By 2011 I had cycled through more than 26 medications trying to get my seizures under control, and I’d stopped expecting much from any new option that came along. So when people in the epilepsy community started talking about cannabidiol — CBD, the non-intoxicating compound in cannabis — I was paying attention years before most neurologists were willing to take it seriously.

Before Epidiolex, There Was Nothing Official

There was no FDA-approved cannabis-derived medication in 2011. CBD as a treatment for epilepsy lived almost entirely in anecdote, small case reports, and a loose, fast-growing network of parents and patients who’d run out of conventional options and were willing to experiment in legally gray territory. I was one of them.

I started with Charlotte’s Web, the high-CBD strain that the Stanley brothers in Colorado developed and that would later become national news through Charlotte Figi’s story. I had a reliable connection for it, but the cost proved too high to sustain over time, and that’s what pushed me to look elsewhere. That search is how I ended up connecting with Jason David, who had developed Jayden’s Juice for his son Jayden, also living with severe, treatment-resistant epilepsy. Through that relationship, and through talking with others in that early cannabis-for-epilepsy community who shared what they’d learned and researched, I started making my own tincture from a recipe Jason gave me directly.

I’m not going to walk through that recipe here. Cannabis extraction and dosing is genuinely hard to get right safely without real guidance, and what I did in a specific time, place, and legal environment isn’t something I want anyone reproducing as if it were medical advice. What I can tell you honestly is that I didn’t take any of it on faith — I researched as heavily as I could before I experimented, and I kept researching the whole way through.

Over the months and couple of years I dabbled with cannabis and CBD, I didn’t see what I’d call seizure control, and I want to be precise about that rather than overstate it in either direction. I can’t honestly say my seizure frequency or severity changed in a way I could attribute to what I was using. What I did notice were other changes — some improvement in how I tolerated the side effects of everything else I was already taking, some general symptom management that felt real even if I couldn’t point to a single mechanism behind it. I wouldn’t say it was enough, on its own, to justify continuing long-term. But I was in a genuinely difficult place at that point in my life, and looking back, I think it moved the needle just enough to help me get through that stretch and keep working toward a better place. I’m not willing to credit cannabis with where I am today — that’s the result of a much broader picture: medications, doctors, faith, and a lot of trial and error across more than a decade. But it was part of that picture, and I think it’s worth being honest about both what it did and didn’t do for me.

Then Epidiolex Arrived

In June 2018, the FDA approved Epidiolex — the first prescription medication ever derived from the cannabis plant — for seizures associated with Dravet syndrome and Lennox-Gastaut syndrome. After years of mixing my own oil and trusting word-of-mouth dosing from other patients, watching a pharmaceutical-grade, dosage-consistent CBD product get federal approval felt almost anticlimactic for me personally. But it mattered enormously for families who needed something they could get from a pharmacy rather than a stranger’s kitchen.

Epidiolex is made by Jazz Pharmaceuticals today, not the original developer, GW Pharmaceuticals — Jazz acquired GW in a $7.2 billion deal that closed in May 2021. The drug’s approved uses have also expanded: it now covers seizures from tuberous sclerosis complex as well, added in July 2020, and is approved for patients as young as one year old. In April 2020, the DEA fully descheduled it, meaning Epidiolex is no longer a controlled substance under federal law at all — a real shift from the Schedule V status it briefly held right after approval.

The Safety Picture Is Real, Not Theoretical

None of this makes Epidiolex risk-free, and a balanced look at it means taking the safety data seriously. It carries a risk of liver injury, so patients need regular blood draws to monitor liver enzymes. It interacts significantly with clobazam, a seizure medication many patients take alongside it, by raising blood levels of clobazam’s active metabolite — something that needs to be managed with a treating physician, not guessed at. Like every antiepileptic drug, it carries an FDA class warning about increased risk of suicidal thoughts or behavior. Common side effects include drowsiness, reduced appetite, diarrhea, and fatigue, and there isn’t enough human data yet to know its risks during pregnancy.

The Whole-Plant Question Finally Has Some Data

Epidiolex is purified CBD — no THC, no other cannabinoids. The advocacy community I was part of in 2011 and 2012 mostly believed whole-plant extracts worked better, through what’s sometimes called the “entourage effect” — the idea that cannabinoids work better in combination than any one of them does alone. For a long time, that was more an article of faith within the community than something backed by real data.

That’s starting to change. A 2025 case series out of Imperial College London and the research group DrugScience followed ten children with severe, treatment-resistant epilepsy who hadn’t responded to standard CBD treatment. After switching to whole-plant medical cannabis extracts, the group saw an 86 percent reduction in seizures. That’s a meaningful result, but it’s worth being precise about what it is and isn’t: a case series of ten patients, not a randomized controlled trial, and not something that can be generalized into a recommendation yet.

The better-designed research is finally coming. Two NHS-funded clinical trials led by researchers at University College London and Great Ormond Street Hospital are starting in 2025, randomizing roughly 500 adults and children with treatment-resistant epilepsy to CBD alone, CBD combined with a small amount of THC, or placebo, over 24 weeks. That’s the first real double-blind comparison at meaningful scale — the actual answer to the question a lot of us were asking back in 2011 with nothing but homemade tinctures and trial and error to go on.

What I’d Tell Someone Facing This Today

If I were back where I was in 2011, with a stack of failed medications behind me, I’d be glad to have an FDA-approved, dosage-consistent option available that didn’t require me to trust a hand-mixed batch made in someone’s kitchen. But I wouldn’t dismiss the whole-plant question either — the research is finally starting to catch up to what a lot of patients and families were asking more than a decade ago.

What I’d actually say to someone in that position now: talk to your neurologist before starting anything cannabis-related, especially if you’re on clobazam or another medication Epidiolex is known to interact with. Ask directly about liver monitoring. And treat anecdotes — including mine — as a starting point for questions to ask your doctor, not as an answer in themselves.

Sources & References:

• FDA — EPIDIOLEX Prescribing Information
• Jazz Pharmaceuticals — Completion of GW Pharmaceuticals Acquisition
• DEA Descheduling Announcement, April 2020
• Epilepsy Action — NHS Cannabis Medicine Trials for Refractory Epilepsy
• Imperial College London / DrugScience Case Series Summary

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Disclaimer

This content is for informational purposes only and is not a substitute for professional medical advice, diagnosis, or treatment. Cannabis and CBD products carry real legal and medical complexity — federal and state laws differ, and interactions with other medications can be serious. Always consult a qualified healthcare professional before making any changes to your health regimen, including medications, diet, exercise, or supplementation. David Julian, Natural Vitality Advocate, is not a licensed medical professional. Views expressed are personal and based on lived experience — they do not guarantee specific outcomes. David Julian is not affiliated with Natural Vitality or NaturalVitality.com.