The Definitive Handbook for Using CBD to Overcome Epilepsy and Seizure Disorders

Understanding Seizure Disorders

For many of us, during waking hours we expect to be in complete control of our faculties; walking, eating, and driving present no issue as we go about our day. Yet for millions of adults and children across the U.S. with epilepsy and other seizure disorders, a debilitating episode can happen at any moment, with few warning signs. Traditional treatments range from anticonvulsant medications to invasive brain surgeries in the most severe cases. The recent bevy of research around the medicinal properties of cannabis, and Cannabidiol (CBD) specifically, has shone a light on it as a promising treatment for people living with some varieties of seizure disorders.

Continue reading below to find out about the latest research on CBD and seizure disorders, what kinds of treatment are available, the recommended dosage of CBD for epilepsy, and where medicinal CBD is legal.

Understanding Epilepsy and Seizure Disorders

Epilepsy is a chronic neurological condition characterized by recurrent, unprovoked seizures due to abnormal activity in the brain. It is a spectrum disorder, meaning it varies in cause, type of seizures, severity, and impact from person to person. Seizure disorders refer to a range of conditions that can cause seizures, including epilepsy. Not all seizures are the result of epilepsy. They may stem from a brain injury, be inherited as a family trait, or completely lack a known cause.

The WHO estimates that worldwide, up to 50 million people are affected by epilepsy. According to the 2021 National Health Interview Survey, there are 2,865,000 adults in the United States with active epilepsy, which is defined as being on a prescribed medication for epilepsy and/or having had a seizure in the previous year. An additional 1,637,000 American adults reported inactive epilepsy. Together they form 1.7% of the U.S. population and demonstrate the sizable impact epilepsy and seizure disorders have across the country.

Seizures experienced in epilepsy can be diverse. Here are some common types:

Generalized tonic-clonic seizures

These seizures involve the entire body and can cause muscle rigidity, convulsions, and loss of consciousness.

Myoclonic seizures

These are characterized by quick, jerking movements of the muscles.

Absence seizures

Often seen in children, these seizures can cause brief periods of staring into space or subtle body movements.

Tonic seizures

These seizures cause muscle stiffness.

Atonic seizures

Also known as drop seizures, these can cause a sudden loss of muscle control, causing the person to fall or drop down.

The causes of epilepsy and seizure disorders can be varied. Some common causes and risk factors include:

Age

Epilepsy can occur at any age, but it's more common in children and older adults.

Family history

The risk of developing epilepsy may be higher if a family member also has it.

Head injuries

Seizures can develop hours, days, months, or even years after a head injury.

Brain conditions

Conditions such as brain tumors or strokes can cause seizures.

Infectious diseases

Diseases such as meningitis, AIDS, and viral encephalitis can cause epilepsy.

Epilepsy is typically diagnosed when a person has had two or more unprovoked seizures. The diagnosis process may involve a detailed medical history, a neurological examination, and tests such as an electroencephalogram (EEG) to monitor the electrical activity in the brain. Sometimes, other tests like blood tests, lumbar puncture, or brain imaging may be required.

Treatment for epilepsy primarily aims to control seizures, and it can vary depending on the severity of the condition, the type of seizures, and the person’s age, overall health, and medical history. Here are some common treatment options:

  • Medication: Anti-seizure (antiepileptic) drugs can be very effective in controlling seizures. The type of medication prescribed will depend on the type of seizures, the person’s age, possible side effects, and the presence of other medical conditions.
  • Surgery: If medications are not effective and the seizures are localized to a specific area of the brain, surgery may be an option. The goal of surgery is to remove the area of the brain where the seizures are occurring.
  • Vagus nerve stimulation (VNS): This involves implanting a device under the skin in the chest that sends electrical signals to the brain via the vagus nerve to reduce the frequency and intensity of seizures.
  • Dietary therapy: Diets such as the ketogenic diet can help control seizures in some people, particularly children who do not respond to medication.

Living with epilepsy can be challenging, but with the right treatment and support, many people with the condition lead full and active lives. It’s important for anyone with epilepsy to work closely with their healthcare provider to determine the best treatment strategy for them. Regular follow-ups are crucial to monitor the condition and adjust treatment as necessary. Connecting with support groups can provide a vital lifeline of community, understanding, and resources.

Introduction to CBD

CBD, or cannabidiol, is the second most prevalent active ingredient in cannabis (marijuana). It is an essential component of medical marijuana and can be derived directly from the hemp plant, a cousin of marijuana, or manufactured in a laboratory. Unlike THC, the primary psychoactive component of marijuana, CBD does not cause a “high” by itself.

CBD interacts with the human body in a comprehensive and dynamic fashion, depending on the situation and location of endocannabinoid receptors in the brain or body. It generally acts to promote homeostasis (i.e., balance), situationally reducing inflammation and decreasing blood pressure (if it is too high), among other physiological benefits.

