At the height of the war on drugs in the 1980s, a scientist named Raphael Mechoulam at the Hebrew University of Jerusalem in Israel was testing the effects of CBD on the neurological disorder epilepsy. This is significant because CBD is a cannabinoid – a substance derived from the cannabis plant. Cannabis, the species of plant known for both marijuana and hemp, was much maligned during this period and in the US was (and still is) classified as a Schedule I substance under the US Controlled Substances Act of 1970.
CBD, or cannabidiol, is one of 113 such cannabinoids that’s found in cannabis. Unlike its more famous sibling THC (tetrahydrocannabinol), CBD has no intoxicating effects. But it does have many healing properties.
Epilepsy is the generic name for a group of neurological conditions that cause seizures. The seizures can be brief and undetectable or can be prolonged and characterized by violent shaking. These attacks can result in physical injuries such as broken bones. The seizures usually happen frequently and have no known cause in most cases.
Among the more commonly known epilepsies are:
- Angelman Syndrome
- Autosomal Dominant Nocturnal Frontal Lobe Epilepsy (ADNFLE)
- Benign Occipital Epilepsy of Childhood (BOEC)
- Benign Rolandic Epilepsy
- CDKL5 Disorder
- Childhood Absence Epilepsy
- Doose Syndrome
- Dravet Syndrome
- Early Myoclonic Encephalopathy (EME)
- Epilepsy of Infancy with Migrating Focal Seizures (EIMFS)
- Epilepsy with Generalized Tonic-Clonic Seizures Alone
- Epilepsy with Myoclonic-Absences
- Epileptic Encephalopathy with Continuous Spike and Wave During Sleep (CSWS)
- Febrile Infection-Related Epilepsy Syndrome (FIRES)
- Frontal Lobe Epilepsy
- Glut1 Deficiency Syndrome
- Hypothalamic Hamartoma
- Jeavon Syndrome
- Juvenile Absence Epilepsy
- Juvenile Myoclonic Epilepsy
- Lafora Progressive Myoclonus Epilepsy
- Landau-Kleffner Syndrome
- Lennox-Gastaut Syndrome (LGS)
- Ohtahara Syndrome
- Panayiotopoulos Syndrome
- PCDH19 Epilepsy
- Progressive Myoclonic Epilepsies
- Rasmussen’s Syndrome
- Reflex Epilepsies
- Ring Chromosome 20 Syndrome
- Rolandic epilepsy
- SCN8A-Related Epilepsy
- Sunflower Syndrome
- TBCK-related ID Syndrome
- Temporal Lobe Epilepsy
- West’s Syndrome
Nearly 40 million people worldwide suffer from some form of epilepsy. In 2015, 125,000 reported deaths were as the result of an epileptic attack.
How A 5-Year-Old Girl Changed the CBD and Medical Cannabis Industry
On October 18, 2006, a girl named Charlotte Figi was born. At the age of 3 months old, she had her first prolonged epileptic seizure. She was eventually diagnosed with Dravet syndrome also known as severe myoclonic epilepsy of infancy or SMEI.
Dravet syndrome is a type of epilepsy with seizures that are often triggered by hot temperatures or fever. It usually presents within 6 months of age with frequent seizures brought on by fever. Children with Dravet syndrome typically experience delayed development of language and motor skills, hyperactivity and sleep difficulties, chronic infection, growth and balance issues, and difficulty relating to others. The effects of this disorder can intensify over time, and children diagnosed with Dravet syndrome require full-time caretakers specially trained to take care of the patient.
At the age of 5, Charlotte hadn’t achieved many growth and development stages that children her age should have reached at that age. In her 5 years of life, doctors had prescribed every known drug that was available. The list included:
- Convulex (valproate)
- Depakote (valproate)
- Elepsia (levetiracetam)
- Epilim (valproate)
- Frisium (clobazam)
- Keppra (levetiracetam)
- Klonopin (clonazepam)
- Onfi (clobazam)
- Oxtellar XR (oxcarbazepine)
- Paxam (clonazepam)
- Qudexy XR (topiramate)
- Rivotril (clonazepam)
- Stavzor, (valproate)
- Tapclob (clobazam)
- Topamax (topiramate)
- Trileptal (oxcarbazepine)
- Trokendi XR (topiramate)
- Urbanol (clobazam)
- Valium (diazepam)
- Vazepam (diazepam)
- Zonegran (zonisamide)
In addition to the medications, some of which were given simultaneously, Charlotte was put on a ketogenic diet for children that Hollywood producer Jim Abrahams of Airplane and the Naked Gun movie series brought back from obscurity in the 1990s that had been successful treatment at the Mayo Clinic in the 1920s and 1930s before the first anti-convulsant medications were created.
