Do No Harm—The Work of Medical Cannabis to Treat Epilepsy: How One Physician Found a New Treatment that Works and Upholds the Oath She Took

Charlotte Figi: Patient, Advocate, Trailblazer, and Much More

Two Stories of Lives Lived by Keeping Epilepsy at Bay

Cannabis Becomes One Nurse’s Tool to Treat Epilepsy Disorders

A Brief Overview of the History, Efficacy, and Safety of Cannabis for Epilepsy

The State of Cannabis in Kentucky: A Story of Cannabis, Epilepsy, and Advocacy

Medical Cannabis and Caregiver Rights in Hawaii

Holistic Health Alternatives Offer Patients Other Treatment Plans

Articles

Digital Edition

View our interactive August 2021 digital edition.

August 2021 Digital Edition

I must confess that when I first thought of the idea for this publication, I was heavily influenced by the pediatric patient stories I heard at various conferences over the years. I’m not sure if it’s because I’m a parent myself or if it’s just the idea of a parent or caregiver doing everything they can to help a sick child that touches my heart, but those cases had a big impact on my outlook of medical cannabis. When I first entered the cannabis industry about 6 years ago my focus was mainly on the analytical testing side of things—quality control, best practices for laboratories trying to test cannabis, and so forth. This is still a big focus for my other publication—

. However, at every conference I attended I would find myself drawn to the medical cannabis talks. I would sit and listen to doctors, nurses, parents, and often patients themselves share these incredible success stories of how medical cannabis changed their lives or improved their child’s quality of life and I was always blown away by it. Those talks always left me wondering why more people didn’t know about medical cannabis for all these ailments. Thus, the idea for 

 was born and our mission to share patient stories and help educate a broader group of medical professionals and patients continues.

With that in mind, I am honored to bring you several pediatric caregiver stories in this issue as well as insight from Dr. Bonni Goldstein who treats a lot of pediatric patients with medical cannabis. Dr. Goldstein discusses her observations about how cannabis can “move the brain forward,” explaining how she has seen it help some of her worst seizure disorder patients who had severe developmental delays begin to advance developmentally while using cannabis medicine (page 8). I also had the privilege of speaking with Matt Figi, Charlotte Figi’s father, about her journey to finding help with cannabidiol (CBD) and the Stanley Brothers, the start of Charlotte’s Web, and her enduring legacy on the medical cannabis community (page 12). We also spoke with Jari Sugano, who is the caregiver for her daughter MJ in Hawaii (page 34). Sugano shares some unique insight on being a caregiver in Hawaii and how medical cannabis has helped her daughter.

On the adult side, we connected with two epilepsy patients—Vanessa Jones and Deborah McCauley—who shared their stories about finding relief with medical cannabis (page 18). Jones talks about the initial treatments doctors recommended that didn’t work, and why cannabis gave her some control of her epilepsy and provided a significantly greater quality of life. McCauley’s path to cannabis began as a medical mainstream insider—an RN—who gained more insight as she changed the treatment for her seizures from the usual pharmaceutical regimen to cannabis—while facing backlash from the medical community.

Janna Champagne, BSN, RN, shares her unique expertise as a cannabis nurse (page 22). She explained that she has supported epilepsy patients through education, resulting in

success using cannabis with outcomes including a reduction in antiepileptic drug (AED) pharmaceutical reliance. On the research side of things, our new regular contributor Ruth Fisher, PhD, offers a high-level overview of what is going on in her article titled “A Brief Overview of the History, Efficacy, and Safety of Cannabis for Epilepsy” (page 26).

Advocacy continues to play a huge role in patient access to medical access, as exemplified by C.J. Carter’s work in Kentucky. “The State of Cannabis in Kentucky: A Story of Cannabis, Epilepsy, and Advocacy” (page 30) highlights Carter’s own use of medical cannabis for epilepsy and how he turned that need into a call to action and is now the Kentucky State Director of Minorities for Medical Marijuana trying to change the tide for future patients in his state. Finally, we spoke with Pepper Hernandez, a board-certified holistic health practitioner and the CEO and founder of the Cannabis Holistic Institute, who has suffered from an epileptic disorder since she was 19 years old (page 36). Hernandez also took her medical cannabis experience and turned into a passion for helping others find wellness.

On August 31st, we will be hosting a 90-minute e-symposium featuring a presentation from Janna Champagne and a patient-focused panel discussion with Deborah McCauley, C.J. Carter, and others. Please join us for this free event and learn more about how cannabinoids are helping treat patients with seizure disorders.

Enjoy this issue and I hope to see you August 31st!

From the Editor

Welcome to the third issue of Cannabis Patient Care! The focus of this edition is seizure disorders. 

CBD and Cannabinoids: Future Treatment Plans for Seizure Disorders

a leading medical cannabis doctor, advocate, and researcher, discusses her journey into treating patients with cannabis and cannabidiol (CBD). Here, Dr. Goldstein discusses her observations about how cannabis can “move the brain forward,” explaining how she has seen it help some of her worst seizure disorder patients who had severe developmental delays begin to advance developmentally while using cannabis medicine. Dr. Goldstein also discusses the many studies she has worked on as part of her personal and passionate mission to normalize the use of cannabis for novel medical treatments.

