Max was 16 when his symptoms first started.
“It started as a nauseous feeling every month or two. This built into stronger feelings of nausea that were more frequent. They then became so strong I was unable to focus on what other people were saying and what I was saying just went quiet,” he told Mamamia. “One night I was at a party and my memory just blanked out. My girlfriend at the time took me into the bathroom and waited for me to ‘come to’. I couldn’t remember anything that had just happened.”
It was at this point Max decided he should see to a doctor.
“The epilepsy diagnosis was soon overshadowed by the brain tumour news,” Max’s mum, Elizabeth said. “We had to wait a month or so over Christmas to compare a follow up MRI to see whether the tumour was growing and to find out whether it was benign. It was heart breaking.”
“You just want perfection and an easy life for your kids and this was so shockingly far from that,” she continued. “The mood of everything just changed, it was an absolute challenge to maintain life as normal. It was most important to maintain strength for Max, not be one of those flip out mothers.”
A benign tumour was found in Max’s brain, the cause of his epileptic seizures. Because of the tumour’s location, an operation to remove it was – and still is – too dangerous.
Max’s diagnosis has meant extreme life changes for the now 18-year-old. He’s not able to drive; he’s not able to work in jobs like retail or hospitality; he can’t do anything that might be dangerous if a seizure hits. He had started doing stand-up comedy before the diagnosis. He’s now quietly script writing a sit-com at home instead.
“I get about 10 seconds of warning before a seizure hits, it’s this weird feeling of building nausea. It’s like my teeth and tongue turn into different textures,” Max said. “If I’m holding a drink or something, I put it down. During the seizure itself, I usually just dribble all over myself. Tapping my hand on my leg. Sometimes people will hand me tissues and I don’t know what to do with them. Sometimes they’re more intense, and there is more chewing of my mouth and tapping of my hands. I don’t remember any of this. This is just what people tell me. Coming out of a seizure feels like being woken up in the middle of the night from the deepest sleep. You feel so vague. I have no idea what triggers them.”
Medication is all Max has to try and reduce the severity and frequency of the seizures. At the moment Max is on three different types of medication but he’s tried many others.
Tablets upon more tablets upon more tablets are now an everyday part of Max’s life. Even with all these pills, he’s still having seizures every three to five days. Taking over his mind, stripping his consciousness, hitting him unpredictably. Any time, any situation.
“Watching my son pop a bunch of pills is pretty agonising, but it’s important to be supportive of what’s necessary,” Elizabeth said. “I’m still not convinced they’ve been great [for him] though. Some have made him dizzy and weary. He had fewer seizures before beginning the pills. But if he tries to stop, they’re worse again.”
Side effects like nausea and fatigue are common with epilepsy medication. Max says the pills also affect the way he expresses himself.
“When I first started taking medication, I was beginning year 12 and English was my favourite subject. I love writing. I could feel the pills limiting my vocabulary. It was like I had a word on my tongue and I couldn’t get it out. The first lot of medication destroyed the thing I most loved to do, which is write” Max said.
“I only take one of the pills at night so the side effects are lessened. It gives you a really drunk feeling, you feel really wibbly wobbly. None of the medications are working fully. They might increase the time period between seizures a little bit. They might help me stay more aware during seizures. But I’m still having regular episodes.”
Cannabis might be the solution.
A breakthrough clinical trial is currently underway in Australia. It is the first trial using cannabis extract in a gel – applied to the skin twice daily – to reduce symptoms in epileptic adults. The gel could be a new way to reduce epileptic seizures, without the side effects associated with traditional medications.
“Medications act by suppressing nerve cell activity. Anything that suppresses nerve cell activity also works to slow the brain down,” neurologist at the Royal Melbourne Hospital Professor Terry O’Brien who is leading the clinical trial told Mamamia. ” These medications come with neurological and psychiatric side effects. Drowsiness. Dizziness. Lack of energy. Even depression and psychosis.”
The gel uses the medicinal part of the marijuana plant called cannabidiol (CBD), which acts completely differently to traditional medication. CBD is not the ‘psychoactive’ component of marijuana. The chemical that causes the ‘high’ is called tetrahydrocannabinol (THC) and it is not present in the gel extract.
“In this trial, the CBD is synthetically manufactured- not botanically produced,” Professor O’Brien said. “Typically, medicinal marijuana still contains a small proportion of THC. This gel has zero THC.”
The gel application is a big deal. It’s never been tested before and it’s designed to boost effectiveness, without the nasty side effects.
“The problem with the medicinal marijuana that’s been used so far is that it’s oral. This means CBD is broken down in the stomach first, and then metabolised in the liver,” Professor O’Brien said. “Some of the side effects are generated in the stomach and liver, and topical application bypasses this. Oral medication also means most of the CBD is broken down before it reaches the brain, which is where you want it to work. That is why people have traditionally inhaled marijuana. One way of getting around this, which is safer than inhaling it, is topical preparation gel.”
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At the end of year 12, almost a year after his diagnosis, Max went to Schoolies Week on the Gold Coast. During the week away, while staying with friends, Max smoked marijuana for the first time. It was the longest time Max had gone without a seizure since his diagnosis.
“I told my doctor (Professor O’Brien) about smoking marijuana and he said ‘well, let’s find a way for this to work legally’,” Max said. “He pointed me to the trial. My parents were very supportive, they were just happy I had seen some kind of result.”
“If there’s a time to smoke some weed, schoolies would be it,” Max’s mum said. “None of his friends smoke cigarettes, or party hard. They’re really a great bunch of clever, creative, and driven teenagers. I’ve had no concerns that a few joints would turn them into a horde of junkies.”
“It was really a ray of hope that we are living in the right era for medicinal cannabis to be a possibility,” Elizabeth continued. “Max has no desire to be high or sedated all the time, so an extract that is free of THC is ideal. A rub would be less intrusive than swallowing pills.”
The implications of this trial are huge. It could mean reduced reliance on medication for epileptic sufferers. It could mean a more ‘normal’ way of life for adults living with epilepsy. It could mean fewer seizures, without the drowsiness and nausea and foggy-mindedness that come with current medications.
“We’re hoping that it will be able to control seizures for people whose seizures aren’t controlled in current medication,” Professor O’Brien said. “The gel should be better tolerated, with fewer side effects. The results of this current trial will come through mid next year and they will be critical in how it advances. If possible, it will lead to another trial, an international trial of 300 – 400 people. It will hopefully be available for general prescription within five years.”
The participants in the trial, however – like Max – will receive early access to the gel.
The trial is happening at the same time medicinal cannabis is being legalised in Australia.
Changes by the Therapeutic Goods Administration, which come into effect this month, will mean medicinal cannabis no longer falls under Australia’s most stringent of schedules, used to control the use of the most dangerous drugs. Instead, it will become legal for people who are seriously ill to grow and use marijuana for medicinal purposes. Permits are required.
“If [the gel] has any effect at all, that’s appealing,” Max said. “I want to be writing, I want to do things, I don’t want to be living with the side effects of medication or on a high of THC. The gel is very exciting.”
For more information about the clinical trial, or if you’d like to be involved, visit www.epilepsyclinicaltrial.