u/J_nelle

My psychiatrist said I have the most atypical form of bipolar and schizophrenia she had ever seen. She had never met anyone like me but a handful of cases have been documented apparently.

I come off as totally normal. I function normally. I parent 2 toddlers and a baby decently well. I can take care of myself. I’ve lived 20 years unmedicated since my symptoms came on and managed to mask it.

However, I have near constant visual hallucinations and distortions. Some auditory hallucinations. I’ve had delusions but rarely acted on them. Several instances of very vivid, interactive, narrative based hallucinations. I experienced psychosis in childhood in my early teens but I learned to control in through reality checking and just adapted.

My bipolar used to be a lot worse. I’d get manic and post nudes online or steal things. Now I just control it and I’m aware that I’m manic. I push through the depression with routine and fitness. The sleep issues still wreck me though but I could always mask it.

She said the prevalence in my family and constant distortions suggest a neurological component. My “reality filter” in my brain is abnormal.

I’ve had issues since I was a toddler but I got a lot better through my teen years and now I’m a very self-aware adult. Apparently, too self-aware to match the “presentation”.

She was actually in disbelief that I had symptoms that extreme but managed to go to school everyday, have friends, good grades, etc without medication or therapy.

She said it’s a very rare atypical schizoaffective condition but she doesn’t even know if she wants to formally give me that label based on my presentation. She’s still working on the best way to describe my experiences on paper.

I’m also autistic so maybe that changes presentation?

I’ve been prescribed a low dose of Abilify.

I’m curious if anyone else can relate?

Edit:
I remember meeting with my husband’s schizophrenic cousin. We had exactly the same experiences of seeing shadow men watching us through the windows. The difference was I’d point it out to people rather matter-of-factly. I’d feel paranoia but kept it internal. He would run out into the yard, start punching bushes thinking he was fighting them, stay up all night with flashlights trying to catch them.

He’d end up in psych ward while I didn’t. Same experience, different reaction.

I haven’t started medication yet. I’m not 100% sure I want to risk it.

Medication didn’t work for any of my family members on the schizophrenia spectrum.

My grandmother ended up with tardive dyskinesia and early onset dementia. Still regularly went into psychosis so they just ended up give her ECT. She lost her ability to read and much of her memory.

I took an extremely low dose of sertraline (10 mg) and on day 4 was sent into full blown akathisia.

Akathisia was worse than any psychotic episode I have ever had!!!

The mental health system in New Zealand is so shit that they had a social worker monitoring my drug reactions and telling me what to do. I freaked out and went to ER thinking I was literally dying and they were no help at all, just saying it was “anxiety” and “ssris don’t do this to people.”

I had to fight pretty hard to get back in contact with a psychiatrist who then confirmed that it was akathisia and prescribed me a beta blocker to treat it. I’m still not 100% and this happened 6 months ago.

I know antipsychotics are farrrr more likely to cause akathisia and just worse side effects in general. I also don’t think I’d be able to deal with the weight gain.

I do see a psychologist weekly. She said my reality checking ability has gotten very good over the years. Yeah I’ll probably have to suffer quite a bit compared to people where medication works for them.

I don’t consider myself dangerous. It was different when I was younger but I’ve grown a lot since then! Most of my delusions involve thinking there’s an entity/intruder in my home. I’ll get the paranoia followed by foot steps, hearing things thrown around my house, whispers, and shadow figures.

I know the general advice is “just try around and see what works” but that seems dangerous and terrifying…

I’m still thinking it all through! Need some advice!

Edit: I have several gene mutations that make me a poor metaboliser as well as Elhers-Danlos syndrome which alters drug metabolism too.

Soooo… I had psychotic symptoms very young. My mother noted a drastic change in my behaviour around age 3. I became extremely withdrawn, anxious, clingy, and unhappy out of nowhere.

The first hallucination I remember was a tall dark figure with red eyes who would taunt me. I remember my mom standing next to it and it saying “your mother can’t save you.” It had this deep demonic voice.

I remember interacting the curtains. The stripes on them would start wiggling and moving. It would do shadow puppets to me and whisper to me. Toys coming to life, talking, or warping in front of me.

The worst was when I was 6. I had this reoccurring hallucination of this omnipresent cat who said he would murder my parents if I ever told anyone about him. He would wait for me in this tree on the trail I’d walk through on my way to school. Just sitting up there either taunting me or watching me.

This happened after watching Alice in Wonderland.

I also started getting the mood symptoms around the age of 6. As a toddler, I sometimes would just stop sleeping for weeks and seem unaffected despite getting 2-4 hours of sleep

I remember at one point thinking over telling my mom about the cat. As I walked over to her, one of my finger paintings on the wall started glitching like static before manifesting into the cat’s form. Then I heard its voice: “remember what I told you would happen.”

So I did whatever this cat would tell me. He got me to run away from school to meet him once. My parents found me under his tree waiting for him. I had to make up some excuse. After that he was gone. Only then did I feel comfortable to tell my parents.

When I was 7, I didn’t stand anywhere without a roof for months because I believed having something over my head would stop the aliens from getting me.

This was caused by playing Lego Star Wars on the Wii

When I was 9, I was terrified of turning into a werewolf to the point of having a severe behavioural symptoms. My vision even went black and white (like how dogs see). I’d hide away on the full moon, when I looked in the mirror my eyes would be yellow and glowing.

This was caused by a werewolf show on Disney Channel.

For some context: my grandmother has schizoaffective which was unmanageable even with medication. My father also had clear signs but remained undiagnosed.

No matter what crazy shit I told my parents or did they wouldn’t get me help. I was called “quirky”, “gifted”, “anxious”. I kept getting good grades despite my symptoms which seemed to be the only thing anyone cared about.

My dad went as far as convincing everyone I was actually a psychic and told me everything I was seeing was the result of demonic possession!!! I can forgive him considering he was likely afflicted by the same mental illness but it’s so hard to forgive my mom.

Later, I was told “oh we always knew you were bipolar and autistic… we just didn’t want anyone to think you were the weird kid with issues.” They thought I’d get bullied and that my future was at risk.

EXCUSE ME WHAT???

I was sent to school in active psychosis!

My life from age 3-23 has been a living hell. So I was just running around school hallucinating, scaring other kids, and manic out of mind a lot of the time.

Just wtf…