CBD Dosing Recommendations and Guidelines for Treatment of Intractable Epilepsy Determining a patient’s ideal dose and formulation for cannabis-based medications is actually fairly similar to the CBD has been shown to reduce the severity & frequency of seizures. Check out the best CBD oils for epilepsy & information on dosage.
CBD Dosing Recommendations and Guidelines for Treatment of Intractable Epilepsy
Determining a patient’s ideal dose and formulation for cannabis-based medications is actually fairly similar to the process for dosing any new pharmaceutical medications that hit the market.
Like most new medications, dosage recommendations and guidelines for cannabidiol (CBD) medicines are best established according to existing scientific research, anecdotal evidence, and individual patient outcomes. The biggest difference is that CBD medicines don’t start out with a dosing range approved by the FDA. Although newly FDA approved drugs include dose ranges approved in clinical trials, the real-world dosing ranges become apparent as more patients use the medication and as both prescribers and patients get a better sense of the dosing they need.
General guidelines for CBD dosing
The dose-finding process will be different for each patient. Because the Texas program is in its infancy, there is a limited knowledge base for physicians at this time; it will grow as more patients join the program and prescribers gain a better understanding of what is working and how patients tolerate CBD treatment. Each patient will need to discover the dosing amount that works best for them. This is what the titration process is all about.
As with every new medication, conservative initial titration and slow dosage increases will minimize the chance of severe side effects, and avoid reaching a dose beyond that necessary to gain control of seizures.
Medically sensitive patients, such as those who are under two years of age or who are taking multiple concomitant seizure medications, should be started at a lower dose and titrated more slowly. Less sensitive patients can be started at a somewhat higher initial dosage.
I devised these guidelines based on available research and clinical trial results, and have refined the approach based on experience with nearly 100 patients I have written prescriptions for since February 2018. They are a starting point, with the expectation that a small portion of patients may require higher doses.
For each patient, CBD dosing will depend on the following:
- Formulation of product (e.g. CBD concentration, THC concentration). Compassionate Cultivation’s Lone Star product is 100 mg/ml CBD with 5 mg/ml THC (0.5%).
- Patient characteristics, including weight, age and the number and type of medications the patient is already taking.*
- Initial dose and rate of titration both need to be considered.
* It is important to note that one common seizure medication often used in refractory patients that has a strong interaction with CBD is clobazam (Onfi). Patients taking Onfi should be started on lower CBD doses and titrated more gradually even if Onfi is the only other seizure medication the patient is taking when initiating CBD treatment.
Low dose initiation in children
- 0.5 mg/kg/day, minimum dose 10 mg = 0.1 ml.
- Increase every 1-2 weeks by 0.5-1 mg/kg/day, rounding to nearest 10 mg (0.1 ml increments) as long as side effects don’t interfere.
- Target dose 2-10 mg/kg/day; average is 2-6 mg/kg/day; higher doses may be tolerated, but we will need more experience with the Lone Star product to understand the ranges our patients need for optimal response with minimal side effects
Low dose in adults (or children weighing >50 kg)
- 25 mg twice daily.
- Increase every 1-2 weeks by 25 mg/dose.
- Target dose 100-300 mg twice daily if tolerated, or stop sooner if seizures stop or side effects prevent further dose increases. Higher doses have been utilized in some clinical trials, but may not be necessary to achieve good seizure control in all patients.
Higher dose initiation in children
- 1 mg/kg/day, minimum 10 mg = 0.1 ml.
- Increase every 1-2 weeks by 1 mg/kg/day, as long as side effects do not interfere.
- If side effects are a problem, go up more gradually with more time between dose increases.
- Target dose 2-10 mg/kg/day, average is 2-6 mg/kg/day. As noted above, higher doses might be tolerated, but we need more experience with the Lone Star product to understand the ranges our patients need for optimal response with minimal side effects.
Higher dose in adults (or children weighing >50 kg)
- 50 mg twice daily.
- Increase every 1-2 weeks by 50 mg/dose.
- Target dose 100-300 mg twice daily if tolerated, or stop sooner if seizures stop or side effects prevent further dose increases. Higher doses have been utilized in some clinical trials, but may not be necessary to achieve good seizure control in all patients.