“I will respect the hard-won scientific gains of those physicians in whose steps I walk, and gladly share such knowledge as is mine with those who are to follow. I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon’s knife or the chemist’s drug” (1). That is the modern version of the Hippocratic Oath as written in 1964 by Louis Lasagna, academic dean of the School of Medicine at Tufts University, and used in many medical schools today.

A version of the basic tenet of the oath—to first, do no harm (or 

, the Latin translation from the original Greek)—is sworn to by all physicians in the US, including
Dr. Bonni Goldstein, medical director of Canna-Centers, a California-based medical practice created to educate patients about the use of cannabis for serious and chronic medical conditions.

But this famous quote actually isn’t a part of the Hippocratic Oath at all. It is from another of Hippocrates’ works called “Of the Epidemics” (2). The actual interpretation of the oath is that doctors should help their patients as much as they can by recommending tests or treatments for which the potential benefits outweigh the risks of harm.

And that particular interpretation perfectly aligns with the work that Dr. Goldstein does with her medical cannabis patients.

Dr. Goldstein is something of an enigma in the field of cannabis medicine, evaluating both adult and pediatric patients for use of medical cannabis (3). She has become deeply committed to promoting and exploring the use of medical cannabis.

She has given numerous lectures to many patient support programs, including Cancer Support Community, and various pediatric epilepsy and autism non-profits. She has also lectured at the yearly CannMed conferences, Patients Out of Time conferences, and Cannabis Science Conferences.

She is on the board of the International Association of Cannabis as Medicine, a member of the Society of Cannabis Clinicians, and a member of the Policy Advisory Committee for Americans for Safe Access.

But as Dr. Goldstein has discovered, using cannabis to bring healing to her patients is more than just following the tenets of the oath she swore to. It’s about the perceptions she has to deal with among her doubting colleagues.

“I share my clinical experience in order to try to open up the minds of those who are still dubious about the therapeutic potential of cannabis,” Goldstein said. “Physicians aren’t always convinced by a patient’s experience. But hopefully hearing the collective experience of a well-trained, fairly conservative physician who has been in the field for over a decade will help change opinions.”

Her immersion into this growing niche of medicine began in 2007 when she took a leave of absence after years of working the night shift in pediatric emergency medicine. A friend of hers who was ill asked her about medical cannabis. “I knew nothing at the time,” Dr. Goldstein said. “I did some research for my friend and found numerous reports of medicinal benefits in the scientific literature. I was so intrigued by the science that I started working part-time in a medical cannabis practice in 2008, where I met many patients who found cannabis to be the answer to their medical problems.”

Then a real-life “aha” moment that changed everything for Dr. Goldstein happened in 2013. CNN aired the documentary “Weed” featuring Dr. Sanjay Gupta (4) that highlighted the story of a Charlotte Figi, a five year old Colorado Springs girl who had been suffering from Dravet Syndrome since she was three (5).

Dravet Syndrome is a rare, severe form of intractable epilepsy not controlled by medication (6). Charlotte was having 300 grand mal seizures a week. Doctors had no answers, no help for the family as they witnessed their child deteriorate. They told her parents, Paige and Matt, to say their goodbyes.

That’s when the Figis decided to try some cannabidiol (CBD) oil they got from a local Denver dispensary.

The results were dramatic. Within a year, Charlotte’s seizures slowed to 2-3 times a month. (

Editor's note: read more about Charlotte Figi and her family on page 12 in this issue

After the CNN documentary aired, Goldstein said, her office was “inundated with requests from parents of children with intractable seizures asking for help with cannabis and CBD.” 

“Interestingly, at that time there were no CBD products readily available in California, and the Colorado company mentioned in the documentary had a long waiting list," she said. "So, I was able to approve these ill children to use medical cannabis. But the parents initially had a very hard time finding any CBD products.”

In early 2014, Goldstein said, a number of companies focused on producing CBD preparations for pediatric use, and her patients were able to start trying CBD. “One of my first pediatric epilepsy patients, who I first saw at the age of four years old, is now turning 11 and has had over 99% reduction of seizures with CBD,” Dr. Goldstein said. “It took some time but now he is thriving at school and at home with a fantastic quality of life.”

One of the biggest surprises she has seen in treating patients with cannabis is how it can help to move the brain forward in so many cases. “What I mean by this is that some of my patients with the worst seizure disorders who have experienced severe developmental delays begin to advance developmentally while using cannabis medicine,” she said. “For example, I have a young adult in my practice who began speaking in sentences at the age of 24. She struggled her whole life with seizures and once we were able to get the seizures under control with cannabis, she went from using one word at a time to putting words together to form sentences.”

Another one of her patients with seizures who had not been able to read and write by the age of 9, learned to read and write while using cannabis. Yet another child with developmental delay who suffered multiple strokes at birth began to speak spontaneously at the age of 6 while on CBD and cannabigerol (CBG) (7).

“These are only a few of the many examples that show cannabis is not detrimental to the brain when used as medicine,” Dr. Goldstein said.

