Before Surgery 2009
My MRI
Before Surgery 2010
After Surgery – July 2011
Big gaping hole after surgery
Tasty Brainz

My brain. The facts.

I was born in 1982 and it was a difficult labour lasting 36 hours, while my mother was ignored and eventually she had a c-section.

My parents and I theorise that my benign brain abnormality began here and grew over time.

In 1987-ish, when I was five, I was admitted to Bega Hospital.

I don’t remember it. We’re not sure if it was meningitis.

In April 2000, I had a single episode of right arm paralysis that lasted three hours.

A mass was found near the frontal horn of the left ventricle and misdiagnosed as a harmless 1cm cavernous haemangioma (a birthmark on the brain).

In October 2008, I tried skydiving and landed with idiosyncratic bleeding behind my knee.

In August 2009, I began to have multiple episodes of paralysis in varied degrees of severity and I could no longer work or even take care of myself.

For years, I continued to be passed back and forth between neurologists and psychiatrists.

In late 2009 I was voluntarily admitted to New Farm, QLD Psychiatric clinic.

Early on I gave my permission for a psychiatrist to try intensive therapy solve my “episodes”. I stayed over a month and left for Christmas.

In late 2010, I was voluntarily admitted to Bega Psychiatric Unit

in the months before surgery. My symptoms had become much worse. I felt my parents needed a respite from me, but I still needed to have 24-hour monitoring. The only problem with this plan was that my parents chose to drive 30 minutes every day to visit me.

In April 2011, I underwent elective brain surgery to remove the mass.

The mass removed was actually a 2cm arterio-venous malformation (AVM) with evidence of haemorrhage and degenerative changes including fibrosis (scaring) and calcifications (bone). This was a much worse diagnosis of for the mass in my brain.

In late 2016, I underwent an overnight Video EEG.

This is the gold standard in detection of epilepsy. I do not have epilepsy. The seizures I have are non-epileptic in origin. This does not exclude organic origins such as from an AVM, but the main implication of non-epileptic seizures are psychiatric.


So what was actually happening?

Before the surgery, my symptoms were slightly different. Instant paralysis. No warning. I usually had just enough control to shift my weight in one direction or another to avoid falling on something sharp and pointy or perhaps I could rely on gravity.

Even now, I have what I’ve dubbed “cycles”. This is not the same as the medical term “kindling” which is slightly similar. My cycles occur over the span of a few hours, They involve having a seizure then paralysis, then a seizure, then paralysis, etc. After each seizure, the paralysis would become worse, more encompassing, more debilitating and longer lasting.

During paralysis, I was not susceptible to any of my very-specific triggers (extremes in hot and cold, motion and high-pitched noise). But after each seizure, my tolerance to the next trigger or would decrease significantly.

  • Seizure/paralysis cycles would last up to 9 hours
  • I would lose the ability to speak for up to 3 days, I would communicate with my eyes until the paralysis abated and then I would use my computer to talk.
  • When I could finally move but remain unable to speak, I could sign my name, type my name, but I could not write my name.

Heat

August 2009

Motion

December 2009

Soon after a flight home from Brisbane where a vein behind my leg burst.

Cold

Winter 2010

Probably began at the same time as the heat trigger. Australia just isn’t a cold place. 

Noise

Late 2010

Last to appear and the most troublesome.

This progression is likely, in my opinion, due to the growth of the AVM
No new triggers have developed since my brain surgery.

primary auditory area
broca motor speech area

motor and sensory cortex
frontal and temporal lobes

There are certain luxuries you might take for granted that I have to concern myself with to the point of an obsessive compulsive disorder or severe anxiety. Except… you know… I have pretty good reasons.

Not everything on this list will trigger an instant episode. Cannabis oil (CBD only) has had a significant effect on my tolerance. Lately, triggers are just painful, like being stabbed in the brain. Plus I can endure most triggers if they are one-offs. However, if the the trigger persists for over 10-15 minutes… like going to a movie to see the Avengers… then I start to have problems. That’s where valium is useful.

Most natural sounds have never been a problem, birds chirping, dogs barking, people talking, babies screaming, even an acoustic guitar (without an amp). Low-pitch sounds have never been a problem.