Other factors to consider for the patient treatment plan
Doses should be given in cheek or under tongue ideally; if swallowed, should be given with some fatty food to increase absorption.
Higher doses have been utilized in some clinical trials, but may not be necessary in all patients to achieve good seizure control. These higher doses may be well tolerated, but we need more experience with the Lone Star product to understand the ranges our patients need for optimal response with minimal side effects.
For the complete Dosing Guidelines document, as well as full references for research and clinical trials on CBD treatment, please visit texasoriginal.com/physicians.
A note on costs
The Lone Star line is available in two quantities: 7.5 mL (containing 750 mg CBD / 37.5 mg THC) for $105; and 15 mL (containing 1,500 mg CBD / 75 mg THC) for $200. Breaking it down further, the retail cost for a single milligram of CBD is approximately 13 cents.
For example, a 25 kg (55 lbs) child who is on a 1.5 mg/kg/day (37.5 mg CBD/day) dose of Lone Star tincture would equate to approximately $146 per month. A 50 kg (110 lbs) adult or child who is taking 3 mg/kg/day (150 mg CBD/day) would equate to approximately $585 per month.
Entering Prescriptions Into the Compassionate Use Registry of Texas (CURT)
The Compassionate Use Program (CUP) allows for research of patient participants in a HIPPA-compliant system. However, the quality of data will depend on how thoroughly prescribers enter prescription information into the system.
Currently the drop-down menus and existing text entry fields have some limitations, so detailed prescriber notes will be important for clearly describing patient histories into the CUP system.
With that in mind, here’s a brief rundown for prescribers of the three-step process for entering patient prescriptions into the CUP system.
The first step is to complete two text entry fields under the patient “Treatment Plan” tab. The following is what I have been utilizing for those fields, but other prescribers may develop their own approaches:
- Monitoring symptoms plan:
- Log number & type of seizures daily
- Watch for somnolence, nausea & vomiting
- Baseline LFTs were drawn & will be followed serially during treatment
The prescriber must indicate both duration of therapy and the amount prescribed under the patient Treatment Plan. I’ve chosen three months as a standard duration of therapy, but the amount prescribed may or may not last three months. Duration depends on the patient’s personal titration schedule, which can’t be predicted at the time of the first prescription. Once a patient’s ongoing dose is established, the amount prescribed will become more readily predicted. Larger prescription volumes may be especially useful for patients living far away from the dispensary, to help minimize travel times and/or delivery costs.
The prescription can be written “as directed,” but the SIG line is too short to allow for entry of titration instructions, so those specifics will need to be communicated to the patient or their guardian directly, independent of the prescription. The route of administration is not included as a field for entry. The addition of “buccal” or “sublingual” into the dose instruction is possible, but can also be communicated directly to the patient or guardian.
Compassionate Cultivation’s CBD tincture product comes in two sizes, 750 ml or 1500 ml, which I’ve instructed to dose in the buccal pouch. Dosing enterally (e.g. by G tube or swallowed) will result in some absorption by the liver and decrease the amount that enters circulation. But enteral dosing could be done if the volume is too large to instill in the buccal pouch, or for patients prone to aspiration, where buccal delivery could be risky.
The second step for prescribers when entering prescription information into the CUP is to fill out the Prescription section, which will be partially completed by information flowing from the Treatment Plan tab. The Prescription section allows prescribers to designate a dispensary, which will provide patients with specific instructions regarding their prescriptions.
Based on my close association with Compassionate Cultivation throughout their development and my confidence in their products, I specify this dispensary on every prescription. In doing so, I am assured that a quality product with consistent content will be delivered to the patient every time.
The final section for prescribers to fill out is the Safety & Efficacy tab, where they will enter information about seizure type, duration and frequency. The drop-down menu for seizure type does not include an option for epileptic spasms. Categorizing seizure frequency into a single description proved challenging to me, so I used the “Notes” field to add details that I felt would be relevant to research and to tracking response to treatment. I also added notes about concomitant medications when it was pertinent to the patient dosing plan – particularly for patients taking multiple different medications at the same time, or patients taking Onfi as a co-treatment with CBD.