If it appears that the child will benefit from cannabis,
Dr. Goldstein makes recommendations on cannabinoids and dosing. “I guide them every step of the way as there is no standard protocol for cannabis medicine,” she said. “Each person responds uniquely to the various cannabinoids at different doses, and the medical course must take into account someone’s response.”

Dr. Goldstein said that people with seizure disorders appear to have an underlying endocannabinoid system dysfunction that can lead to neuroexcitation, which is the over-firing of neurons, leading to seizures. The endocannabinoid system is a widespread neuro-modulatory system that plays important roles in central nervous system development (8).

CBD and other cannabinoids are thought to be effective for treating seizures due to “polypharmacologic properties,” meaning they have many different targets of action within the brain, all leading to a reduction of neuroexcitation.

Dr. Goldstein explained that it is known that CBD has a very wide therapeutic range, meaning some people may respond to a low dose, such as 20 mg, and others may require 800 mg or more per day. “The only way to find an anti-epileptic dose of CBD is to start at a low dose and increase over a period of months, looking for the desired effects.”

The use of other anti-epileptic medications, which can interact with CBD, can complicate the course for these patients, requiring close follow-up, said Dr. Goldstein.

While she has seen firsthand the benefits of cannabis as medicine in her pediatrics work (9), there is still much that the medical science world does not see.

“There is absolutely still a stigma within the medical community in regards to cannabis,” she said, a truism that has dogged cannabis practitioners and researchers alike for years. “Remember that the majority of scientific studies that came out between the 1970s and 1990s reported on the detrimental effects, leading physicians to regard cannabis as a drug of abuse. It is this brainwashing that we must overcome with education and research.”

Goldstein is currently working with a company that is doing research on how cannabinoids may benefit children with autism (10) by looking at numerous biomarkers. “We are studying how cannabis may correct the physiologic imbalances of children with autism who are being treated with cannabis, and should be publishing our results by end of 2021.”

While Dr. Goldstein is a believer in what cannabis can do for patients, seeking to do the best she can for her patients as her Hippocratic Oath demands, she is seeing a sort of evolution of thinking about cannabis coming from patients that is beginning to influence their doctors. “I don’t think any doctor anywhere has not been asked about medical cannabis,” she said. “In order to have a proper conversation with patients, it is incumbent on physicians to, at minimum, understand the endocannabinoid system and the plant compounds and how they interact to impact human health.”

Dr. Goldstein is a popular speaker on the medical cannabis trade show and special event circuit, sharing her story about the discovery of cannabis as a treatment for many human maladies, and her excitement about the future of cannabis as medicine.

Cannabis is Medicine - How Medical Cannabis and CBD Are Healing Everything from Anxiety to Chronic Pain

, released in September 2020, and revised from her self-published book in 2016. It is described by Amazon as a book that “explains the current state of scientific research on how cannabis interacts with human physiology to create balance, leading to good health” (11).

“The idea of writing a book came about from an interaction with a chronically ill patient who was very curious about how cannabis was helping him,” she said. “In our appointments, he was more interested in asking me about the science rather than talking about his medical condition. He asked me where he could get the information I was sharing with him.

“What I hope people will take away from the book is a basic understanding of the endocannabinoid system and how the various compounds from the cannabis plant can interact with the human brain and body to provide beneficial medicinal effects.”

Despite all of the propaganda against cannabis, Dr. Goldstein finds it to be a very safe and efficacious medicine, especially when used under medical supervision. “Hopefully my book helps people get away from the nonsense of ‘Reefer Madness (12),’ and promotes using science to help inform them rather than propaganda,” she said.

Asked what she would like to see happen in the medical cannabis research field in the next 2-5 years, she responded enthusiastically: “Deschedule so that meaningful research can move forward!”

https://www.pbs.org/wgbh/nova/article/hippocratic-oath-today/

https://www.health.harvard.edu/blog/first-do-no-harm-201510138421

https://www.cnn.com/2013/08/08/health/gupta changed-mind-marijuana/index.html

https://www.cnn.com/2013/08/07/health/charlotte-child-medical-marijuana/index.html

https://www.epilepsy.com/learn/types-epilepsy-syndromes/dravet-syndrome

https://www.health.com/mind-body/cbd/best-cbg-oil

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4789136/

http://www.bonnigoldsteinmd.com/cannabis-for-pediatric-epilepsy/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7759327/

https://www.amazon.com/Cannabis-Medicine-Medical-Healing-Everything/dp/031650078X

Doctor Focus

Dr. Bonni Goldstein discusses her observations about how cannabis can “move the brain forward,” explaining how she has seen it help some of her worst seizure disorder patients who had severe developmental delays begin to advance developmentally while using cannabis medicine.

share their stories about choosing cannabis for treatment: Vanessa Jones, suffering from epilepsy all her life that has finally begun to subside; and Deborah McCauley, a registered nurse with a background in mainstream medicine who is also facing her own challenges with epilepsy. Jones talks about the initial treatments doctors recommended that didn’t work, and why cannabis allowed her “to have some control of my epilepsy, regain my autonomy, and provide me a significantly greater quality of life.” McCauley’s path to cannabis began as a medical mainstream insider who gained more insight as she changed the treatment for her seizures from the usual pharmaceutical regimen to cannabis—while facing backlash from the medical community. “I have to say it still amazes me that the existence of an entire body system, our endocannabinoid system, is negated by the stigma of a plant,” McCauley said. “It’s still so fascinating for me to see people argue against the science that is very clearly available.”

