Medicinal marijuana has been found to have several successful anecdotal instances of treatment in cases of epilepsy. Anecdotal evidence of cannabidiol (CBD) points to its effectiveness in controlling epileptic seizures. Many patients have been turning to CBD oil based on word of mouth through other patients who have found it to be effective when other medications and therapeutic methods have proven unhelpful in easing their symptoms. Several patients report problems with side effects of other medications, such as Keppra, Dilantin, depakote, trileptal, and Phenobarbital, and other anti-epileptic drugs (AEDs), that either have side effects or cause allergic reactions. Patients are understandably hesitant to increase dosages of these medications when they need to see a greater effect on their symptoms, but do not want to increase their discomfort that the medications have caused in the first place.
There are reasonable medical explanations for why some people who have turned to CBD oil in spite of the availability and regulation of other medications have seen benefits for their neurological problems, such as seizures. The endocannabinoid system in the body regulates several neurological functions. When cannabinoids, free of the psychoactive compound THC found in marijuana, is taken into the body (which is possible through a variety of administration methods), they have an effect on this endocannabinoid system because it contains receptor cells that are used for chemicals, made within the body on its own, that are similar to cannabidiol.
Studies conducted on rodents, as reported by the British Epilepsy Association, have shown a reduction in severity and lethality of temporal lobe seizures and partial seizures when given pure CBD. Two different models were used in the study: one with penicillin, and a pilocarpine model. In the first, the mortality percentage was reduced, and the latter model showed a reduced percentage of animals experiencing the most severe seizures. All doses of CBD showed a reduction in tonic-clonic seizures across all of the tested animals. The Association reports CBD as an effective anticonvulsant in these cases, and believes it invites further attention with regard to its effectiveness in combination with a lack of psychoactive effects.
The Journal of Clinical Pharmacology has published similar findings, showing that in both acute and chronic doses of CBD, no psychologic or physical symptoms suggestive of psychotropic or toxic effects were found, but several volunteers in their studies have reported sleepiness. These test subjects were compared with a placebo control group, showing more sleepiness and less dream recall abilities than the placebo group. Seven out of eight patients saw improvement in seizures, compared to only one test subject from the group of patients on a placebo. The Journal of Pharmacology and Experimental Therapeutics published a review of several studies on CBD interactions with other anticonvulsant medications, finding it to be similar in effectiveness to the medicines for major seizures and having the ability to enhance the anticonvulsant effects, but finding that it reduced the effectiveness of medications that were better suited for minor seizures.
But, the anecdotal evidence still begs the question of what studies have been, or can be, done in order to prove the effectiveness of CBD oil as a regular treatment for epileptic seizures in adults or children.
Regulation of some kind would be helpful for people seeking treatment outside of prescribed medications; some patients have reported fraud in buying CBD oil through some online vendors via Amazon, for example, and some brands are growing in their reputations despite not being formally regulated as medicine. Additionally, even when patients have tried to find CBD derived from either cannabis or hemp through vendors who test the substances for potency and purity, some have found that seizures increase if too high of a dose is given, resulting in experimenting with gradual dose increases on their own. Many CBD oils that are found through private vendors contain only trace amounts of cannabidiol, and may not be effective in treating seizures beyond a placebo effect. One well-known, privately distributed version of the drug is known as “Charlotte’s Web,” which is a specially-bred cannabis compound very low in THC and high in cannabidiol. It has been shown, anecdotally, to be an effective treatment, but its trace amounts of THC are still a cause for concern to some. THC has been shown to be a proconvulsant in some healthy animals.
The Epilepsy Foundation has published a page on their website reporting potential benefits of using medicinal cannabis: controlling seizure conditions in adults and children with Lennox-Gestaut syndrome; controlling seizures in children with Dravet syndrome; and, cannabidiol influences systems in the body that are affected by seizure syndromes, without producing psychoactive effects related to THC in cannabis, and may positively influence other forms of epilepsy.
The website also reports several drawbacks to CBD oil and other forms of cannabis, largely due to a lack of formal regulation in its study and distribution.
Of the few controlled studies that have been performed, many have been what is called “open-label,” referring to a study where the patient and doctor both know what drug is being administered, meaning that several of these studies have not had a placebo control group to counteract results that may have been due to a placebo effect. Of these same studies, side effects have been found and included sleepiness, diarrhea, fatigue, decreased appetite, and interactions with other antiepileptic medications.
There is one form of CBD that has been identified and regulated by the Food and Drug Administration, known as Epidolex, which is made from a 99% oil-based cannabidiol extract and is purified and measured for consistency in each dose. The FDA has given permission to some epilepsy centers to distribute this product to a limited number of patients under their expanded use policy, meaning that certain medications, under specific circumstances such as a lack of response to other clinically tried therapeutic strategies, may be administered to patients even though they have not had the required double-blind, clinical trials that would move the druge from “investigational medicine” status to being a fully-fledged, FDA-approved and regulated medication with proven benefits that outweigh its risks to a patient.
The drug now marketed as Epidolex was researched in a study, led by Dr. Orrin Devinsky, a neurologist from the New York University Langone Medical Center (herb.co), titled “Efficacy and Safety of Epidolex (Cannabidiol) in Children and Young Adults with Treatment-Resistant Epilepsy” and was released to the public by the American Epilepsy Society early in 2017. The study saw a reduction in the frequency and severity of seizures in children and adults. It appears to be well-tolerated — a finding that is consistent with the Epilepsy Foundation’s report that some patients have had severe reactions to cannabidiol oil, but that many only experienced mild to moderate side effects in combination with the positive effects of CBD oil on seizures and their related symptoms.
While many sufferers, as previously stated, have turned to finding vendors — not regulated compounds and their providers — physicians still maintain that patients and their families exercise caution if they choose to pursue unregulated options as a last resort for treating, controlling, or curing their conditions. The danger is especially present in cases where an unauthorized provider may not be able to control their product’s potency enough to replicate it from dose to dose, which may cause seizures and symptoms to worsen, or return if they had previously been absent for a time. Additionally, it is a risk to reach out to these vendors in order to procure cannabidiol for self-medication when there is no way to know for certain whether or not the compounds they provide are free of THC, which can also have significant negative outcomes for a patient for their seizures, side effects, or exacerbation of other conditions. The situation is even riskier for patients who live in states where cannabidiol is against the law and choose even more obscure vendors as a last resort.
Many roadblocks to potential regulation of cannabidiol, oil or otherwise administered, begin with the obstacles in place for its consistent testing by researchers. Cannabidiol is a drug federally classified under Schedule I, which is a label referring to the level of danger and abuse potential of certain illegal drugs. Other substances accompanying marijuana on Schedule I include LSD, heroin, and methaqualone.
CBD oil for epilepsy may be more broadly available if legislation is passed promoting the cooperation of federal and state laws with regard to the procurement of cannabis for medical research, as well as the legal distribution of privately tested and regulated forms of the compound. With backing from the Epilepsy Foundation and peer-reviewed publications of studies that have so far been performed, word is getting out about the conflicts of interest on the state and local levels with regard to non-psychoactive CBD compounds for the treatment of epilepsy that is nonresponsive to other FDA-approved treatment methods. Though CBD may be beneficial for epilepsy, its risks for inducing serious side effects or exacerbating certain mental and neurological illnesses remain inconclusive. With greater leniency in its procurement, as well as further attempts to conduct controllable studies and regulate CBD potency, researchers may be able to come closer to understanding the breadth of implications of medicinal cannabidiol.