Hi everyone, my name is Tom. To start with, I’m not even sure if I’m posting this in the right forum; this is also my first time talking to other people with schizophrenia. I just wanted to release this out into cyberspace and see if someone else will read it and appreciate the wild odyssey I’ve been on for years. So here’s my story, distilled.
When I was 17 (now 32), I fell into a steadily worsening depression. I also began creating fantasies in my head that I could escape to in order to cope with reality. I loved to write creatively, so using my imagination to this end didn’t strike me as a sign of mental illness.
My senior year of high school, my personality began to distort. I would make jokes with friends about our teachers, would imagine people I saw dancing naked, and had several instances where I laughed uncontrollably and had to leave class and stay in the bathroom until I could regain control of myself.
The summer after I graduated, I became acutely suicidal and began to suffer from anxiety and panic attacks. I started hearing the elf princess from the Lord of the Rings in my head, seducing me to commit suicide so that I could escape to her realm. Eventually the suicidal compulsions became uncontrollable, and I attempted. Luckily, my dad found me and took me to the hospital.
I was transferred to a psychiatric hospital and diagnosed with major depression with psychotic features. The psychiatrist at the hospital started me on a mood stabilizer and anti-depressant. Over the next year I recovered, but felt like my personality remained altered and my creativity had ceased.
As I began my first year of college, I felt my mind slowly detaching from reality. I thought the medications I was on were making me sedated, so I stopped them and broke off with the psychiatrist. Somehow I made it through that school year, but that summer I moved back in with my dad and ceased to function. I also had a range of physical sensations along with deteriorating mental capacity, and became convinced that I was suffering from a mysterious physical disease.
I went to doctor after doctor, and had countless tests performed which all came back normal. I began to investigate alternative medicine, and diagnosed myself as having intestinal fungal overgrowth (which doesn’t actually occur unless you are severely immunocompromised) . Over the next 11 years over my life, I trialed countless remedies to cure myself of the illness, alternatively believing that my dad’s house was contaminated with black mold or mildew, or that certain foods were disrupting my microbiome and leading to my mental confusion.
My dad, who suffered a frontal-lobe brain injury years prior, never pushed me to get a job, and mostly left me to my own devices. Over the years, I would have periods of almost remission where I would cease to have physical symptoms but would have lingering brain fog, and periods of intense and persistent hallucinations which to me felt like being stuck in a waking dream. I would have conversations with different people in my head, and would listen to them talking with one another, but became so accustomed to it that I never realized I was stuck in a psychosis. To make matters worse, I was diagnosed with schizophrenia by both a psychiatrist and a therapist, but I refused to accept the diagnosis and my dad never forced me to take medication for it.
Flash forward to last August, when I had my first full-blown psychotic episode. I was hospitalized and started on Haldol, which made me incredibly sedated, and then switched to Seroquel, after which I began to substantially improve.
Over the next few months, I was able to travel and resume many activities, but (as I can see now) my mind didn’t fully return. I enjoyed having fun but had no interest in making new friends or thinking about my plans for the future.
Starting two months ago, the physical sensations began to re-manifest. At first I suspected that the Seroquel had elevated my blood sugar, and eventually deluded myself that it had lowered my white blood cell count and that I would have to cease taking it.
After four days off the medicine, I spiraled into a much more severe psychotic episode and was hospitalized. The severity of the psychosis forced the psychiatrist to continually increase my dosage to 600 mg, which I am now on. Within three days, the voices and hallucinations stopped, but something far more dramatic began to happen. All at once, my long-term memories began to rush back in, and I spontaneously found myself thinking and planning about the future and remembering my old personality. My creativity and writer’s voice returned, along with my vocabulary and imagination.
I am now less than a week out of the hospital, but I continue to feel dramatic improvements daily. It’s as if this higher dose has finally reawakened my mind, and I’m now able to process everything that has happened and start to think about where I want to go from here. The hospital psychiatrist told me that he’d only seen a handful of cases where the patient responded so rapidly to the dosage increase, and that it is a good sign that I will have a substantial recovery over the next months.
For the first time in 14 years, I can feel my old mind steadily returning. I’m now faced with all of the horrific memories of those years of being un-medicated, and am trying to figure out what that experience will mean to my life moving forward.
Posting here, along with going a local support group for people with schizophrenia is my first step. I know I still have a long way to go in my recovery, but I am very optimistic that my progress will steadily continue.
Thanks for reading this long vent. I’d appreciate hearing other members’ perspectives, and I look forward to participating more in the forum and getting to know everyone here. Take care,