Meet Edward, a member of the PatientsLikeMe mental health community. He’s been living with schizoaffective disorder since the late 1970s, and over the past 35 years, he’s experienced many symptoms, everything from paranoia and euphoria to insomnia and deep depression. Below, he uses his own words to take you on a journey through his life with schizoaffective disorder, including a detailed account of what happened when he stopped taking his medications and how he has learned to love God through loving others.
How it all began:
In my early twenty’s in 1977, I was doing GREAT in college, double majoring in Mathematics and Electrical Electronic Engineering and in the top 1% of my class when I started having problems with mental illness. My first symptom was an intense mental anguish as if something broke inside of my head. Then my sleep started to suffer and I would fall asleep in my college classes, which was not at all like me. Then I started having strong mood swings and I became very delusional. I experienced all of this without the use of any drugs or alcohol; in fact I have never used any street drugs or alcohol. Life became HELL and I tried suicide. My parents then put me in a psychiatric hospital, where I stayed for about a year.
What schizoaffective disorder feels like:
When not on any antipsychotic medications, I feel like; others could hear my thoughts (broadcasting), that I could hear other people’s thoughts (mind reading), that I could communicate by thought with others without speaking a word (telepathic communication), not only could I communicate with other people in this way but I could communicate with other things as if they had human like qualities (anthropomorphic telepathic communication), believing that I am super important to the world (grandiose thinking), that others were out to kill me (paranoia), and I would become very delusional. But, now after taking the antipsychotic medications for some time, not only do I not believe that these things (powers) were never true for me, I also believe that no one else has these powers. Maybe some people may have others out to kill them, but this is not true for me. Also, for over 35 years (1977 – 2013) I believed that God would talk to me personally and would give me personal instructions, but now, I don’t believe this is/was ever true.
On top of having psychotic episodes, my mood has fluctuated from being euphoria, extremely joyful, super happy, with very little sleep, feeling like I didn’t need to sleep, etc. to suicidal lows, dysphoria, deep dark depression, and sleeping a lot with not being able to get out of bed, etc. My mood swings greatly in duration and intensity for reasons I am not fully aware of.
My quality of sleep is very poor. When I lay down in bed to go to sleep, my body/mind tortures me so much that if I haven’t gone to sleep within about five minutes I get up out of bed to relieve the torture like sensations. The torture sensations might be; restless legs, a general restlessness of my body or mind, a sensation in the back of my throat, an itch, or any thing that my mind can not stop focusing on. Once I have gone to sleep, I only sleep for about an hour before I awake. Once awake I go through all of the problems of falling back to sleep again. The sleep I do get is not refreshing. My mood and sleep go hand in hand, when my sleep is bad, my mood swings are bad and when my mood swings are bad, my sleep is bad and vise-a-versa. I have had a recent improvement my mood/sleep problem. It may be due to my new medication, Latuda that I am taking. Only time will tell if Latuda will continue to help.
What happened when I tried to stop taking my meds:
I stopped taking all my medications because I wanted to see if they were doing anything for me. Everyone told me that this was a bad idea, but I did it anyways.
As time progressed I could tell that my wife, Audrey, wanted to confess something to me, but was scared that I would not be able to handle it. I could also tell that Audrey talked to my counselor about this, and that my counselor agreed with her not to tell me. They were keeping something a secret from me. We danced around the issue, as if there was a white elephant in the room that no one was willing to talk about.
I figured that Audrey was having an affair with the senior pastor of a local mega church that she belongs to. It appeared to me that Audrey was willing to break off the affair and go public with it, but the pastor was not. To keep it from going public, I figured that the pastor hired a hit man to kill me. The more I thought about it, the more I was sure of it.
One day after Audrey left for work, I panicked. I started running. The first thing I did was try to get a hotel room without showing ID. However, all the hotels that I tried required ID. The way the hotel staff acted made me all the more sure that the pastor was getting help in finding where I was. At this point, I went into a Jack in the Box to get something to eat, and I could tell by the way people were acting that they had received the reverse 911 call on me. I figured the senior pastor that was having an affair with my wife knew that I knew about the affair and that I was running, so he convinced the police that I was either a danger to myself or to others, and that they should put out a reverse 911 call to find me.