Epilepsy has challenged mainstream medicine since it was first observed thousands of years ago. One of the oldest Babylonian medical texts, Sakikku (English translation: “All Diseases”), dating from around 1050 BC, includes the reportedly oldest written account of epilepsy (1).

Since then, researchers have discovered that it may be inherited. For example, if a person has a first-degree relative (mother, father, sibling) with epilepsy, the risk of developing epilepsy by the age of 40 is less than 1 in 20 (2).

But the likelihood of inheriting epilepsy may differ significantly if a person has a relative with a known genetic epilepsy diagnosis. In this case, the chance of developing epilepsy depends on the specific gene and inheritance pattern involved. Certain types of epilepsy are associated with specific genetic changes, including changes in an individual gene or changes in a chromosome.

Researchers have discovered that people with a clinical diagnosis of Dravet Syndrome, one of the more rare forms of epilepsy that is drug resistant (3), are likely to have a variant in a gene called SCN1A (4). Usually, the variant in SCN1A is a de novo variant, meaning that the variant arose in either the egg or the sperm cell and the parents do not have the
SCN1A variant.

The first few epilepsy-related genes were identified in the late 1990s. Advances in DNA sequencing now have identified hundreds of genes that play a role in epilepsy; new genes are being identified on a regular basis, some of which are specific to epilepsy.

But medical science is still stumped about the real origins of epilepsy, and still experimenting with treatments that are generally based in pharmaceuticals.

Researchers are just beginning to learn about specific genes and the types of epilepsy associated with them. In many instances, it may be hard to predict an individual’s epilepsy prognosis because more research is needed, according to the Epilepsy Foundation (5).

Today, using cannabis to treat epilepsy has moved to the top of the list of options. There is a growing batch of data and anecdotal accounts that shows it works. In fact, treating epilepsy with cannabis is quickly becoming the go-to choice for some doctors who have taken the time to learn more about cannabis. But there are still questions about its efficacy—and the scourge of epilepsy marches on.

The statistics tell a chilling story. There are 65 million people around the world who have epilepsy; 3.4 million people in the United States have epilepsy; 470,000 children in the United States have epilepsy; one in 26 people in the United States will develop epilepsy at some point in their lifetime; and there are 150,000 new cases of epilepsy in the US each year (6).

One of the people who likely inherited a genetic disposition to epilepsy is Vanessa Jones, the founder and CEO of Your Virtual Right Hand (7), an executive assistance, marketing, and business development firm.

Jones was diagnosed with epilepsy at 8 years old. “It wasn’t a big surprise,” she said. “I have epilepsy in my family and there’s at least one epileptic every generation. Because we had experience with epilepsy, my mother opted to not put me on medication.”

Jones had one or two seizures a year until she was 13. “Then, it just stopped,” she said. “It wasn’t until I was in a serious car accident after my high school graduation that my seizures came back.”

She was having three seizures within a single episode, and had to take Lamictal (8), an anti-convulsant, for seizure control so she could attend college. “Lamictal was a nightmare for me as it kept me in a constant state of anxiety,” Jones said. “I wasn’t able to attend my classes and had to move back home to be on ‘watch.’”

In 2005, Jones began taking medical cannabis to gain some control of her epilepsy and regain her autonomy, giving her a significantly greater quality of life. “Unfortunately my doctors at the time, between 2010–2014, were not receptive of cannabis as an alternative treatment plan and wanted to continue changing my medication cocktail,” she said.

She initially started taking 1 gram of full extract cannabis oil (FECO) a day because research showed cancer patients were experiencing remission using that same dosage. “So I figured if it worked for cancer, why not seizures?”

It took her about two months to get to 1 gram of FECO a day. She takes a half gram at 4:20 a.m. and a half a gram at 4:20 p.m. “I was lucky when I started in 2010 that California growers under Proposition 215 (9), the Medical Marijuana Initiative, and California Senate Bill 420 (10) provided compassionate care programs that supplied me with organic and clean medicine for cheap, as well as guidance on dosing and further education about the plant,” Jones said. “At that time, I had access to 2:1 CBD/THC ratio through California growers, and kept a journal on how dosing made me feel, and recorded seizures or auras.” (An 

 is the term that some people use to describe the warning they feel before they have a seizure [11].)

During her transition to cannabis, she had two seizures within the first four months, she said, and has been seizure-free for years now.

Epilepsy is a qualifying condition in California, she said, along with many other states (12). “But now with California Proposition 64 (13), and the lack of accessibility and affordability of medical cannabis, I have to cut my dosage to conserve the supply I can find from California growers who still cater to the medical cannabis market. If I have the extra funds and run out of medicine, I am limited in availability and options of strains and CBD/THC ratio, and have to travel more than hour to the nearest dispensary. A 1: 1 RSO (Rick Simpson oil) from a dispensary can cost between $80-$160 a gram and that’s not including tax.”

Overcoming Obstacles: Tough Choice for a Trained Medical Professional

Another medical cannabis patient, Deborah McCauley, BSN, CRRN (CRRN is a type of rehabilitation nurse certification) comes from a unique background within the medical community, having served as a combat medic for the U.S. Air Force.

