Treating epilepsy has changed in many ways over recent years, especially with the introduction of cannabidiol (CBD). For people with severe and hard-to-treat types of epilepsy, many wonder if CBD can help reduce seizures. The answer is often yes, but there’s a big difference between using a regulated, FDA-approved medicine and using other CBD products that aren’t as strictly controlled. This article looks closely at how CBD works in epilepsy, its approved uses, its off-label use, and what patients and caregivers should know in practice.
CBD has gone from being an old remedy to a modern medicine, showing both its potential and the issues around its use. Early stories and studies suggested it could reduce seizures, but scientific research was needed to prove its real effects. Approved CBD medicines now bring hope to many people who still have seizures despite trying other treatments.
What is CBD and How Does It Affect Epilepsy?
Cannabidiol (CBD) is getting attention for how it might help with brain-related conditions like epilepsy. Unlike THC (Δ9-tetrahydrocannabinol), which makes users feel “high,” CBD does not cause these effects. This part is very important when using CBD in medicine since patients and doctors usually want to avoid mind-altering side effects.
CBD is just one of more than 100 chemicals found in cannabis plants, which have a long history in medicine. It was separated out in the 1940s, opening the door for scientists to study its different possible uses, including pain, anxiety, and especially epilepsy.
What Is Cannabidiol (CBD)?
CBD is a type of chemical (called a phytocannabinoid) that comes from varieties of cannabis like Cannabis sativa and Cannabis indica. The term “cannabis” is used by scientists and drug companies, while “marijuana” often refers to the dried leaves and flowers. CBD is different because it doesn’t cause a “high,” making it a better choice for some medical problems-especially where patients need to stay alert.
As medical marijuana has become more common, differences between the plant’s chemicals are clearer. CBD is preferred by many for its possible benefits in seizures without the unwanted mind-altering effects of THC.
How Does CBD Interact with the Brain and Seizures?
Researchers are still figuring out exactly how CBD helps stop seizures, but it seems to work in several ways. Unlike THC, which mainly affects CB1 brain receptors, CBD only weakly interacts with both CB1 and CB2. Still, it appears to make seizures less likely or less severe by affecting several different brain systems, including serotonin and GABA, as well as certain calcium and NMDA channels. Some studies in animals suggest it does not work through sodium channels like many traditional drugs but through other newer pathways, especially in rare types of childhood epilepsy.
Types of Epilepsy Where CBD May Help
CBD has shown the most promise in certain types of severe childhood epilepsy. The first FDA approval for a CBD medicine, called Epidiolex, was for Dravet syndrome and Lennox-Gastaut syndrome.
- Dravet syndrome (DS): A rare, severe epilepsy in children, often triggered by fever, with hard-to-control seizures.
- Lennox-Gastaut syndrome (LGS): Another rare and severe epilepsy in children, with multiple seizure types and developmental problems.
People with these conditions often try many medicines without relief, so new options like CBD are welcome. Early research also suggests CBD might help with other types of tough-to-treat epilepsy, like tuberous sclerosis complex (TSC), CDKL5 deficiency disorder, Aicardi syndrome, Dup15q syndrome, Doose syndrome, and FIRES. While these uses are not officially approved, they are being studied.
FDA-Approved CBD Treatments for Epilepsy
The FDA’s approval of Epidiolex was a major step, showing that CBD medicines can meet the high standards of safety and effectiveness needed for prescription drugs. Unlike supplements or non-prescription oils, this medicine is closely checked to make sure it has a consistent, known dose and good quality. For patients and doctors, this approval means a reliable treatment option, not just something based on stories or unproven claims.
What Is Epidiolex and How Is It Used?
Epidiolex is an oral medication made from highly purified CBD, containing almost no THC. Its production makes sure that each dose contains the same amount of CBD, helping doctors predict how it will affect each patient.
- How it’s used: Epidiolex is added to other seizure medicines, not used by itself. It’s usually given twice a day, with starting doses depending on the specific epilepsy type and the patient’s weight. The dose is increased slowly to find the amount that works best with the fewest side effects.
Epilepsy Syndromes with FDA Approval for CBD
| Condition | Age Range | Date Approved |
|---|---|---|
| Dravet syndrome (DS) | 2 years and older | 2018 |
| Lennox-Gastaut syndrome (LGS) | 2 years and older | 2018 |
| Tuberous sclerosis complex (TSC) | 1 year and older | 2020 |
Use for any other epilepsy type is called “off-label” and isn’t officially approved, though research is ongoing.