Despite all of these medications and strategies, doctors had informed Charlotte’s parents that they had reached the end of the line. At this point, Charlotte required a feeding tube for nutrition and water, struggled to walk and talk, and needed full-time assistance with her activities of daily living. She was experiencing over 50 seizures a day.
Hearing this news, Charlotte’s mother Paige started looking for alternatives. She had come across a case in California where a parent had successfully treated their child who suffered from seizures with cannabis. Charlotte and her family lived in Colorado, which also had approved medical cannabis.
Paige researched this lead intently. She consulted parents, doctors, scientists, chemists, marijuana activists, growers, medical marijuana patients, lawyers, and dispensary owners. She had found conflicting information regarding the effects of cannabis on seizures, but what she kept finding that was consistent was that a component of cannabis, CBD, was found to be effective with studies involving animals.
She eventually found the Stanley brothers (Joel, Jesse, Jon, Jordan, Jared, and Josh). They had been crossbreeding cannabis and hemp and developed a rare strain of cannabis that had a high CBD content (20%) and low THC content (under 0.5%). After consulting epileptologists, pediatricians, and officials from the state of Colorado, she began Charlotte on a course of CBD.
Paige started with low doses of CBD to begin and gradually increased the dosage (to 4mg per pound based on Charlotte’s weight). The results were incredible. For the first time since her first few months of life, Charlotte went a solid week without a seizure.
Within 3 months Charlotte had been weaned off all other anti-convulsant medications and was solely using CBD sublingually. Her seizures had reduced by over 90%. She went from having over 300 per week to having only 2 to 3 nocturnal seizures per month.
They did try to take her off the CBD to see if the seizures came back. They took her off for 3 days and the seizures returned. So Charlotte quickly returned to her regular course of CBD.
Today Charlotte is able to function as normally as most children her age. She no longer uses a feeding tube. She’s able to walk and talk. She even enjoys horseback riding. She averages about 1 seizure per week.
The results were so profound that the Stanley brothers named the strain of cannabis Charlotte’s Web. They also formed a non-profit organization called Realm of Caring (RoC) to reimagine “the way we think, talk, and respond to cannabis and the people who use it. Collaborating on innovative research. Providing revolutionary education. Empowering families to lead better lives.”
RoC works with over 55,000 clients around the world and has a network of over 1,300 health professionals that they interact with. (https://theroc.us/)
The astonishing results of Charlotte’s CBD use and the work of RoC led to many states changing laws to allow medical use of cannabis and CBD. It also led the way in helping get the 2018 Farm Bill passed in the US Congress so that hemp with less than 0.3% THC was able to be produced in the United States. To date, 47 states have changed laws to allow for the use of medicinal CBD (some require prescriptions). Many more are considering lifting all restrictions based on the passage at the end of 2018 of the Farm Bill. Charlotte’s Web has had less than 0.3% THC for several years (originally it was less than 0.5%).
Epilepsy Studies involving CBD
The first groundbreaking study involving the use of CBD to epilepsy patients was in 1980. Israeli chemist Dr. Raphael Mechoulam, who is arguably the most profound cannabis scientist in modern history, organized a study on how CBD affected epileptic patients. He recruited 15 patients. 7 received a placebo and 8 received 200-300 mg daily of CBD for 4 1/2 months. At the conclusion of the study, “4 of the 8 CBD subjects remained almost free of convulsive crises throughout the experiment and 3 other patients demonstrated partial improvement in their clinical condition. CBD was ineffective in 1 patient.” The study concluded with “the potential use of CBD as an antiepileptic drug and its possible potentiating effect on other antiepileptic drugs are discussed.” (https://www.ncbi.nlm.nih.gov/pubmed/7413719)
In a 2016 study, scientists looked at patients that had a genetic disorder called tuberous sclerosis complex (TSC). The most common manifestation of the illness is epileptic seizures. The study involved 18 patients who were studied for 1 month to determine the average amount of seizures they had per week. The study found that after a month, the average was 22 seizures per week for the group.