But her interest in medicine began much earlier. “I started my medical career when I got my first CPR card at the age of 10 from the Babysitters Club of America,” McCauley said. “That’s where my stage was set. I volunteered in an emergency room when I was 16 and subsequently joined the United States Air Force when I was 19.”

McCauley was a combat medic for two years, diagnosed with temporal lobe epilepsy before being honorably separated from the Air Force. She returned home to northern Virginia, where she continued to work as a medical assistant until she met her husband. “He encouraged me to go back to school to obtain my RN,” she said.

But it wasn’t until 2014 when a friend told her that cannabis could be beneficial for the pain she had been dealing with as a rehabilitation nurse working with heavy patients. “Of course, my ‘just say no’ training gave me pause,” McCauley said. “But it wasn’t very long before I gave it a go.”

McCauley was using various pharmaceuticals at the time to maintain control over her epilepsy. “I used to take a lot of pharmaceuticals. I mean, over the years I have probably tried every seizure medication possible and I kept going back to one very old medication,” she said. “But I had no idea how it was affecting me. I was personally unaware of the side effects until my husband asked me why I was acting so dumb, I was experiencing severe cognitive difficulty, which was affecting our communication. I had no idea that there were other options out there.” She slowly transitioned over to only cannabis for both her pain and her epilepsy, with her
neurologist’s approval.

She said that using cannabis helped bring mental clarity to her studies as she worked on getting her Bachelor of Science in nursing degree. “It got my nursing brain working,” she said. “How did cannabis work so well? Why did it work so well? Why were we all lied to?”

She eventually connected with the local Virginia NORML chapter, then reached out to both the American Cannabis Nursing Association (ACNA [14]) and the Cannabis Nurses Network (15).

“I lobbied at the Virginia State Capitol in January of 2019. Our ask was to ‘Let Doctor's Decide,’” she said. “I have been integrating myself into the field and really putting myself out there as an activist and an advocate for the needs and the rights of patients.”

McCauley is currently in pursuit of a Juris Master's from Florida State University School of Law with a focus in healthcare regulation. It is here she hopes to gain more insight on how to positively change the perception surrounding entheogenic plant medicines. 

At first, it wasn’t easy to make the choice of treating herself with cannabis. “I struggled with discontinuing my medication because of that stigma that was ingrained within me,” McCauley said. “But after learning more and seeing that the conversation was being had, that’s when I joined several associations and started to understand more. It was truly eye opening. I’ve been on a mission ever since to dispel the lie that was told to us so long ago. Cannabis is now the only medication I use to maintain control over my epilepsy and my other ailments, like my chronic pain, my ADHD, and all of the fun perimenopausal symptoms that I’m experiencing as I age gracefully.”

McCauley retired from bedside nursing in 2018 due to injury and burnout. “Most of the comments I get is that I’m just a stoner that just wants to get high who is hiding under the guise of medical use,” she said. “Sadly, this is prohibitionist thinking. It is encouraging that more and more healthcare professionals are pulling back the curtain and recognizing the science. But some want to hold on to the past.”

Although cannabis is not a panacea, she said, it can be a therapeutic tool for those who choose this modality. “Part of what we need to do is to fix our broken healthcare system by returning some of that autonomy to our patients so they can be in charge of their own health.”

McCauley moved to Florida in the fall of 2019 where she takes a whole plant oil that is predominantly CBD with a little bit of THC—on average of a 10:1 CBD to THC ratio oil, taking half of a dropper every night. “I have yet to discover any difficulties in my regimen,” she said. “I’ve been pretty consistent, just like I would take a medication, just to make sure that I’m maintaining control over my epilepsy. And I am feeling pretty good.”

One project she’s been working on in Florida is to advance legislation within the state in order to make it mandatory that education about the endocannabinoid system is presented to all nurses during their yearly continuing education courses.

“For the most part, there is little to no medical education that is received for initial medical use here in Florida,” she said. “It’s pretty scary. We’ve got a lot a lot of elderly here, and they don’t necessarily understand this concept of treatment. The model here in Florida requires the patient to see a recommending doctor, which we have to pay out of pocket for. Then we go to the dispensary and there is no medical representation available whatsoever. It’s frustrating that there isn’t very much education being given to the patients who come in to the program.”

For now, McCauley is ramping up an organization she created—called “NurseDebb” (16)—working closely with the Cannabis Nurses Network, who empower nurses through education, opportunity, recognition, and advocacy. She is also the lead on the Advocacy Cornerstone Project, working as a freelance public speaker and an adviser on legislation and advocacy projects. “I have a couple of projects I am working on currently. Everything’s in various stages. I am really trying to help advance that language within the legislation and doing some policy development.”

“Cannabis is not what we’re used to,” McCauley said. “We have to step outside of the box that society has created and the paradigms of yesterday to learn that there are different ways to improve our health and regain our homeostasis.”