The potential benefits of CBD usage are numerous and include:

Epilepsy Treatment

CBD was first approved as a drug in 2018 by the Food and Drug Administration (FDA) under the name “Epidiolex” for the treatment of seizures in children with severe forms of epilepsy [4].

Anxiety and Stress Management

CBD oils, gummies, and other products are growing in popularity as ways to manage anxiety and stress [6].

Insomnia

CBD can aid falling asleep and improve the quality of sleep in adults, but reactions to CBD for sleep vary [7].

Heart Health

Some research has linked CBD with several benefits for the heart and circulatory system, including the ability to lower high blood pressure [5].

Due to the increasing notoriety of these proposed benefits of CBD, more doctors and patients are turning to CBD as a therapy or as a replacement for traditional pharmaceuticals.

Despite being used for a wide range of ailments, CBD use also carries some risks. Though it’s often well-tolerated, CBD can cause side effects, such as dry mouth, diarrhea, reduced appetite, drowsiness, and fatigue. CBD can also interact with other medications you’re taking, such as blood thinners. Another cause for concern is the unreliability of the purity and dosage of CBD in products.

CBD and Epilepsy

The potential of CBD products for the treatment of seizure disorders goes beyond seizure control alone. In our study, we saw clinically significant improvements in anxiety, depression and sleep when patients with epilepsy initiated therapeutic use of artisanal CBD products.

Ryan Vandrey, Ph.D., Professor of psychiatry and behavioral sciences at the Johns Hopkins University School of Medicine
Ryan Vandrey, Ph.D., Professor of psychiatry and behavioral sciences at the Johns Hopkins University School of Medicine
What is the current scientific understanding of how CBD can help with epilepsy and seizure disorders?

The human body has an endocannabinoid system (ECS) that receives and translates signals from cannabinoids. It produces some cannabinoids of its own, which are called endocannabinoids. The ECS helps to regulate functions such as sleep, immune-system responses, and pain. CBD does not affect the same receptors as THC and this is the main reason it doesn’t have a strong psychoactive component.

With regard to epilepsy, it’s believed that CBD may interact with the endocannabinoid system in ways that can help to reduce seizures. However, the exact mechanisms are still not fully understood and some research has found that CBD actually has a low affinity for the body’s ECS recptors. Scientists are currently looking at CBD’s interactions with ion channels, enzymes, and neurotransmitters like serotonin to see how it’s anti-convulsive mechanisms work. A 2023 study at NYU looked at a molecule found in neurons called lysophosphatidylinositol (LPI) which is thought to amplify signals in the brain and potentially play a role in disruptive seizures. They found that CBD blocked signals carried by LPI, providing a possible explanation for how it works to treat epilepsy in some patients.

Epilepsy is hardly a monolithic condition and has many subtypes. More research is needed to fully understand how CBD can help with epilepsy and seizure disorders.

 

What are the results from clinical trials and studies on CBD's effectiveness in treating epilepsy?

Clinical trials and studies have shown that CBD can be effective in reducing seizures in certain types of epilepsy. An early study conducted by the University of Alabama at Birmingham found that approximately 50% of 51 subjects in a trial reported a sustained improvement in epilepsy symptoms, with two patients being completely seizure-free since beginning CBD treatment.

In another study on the effectiveness of Epidolex, patients given the CBD-based medication showed a marked improvement in symptoms when compared to a placebo group.

However, the results vary depending on the type of epilepsy, the dosage of CBD used, and other factors. It’s important to note that while CBD can be effective in some cases, it’s not a cure for epilepsy and it doesn’t work for everyone. More research is needed to determine the optimal dosage and to understand the long-term effects of CBD use in people with distinctive neurological conditions like epilepsy.

How does CBD compare to traditional epilepsy medications in terms of effectiveness and side effects?

CBD and traditional epilepsy medications work in different ways and can have different levels of effectiveness. Some people find that CBD is more effective than traditional medications, while others find the opposite. It can depend on the type of epilepsy, the individual’s body chemistry, and other factors. Around 30% of epilepsy cases are classified as Treatment-Resistant Epilepsy (TRE), where patients simply don’t respond to common anti-epiliptic drugs and other therapies.

 

Some studies have found a slight improvement in the reduction of tonic seizures in juvenile patients who were resistant to other therapies [9]. One case study detailed a significant improvement in a juvenile patient who had been treated with a litany of medications.

This case study also demonstrates the potential for CBD to be effectively used alongside traditional treatments for an improved outcome. In a survey of four trials with a total of 714 participants, this compounded benefit of using CBD alongside Cloazam was again demonstrated.

Traditional epilepsy medications like Clobazam, Lacosimide, and Phenobarbitol can also cause side effects, which can include dizziness, fatigue, mood changes, and more. Some people find that the side effects of traditional medications are more severe or harder to manage than the side effects of CBD.

