A Pulse Check on Epilepsy and Medicinal Cannabis

In honor of National Epilepsy Awareness Month (November), I’m reviewing cannabis’s effectiveness in treating the seizure disorder epilepsy – one with which I myself am afflicted. Although cannabis has been discussed in this capacity for decades, the floodgates were opened for research when state legislatures and D.C.’s government began legalizing the substance all or in part over the last several years. (Incidentally, that further diluted the stigma I was raised to enforce against cannabis.) From those opportunities, a wealth of data was generated, and I’m anxious to learn more so that I can explore a less dangerous way to treat my epilepsy.

Epilepsy at a Glance

What is epilepsy?

As the World Health Organization explains, epilepsy is a chronic noncommunicable disease of the brain characterized by recurrent seizures. Johns Hopkins Medicine defines a seizure as a burst of uncontrolled electrical activity between brain cells (also called neurons or nerve cells) that causes temporary abnormalities in muscle tone or movements (stiffness, twitching or limpness), behaviors, sensations or states of awareness. Seizures vary in severity, ranging from lapses of consciousness to prolonged convulsions, and frequency, ranging from one per year to several per day. This webpage from the Mayo Clinic describes them in great detail.

(Source: Mayo Clinic, Epilepsy – Symptoms and causes – Mayo Clinic)

Beyond the clinical definition, however, are the comorbidities that 84% of epileptics experience. As documented by CURE Epilepsy and other organizations, these include, in descending order of probability (by percentage):

Headaches (79%), including migraines (25%) and tension-type (40%).
Depression (up to 50%).
Stroke (33.3% for age 45 and above).
Autism spectrum disorder (30%).
Sudden Unexpected Death in Epilepsy syndrome (0.001%).

What causes epilepsy, and what causes seizures?

According to the American Association of Neurological Surgeons and National Institute of Neurological Disorders and Stroke, epilepsy can be tied to a brain injury or genetics, but for 70% of epilepsy patients (including me), the cause is unknown. Seizures occur when triggered, and triggers vary widely and must be learned empirically by each epileptic. However, the Epilepsy Foundation does cite the following among the most commonly reported seizure triggers (all of which, and more, apply to me):

Sleep deprivation (not sleeping well, not getting enough sleep, disrupted sleep, etc.).
Flashing bright lights or patterns (including flash photography).
Alcohol or alcohol withdrawal.
Dehydration or not having enough fluids.
Low blood sugar and/or vitamins and mineral deficiencies.

How is epilepsy treated, and can it be cured?

The most common means of treating epilepsy, along with Epilepsy Foundation resources, are:

Although there is no known cure for epilepsy, it often clears up on its own, particularly in the case of children who outgrow an epileptic phase. (In my case, it was a sudden onset at age 22 and has only worsened with time.) Seizure prevention treatments can be effective, but are never guaranteed to stop seizures completely. In fact, 30% to 40% of people with epilepsy live with uncontrolled seizures because the treatments currently available simply don’t work. And even for epileptics who are responsive to treatment, there are many side effects and risks imposed by each treatment. UT Southwestern Medical Center presents a thorough analysis of these and other treatments here.

Image credit: cdc.gov/epilepsy

How do you know which treatment to go with?

Using me as a case study, the most practical treatment has always been an AED, which I’ve been taking in one form or another since my sudden onset (cause unknown) in early 2005. Currently, my AED is lamotrigine extended release (XR), which I’ve been taking daily since 2009 (although I started out on the brand-name prescription, Lamictal XR). Here’s why:

Cutting out part of my brain isn’t an option because there’s no specific part of my brain that causes the seizures.
Neuromodulation is a high-stakes, high-risk empirical treatment that involves the Russian roulette equivalent of low-grade electroshock therapy in the hopes of controlling seizures – hard pass.
A keto diet (high fat, low carb) presents exceptionally high risk to my cardiovascular health due to a history of heart disease on both sides of my family.
Cannabis consumption, even for medicinal purposes only, would cost me my job because it’s illegal.