I quickly left the Jack in the Box and got back in my car. I drove to a Rite Aid store and bought some bottled water, because I was planning to hide in the desert. The employees at the Rite Aid seemed to be acting strange around me, as if they, too, received the reverse 911 call on me. I quickly got in my car and drove into the desert, trying to find a safe place, but I saw a helicopter in the distance, and I knew I was not safe there either. I got on the freeway and headed north.
I had not been sleeping well for weeks and was getting very tired. Having a bottle of 200-milligram caffeine tablets with me, I took one. It helped only a little. I was also taking them to help me feel better, and I already had a lot of caffeine in my system. After driving for about fifteen minutes, I felt sleepy again, so I took another caffeine tablet. This sequence of events continued. I was taking a caffeine tablet about every five to fifteen minutes.
After driving for about two hours, I was scared that I might be a danger to myself or, worse, to someone else, because I could easy fall asleep behind the wheel. I pulled off the freeway into the parking lot of an old run down hotel. I figured that these people would be willing to hide me.
I booked a room, even though I had to show my ID. They too appeared to be acting strange. I figured that my picture must be on TV, so that people could be on the lookout for me. Everywhere I went people were looking at me funny. At the hotel I tried to lie down on the bed to get some rest, but I could not rest. I was wired. I got back in my car and drove north again.
After driving for about another hour, I came to the conclusion that I could not hide, and that they would eventually find me and kill me no matter where I went, so I stopped running. I called Audrey and told her I was coming home. Still very tired, I got back in my car and took another caffeine tablet or two.
I do not remember if my son called me or if I called him, but my son and I talked. I told him that I thought his mother was having an affair. Talking to him did help me stay awake while driving. After talking to my son, I called a friend to have him talk to me to help me stay awake. I was still taking a caffeine tablet about every five to fifteen minutes.
Half a bottle of caffeine tablets later, and with the help of everyone, I finally made it home that night. My wife and I got ready for bed, but I could not get any rest.
I got up and started playing on my computer. This was no help, for I started to worry about the Internet crashing, which would cause havoc to our society. Not only was I worried that the Internet could fail, but I believed that I could make it crash, if I wished. This really bothered me a lot.
The way I figured it was, if I did not make it crash, myself, it would someday crash by itself. The more I thought about this, the more I was sure of it. The problem was that if it crashed later we would be worse off and our society would not be able to recover.
I figured that the Internet could not handle human emotions, so I decide to make it crash that night by causing it to be jealous of my other computer—that was not connected to the Internet. I told my computer that was connected to the internet, that I loved my other computer more.
In the morning, Audrey took me to the emergency room at a hospital where there was a behavioral health unit.
Now, I was really afraid of just about everything and everybody. I thought that the internet was out to get me. I believed that the FBI, CIA, and Homeland Security were called in because I was viewed as a national threat. I also believed that the hospital needed time to get agents into the locked ward to act as patients.
After spending most of the day in the emergency room, I was all the more sure that these things were true. I thought they would put me in the behavioral health locked ward, but they did not. Instead, they put me on the surgical floor.
Now, I really believed something was up. Why would they do that? This scared me even more.
On the surgical floor, they had a nurse sit by my bed. I thought she was working for the government to find out if I was a national threat or not. I told her everything about my relationship with my computers and how I caused the Internet to crash. At this point, I thought the Internet had already crashed and it was all over the news, because the hospital staff would not let me watch TV.
To make matters worse, I was craving sex, badly. I was hoping the nurse would be willing to do something with me, if Audrey gave her okay. It seemed to me that Audrey did not want to have sex with me, and she might be willing to let me play with someone else. So, if she was willing, I was willing. But this never happened.
I was scared out of my wits. I wanted the hospital staff to put me in lock-up. Believe it or not, I felt more comfortable in the lock-up ward than I did on the surgical floor.
Later they put me in the mental health lock ward and placed me on a three-day hold, and then on a two-week hold. They stated that I overdosed on caffeine, that I was a danger to myself and others, and that I could not care for myself.
At first I refused to take the medication they wanted me to take, but later I did take it and I got better.
Now I can see that I was very delusional.