Jones said she believes people are still greatly unaware of the medical benefits of cannabis and hemp for epilepsy and seizures because of the lack of education, research into alternative treatments, and awareness of the different types of ways to consume the plant for medicine. “We can’t ignore the strong stigma that has always been attached to cannabis in general,” Jones said. “The cannabis industry has come this far because of the medical cannabis community whose lives have been changed due to its medicine and have fought to have access to it. Reach out for help. Start reading the research behind medical cannabis. Talk to your neurologist and doctors about cannabis as an alternative treatment.”

McCauley agrees that the medical community needs to get on board with cannabis as treatment, and said that the stories from patients is “really where this plant medicine push is coming from.”

“Everybody is getting sick and tired of being told what to do and how to manage their lives,” McCauley said. “I have to say it still amazes me that the existence of our Endocannabinoid System is negated by the stigma of a plant. It’s just still so fascinating for me to see people argue against the science that is very clearly available.

“We have talked about this change for far too long. Legislation has been happening for far too long. I understand that change takes time, but our patients are running out of time. The Entheogenic Plant Medicine train is here, either get on it, or step aside. Be sure you are advocating for the change you want as individuals, as Americans, as humans,” she said. “My big message is to advocate for the most important patient of all—yourself.”

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7049807/

https://www.epilepsy.com/learn/epilepsy-due-specific-causes/genetic-causesepilepsy/epilepsy-and-genes.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2937162/

https://www.epilepsy.com/about-us/about-foundation

https://www.linkedin.com/in/vanessa-jones-290a0b129/

https://ballotpedia.org/California_Proposition_215,_Medical_Marijuana_Initiative_(1996)

https://leginfo.legislature.ca.gov/faces/billTextClient.xhtml?bill_id=200320040SB420

https://epilepsysociety.org.uk/epilepsy-auras

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6398594/

https://www.linkedin.com/in/veteranrndeb/

Patient Focus

Two medical cannabis patients—Vanessa Jones and Deborah McCauley—share their stories about choosing cannabis for epilepsy treatment.

Two Stories Of Lives Lived By Keeping Epilepsy At Bay: Cannabis Was The Key Discovery That Freed These Patients From The Pain And Suffering Of An Ancient Incurable Disease

Epilepsy is a chronic disease characterized by overactive neuronal activity—abnormal electrical discharges—in the brain. Most new cases are diagnosed either in children or the elderly. The cause of primary epilepsy is unknown, while secondary epilepsy may result from a number of different conditions, including injury or stroke (1). With an incidence of about 50 cases per 100,000 people per year, epilepsy is one of the most common neurological diseases. Notably, roughly one-third of patients are drug resistant (refractory), meaning their seizures have not been controlled after using at least two different antiepileptic medications (2). Refractory patients suffer from intractable seizures, and treatment is often invasive (1). The severest forms of epilepsy are the developmental and epileptic encephalopathies (DEEs), each of which is relatively rare, but with a nontrivial overall incidence of one in 2000 births. DEEs are defined by frequent seizures, together with severe cognitive and behavioral impairment, morbidity, and mortality (3,4).

Written records of cannabis use for epilepsy date back as far as 1800 BC. Cannabis was introduced to Western medicine during the 19th century by an Irish physician, William O′Shaughnessy, who had studied medicine in India, from where he brought back knowledge of therapeutic uses for cannabis to Europe. O′Shaughnessy’s own case reports note cannabis uses for “infantile convulsions.” By the late 19th century, cannabis appeared in Western pharmacopeias and was widely used to treat a variety of illnesses. During the early 20th century, however, Western medicine turned away from natural extracts to focus on chemical isolates, and eventually cannabis use was prohibited internationally (5).

Much anecdotal and pre-clinical evidence had been amassed that clearly suggested the efficacy of cannabis for epilepsy. Yet, the lack of scientists’ clear understanding of cannabis’s mechanisms of action for its pro-therapeutic effects for epilepsy deterred scientific interest in further research. It wasn’t until the early 1990s that the discovery of the endocannabinoid system revived interest in researching the therapeutic effects of cannabis for epilepsy, among other health conditions (5).

Cannabis for Epilepsy: Mechanism of Action

One role of the endocannabinoid system (ECS) is to dampen overactivity in the central nervous system (CNS), including preventing seizures. More specifically, 

—cannabinoids produced by the body—act on endocannabinoid receptors (CBRs) located in central and peripheral neurons (CB1) and in receptors located in immune cells (CB2) (2).

—cannabinoids produced by cannabis plants—are tetrahydrocannabinol (THC) and cannabidiol (CBD). THC causes greater psychoactivity and serves as an agonist primarily for CB1, but also for CB2. CBD, on the other hand, is nonintoxicating and has lower affinity for CBRs, where it serves as a weak antagonist (6). Both THC and CBD have been shown to be promiscuous, that is, they have affinities for dozens of different molecular targets (3,7).

Both THC and CBD have been shown to have anticonvulsant properties. There is also increasing evidence of ECS involvement in the process of epileptogenesis. However, the mechanisms of action (MOA) of THC and CBD for epilepsy have only been partially understood (6).

Studies show CBD blocks the uptake and hydrolysis of an eCB, anandamide (ANA), which increases ANA’s potential to activate the CBRs. Other potential MOAs include activation of transient receptor potential of: vanilloid type-1 receptors (TRPV1); G protein-coupled receptor 55 (GPR55); voltage-dependent anion channels 1, CaV3.x, 5-HT1A; glycine receptor; adenosine modulation; and sodium channels of GABAergic inhibitory interneurons (3,6).