However, on any AED, I’m subject to the never-ending balancing act of treating the AED’s side effects with another medication, and then treating that medication’s side effects with yet another medication ad infinitum. Check out what I go through daily on lamotrigine XR, for instance – to say nothing of the side effects I deal with as a result of the medication I take to get me through lamotrigine XR’s side effects.

Image Credit: Tinnakorn Jorruang/123RF.com

As cannabis freedom began spreading throughout the country over the past five years though, I couldn’t help but wonder whether I’d have a chance at a higher quality of life now. “Wouldn’t it be great,” I thought, “if a treatment as minimally invasive as an organic plant became an option and didn’t knock the first domino in that synthetic-compound side effects relay race? And would such a treatment be plausible? Affordable? Sustainable?” I hadn’t looked into this option since the early 2010s, even though I’ve been successfully controlling my cat’s nausea with CBD oil since 2019, and even though I’ve championed it for palliative care, so I set forth to get the 2022 rundown.

Medicinal Cannabis for Epilepsy

The Mayo Clinic succinctly defines medicinal cannabis (aka medical marijuana) as “a term for derivatives of the cannabis sativa plant that are used to ease symptoms caused by certain medical conditions.” The best known active compounds in cannabis are delta-9 tetrahydrocannabinol (THC) (what gets you high) and cannabidiol (CBD). (Click here for a comparison of the two substances.) The compound used to treat epilepsy in particular is CBD, which contains only trace amounts (< 0.3%) of THC, if any at all. According to the U.S. Department of Health and Human Services:

Cannabinoids, primarily CBD, have been studied for the treatment of seizures associated with forms of epilepsy that are difficult to control with other medicines. Epidiolex (oral CBD) has been approved by the FDA [Food and Drug Administration] for the treatment of seizures associated with two epileptic encephalopathies: Lennox-Gastaut syndrome and Dravet syndrome. (Epileptic encephalopathies are a group of seizure disorders that start in childhood and involve frequent seizures along with severe impairments in cognitive development.) Not enough research has been done on cannabinoids for other, more common forms of epilepsy to allow conclusions to be reached about whether they’re helpful for these conditions.

The clinically researched doses of CBD for treating epilepsy have found significant correlations when administered in quantities starting at 2.5 milligrams per kilogram of the person’s body weight twice daily. (Click here to convert your weight in pounds into kilograms.)

Cannabis in the Treatment of Epilepsy horizontal textbook infographic illustration about cannabis as herbal alternative medicine and chemical therapy, healthcare and medical science vector.

The Answers to My Questions

1. CBD oil is no longer banned by governments outright – but with conditions.

The Center for Advancing Health (CFAH) examines the nuances of state-level laws on CBD oil in depth here. (Note: That information is current as of August 2022 and does not reflect the long-term ramifications of the November 2022 midterm elections.) Separately, retailer cbdMD clarified the federal government’s stance brilliantly in a January 2021 article (emphasis added):

The 2018 Farm Bill did play a significant role in the CBD industry’s rise and growth; CBD became legalized but with specific conditions. A major misconception has some people believing that the Farm Bill fully legalized CBD or cannabidiol – the non-intoxicating cannabis compound. And while the law does remove hemp-based products from Schedule I status – the tier for drugs deemed most dangerous under the Controlled Substances Act – it doesn’t legalize CBD in general.

The Farm Bill can create exceptions to a Schedule I status, but only under certain situations. The bill states that any cannabinoid – the active compounds within a cannabis plant – derived from hemp is legal only if the hemp source is cultivated in a way that adheres to the Farm Bill, the associated state and federal regulations, and by a licensed hemp farmer. In other words, if the CBD or any other cannabinoid comes from a cannabis plant that has more than 0.3 percent THC or wasn’t grown in the way prescribed in the Farm Bill, it is still a Schedule I substance in the eyes of federal law and therefore, illegal.

