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12 GROUNDCOVER NEWS MENTAL HEALTH My experience with antipsychotic medication THE CONFUSED CLOUD Groundcover contributor I went through a traumatic experience which occurred over two years, from 1992-1994. When it ended I was broke and mad at the world. In 1996, I was still really struggling. I had moved in with my dad because I was facing homelessness. My dad is a great man but he’ll be the first to tell you he doesn’t know how to help mentally ill people. At the time I had a few paranoid intrusive thoughts, but my main issues were PTSD and not wanting to move on with my life. I was about to move out on my dad. I really just didn’t care about much. My dad decided to pay for me to get mental health treatment. He paid out of pocket. Neither of us knew about the regional Community Mental Health (CMH) system at the time. I had a couple of counseling sessions and an appointment with a psychiatrist. I didn’t know it at the time, but really all psychiatrists do is prescribe medications. I had never been on any psychiatric drug at this point in my life and was very skeptical. I expected either no effect or a placebo effect. My appointment with the doctor was scheduled for fifteen minutes. I talked to him for maybe five minutes. He just kept bombarding me with questions and then gave me a trial pack of Risperidone. Risperidone is a very powerful antipsychotic but the doctor gave no warning of what to expect. Antipsychotics, in my experience, have a very unique effect. They aren’t like benzodiazepines, which are calming, similar to alcohol. They also aren’t like antidepressants such as Prozac, which work over time. Risperidone had a bit of a stimulant effect on me, but it was weird. I didn’t know what was happening but I felt I had to keep moving. I had a feeling like I wanted to crawl out of my skin which, of course, is impossible. I stayed on Risperidone for over a week, and things got worse. Risperidone, like all antipsychotics, organizes thinking. I would get stuck on thoughts. I remember two thoughts in particular. One was, “What if I choke while eating?” I became terrified to eat. It would take all my courage just to eat one hamburger for a day's worth of food. I lost ten pounds in a week. I was calling my doctor daily and I told him about the weight loss and he said the weight looks good off me, which I thought was insensitive and missing the point. I also became terrified I was going to Hell, which came from the religious trauma I had experienced two years earlier. I was being re-traumatized. Whenever I got stuck on either of these thoughts I couldn’t just daydream or let them pass. I was miserable. I kept going to the emergency room even though I had no insurance until a nurse told me to stop. So I went to a different hospital, was admitted and put on Stelazine, another strong antipsychotic. I was also given huge doses of Ativan, which is a calming benzodiazepine, so I slept a lot both during my stay and after I was sent home. Luckily I went to the emergency room again, and this time I was admitted to a mental hospital for poor and uninsured people. There they put me on my third antispsychotic, Loxatane, and after me pacing, shaking and complaining for two weeks they took me off Loxatane and gave me Paxil, an antidepressant. In less than three days I became calm and finally felt okay. So this ended my first experience with antipsychotic drugs. Eventually I learned that the feeling that I couldn’t stop moving is called akathisia. I learned about CMH and took Paxil for about four months after all this. I was mainly fine except I was still mad at the world. I decided to just get on with my life and went off Paxil. I kept trying to work and had some success holding jobs, mostly in restaurants, a gas station and temporary work in factories. I thought I had made peace with my trauma but, as I later learned, mental illness is progressive and gets worse if not treated. I thought I was done with my trauma, but my trauma wasn’t done with me. I kept getting paranoid and also had Obsessive Compulsive Disorder (OCD). My hands were constantly red and chapped from washing them all the time. I’d fixate on guilty thoughts over things from my past or worries over germs. It got harder and harder to function. Finally, the rent was due and I had no way to pay it so I disappeared on my landlord (I had moved out of my dad’s years earlier and at the time was moving about five times a year). The intrusive guilty thoughts were the worst — I hope to write in the future about forgiving myself. I had a lot of “what if” thoughts about what had happened in past situations. I moved into the men’s shelter in Ann Arbor and left a week later. I lied and said a friend would let me sleep on his couch, because I didn’t think I could follow the rules of the shelter. At the time clients needed to be looking for work (or income, but I didn’t think I was qualified for disability payments) and housing to stay there. This was in 2000, a few years before the Delonis Center