Cannabis for Epilepsy: Survey of the Research

There is a substantial body of research on cannabis uses for treating epilepsy. A sizeable amount of preclinical research on cannabis for epilepsy has been performed. However, up until the last few years, most clinical research on cannabis for epilepsy has been low-powered, due to such problems as: small sample sizes, non-randomly selected participants, lack of control groups, lack of blinding, inconsistent interventions across participants, and poorly described cannabis products (2,8). At the same time, study participants were also generally taking a regimen of antiepileptic therapies, with variable consistency in dosing throughout the study period. Nevertheless, reported findings for nonrandomized studies, though slightly larger in magnitude, were still similar to findings from more recent randomized controlled trials (8).

Preclinical studies have shown that cannabis prevents seizures and reduces mortality in epilepsy. Studies have also shown that after chronic seizures have been experienced, the endocannabinoid system exhibits changes in homeostatic components that are both acute and chronic in nature (4). Finally, studies have shown that THC has produced both anticonvulsive and proconvulsive effects in animals (9–11), while CBD has exhibited clear antiepileptic effects (3).

There are a multitude of case studies on the effects of cannabis for epilepsy. Some reports suggest pro-convulsive effects of cannabis. However, the majority of cases report either positive effects or lack of effect of cannabis for controlling seizures (4,11,12).

There are also a multitude of surveys on the effects of cannabis for epilepsy. The estimated prevalence of cannabis use by epileptic patients ranges from about 4% to about 20%, with more evidence of incidence toward the higher end of the range. Again, the majority of surveys report either positive effects or lack of effect of cannabis for controlling seizures (4,11,13,14).

As with both case study and survey research on the effects of cannabis for epilepsy, there is also a multitude of small-scale or non-randomized clinical trials on cannabis use for epilepsy. And as with both the case studies and surveys, the majority of the research reports either positive effects or lack of effect of cannabis for controlling seizures (1,2,4,6,8,15,16). More specifically, four classes of positive effects were reported for patients in treated groups relative to those in control groups:

Reduction in seizures was achieved by a moderate to
substantial portion of patients

More than 50% reduction in seizures was achieved by a moderate portion of patients

Freedom from seizures was achieved by a small but
nonzero portion of patients

Secondary improvements were achieved in the areas of quality of life, mood, alertness, behavior/aggression, sleep, language/cognition, and motor skills

There are a couple of larger-scale randomized controlled trials (RCTs) on the effects of CBD for epilepsy. These RCTs are all associated with clinical trials of Epidiolex on behalf of GW Pharmaceuticals for the purpose of gaining US Food and Drug Administration (FDA) approval of this drug. The RCTs indicated that GW’s CBD formulation may reduce seizures with high tolerability and low toxicity. As such, in June 2018, Epidiolex received FDA approval for the treatment of two specific DDEs, Lennox-Gastaut syndrome (LGS) and Dravet syndrome (17).

Several points of concern, which warrant further discussion, can be gleaned from the research on cannabis for epilepsy.

Preclinical research and case studies indicate the potential for THC to have pro-convulsive effects (9,10,11,18,). Due to a combination of this pro-convulsive potential, together with its psychoactive nature, researchers have tended to shy away from clinical studies of the therapeutic potential of THC.

Further examination of this research reveals that THC may have pro-convulsive effects either when administered at “near-lethal doses” or when administered to subjects with a recessive genetic mutation (9,10,18). Other case study reports of cannabis causing seizure activity occurred in patients who had consumed either other drugs (for example, cocaine, LSD, amphetamines) or “street drugs” that could easily have contained other impurities responsible for the seizures (11).

On the subject of THC being pro-convulsant in humans, noted cannabis researcher Ethan Russo observes, “It should be mentioned that while there are claims of seizure exacerbation in humans by THC, these are isolated occurrences with no correlation to dosage, timing of administration, etc.” (18).

Both THC and CBD have been shown to inhibit cytochrome P-450 enzymes, that is, they interfere with the metabolization of other medications (1–4,6,8,11,14,16). In particular, CBD decreases the rate of metabolism of the common anti-seizure medication, clobazam. However, simply decreasing doses of clobazam seems to alleviate the effects (8,15).

Clinical studies indicate that the use of cannabidiol for epilepsy generally involves adverse effects. The majority of study participants experience adverse effects, including somnolence, diarrhea, decreased appetite, fatigue, lethargy, pyrexia, vomiting, and elevated liver enzymes (3,6,15).

Adverse effects reportedly dissipated upon cessation of dosing. Moreover, several studies noted that adverse effects were alleviated either by lowering doses of cannabis (or clobazam) (6,15) or by administering cannabis in forms alternative to the standard oil tinctures, such as through transdermal or vaporization administration (3).

Several researchers noted that cannabis has been receiving a lot of media attention lately, where CBD has been touted for its dramatic benefits in treating children with epilepsy. These media reports have created high expectations for many parents about the potential of CBD. Since the placebo effect is intimately tied to patient expectations, researchers have suggested that expectations created by media attention may be responsible for significant positive responses of study participants who were given placebos, rather than cannabis medicine (1,3,4,8).