CBD Oil for Seizures & Epilepsy: Benefits, Dosage, & Side Effects
Research suggests CBD is a safe and effective treatment for seizure disorders.
1 in 10 patients are seizure-free after taking CBD oil & 70% had dramatic reductions in symptoms.
Epilepsy is the fourth most common neurological disorder, according to the Epilepsy Foundation.
CBD is reported to be one of the most effective treatment options for this condition — even for types of epilepsy proven to be difficult to treat with conventional medicine.
In this article, we’ll discuss exactly how effective CBD is for treating epilepsy, which types of epilepsy CBD works best for, and how to source the right kind of CBD to use.
MEDICALLY REVIEWED BY
Carlos G. Aguirre, M.D., Pediatric Neurologist
Updated on March 23, 2022
Table of Contents
$49 – $229
Royal CBD Oil 30 mL
5 / 5
Total CBD: 500 – 2500 mg Potency: 16.6 – 83.3 mg/mL Cost per mg CBD: $0.12 – $0.18 Extract Type: Full-spectrum THC Content:
The Benefits of CBD Oil For Epilepsy
The benefits of CBD oil for epilepsy include:
- Alleviates convulsions
- Protects the neurons from damage
- Regulates excess brain activity
- Reduces brain inflammation
- Promotes GABA activity in the brain
Despite all the research we have in the effects of CBD for epileptic conditions, we still don’t know the exact mechanisms involved.
Seizures are incredibly complex, and the causes generally involve multiple separate organ dysfunctions combining to produce symptoms. Therefore, deciding which part of this interaction is improved with CBD is hard to pinpoint.
Here are the current theories based on clinical, in vivo, and in vitro research findings.
1. Reduces Epileptic Convulsions
Epileptic-induced rodents were given various concentrations of CBD. The highest-dose group (100 mg per kg) showed significant improvements in muscle contractions during seizures .
2. Regulates Electrical Activity in The Brain
Seizures are characterized by excessive and chaotic electrical activity in the brain.
Electrical activity is largely regulated by the vanilloid receptors (TRPV).
CBD and CBDV have both been shown to regulate these vanilloid receptors (TRPV1) in the brain .
When TRPV1 is overactivated for any reason, it induces epileptic seizures. CBD and CBDV have been found to control the overactivity of this receptor in the brain — potentially leading to fewer seizures.
3. Protects The Brain Cells
CBD and many other cannabinoids in the cannabis plant have been shown to have broad, non-specific neuroprotective effects on the brain. Some of these neuroprotective effects are thought to be partly responsible for CBD’s powerful anti-epileptic activity.
CBD is protective for other neurological conditions, including:
4. Inhibits Brain Inflammation
As with most neurological disorders, inflammation is a huge factor in epilepsy .
A lot of evidence suggests CBD is an effective anti-inflammatory compound for the brain — potentially alleviating one of the significant factors for neurological disorders such as epilepsy.
CBD is effective because its fat-soluble nature allows it to pass through the blood-brain barrier efficiently. It also offers anti-inflammatory effects through some different inflammatory messengers and immune-regulating cells [11, 12, 13].
What’s The Dose of CBD Oil For Seizures?
Figuring out the right dose of CBD for epilepsy is difficult — and will likely require some trial and error.
Everybody responds to CBD differently. Some people require high doses; others much lower. You won’t know for sure the ideal dose you need without experience.
In general, people with epilepsy require higher-than-average dosing to get the maximum amount of benefits from the compound. This is why we recommend buying a high-potency CBD oil. If you buy a low-potency CBD product and then realize you need a high dose to see any benefits, you’re likely to need to take the entire bottle for a single dose. High-potency oils last longer by delivering the same amount of CBD in a smaller amount of oil or capsules.
With that said, we recommend starting at a low dose and building up gradually over time until you reach a dose that provides the level of relief you’re looking for.
Recommended strength for epilepsy: high strength
We’ve outlined the standard dosage schedule below based on weight and strength.
To learn how to calculate these doses yourself, check out our Guide to Dosing CBD.