Extremes in Hot and Cold

  • In winter, I constantly run heaters on a set thermostat.
  • I have to be careful wearing scarves and beanies.
  • In summer, I constantly run my air-conditioner to keep my house a certain temperature.
  • My hair has to be kept short and off the back of my neck
  • Exercise quickly raises my temperature.
  • The earplugs I wear to protect against high-pitched noises also affect the heat trigger
  • No long hot showers
    • I have handles in my shower, a chair and the edge of my bath tub is surrounded by a pool noodle.
  • Long hot baths have the potential to be lethal
    • Especially when combined with a high-pitched noise trigger

Motion

  • Rollercoasters
  • Bungee jumping
  • Skydiving
    • Pretty sure this is what got me into trouble in the first place.
  • Standing up / sitting down too quickly
  • Long distances in cars
    • sharp corners
    • steep hills
    • mountains
    • it’s worse on buses
  • Spinning around on the spot (ie: dancing)
  • Elevators
  • Flying in planes
  • Waves while on a boat

High-pitched Noises

  • Vacuum cleaners
  • Lawn mowers
  • Whippersnippers
  • Woodchippers
  • Chainsaws
  • Sirens
  • Car alarms
  • Car horns
  • Planes flying overhead
  • Helicopters
  • Motorbikes
  • Those little welcome bells when you walk in the door or the ones on the counter.
  • Squeaky door hinges or handles
    • WD40 is my friend
  • That friction sound from sneakers on wood surfaces.
  • The dings in elevators
  • The dings on microwaves
  • The dings on oven timers
  • The dings on air-conditioners
  • The dings on ATM’s
  • The dings on poker machines
  • The dings on everything
    • Nothing in my house beeps. I’ve voided all my warranties

…continued

  • The hums of fridges
    • Mine lives in the laundry
  • Cutlery or ceramic mugs/plates clinking (cheers!)
    • I use plastic plates, bowls and wine glasses
  • Mobile phone ringtones
  • Live bands
  • Piano
  • Mood music in elevators
  • Unequalised sound such as music, tv, computer or even my phone
    • My TV runs through a physical hardware 7-band equaliser
    • I use software equalisers on my phone and laptop
  • Coil whine on TV’s that need repairing
  • The reversing beeps on heavy machinery
    • although they’ve started using duck noises
  • The beeps in new cars
    • if you’re reversing
    • if your seatbelt is undone
    • if you’ve left the headlights on
    • if you’ve turned it on and it’s just so happy to see you!

Other symptoms include:

  • Post-ictal chills
  • post episode headaches
  • exhaustion, worse after an episode
  • dizziness on standing quickly
  • confusion
  • short-term memory loss
  • difficulty reading
  • right sided weakness
  • impaired gait. I’ll walk in a clockwise direction after trigger exposure
  • In aura
    • nauseous, almost like sea-sickness
    • dizzy
    • wandering eye focus
    • yawning
    • slight right arm pain and muscle stiffness

Environmental factors that reduce my tolerance:

  • My menstural cycle
    • I can tell when my period is coming, because my tolerance completely bottoms out a couple of days before
  • Messing with my hormones, such as the pill or other contraceptives
  • low blood sugar from missing meals
  • lack of sleep
  • forgetting medications
  • past seizures
  • past trigger exposure
  • the time of day. My tolerance is higher in the mornings.

My symptoms are getting better every year.

  • There is no extreme pain from contracting muscles in the ictal phase
  • The paralysis is much shorter (20 min)
  • I have a warning now (an aura) at least 3-5 minutes
  • I can talk during the first few cycles.
  • There is no paralysis after the first cycle
  • Before the surgery, I never had convulsions, after the surgery I had convulsions for seven years, now, no convulsions again.
  • I have a much higher tolerance. Much higher
  • One-off triggers are often just painful, like being stabbed in the brain.
  • I can endure a persistent trigger for 10-15 minutes before having problems.

So what does Amanda think it is?

It’s NOT epilepsy. That has been definitively ruled out through an overnight EEG concluding that the seizures are non-epileptic in nature. Besides, epilepsy envelopes the entire brain. My issues are more focal. For a long time, I thought “it MUST be epilepsy, nothing else fits”

I’ve had friends and family suggest hemiplegic migraines, blood pressure abnormailites, poor diet and exercise, high levels of copper, and more.