Epidiolex Effectiveness: Key Clinical Trial Results
- Dravet syndrome: In one major study, patients had about a 39% drop in convulsive seizures with CBD versus 13% for placebo. About 43% had at least half as many seizures as before.
- Lennox-Gastaut syndrome: CBD led to a 19-22% drop in drop seizures compared to placebo, with up to 39% of patients halving their drop seizures.
- Tuberous sclerosis complex: CBD led to a 37-43% drop in total seizures.
These numbers, while not perfect, are a big improvement for patients who still have seizures despite many other medicines. Some families also noticed better overall quality of life.
Standard Dosage and How to Take Epidiolex
- For Dravet or Lennox-Gastaut: Start with around 2.5 mg/kg twice daily, increase every week or so based on the patient’s response (up to 20-25 mg/kg/day in some cases).
- For TSC: The usual maximum is 25 mg/kg/day; higher doses did not show added benefit.
People should closely follow their doctor’s instructions, as the best dose varies by individual.
Off-Label Use of CBD in Epilepsy
Doctors sometimes prescribe medicines for problems not listed in the official label-this is called “off-label” use. With CBD, off-label use is mainly for patients whose seizures aren’t controlled by current treatments and who don’t fit the exact types mentioned earlier. Some try pharmaceutical CBD for other epilepsy types like CDKL5 deficiency disorder or Aicardi syndrome, usually after talking carefully with a medical specialist.
Who Might Try CBD Off-Label?
People who have tried many standard medicines without success, especially for rare epilepsy types, might be considered for CBD. This is usually discussed in detail with a specialist-looking at any possible good effects seen in case reports or small studies, while being open about the risks and unknowns.
What Do Real-World Cases Say?
Before FDA approval, many families tried CBD oil through self-sourced products or special programs. Some reported big drops in seizures. A few small studies found that children with rare epilepsies had fewer seizures after starting CBD, sometimes allowing them to cut down on other medicines. While these reports are promising, larger studies are needed.
Risks and Concerns with Off-Label Use
- Product Reliability: Most non-prescription CBD oils are not tested for quality or dose. Some contain much more or much less CBD than the label says, and some have contaminants.
- Unknown Drug Interactions: CBD could change how other medicines work-especially anti-seizure drugs-leading to unexpected side effects or changes in seizure control.
- Insurance and Cost: If the use is off-label, getting insurance to pay for CBD is often hard, making treatment expensive.
CBD Compared to Standard Epilepsy Medications
Standard anti-epileptic drugs (AEDs) have been used for many years, but around 30% of patients still have seizures even after trying several medicines. CBD adds a new option, especially for those drug-resistant cases. In most situations, CBD is added to regular medications, not used alone.
How Does CBD’s Effectiveness Stack Up?
- Traditional AEDs: Used as first-choice treatments. Some, like valproate and clobazam, can have serious or uncomfortable side effects.
- CBD: Studies show it can significantly reduce certain seizure types in patients who haven’t responded to other treatments. It is used as an add-on-not usually as a single medicine.
When Might Doctors Suggest CBD Over Other Options?
- When patients have Dravet syndrome, Lennox-Gastaut syndrome, or TSC and have not responded to regular drugs.
- When side effects from other epilepsy drugs are too severe, and doctors want to try something with a different side effect profile.
- When patients and families are looking for extra help after failing many drugs.
Benefits and Side Effects of CBD for Epilepsy
CBD offers important benefits for patients with hard-to-treat epilepsy, mostly by reducing the number of seizures. However, there are also side effects, so knowing the pros and cons helps families and doctors make good choices.
Seizure Reduction with CBD
| Condition | Median Seizure Reduction | 50% Responder Rate |
|---|---|---|
| Dravet syndrome | ~39%-49% | ~42% |
| Lennox-Gastaut syndrome | 37%-42% (drop seizures) | 36%-39% |
| Tuberous sclerosis complex | 37%-43% | n/a |
This means many patients see a major drop in the number of seizures, although seizure freedom is uncommon.
Possible Side Effects and Monitoring
- Sleepiness
- Tiredness
- Loss of appetite
- Diarrhea
- Rash
- Insomnia
- Infections
- High liver enzymes (in blood tests)
Sleepiness happens more if CBD is used with clobazam. Raised liver enzymes are more common if taken with valproate. Because of this, doctors recommend regular blood tests at the start and during treatment.