Where I’m at today:
My life has been full of ups and downs, twists and turns, which have taught me an important fact, keep the main thing the main thing, which is to love God with everything I got by loving others as I would have them love me with forgiveness, compassion, endurance, patience, mercy, grace, charity, tenderness, strength, wisdom, kindness, and with all that causes good to happen. The way I see God is He is more of a Spirit than a being, like Santa Clause is more of the spirit of giving at Christmas time than a actual being. Different psychiatrists have given me different diagnoses and prescribed different medications at different times in my life. When I am not suffering with my symptoms of mental illness, I enjoy working with my robot, studying and doing math, writing books, writing computer programs, and thinking about God stuff. If you have any questions either about myself or my fight with this illness, please ask me.
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7 thoughts on ““In my own words” – PatientsLikeMe member Edward shares about living with schizoaffective disorder”
Edward, I wonder if you might have genetic methylation defects, and certain exposures to heavy metals and toxins that are triggering and fueling these symptoms. You might want to see a functional medicine physician, and biologic dentist, for screening to see if your genetics makes it harder to excrete toxins so things like mercury off-gassing from dental amalgam fillings bioaccumulate and stay tightly bound up in your cells, leading to damaging levels over time.
Dental amalgam is now proven to cause neurobehavioral deficits and kidney changes in boys with four gene types (James S Woods et al, various articles 2011-2015 in PubMed), there are occupational studies showing harm and risk to genetically susceptible dentists (Duplinksy and Cicchetti 2012), and more studies of correlations between amalgam and a host of autoimmune, cardiovascular, dermatological, neurological and psychiatric diseases (Kristin Homme et al 2014 in PubMed). The FDA is slow to catch on and catch up, not responding appropriately to lawsuits by expert product panel members and ill and injured patient groups who oppose its continued use. The ADA defends it, and held patents on it.
Genetic variation influences tolerance vs. toxicity to toxins, and also the micronutrients our bodies and brains need for healthy functioning. Today the American Psychiatric Association is having its first three-hour symposium, “Mineral-Vitamin Combinations as Primary Treatment of Psychiatric Symptoms” at the American Psychiatric Association annual meeting in Toronto, Canada on May 20. This kind of symposium at American Psychiatric Association annual meetings is “intended to highlight important new advances occurring in the field of psychiatry…”
“Expert presenters include independent clinicians and researchers from top universities (Harvard University, The University of Canterbury (New Zealand), The University of Calgary, and Ohio State University)…”
“This event reflects the increasing level of legitimacy we’ve witnessed in the field of nutritional psychiatry over the past few years. Many psychiatrists now use our specialized nutritional formulas as a first-line treatment for mood, anxiety, and behavioral disorders because they are more effective and much better tolerated than psychiatric medications.”” Source: http://www.hardynutritionals.com/blog/2015/05/american-psychiatric-association-symposium-feature-micronutrient-treatments/
It may be helpful to work with a functional medicine physician, biologic dentist (who tests for biocompatibility of dental materials for the individual, and invests in special training and equipment beyond a dental dam to remove it safely when indicated), and a psychiatrist who is learning about nutritional approaches to optimize brain health.
I wish I had know this before my schizophrenic sister in law died far too young of an enlarged heart, another potential indicator of heavy metals toxicity.
Very interesting comment. As a child I use to play with mercury. I even remember putting mercury in my month when I was a kid. What do you think? It sounds like you know a lot more than I do. How would one know if my symptoms are caused by this.
Not only do I remember playing with mercy I also worked with lead. Being in electronic, we used these heavy metals a lot.
Thanks so much for your candid and detailed story of what it’s like living with schizophrenia. I have lived with a few close friends with the illness and have written a memoir of my time with them, not yet published. Fantastic to hear how similar your experiences have been!
I am so glad I stumbled upon this. I can’t believe there is SO MUCH legitimacy behind micronutrient treatments (like Hardy Nutritionals) and yet we never hear about it. I wonder why that is? It really is refreshing that the american psychiatry association decided to highlight micronutrient treatments. we need more of this.
On patientslikeme.com my ID is God’s Worshipper.
I changed my ID on PatientsLikeMe.com from God’s Worshipper to TheWorshipper.
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