CBD Dosage Calculator
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Tips for Getting the Most Out of CBD Supplements for Epilepsy:
- Always seek out high-quality CBD products to avoid contamination with heavy metals or pesticides — which can make epilepsy even worse
- Use full-spectrum extracts for the best results — research suggests these extracts are more effective than isolated or purified CBD products
- Increase the dose gradually — start with a low dose and build up to a higher dose until symptoms are reduced
- Combine CBD with other antiepileptic treatments and dietary changes — such as a ketogenic diet, regular exercise, and psychotherapy when appropriate
- Take CBD regularly — the effects are more pronounced after several weeks of regular use
What is Epilepsy?
Epilepsy is a spectrum of disorders involving the primary symptom: unprovoked seizures. Other health issues may or may not also be present. Everybody experiences epilepsy differently, and seizures can vary significantly in frequency and severity.
Some epileptic patients suffer from seizures one or two times per year, while others can experience nearly nonstop seizures throughout the day.
Seizures can involve whole-body convulsions (grand mal), remain confined to one limb (Jacksonian seizures), or involve lapses in consciousness (petit mal). We’ll include more on the different types of seizures later.
The seizure itself is the result of dysfunctional electrical activity in the brain — which can originate from anywhere in the brain. This abnormal electrical activity can remain confined to the area in which it started, or it can spread throughout the entire brain. In most cases, the latter is more severe.
People suffering from epilepsy usually have the condition for the rest of their life. However, it can come and go from one year to the next. Some people report being seizure-free for up to six years before having another seizure.
There are many different forms of epilepsy and numerous potential causes for each one. It can, therefore, be difficult for doctors to pinpoint the exact cause of the seizures in many cases.
Symptoms of Epilepsy
- Temporary confusion
- Prolonged staring
- Uncontrollable jerking movements
- Loss of consciousness
- A sudden sense of intense fear or anxiety
- Lapses in memory
What Causes Seizures & Epilepsy?
Seizures are the primary symptoms of epilepsy. Although epilepsy is characterized by recurring seizures, there are other causes, such as high fever or head injuries.
The brain is made up of billions of specialized cells called neurons. They’re designed to transfer messages throughout the brain and body using electrical impulses. To do this effectively, the neurons in the brain need to work together.
In the event of a seizure, large groups of neurons will send messages at the same time (hypersynchrony), disrupting normal brain function. This can cause changes in taste, vision, sound, smell, language, posture, memory, emotion, and consciousness.
Some seizures will affect the entire brain; others only specific regions. The severity of the electrical activity and how much of the brain is affected will determine the individual side-effects. Ultimately, no seizure is the same.
Causes of Seizures May Include:
There are different forms that seizures can happen depending on the individual and the type of epilepsy they have. Some people will experience one, two, or all three.
Three Types of Epilepsy
There are three different types of epilepsy.
The main differentiating factor for epilepsy is the types of seizures experienced, but there are other factors depending on the site of electrical dysfunction in the brain and the underlying cause of the condition.
Over the past decade, a group called the International League Against Epilepsy (ILAE) has been working hard to standardize the terminology used in diagnosing and describing epilepsy.
Here are the definitions listed in their 2017 outline.
1. Focal Onset
Focal onset epileptics experience abnormal electrical activity in only specific regions of the brain. They used to be called “partial seizures.”
There are four types of focal seizures:
- Focal-aware seizures — the patient is aware of the seizure while it’s taking place.
- Focal-impaired awareness seizures — the patient is unaware or unconscious during the seizure.
- Focal motor seizures — these involve movements such as rubbing hands together or twitching during the seizure.
- Focal non-motor seizures — these do not involve muscle twitches or movements, but instead shifts in thinking and emotions during the seizure. Waves of heat or cold, a racing heart, or intense emotions are common.
2. Generalized Onset
Generalized onset seizures involve abnormal electrical activity throughout both sides of the brain, resulting in widespread side effects throughout the body.
Within generalized onset epilepsies, there are two types — motor onset and non-motor onset.
Motor onset conditions used to be referred to as “grand mal” seizures — in some circles, they still are. They result in full-body seizures and an inability to control the body while the seizures are occurring. They can last anywhere from a few seconds to a few hours. CBD is useful for these types of seizures due to its ability to relax muscle contractions around the body.