On the other hand CBD has fewer side effects than many traditional epilepsy medications and is generally considered to be well-tolerated. However, it can still cause side effects like dry mouth, diarrhea, reduced appetite, drowsiness, and fatigue. Due to the potential for interaction with other medications, it’s important to talk to a doctor before starting CBD.

 

Expert Interview

Holley Moseley, RN, BSN

On a typical day at her job as a nurse, Holley Moseley met a small, captivating toddler named RayAnn who would change her life forever. What began as their fairytale of a family knit together by love and adoption quickly became the harrowing tale of Holley and her husband fighting to save their daughter’s life. When they found the miracle they were desperate for in the form of CBD-rich oil, a type of medical cannabis, they soon realized that their story was really just beginning.

Holley Moseley, RN, BSN

Dr. David Berger interviewed mom and author, Holley Moseley, RN, BSN. Holley published a book, “A Ray of Hope,” which shares her daughter, RayAnn’s story of using CBD oil to treat epilepsy and cerebral palsy.

Can you tell us about your child and how she came into your life?

"RayAnn just happened to be one of the children who were waiting for a medical foster home. She was my patient and I had her for three shifts, so three days back-to-back. I remember going home on that third day and just praying for her and hoping that we can find a good foster home for her. She had a spark to her and she captured my heart immediately."

What were the challenges you faced with RayAnn’s health?

"We knew that RayAnn had epilepsy and cerebral palsy but honestly we didn't know how much neglect and abuse had affected her diagnosis. We were on a hard road of highs and lows and hospitalizations and different medications and ER visits."

How did you come to consider medical cannabis as a treatment option for Rayan?

"We had done all that modern medicine had to offer. We had her on four anti-seizure medications and she was actually doing her worse than she's ever done. That's when we really kind of started looking for other treatments. We saw the CNN documentary by Dr. Sanjay Gupta titled 'Weed' and my husband and I just sat there like in awe. This little girl that we're watching on TV is just like Rayan and her family trying this."

What has been the impact of medical cannabis on Rayan's health?

"We started RayAnn on high CBD oil on September 19th of 2015. Within the first week we started seeing some small changes. Things like she weren't drooling as severely, she wasn't falling as much, her eyes seemed to be clearer and she just seemed to be a little bit more cognitive. A month into it we started realizing, “Hey we're having seizure free days!” RayAnn is now over two years seizure free and she's completely weaned off her clonazepam and almost completely weaned off her last seizure medication."

What is your message to other parents considering medical cannabis for their children?

"I hope that other patients and families will consider this for their children early on as a treatment option because it is something we can't ignore because it is medicine and it is truly helping so many patients."

A Practical Guide

What are the recommended dosages of CBD for epilepsy and seizure disorders?

The recommended dosage of CBD for epilepsy and seizure disorders can vary depending on the individual’s body weight, the severity of their condition, and their individual response to CBD. Although the FDA-approved, CBD-based drug Epidiolex is typically started at a dosage of 2.5 mg/kg twice per day for the treatment of certain types of epilepsy, when using a commercially available product one may begin with much less. It is advised to consult with your healthcare provider to understand the interactions CBD may have with the medications you are taking. If you are looking for free support and education when it comes to dosing guidance, or how to speak with your doctor about potential CBD use, you may also reach out to the care team at Realm of Caring Foundation.

What are the different ways to administer CBD and which is most effective for epilepsy patients?

CBD can be administered in several ways, including oral ingestion (such as capsules, oils, and edibles), sublingual administration (where it’s placed under the tongue), topical application, and inhalation. The most effective method of administration for epilepsy patients is typically oral ingestion, as this allows for precise dosing and provides a longer duration of effect compared to other methods. For example, Epidiolex is administered orally.

 

Are there any potential side effects or risks of using CBD for epilepsy?

Some individuals might experience side-effects like dry mouth, diarrhea, reduced appetite, drowsiness, and fatigue, though many patients report no adverse effects from using CBD to treat epilepsy [5]. CBD can also interact with other medications, including certain antiepileptic drugs, which can affect their efficacy and safety. Additionally, non-FDA regulated CBD products might pose a risk associated with the unreliability of the purity and dosage.

Despite the potential for some side effect, these are usually less adverse than those experienced from traditional epilepsy medication.

 

How long does it typically take to see results from using CBD for epilepsy?

The time it takes to see results from using CBD for epilepsy can vary widely depending on the individual. Some people may notice an improvement in their seizure control within a few days to weeks of starting CBD, while others may require a longer period of time or may not respond to CBD treatment at all. It’s important to have regular follow-ups with a healthcare provider to monitor the individual’s response to CBD treatment and adjust the dosage as needed.

