It’s a Lottery! Finding the Best Medication for My Schizoaffective Disorder
And the side effects that accompanied my quest for sanity
Since my first psychotic episode over twenty years ago, I’ve tried several different drugs. There is seemingly no way for doctors to gauge the impact or the required dosage for any given treatment. There’s no blood test to tell you if you’re on the right track. It’s just a case of trial-and-error.
Side effects are to be expected. And generally, the positives — sanity! — far outweigh whatever else comes along for the ride.
But there are always exceptions.
One drug I was on for over six months dealt me an impressive array of adverse reactions.
It was administered by injection. I was hospitalised at the time, so the nurses managed to give it to me despite my objections (that’s a story for another day).
After each dose, I could hardly do anything. The manic-ness was gone, but so was my ability to get out of bed. I had chest pains and felt dizzy. My blood pressure was dangerously low.
Five weeks later, I was discharged from hospital.
My blood pressure was no longer a cause for concern, but I still lacked energy. I gradually became accustomed to feeling permanently tired and lethargic — it was preferable to being manic. I accepted that this was how it was going to be from now on.
I’d been at home for a week when my 70-year-old mum encouraged me to take a walk with her. She needs knee replacements and walks with poles. I figured we could go slow together.
How wrong was I! I couldn’t keep up!
Then there was the dribbling.
The usual reflex of swallowing excess saliva had been erased from my brain.
Occasionally, I’d feel something wet on my chin before I could do anything about it. Seriously embarrassing.
Once, when playing a game with my seven-year-old nephew, I accidentally dribbled on his hand. I saw the spittle dangling and desperately tried to suck it up — but I was just too slow. He screeched for all my family to hear, “Urgh, Auntie Jan, you dribbled on me! My baby brother dribbles, too!” Kids don’t have a filter, do they?
Not long after, a friend and I went for a lovely picnic at the beach. As I passed her a piece of freshly baked cake, I noticed my drool on it. I was mortified. I prayed she hadn’t seen. She had. She laughed it off and ate it like a true friend.
And don’t get me started on preparing a meal.
After salivating all over the cookbook, it would take hours to follow a simple five-minute recipe. I needed to read the instructions repeatedly — I couldn’t comprehend them. And then I’d forget what I was doing. Finally, acute frustration usually got the better of me as I attempted to fathom the oven timer (that I’d used hundreds of times in the past). Looking back, I was doomed to failure.
Then there were the shakes.
My hands had a constant tremor; I had trouble gripping objects. Using a knife turned into a risky task. And if I did manage to chop the ingredients, set the timer, and cook myself a meal, the shakes meant I’d spill most of the food before I got the fork in my mouth.
I began to wear black to hide the stains on my clothing.
My weight ballooned even though I couldn’t feed myself with a fork. I had to wrestle my jeans to fit into them. I was constantly hungry.
I suppose I should be thankful the shakes stopped me from eating more, and my black outfits hid the bulges!
You’d imagine my extra padding would insulate against the cold. Not so.
Even in hot weather, I was freezing. I turned up the thermostat at home — everyone else would be sweating, and I’d be swamped under layers of clothes, frozen to the core. I looked like the Michelin Man. My partner organised a surprise trip to Riga, but the only thing I saw during the entire weekend was the interior of the hotel room. I passed on the daily excursions, opting instead to remain by the radiator. Apparently, Riga is a beautiful city.
Four long months later, the doctors agreed to drop the dosage. Living a life where you’re so doped up you can do almost nothing is not much fun.
There was no improvement.
Following a further eight weeks of struggling, I asked to be taken off it completely. It had kept me sane for more than half a year, but the impact it had on my life was intolerable.
I was given a new prescription.
This time, the wait was short.
Seven days later, I was back in the secure unit, suffering severe psychosis.
Although being sectioned is a horrific experience, I’m grateful this hospitalisation led to another review of my drugs. Using an experimental approach, we’re limping towards a solution that suits me.
All things considered, it’s clear that some side effects are a minuscule price to pay for sanity. Nevertheless, each individual needs to decide for themselves what they are willing to tolerate.
It’s easy to think, “Better the devil you know,” and it’s undeniably scary changing medicine with the possibility of psychosis looming over you. However, we shouldn’t have to suffer reactions that severely diminish our quality of life when there are other options.
By writing this, I hope to increase awareness of the debilitating effects medication can have on a sufferer…
And most importantly,
I wish the best of luck and never-ending hope to anyone who like me, is stumbling along this trial-and-error path toward sanity.
We’ve got this!