Non-motor onset seizure conditions are usually called “absence” seizures. They involve periods of staring into space or repetitive movements (such as tapping hands or licking lips). These types of seizures make it seem as though the person having the seizure is no longer there — hence the name “absence seizures.”
3. Unknown Onset
As the name implies, any seizure where the source of the seizure can’t be identified is referred to as having an unknown onset. These seizures are especially challenging to treat.
The new terminology outlined by the ILAE does not change the characterization of epileptic syndromes — of which there are quite a few.
The Most Common Epileptic Syndromes Include:
- Lennox-Gastaut Syndrome (LGS)
- Dravet Syndrome
- Juvenile Myoclonic Epilepsy (JME)
- Benign rolandic epilepsy (BRE)
- Childhood absence epilepsy (CAE)
- Infantile spasms (or West syndrome)
The Risks of Epilepsy
Epilepsy can endanger the safety of those affected. It can be risky to drive, work, or even cross the street. If a seizure comes on suddenly, those affected are unlikely to get out of harm’s way.
Conventional Treatment Options for Epilepsy
It’s important to remember that epilepsy is a spectrum. Certain medications or other treatment options tend to work better for some forms of epilepsy over others. In some cases, no conventional treatment works for the patient’s requirement — these are usually the people that begin using CBD.
Medications for Epilepsy Include:
Medical Marijuana for Epilepsy
It’s clear that marijuana is a useful supplement for different forms of epilepsy, including both generalized and focal, along with some epileptic syndromes.
Studies have shown that CBD is the active constituent of these effects. Interestingly, a meta-analysis recently showed that although any form of CBD offers benefits, a full-spectrum CBD extract containing a variety of other cannabinoids was more beneficial and had fewer side effects overall .
For this reason, we recommend using a quality full-spectrum product over pharmaceutical versions such as Sativex® or Epidolex®, as well as CBD products made from 99.9% pure CBD isolates.
It’s likely the other cannabinoids in the full-spectrum extracts, along with the terpenes and various other phytochemicals, work synergistically to produce the associated benefits.
The Story of Charlotte Figi
Charlotte Figi is an American girl with a severe case of Dravet syndrome who changed the way we treat epilepsy forever.
When Charlotte was just six years old, her parents signed a “do not resuscitate” order for their little girl. This meant that in the event of an emergency that saw Charlotte stop breathing or her heart stops beating, medical professionals would not be allowed to step in and save her life.
Her symptoms were very severe — she’d often experience hundreds of seizures each week. She could barely speak, and her quality of life was at an all-time low.
Even after trying numerous medications, the Figis saw virtually no improvement in their daughter’s condition.
It wasn’t until 2011 that the Figis decided to try cannabis for their daughter — and it worked.
Here seizures dropped from 1200 per month to about 3 — and the ones she had were significantly less severe. She can now talk, play, and live a life much closer to “normal.”
The media attention that followed this story exploded and is arguably the catalyst that led to the establishment of the CBD market we’re now experiencing. This is because it was discovered that CBD was the compound responsible for treating Charlotte’s condition. Researchers flocked to test it out on other types of epilepsy, as well as other medical conditions.
Guide to Using CBD for Epilepsy
CBD is becoming one of the most common treatment options for epileptics. However, with poor regulations in the CBD market, there is an alarming amount of low-quality products containing contaminants such as heavy metals or pesticides that can damage the neurons and potentially make epilepsy symptoms worse.
There are also a lot of companies selling oils with specific amounts of CBD listed on the bottle — but when tested by third parties, they’re found to contain only a fraction of the amount advertised.
When it comes to using CBD for epilepsy, it’s critical that you use only high-quality, contaminant-free, and high-potency products.
It’s also been proven through meta-analysis that a full-spectrum extract rich in CBD and other cannabinoids and terpenes has the biggest impact on epileptic conditions .
For this reason, we recommend searching specifically for a product with at least 50 mg per mL of CBD that is made from certified organic hemp and has publicly listed third-party test results.