After the first month, patients began treatment with CBD with an initial dose of 5 mg/kg/day. This was increased by 5 mg/kg/day every week up to a maximum dose of 50 mg/kg/day.
After the third month of treatment with CBD, the seizures for the group decreased to 13.3 per week. The study concluded that “Although double-blind, placebo-controlled trials are still necessary, these findings suggest that cannabidiol may be an effective and well-tolerated treatment option for patients with refractory seizures in TSC.” (https://www.ncbi.nlm.nih.gov/pubmed/27696387)
A 2017 study looked at how the brain reacted to CBD as an anticonvulsant. The researchers use animals to conduct their tests. The results showed “CBD delayed seizure sensitization resulting from repeated PTZ (pentylenetetrazole) administration (kindling). This cannabinoid also prevented PTZ-induced EEG (electroencephalographic) activity and interleukin-6 increase in the prefrontal cortex. In conclusion, the robust anticonvulsant effects of CBD may result from multiple pharmacological mechanisms, including facilitation of endocannabinoid signaling and TRPV1 mechanisms. These findings advance our understanding of CBD inhibition of seizures, EEG activity, and cytokine actions, with potential implications for the development of new treatments for certain epileptic syndromes.” In other words, the scientists tried to induce seizures in these animals and the CBD they administered to them reduced and inhibited the seizures. (https://www.ncbi.nlm.nih.gov/pubmed/28821005)
And while the last 4 decades have provided insights into how CBD can help patients with epilepsy, the roots of this research actually come from the 1830s. Irish physician William O’Shaughnessy had moved to Calcutta to work as a professor at the Calcutta Medical College.
While at the college, O’Shaughnessy started looking at local folk remedies and came across a plant that would become known as Cannabis Indica. He found that many of the treatment that the local population used the plant for actually worked. As he worked with the plant, he started recommending it for a number of conditions.
His work was validated when he used the plant to effectively still the convulsions of an infant (which today would be considered epilepsy) with the plant.
He would eventually be the first scientist to publish the effects of Indica on patients via the Medical and Physical Society of Calcutta.
As time went on, he returned to Great Britain and brought Indica with him. Within a decade, the plant had become an over-the-counter remedy in throughout Europe and North America and was recognized in such medical texts as the United States Pharmacopeia.
Success with CBD as a treatment for epilepsy led to a major pharmaceutical company to try and bring CBD to the market. At the time, CBD was still considered a Schedule I drug by the Food and Drug Administration.
Research for the drug started in September 2013. The focus of the research was on 2 forms of epilepsy, Lennox-Gastaut Syndrome and Dravet Syndrome. After nearly 5 years of trials, GW Pharmaceuticals was given approval for Epidiolex by the FDA on June 25, 2018. The following September, Epidiolex was rescheduled by the Food and Drug Administration as a Schedule V drug to allow for its prescription use. It still requires rescheduling in many states that have their own controlled substances schedules to allow prescriptions in those states.
Epidiolex is a clear, colorless to yellow liquid containing cannabidiol at a concentration of 100 mg/mL ad includes the inactive ingredients dehydrated alcohol, sesame seed oil, strawberry flavor, and sucralose.
While Epidiolex is now available by prescription, the cost of the drug is extremely high. A single prescription can run about $1300 for 100 milliliters. Since the dosage is done by the weight of the patient, this can run into the tens of thousands of dollars each year. This is why many are looking to retail sellers of CBD to keep costs down, the drawback is that potency and dosages may not be exact and can vary by manufacturer.
History has shown that cannabis was a legitimate way to treat issues with convulsions and modern research hasn’t only confirmed this but has isolated the compound within the cannabis plant that works effectively to treat the issue, CBD.
But the research has only started. At this time only one prescription drug exists to treat 2 types of epilepsy. With over 100 different conditions that are part of the group of disorders called epilepsy, a lot more research needs to be done.
People with epilepsy have been stigmatized for millennia. From some societies believing that the afflicted person is possessed by demons to some societies restricting rights, such as the right to drive. Until 1971, epilepsy was grounds for an annulment in the United Kingdom. CBD gives hope to these people that the pain from the stigma of the disease will dissipate along with the seizures.