In particular, a study performed in Colorado included subjects whose families had moved to Colorado to be able to access cannabis treatments, as well as subjects who had been native residents of Colorado. Results showed that study participants who had moved to the state reported positive responses to the medication (>50% seizure reduction) three times more often than study participants who had been long-time residents of the state. These differences in reported results could not be explained by differences in types of epilepsy, types of cannabis treatment administered, or other factors examined. Other similar examples were provided. Paradoxically, such a strong placebo effect makes it difficult for researchers to establish a true benefit attributable to medical cannabis (4).

Nevertheless, cannabis studies have observed statistically significant decreases in seizure frequency for epileptic children, a clinically important finding (8).

Two big challenges associated with studies of medical cannabis efficacy involve the forms of cannabis used in studies.

The first challenge is that cannabis formulations vary from study to study, which makes head-to-head comparisons across studies difficult. Preclinical studies tend to involve pharmaceutical grade or synthetic forms of CBD, THC, or other substances that act on the endocannabinoid-system (1,4). Next, surveys and retrospective studies tend to involve respondents who have used “cannabis,” without providing specific information about cannabis formulations (for example, CBD only, THC only, CBD and THC combined, minor cannabinoids and terpenes), form of use (such as smoking, vaping, tinctures, capsules) or dosing (for example, 5 mg/day, 50 mg/day) (1,6). Finally, clinical trials tend to differ in the types of cannabinoids used: synthetics, pharmaceutical grade isolates, or plant extracts (1,6). Again, the variation in cannabinoid type makes it difficult to compare outcomes across studies.

The second big challenge with studies of medical cannabis efficacy is their use of 

—purified CBD or THC—which may be less effective in generating therapeutic effects than whole plant extracts. More specifically, cannabis researchers have emphasized the benefits of using plant extracts containing multiple compounds from the plant. Relative to using CBD or THC isolates, plant extracts enable patients to use lower doses that achieve better positive effects, with fewer negative effects (19). Studies that use cannabis isolates rather than extracts, as do most of the clinical trials, run the risk of biasing study results towards findings of lower efficacy.

When considering the benefits and risks of different therapies, physicians tend to have very different perspectives than patients do. In particular, physicians tend to be risk-averse and eschew potential therapies that offer potential benefits, but that come with the risk of making patients worse off than they currently are. Patients, on the other hand, tend to be less risk-averse than providers: Patients live with the day-to-day reductions in quality of life caused by their ill health, and many patients are quite willing to risk further harm with a new therapeutic, if it comes with enough of a chance at improvement in their current state.

Roughly 30% of epileptic patients are treatment-resistant. As reported earlier, these patients suffer frequent seizures, together with severe cognitive and behavioral impairment, morbidity, and mortality. As seen by the relocation of many families with epileptic children to cannabis-friendly states, many of these treatment-resistant patients would willingly risk potential harms associated with using cannabis for the chance of reduction in seizures associated with cannabis use. Physicians should be aware of this difference in perspective.

At the same time, a non-trivial portion of epileptic patients who have participated in cannabis research indicate that they use cannabis as a means of addressing their epilepsy. Physicians who refuse to consider cannabis as a viable treatment for epilepsy thus risk not only alienating patients, but contributing to mistreatment, if patients simply decline to inform their physicians of their cannabis use.

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Research Focus

An overview of the history regarding medical cannabis as a treatment option for epileptic disorders.

A Brief Overview of the History, Efficacy, and Safety of Cannabis for Epilepsy 

Kentucky State Director of Minorities for Medical Marijuana, quit smoking cannabis, he had his first seizure. Here, Carter talks about his lifelong relationship with cannabis, how it helps his epilepsy, being a cannabis advocate in the Bluegrass state, and his work around cannabis education and legalization.

At C.J. Carter’s eighth-grade graduation party, he tried cannabis for his first time; he was 13 years old. Fast forward about 20 years to June 2018, he was married, on vacation with his wife, and cannabis-free for two weeks when at 6 a.m. he woke up with three men hovering over him in his hotel room. Carter, now the Kentucky State Director of Minorities for Medical Marijuana, had just suffered his first seizure, the first of 30+ seizures he would experience in the next 2.5 years. A few weeks later, after his fourth seizure, he was diagnosed with temporal lobe epilepsy.

Through various tests, MRIs, and CAT scans, the doctors learned that Carter had a cavernoma behind his left eye—a dark spot on his brain. And although Carter has since made several lifestyle changes—diet (low salt, no fried foods, no sugar), weight loss, and so forth—he still consumes cannabis because he believes it’s his medicine.

“I’m not a doctor, but I believe that I’ve been medicating myself my whole life, and I didn’t realize it,” he said. “It wasn’t until I stopped consuming marijuana that this condition came to light. Based on what the doctors said and the science, the cavernoma had been there for a while.”

C.J. Carter, Kentucky State Director of Minorities for Medical Marijuana, shares the details about his lifelong relationship with cannabis, how it helps his epilepsy, being a cannabis advocate in the Bluegrass state, and his work around cannabis education and legalization.