by Dr. Flavio Guzman, MD in an article and PowerPoint presentation for the Psychopharmacology Institute. These symptoms were sleep disturbances, disequilibrium, sensory symptoms, affective symptoms, gastrointestinal symptoms, and general somatic symptoms. His research also mentions how discontinuation syndrome is often misdiagnosed by clinicians and treated as other developing diseases or symptoms within the patient.
The more I read on the internet, the more horrified I became. The doctors had told me not to read so much on the internet or I would just scare myself. The doctors also insinuated that people on the internet were not telling valid stories, or were leaving out vital information. However, in my case, the internet was one of the only sources of truth that I came across. Hearing others’ recovery stories and knowing there was light at the end of the tunnel helped me get by when I almost felt ready to give up.
To this day, I still get brain zaps at times in my sleep. I still feel these “dark times” where I feel fearful and hopeless that the symptoms may never go away. My hope is that my nervous system is slowly healing every day. I decided to start my own blog and forum called zappingantidepressants.com as my contribution to help support others going through dark times in their lives from antidepressant drugs. I invite readers to join my forum, engage within the community and tell about your experiences with antidepressant drugs and/or conventional and psychiatric medicine.
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.