The only exception to this murky distinction is the pharmaceutical-grade CBD product that the U.S. Food and Drug Administration approved in 2018, Epidiolex. More importantly, the lesson here is to be mindful of the source of CBD products. For instance, oil tinctures that contain CBD extracted from industrial hemp grown under the proper regulations are legal under the 2018 Farm Bill. However, if the CBD came from marijuana cannabis, which already has over 0.3 percent THC, it is not under any federal legal protection – even though CBD itself is non-intoxicating.

For more detail and extensive answers to frequently asked questions about CBD legality, visit this Food and Drug Association (FDA) webpage.

Legality of cannabis in the United States Legal for recreational use Legal for medical use Illegal D Decriminalized Notes: · Reflects law of states and territories, including laws which have not yet gone into effect. Does not reflect federal, tribal, or local laws. · Hemp and hemp-derived products have been legal since the enactment of the 2018 Farm Bill. v t e
Image Credit:Lokal_Profil, CC BY-SA 2.5 <https://creativecommons.org/licenses/by-sa/2.5>, via Wikimedia Commons

2. CBD oil is mostly recommended for treating drug-resistant epilepsy, and only the one FDA-approved CBD oil for epilepsy is championed, but CBD oil is indeed effective.

The “Journal of Epilepsy Research” stated unequivocally: “CBD is mostly devoid of adverse psychoactive effects and possesses anticonvulsant, analgesic, anti-anxiety, antiemetic, immune-modulating, anti-inflammatory, neuroprotectant, and anti-tumorigenic properties.” The scientific explanation for why CBD oil helps with controlling seizures was summarized effectively by Forbes in an interview with neurology and epilepsy specialists: “CBD has been shown to act on the brain’s G protein-coupled receptor 55 (GPR55)—the part of the brain that decreases the release of calcium into cells, thereby decreasing excitatory currents and leading to seizure activity. Through clinical studies, it has been determined that CBD can help reduce neuron excitability.” This provides a generalizable, measurable observation that attests to this alternative therapy for epilepsy.

Industry consensus is limited to the data-rich studies of the only FDA-approved CBD product for treating epilepsy, Epidolex. The drug’s semi-legal status has opened doors to studies that are still closed for other types of CBD oils. However, when asked whether CBD helps seizures, the Neurology Center for Epilepsy and Seizures still answers broadly in the affirmative:

CBD can help prevent some types of seizures in some people and animals. Clinical trials have demonstrated a significant reduction in seizures for people taking CBD to treat Lennox-Gastaut, Dravet syndrome, or tuberous sclerosis complex. Research in other areas is still in early stages, but there are indications that CBD may help prevent other types of seizure or increase the efficacy of other antiepileptic medications. Early clinical trials suggest that CBD may dramatically reduce seizures in people with CDKL5 deficiency disorder, Aicardi syndrome, Doose syndrome, and Dup15q syndrome. In addition, CBD appeared to retain its efficacy over the length of the clinical trial.

Tempering that advocacy, however, the center clarifies that the positive effects are only assured with prescription CBD, and that commercial CBD products can actually increase seizure frequency. HealthCanal.com explains why that is:

CBD oil is generally made from hemp extract combined with some kind of carrier oil like coconut oil or hemp seed oil. Depending on how the CBD is extracted, CBD oil products are labeled either full-spectrum or broad-spectrum. Full-spectrum oil contains a full array of cannabinoids[2] and other naturally occurring plant compounds from the cannabis plant. Broad-spectrum CBD contains all but the THC and CBD isolates have been processed to remove all additional compounds, leaving only the cannabidiol.

Similar to the Neurology Center for Epilepsy and Seizures, the Epilepsy Foundation hedges its support:

While not everyone with epilepsy should or would consider medical cannabis or cannabidiol (CBD) as a treatment option, some people living with uncontrolled seizures have reported beneficial effects and reduced seizure activity when using medical cannabis, especially strains rich in CBD. Further research is needed on the effects of medical cannabis on epilepsy, but when recommended by a treating physician, medical cannabis may be the best alternative for some individuals living with drug-resistant epilepsy and uncontrolled seizures.