Please note that while CBD has shown promise in the treatment of certain types of epilepsy, more research is needed to fully understand its efficacy and safety. Always consult with a healthcare provider before starting or changing any treatment regimen.

 

Top Online Resources

  • CURE Epilepsy

    An organization dedicated to funding patient-focused research. They provide information about the latest research developments and opportunities to get involved in advocacy work.

  • Epilepsy Foundation

    A national non-profit with over 50 local organizations throughout the United States, the Epilepsy Foundation leads the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives.

  • American Epilepsy Society

    A professional community of physicians, scientists, nurses, psychologists, and other professionals interested in epilepsy. The website offers resources for professionals as well as patients and families.

  • International League Against Epilepsy

    A global organization of physicians and other health professionals working towards a world where no person's life is limited by epilepsy.

Legal and Regulatory Considerations

The use of CBD for the treatment of epilepsy has gained significant attention in recent years. Despite some promising findings, the legal considerations and guidelines for its use can vary greatly across different regions and countries.

 

Legal Considerations for Using CBD for Epilepsy in Different Regions/Countries

The legal status of CBD for epilepsy treatment varies widely across the globe. In the United States, the FDA approved Epidiolex for the treatment of two severe forms of epilepsy: Lennox-Gastaut syndrome and Dravet syndrome[1]. However, the legal status of other CBD products varies at the state level. Some states allow the use of CBD for medical purposes, while others do not. It’s important to check the specific laws in your state before using CBD for epilepsy or any other medical condition.

Internationally, the legal status of CBD also varies. Some countries have fully legalized the use of CBD for medical purposes, while others have not. It’s crucial to check the specific laws in your country or region before using CBD for epilepsy or any other medical condition.

 

Guidelines from Health Organizations and Regulatory Bodies on CBD Usage for Epilepsy

Several health organizations and regulatory bodies have issued guidelines on the use of CBD for epilepsy. The World Health Organization (WHO), for example, has stated that CBD may be a useful treatment for epilepsy. However, the WHO also notes that more research is needed to fully understand the safety and efficacy of CBD for epilepsy and other medical conditions [2].

In terms of dosage, the FDA-approved drug Epidiolex has specific dosing guidelines based on body weight. However, the appropriate dosage of other CBD products can vary depending on factors such as the concentration of CBD in the product, the specific condition being treated, and the individual’s body weight and overall health; hence one should consult a healthcare provider to determine the appropriate dosage of CBD for epilepsy.

 

Future Research and Developments

What are the current gaps in research regarding CBD usage for epilepsy and what studies are being conducted to address these?

Identifying gaps in research is a crucial part of any search for effective treatment. In the context of CBD usage for epilepsy, these gaps could be in the form of methodological gaps, data gaps, demographic gaps, or even disagreement gaps [3].

A 2020 review of CBD research found that adults are underrepresented in clinical trials. It also suggests that more research is needed to determine if there are any adverse cognitive, behavioral, or even psychiatric long-term effects [4]. Very importantly regarding dosage, more research is needed to determin what, if any, tolerance develops in long-term usage of medicinal CBD to treat seizures.

It’s worth noting that research in this area is active and ongoing, with scientists around the world working to understand the potential benefits and risks of CBD usage for epilepsy.

 

What are the potential future developments in the use of CBD for treating epilepsy and seizure disorders?

Predicting future developments in any field of research, including the use of CBD for treating epilepsy and seizure disorders, can be challenging. It often involves extrapolating from current trends and advancements, which can be subject to change as new information becomes available.

However, based on the current trajectory of research, some potential future developments could include:

 

Improved understanding of how CBD works

As research continues, scientists will likely gain a better understanding of the exact mechanisms by which CBD affects the brain and helps to control seizures. This could lead to more effective use of CBD in treatment plans and even the development of synthetic analogues.

New delivery methods

Researchers are continually exploring new ways to administer CBD, which could make it easier for patients to use and potentially increase its effectiveness.

More targeted treatments

As we learn more about the specific types of epilepsy and seizures that respond best to CBD, it may be possible to develop more targeted treatments that are tailored to individual patients.

Better regulation and standardization

As the use of CBD for epilepsy becomes more widespread, we can expect to see improvements in the regulation and standardization of CBD products. This will help to ensure that patients are receiving a safe and effective product.

Conclusion

Far from being a last resort, the coming years might see CBD emerge as a standard therapy for epilepsy and other seizure disorders. Every year, more detailed and targeted studies are emerging to support anecdotal accounts of reduced frequency of seizures from treatment with CBD. For the millions of people living with this condition, CBD has the potential to let them live their lives less encumbered by seizures and without the side-effects of traditional pharmaceutical medications like Clonazepam. If you think CBD might be an effective treatment for yourself or a loved one, talk to your physician to get further guidance.

We plan on watching these developments closely to help you stay informed of the potential for CBD as a treatment for epilepsy.

 

Sources

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