Symptoms: Akathisia, brain zaps, emotional blunting, sexual dysfunction, cognitive impairment, insomnia, depersonalization/derealization, suicidal ideation, neuropathy, severe anxiety/panic, muscle/joint pain, dyskinesia, GI disturbances
There is no simple way to tell this story.
It is not clinical. It is not neat. It is not something that fits easily into medical categories or tidy conclusions.
It is the story of my daughter, Justine, my "Monkey," and the long, painful medical journey that took years to understand.
And it is also my story as her mother.
Because I have lived every part of it with her.
Where It Began
It started years ago with a diagnosis of bipolar disorder.
At the time, it felt like an explanation, a way to make sense of emotional instability that neither of us fully understood. She was started on mood stabilizers, antipsychotics, and anti-anxiety medication.
But instead of things improving, they became more complicated.
When she didn't respond as expected, the diagnosis changed to schizoaffective disorder.
And with that change came stronger medication, more urgency, and more certainty from the medical system that we were dealing with something severe and entrenched.
But my daughter was not getting better.
She was becoming less like herself.
The Shift to Neurology
Then came the seizure-like episodes.
They were frightening, unpredictable, and deeply distressing. The diagnosis shifted again, this time to refractory epilepsy, meaning seizures that were resistant to treatment.
From that moment, everything escalated.
She was placed on multiple anti-epileptic medications, often in combination, alongside psychiatric drugs: mood stabilizers, antipsychotics, antidepressants, benzodiazepines, sedatives, sleep medication, anti-epileptic medications (sometimes more than one at a time), emergency PRN medications for agitation or seizures, and medication to manage side effects of other medication.
Her body became a system under constant chemical correction.
Every symptom was treated as proof that more intervention was needed.
But nothing was improving.
She was getting worse.
Years of Electroconvulsive Therapy (ECT)
During this period of severe psychiatric treatment, she also underwent electroconvulsive therapy (ECT) over several years.
This part of her journey had a profound impact.
After ECT, she experienced severe memory loss, gaps in autobiographical memory, cognitive disruption, emotional blunting, confusion and disorientation, increased anxiety and fear, and a deep and lasting sense of disconnection from herself.
For someone with a PhD in Physics, whose mind was built on logic, structure, and complex reasoning, the change was devastating to witness.
She went from a brilliant scientific thinker, someone capable of advanced mathematics and abstract theory, to struggling with basic Grade 10-level concepts.
Not because her intelligence was gone.
But because her brain was overwhelmed, altered, and suppressed.
The Hidden Cost of Treatment
As time went on, she developed severe side effects that were repeatedly interpreted as illness progression rather than medication harm: akathisia (unbearable inner restlessness), severe anxiety and panic, emotional instability, cognitive slowing and fog, sleep disruption, confusion resembling psychosis, physical exhaustion, and worsening seizure-like episodes.
It became a cycle: symptoms led to more medication. More medication created more symptoms. And those symptoms were then used to justify even more treatment.
The Truth We Finally Found
Eventually, after years of decline, something changed.
Someone looked deeper.
Someone questioned the entire picture.
And the truth began to emerge.
Justine never had epilepsy.
Her seizures were psychogenic seizures, real, physical, and frightening, but not caused by electrical epilepsy.
They were the body's response to overwhelming neurological and psychological stress.
And many of the psychiatric symptoms that led to diagnoses like bipolar disorder and schizoaffective disorder were not separate illnesses. They were deeply influenced by medication effects and misinterpretation of those effects.
What we were treating was not a clear, singular disease.
It was a cascade of overlapping misdiagnoses, medication reactions, and escalating interventions.
The Slow Road Back
When medication reductions began, slowly, carefully, and under supervision, things started to change.
Not overnight. Not dramatically.
But gradually, undeniably: the akathisia began to ease, the mental fog started lifting, her emotions returned in a more natural way, her thinking became clearer, the seizure frequency reduced, and her sense of identity began to re-emerge.
And I started to see my daughter again.
Not the version shaped by labels and medications.
But the woman she has always been underneath it all.
A physicist. A thinker. A deeply intelligent, sensitive human being.
Distance, But Not Separation
We now live 1,200 km apart.
That distance is something I still feel every day.
But we speak every single day, messages, calls, voice notes, check-ins. Sometimes deep conversations. Sometimes just "I'm okay."
It is how we stay connected. How we stay grounded. How we keep rebuilding what was shaken.
Where We Are Now
I won't pretend there hasn't been damage.
There has.
Some of it is still healing. Some of it we are still learning to live with.
But there is also something I was afraid we might never have again: progress.
She is healing now. Slowly. Carefully. Realistically.
And I am watching her come back to herself, piece by piece, thought by thought, day by day.
Final Thoughts
This is not a perfect story.
It is not a clean recovery story.
It is not a story with easy answers.
It is messy. Painful. Complicated.
But it is real.
And most importantly: it is still unfolding.
And in that unfolding, there is something we didn't have for a very long time.
Hope.