I believe the problem must be caused by the AVM – but not as a form of epilepsy, as I had initially thought. Unfortunately, non-epileptic seizures have psychological connotations.

I do not agree with a psychiatric reason for my paralysis or that the misdiagnosed AVM in my brain could purely be a coincidence. This disagreement with my psychiatric diagnosis is further evidence of psychiatric illness. Catch 22. Plus… I’ve had stays in psychiatric clinics and without context, those visits look pretty damning. Plus, writing all this down is pretty obsessive… or thorougah…

Due to its proximity to the left ventricle, a CSF abnormality could possibly be the culprit for everything. There are even visible channels, that my Dad found in the MRI’s before the surgery, between the AVM and the ventricle. This was before we even knew it was an AVM.

Can you see the channels?

Somedays, I believe it must be psychological. If everyone says it, then it must be true. There is compelling evidence towards that theory. I’m pedantic and anxious. I’m receiving monetary gain for my illness. Maybe I like the attention, except the majority of problems happen at home, but I tell people about them afterwards. What if I’m sub-consciously making it all up?

Then on other days, I’m adamant that the AVM is the problem, and its removal is responsible for me gradually get better.

This is known as cognitive dissonance – where a person believes in two mutually exclusive and contradictory theories at the same time. THAT is driving me nuts.

Which is it? Why should I care? Does it matter? Should I get on with my life? Which box do I check? What is my diagnosis? Isn’t “non-epileptic seizures” a symptom? What if I am faking? Wouldn’t that be a disservice and insult to those actually suffering paralysis? Shouldn’t I feel grateful that my paralysis is temporary? Arn’t I lucky there are meds I can take to prevent paralysis?

I can’t help thinking that way. I have two options to solve this moral dilemma.

Potentially Lethal Version

  • I can do this on my own
  • I have made promises to wait until sometime after the 10th anniversary of when my life went to shit
    • 17th August 2019
  • This delay also offers doctors a chance to find a real and actionable solution, research the correct diagnosis or convince me that I’m crazy.
  • It involves everyone’s basic survival instinct
  • Much like the witch trials of Salem, I’m damned either way.
  • I will go out swimming, trigger a few seizures (it may take a few cycles) until I’m fully paralysed and then see if I sink or swim.
    • If I survive – it’s a mental issue, because my survival instinct will have overridden any psychological cause for the paralysis allowing me to swim to shore. I’ll then immediately seek psychiatric care to solve the issue.
    • If I drown – it was a physical issue and I really was paralysed.
      • Dang it

Non-lethal Version

  • Requires the assistance of someone a tad bit sadistic (a person who won’t mind inflicting pain)
  • Involves inducing a number of seizures with a persistent trigger to ensure a longer paralysis that will not abate on its own and ruin the experiment.
  • Extreme and severe pain will be inflicted on my paralysed body.
    • My right leg probably, it’s the most troublesome and it is the first limb to become paralysed and the last to come back
  • This pain, needs to be HUGE, I would theorise using a soldering iron and intentionally giving me 3rd degree burns.
    • If I immediately jump up and punch the person in the face, then it’s a mental issue, because my survival instinct will have overridden any psychological cause for the paralysis allowing me to move away from the source of the pain. I’ll then immediately seek psychiatric care to solve the issue.
    • If I whimper and moan and carry on, I need the person inflicting the pain to keep going. Don’t stop. Unfortunately, my episodic paralysis cycles and I will eventually regain my ability to move without intervention or an assumption of a psychological cause.
  • The person inflicting the pain will need to be able to identify my cycles and know when they are about to end and restart. A strong trigger must continue to be present throughout.
    • To ensure the validity of the paralysis, the pain will have to be applied again during a second, third, fourth, nth cycle.
    • Surely no sane person would endure that unless there was a physical issue preventing them from escaping that amount of pain.


At least, that’s the theory. Hey, I don’t want to die. I don’t want to be in pain. I just can’t continue in this state of cognitive dissonance. I need an answer.

Read what it was like for me in the psychiatric facility back in 2009