How to Get a Prescription for Medical Cannabis & CBD
Although every country has its own rules regarding the use of medical marijuana, most countries with a medical program will prescribe it for epilepsy.
The National Institute of Health and Clinical Excellence is working on official guidance for prescribing medical cannabis.
Epilepsy treatment is expected to be one of the primary focus points for this piece, which is expected to be completed at the end of 2020.
If your country (or state) doesn’t have a medical marijuana program, low-THC hemp extracts are an excellent alternative. These are classified as nutritional supplements in most countries and are non-psychoactive.
Finding the Right CBD Supplements for Epilepsy
There are so many different cannabis companies selling CBD oils, capsules, and topicals — it can be hard to separate the good from the bad.
As a general guide, always look for the following:
- Products containing full-spectrum extracts
- Potencies of at least 50 mg per mL
- Productos with third-party lab tests posted
- Products made from certified organic hemp
- Extracts containing low THC (less than 0.3%)
1. CBD Oils For Epilepsy
CBD oils are the most popular form of CBD because it simplifies dosing, it can be stored for long periods of time, it is one of the cheapest forms of CBD and has high bioavailability.
2. CBD Capsules For Epilepsy
CBD capsules provide another great option for people who want a simple way to get their dose without having to measure or taste CBD oil. However, capsules are slightly more expensive on average than oils.
3. CBD Edibles For Epilepsy
Edible CBD products are also available — but aren’t recommended for daily CBD supplementation due to the high sugar content and inconsistencies with dosing. These are great for occasional use to make your CBD use more interesting (and flavorful) but not ideal for everyday use.
4. CBD Vape Oils & E-Liquids For Epilepsy
CBD vape oils and vape pens are also an option, and many people with epilepsy choose to use this method to get their dose of CBD. The benefit with vape oils is that the CBD enters the bloodstream almost immediately, offering fast relief from symptoms.
Unless vaping irritates your lungs, or you’d rather avoid it altogether, keep some vape oil on hand to address symptom flare-ups promptly without having to wait for oils or capsules to absorb through the digestive tract.
CBD & Epilepsy: What the Research Says
Cannabidiol (CBD) is one of over 66 different cannabinoids found in the cannabis plant.
There are two main cannabinoids in the cannabis plant that account for more than half the total cannabinoid content. CBD is non-psychoactive (meaning it won’t make you feel high). It’s also the primary ingredient responsible for the antiepileptic effects of the cannabis plant.
A pharmaceutical CBD preparation — Epidolex (cannabidiol) — was approved in 2018 for the treatment of Lennox-Gastaut syndrome (LGS) and Dravet syndrome — two forms of epilepsy known for resisting treatment.
A recent meta-analysis involving 670 people with various forms of epilepsy found that 71% of people taking CBD-rich full-spectrum extracts experienced reduced seizure frequency .
Roughly 40% of the people in this study had the frequency of seizures cut in half, and a quarter had an incredible 70% drop in episodes.
Amazingly, 10% of the group were reported to be seizure-free at the end of the study.
CBD works — there’s no doubt about it. The hard part now is determining exactly how it works.
We’re still uncovering exactly how CBD is useful for treating epilepsy and seizures. Even GW Pharmaceuticals admits on its website that the mechanism of action isn’t clear. GW Pharmaceuticals is the creator of Sativex® — the new cannabinoid-based pharmaceutical that’s been gaining a lot of hype lately as a breakthrough new treatment for epilepsy.
There are a few good theories, however.
Final Verdict: Can CBD Help With Epilepsy & Seizures?
CBD is perhaps one of the most exciting new treatment options for epilepsy — including epileptic syndromes such as Dravet syndrome that are problematically resistant to treatment.
To get the most out of CBD supplementation for epilepsy, a high-quality, full-spectrum extract should be used. It’s also recommended to opt for a high-potency option because, in most cases, high doses are needed to get the same level of benefits reported in the scientific literature.
Check out some of our recent reviews to vet a company and their product before you make a purchase. Remember only to buy products that are made from certified organic hemp and have been tested for purity and potency by third-party labs.
If a product doesn’t check these boxes, it’s wise to avoid taking them for epilepsy. You don’t want to make symptoms worse.