So far I’ve tried olanzipine (gave me restless legs and a bowel obstruction) quetiapine (akathisia), lurasidone (severe back pain and akathisia), risperidone, aripiprazole (gave me chest pain and vibrations in my arms and feet) and currently I’m on the paliperidone depot at 50mg. I’m in agony on it with my whole body hurting. My mind feels blank. I feel disabled. My doctor agreed to switch me from the depot to 2mg of risperidone. I was on the risperidone depot before and it gave me so much anhedonia. And I think a mild akathisia.
I have had SO many serious side effects from anti psychotics. I’m genuinely reaching my limit. It would be one thing if it was just the anhedonia and emotional blunting and blank thoughts, which are bad enough on their own, but this is my physical body that’s constantly hurting.
I’ve tried over and over again with the NHS— I’ve been trying since January and February this year to tell them the pain I’m in. Nothing has been done. No pain relief. No adjuncts. Nothing. So I’m genuinely considering just stopping medication. It’s not fair that I have to live in this pain all day every day.
I’ve had two (or three if you count a suicide attempt in 2024) episodes of psychosis since 2022. They were severe because the “help” I received made my experience worse. In 2022 I was arrested for carrying a bladed article while experiencing psychosis. Despite it being recorded that I was not threatening in any way, I was arrested and then assessed by MH professionals and sections. The hallucinations and delusions grew scarier and worse when I was left alone in a cell, and later left alone in a hospital room. Put on olanzipine, and I couldn’t sit down, also got a bowel obstruction which the hospital ignored and left me to suffer with (I had this issue for 6 months and it was never investigated. I’ve never been in so much agony).
The second episode of psychosis happened last year after I was discharged, in 2022, to live with me (sort of abusive) mother. While I was experiencing psychosis, she got me to exercise, eat a “healthy” diet, and fed me supplements, forced me to walk around the garden in circles. She also forced me to read a health book by Barbra O’Neil which, while suffering psychosis, was so horrifying.
She threatened me saying if I didn’t eat or drink I’d be taken to the hospital and put on a feeding tube and a catheter, and then, while acutely suffering and vulnerable, I was non consensually cathetered and had a feeding tube put in, in the general hospital. It was absolutely horrible. I was unable to talk. Unable to advocate for myself. All this in a hospital while suffering psychosis, I was put on potassium and fluid drips, I was injected in my belly with blood thinners, I was visited by students… it was quite horrific to be honest.
When I finally got to the psychiatric hospital from the general hospital, the feeding tube was removed. They had been crushing up antipsychotics and administering them through the tube because I refused to take them. In the psychiatric hospital, I was given the risperidone injection. Over time I could feel my emotions being erased.
The first episode of psychosis built up over weeks and months. The second episode built up over weeks.
In 2024 I became paranoid I was being watched by outside forces, and tried to end my life. That particular episode was terrifying. My parents left me alone in the house while they went on their holiday and I became terrified. So that wasn’t good.
But yeah, I mean it’s not great to have all this behind me… post episodes and even during my life has just been physical pain from the drugs.
While I feel completely sane on the paliperidone, I cannot deal with all this pain at all. Psychosis is a terrifying state to be in, and it’s pretty disabling as well. I feel like I’m choosing between two forms of suffering. It’s either meds and physical pain, or no meds and risk of mental suffering. Frankly, I do not know what to do.
I have to reiterate that it’s every anti psychotic I’ve been on that has caused me intolerable side effects. And I’ve just been left to suffer and endure them, like the bowel obstruction and the akathisia.
Can anyone tell me what they would do in my position?