(Source: Epidolex, Treatment Options for LGS, TSC, Dravet | EPIDIOLEX® (cannabidiol) (epidiolexhcp.com))

3. Treating epilepsy with CBD oil is generally cost-prohibitive.

I was already expecting to uncover this with my research because my neurologist told me that very recently. CBD oil is definitely effective and has its value as a holistic alternative to compounded drugs, but it’s extremely expensive – unaffordably so for most people. CBD School has an entire article explaining why CBD oil is so costly, citing as an example:

CBD oil tincture bottles contain between 300mg to 3000mg CBD per bottle. And depending on the brand and quality of the CBD oil, a milligram of CBD can cost between $0.04 to $0.20 per milligram of CBD. While those are some wide variants of cost and milligrams within a bottle, you can see that CBD oil as a whole isn’t cheap.

As Forbes points out, prices vary depending on the potency of ingredients and manufacturing processes, and different mediums offer varying levels of bioavailability (how much of what you take is actually absorbed into your bloodstream to have an effect). So, before considering this as an option, see whether it’s in your budget.

4. The long-term effects of using CBD to treat epilepsy have not been determined but appear comparable to or less severe than those caused by AEDs.

As Medical News Today notes, scientists have struggled to expand on research in CBD oil’s effectiveness in controlling seizures due to the strict government regulations surrounding cannabis. However, what’s clear is that the most detrimental side effect comes from consuming CBD via ignition (i.e., smoking the dried hemp plant/flower). Fortunately, there are many other ways to consume CBD:

Oils and tinctures (extracts of plant material dissolved in ethanol).
Gummies (soft, chewable candy).
Bottled liquids sprayed directly into the mouth.
Capsules (tablets or softgels) taken by mouth.
Vapes (CBD oil heated without ignition and inhaled as a vapor).
Foods that CBD oil has been added to, such as brownies.
Drinks infused with CBD, often in the form of hemp extract.

Bottle of CBD oil

However, the Epilepsy Foundation cautions: “The only CBD product that has been rigorously studied and approved to be used as a medical therapy for epilepsy is the drug Epidiolex. … [N]ot every CBD product is the same quality or uniform from batch to batch. Any drug or supplement that is being considered for use as a medical treatment should first be discussed with your doctor. The potential for benefit as well as the interaction with other seizure medications and possible side effects require careful review with your doctor.”

The Neurology Center for Epilepsy and Seizures adds to the foundation’s final point: “CBD interacts with brivaracetam, clobazam, eslicarbazepine, stiripentol, rufinamide, topirimate, valproic acid, and zonisamide. It also possible that it interacts with other antiepileptics, and as research continues, we should have a better idea of other possible interactions.” Additionally, the center warns: “[U]sing CBD to treat seizures … can lead to an increase in suicidal thoughts or behaviors, sleepiness, drowsiness, diarrhea, and loss of appetite. While most of these side effects are inconvenient, interactions can also cause liver damage.”

What Lies Ahead for Me

Given what I’ve learned through my latest research, my hope for a less complicated future as a disabled person has been renewed. Although the only serious option appears to be the one the U.S. government has half-legalized, and although that drug is said to be limited in its effectiveness to specific types of epilepsy, I’m open to alternative AEDs that won’t wreck my body like my current one does. And now that I know medicinal cannabis (specifically CBD oil) isn’t a fast track to unemployment, I’ll revisit that treatment option with my neurologist. You might consider having the same discussion with your physician, or you might encourage a loved one with epilepsy to discuss it with their physician. Epilepsy makes life hard without the help of any kind of discrimination (legal, financial, etc.), so anything that lessens our burden as epileptics goes a long way toward improving our quality of life.

Kathleen Hearons is an editor, writer, voice over actor and avid cinephile. She lives and works in the greater Los Angeles area.