Cognitive and Quality of Life Effects
Many families report better alertness, mood, and general quality of life in children taking CBD for epilepsy. Animal studies and some human reports say CBD might help with behavior and anxiety too, but some children may get more anxious or have worsened behavior. These effects vary a lot and are watched closely by the medical team.
Drug Interactions and Safety
CBD is broken down in the liver by certain enzymes (CYP3A4 and CYP2C19). It can raise or lower levels of other medicines and vice versa, especially anti-seizure drugs. Careful monitoring is needed to keep patients safe and get the best results.
CBD’s Main Drug Interactions
- Clobazam (CLB): CBD can raise levels of CLB’s active substance, causing more sleepiness. Doses may need to be adjusted.
- Valproate (VPA): Combining with CBD can increase liver enzymes. Blood tests help spot problems early.
- Other AEDs: Small effects seen with several other anti-seizure drugs, but usually less important than with CLB or VPA.
Monitoring for Organ Health and Mental Well-being
- Liver: Regular lab checks before and during treatment.
- Kidneys: No major issues reported so far, but general tests are still advised due to use of many medicines.
- Mental Health: Most patients have no problems, some feel calmer, but a few might have worsened behavior or anxiety-so keep in touch with your doctor.
How Doctors Monitor and Adjust Treatment
- Blood checks: At one, three, and six months, then as needed.
- Close watch for side effects and seizure changes.
- Dose changes: Adjust CBD or other drugs if side effects appear. Sometimes, stopping CBD is needed if serious issues occur.
Legal and Practical Matters in Using CBD for Epilepsy
The rules around CBD are complicated and change over time. The 2018 Farm Bill made hemp-derived CBD legal federally, as long as it has less than 0.3% THC. However, only FDA-approved Epidiolex is approved for medical use in epilepsy. Laws and access vary by state, and insurance coverage is not always easy.
Legal Status and Prescription Differences
- FDA-Approved Epidiolex: Legal everywhere in the US, requires a prescription, tested for safety and dose.
- Other CBD Products (OTC): Not regulated or tested by the FDA, may be legal but are not recommended for treating epilepsy due to quality problems.
Travel, Access, and Insurance
- Travel: Epidiolex can be taken across state lines (with documentation), but some other CBD products might not be legal in every state.
- Insurance: Epidiolex is expensive. Insurance may cover it for approved syndromes, but often not for off-label uses. Appeals can sometimes help.
Ongoing Research and Future Developments
CBD research for epilepsy continues. Over 100 studies are ongoing to see if CBD can help in other syndromes or age groups. Trials are looking at its use in infantile spasms, Sturge-Weber syndrome, and other rare types. Scientists are also comparing plant-based to synthetic CBD to see if one works better or is safer.
- Future questions:
- How safe is CBD with long-term use?
- How does it mix with other medicines or certain foods?
- Which combinations work best for each person?
- What about pregnancy and nursing?
- Why do some people have different results or side effects?
Answering these questions will help doctors and patients make better choices in the future.
Key Points for Patients and Caregivers Thinking About CBD
Managing epilepsy is complicated, and adding CBD into the mix raises more questions. People should first talk to a specialist before trying CBD. Doctors can confirm if someone fits the approved types for Epidiolex, or if it’s worth considering off-label use after other options have failed. They’ll also give advice on potential risks, benefits, monitoring, and how to get the medicine safely.
When to Talk to Your Doctor
- If you are thinking about CBD to help with epilepsy, see your specialist first.
- Discuss your exact epilepsy type, past treatments, and check for possible drug interactions.
- Work with your doctor to come up with a safe monitoring plan (blood tests, seizure diary, etc.).
Practical Steps If You Decide to Try CBD-Based Therapy
- Ask for a prescription for FDA-approved Epidiolex if your doctor thinks it’s right for you.
- Tell your doctor about all other medicines you or your child are on, so they can check for bad interactions.
- Stick to all lab test appointments-especially early on-to check for side effects.
- Work with insurance right away to see if coverage is available, and be ready to appeal if needed.
- If you can’t get Epidiolex and decide to try another CBD product, use only brands that show lab results and talk to your doctor first.
Getting Help and More Information
There are groups and centers that help people with epilepsy and their families. The Epilepsy Foundation and syndrome-specific organizations give advice, news about treatments, and support. Bigger hospitals and epilepsy centers have doctors who keep up with the latest CBD research and can help set up treatment plans and monitoring. Online forums can offer shared experiences and support.
Using these resources, staying informed, and working with health professionals can help families find the best way forward when considering CBD for epilepsy.