opened and many years before barriers to help were lowered (which I support). I wandered around for a couple of weeks and moved back into the shelter. The thing is, whether I was in the shelter or wandering around, I was constantly tormented by intrusive thoughts. I became suicidal and called the crisis line over and over on a payphone. They convinced me to go to the emergency room and I was admitted to St. Joseph’s psych ward (now Trinity Health). The nurse asked if I was allergic to any medications. At first I said no but after telling her about the effects of Risperidone, Stelazine and Loxatane she told me I was allergic to those medications. The doctor at St. Joes prescribed me Zyprexa. Like I said: mental illness is progressive and I was much worse in 2000 than I was in 1996. I was in kind of a fog at St. Joe’s and they asked if I wanted to go to ASH House (now called CAS). At ASH I was relieved from house restriction which meant I could go anywhere and get a soda. I was (and still am) very addicted to caffeine. I had been on Zyprexa for about a week when, after having caffeine, I felt something kick in. It felt like my first experience back in 1996 that had scared me. But I was able to channel the energy towards my intrusive thoughts. For me Zyprexa is a much better antipsychotic than the three I was on in 1996. Because my mind responded better to Zyprexa and also because of what I learned during my first experience I managed 24 years of relative success on Zyprexa. For the last year and a half I’ve been on Seroquel (also an antipsychotic) and I like it much more than Zyprexa. Both in 1996 and in 2000 I was given almost no warnings on how powerful antipsychotics are. There’s no concrete data, but Google says most psychiatrists have never been on an antipsychotic. There are two reasons I feel my experiences with Zyprexa and Seroquel over the last 26 years have been so much more successful than what I went through in 1996. First, in 1996 my paranoid intrusive thoughts were infrequent and hadn’t progressed to what I was going through in 2000. So worrying about choking while eating and going to Hell felt extremely uncomfortable and the choking fear was brand new. By 2000, before I went on Zyprexa, I was fixating on paranoid thoughts all day every day. Since 2000 I’ve learned other techniques to cope with paranoid thoughts, such as keeping a pen and paper to write them down and get them out of my head. I hope to write more about those in the future. The other big reason my second experience was so much better is that both Zyprexa and Seroquel don't give me akathisia. Akathisia, the feeling that I couldn’t stop moving, was a nightmare in 1996. Most people have never heard of akathisia. Several people who experienced it have not survived. Stewart Dolin was a lawyer who in 2010 was prescribed generic Paxil for anxiety. He most likely experienced akathisia. I want to point out here that akathisia can be caused by many drugs including antipsychotics, antidepressants, antiemetics and several others. Also, everyone's body/brain chemistry is different. I was fine on Paxil but not on the first three antipsychotics I was prescribed. Anyway, after six days on generic Paxil, Stuart threw himself in front of a commuter train. His wife Wendy Dolin said there was almost no evidence he was suicidal. His main change was experiencing akathisia. She said he had become extremely restless over those six days. A trauma nurse who witnessed the suicide said he had been pacing the platform. Wendy Dolin sued Glaxo Smith Kline, the manufacturer of Paxil, over her husband's wrongful death. She was awarded three million dollars in 2017 but this decision was overturned by an appeals court in 2018 and her case was dismissed on the basis that Stewart was taking generic Paxil — not the name brand Paxil. Wendy also founded The Medication-Induced Suicide Prevention and Education Foundation In Memory of Stewart Dolin (referred to as MISSD). She’s not anti-medications; she just wants to bring awareness about akathisia. According to Google most people and many health care professionals have never heard of akathisia. People who commit suicide because of akathisia, according to Wendy, really just want the horrible feeling to end. It’s not because life is terrible. Stewart had a good job, no debt, a happy marriage and family. His friends and family said there was no real sign he desired to end his life except for the akathisia. Wendy wants people to be careful and aware when starting a new medication or changing it. She suggests having a “buddy” to be in contact with while adjusting. She compares it to crossing the street. People don’t (hopefully) just cross the street, they look both ways. Both times I was prescribed antipsychotics I wish I had some warning about what to expect. Drugs are powerful and we need to be careful. I can relate to wanting the discomfort of akathisia to stop so bad. I also considered suicide, which is why see MEDICATION page 13  JULY 24, 2026

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