Epilepsy, which affects more people than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson's combined (yet receives fewer Federal dollars per patient than each of these), seems to be one of the most well-known examples of anecdotal evidence regarding CBD, especially if you live here in Colorado.
Whether it’s Charlotte’s Web (we’ll touch on why it’s named that a bit later) or the droves of out-of-staters coming here to seek relief, chances are you’ve at least heard about the effects of CBD on epilepsy and other similar diseases.
Despite the fear that CBD-rich marijuana extracts can potentially increase the risk of psychiatric disorders and long-term cognitive problems, many feel that the serious long-term effects that accompany the use of anti-epileptic drugs and a lifetime of seizures outweigh the risks. The positive results from using CBD oil for epilepsy is giving many parents the very thing they’ve been living without for so long: Hope.
Scientists and physicians have been quick to warn of the dangers of the marijuana extract because the use of CBD oil for people with epilepsy has not yet been clinically evaluated. This is due, in part, to the tight restriction the FDA and DEA have placed on marijuana and its compounds. CBD is currently classified as a Schedule 1 drug – the strictest level of regulation for a controlled substance – yet the Federal Government still holds a patent on it.
At present, regulatory hurdles make it very difficult for researchers to gain access to marijuana rich in CBD (but not impossible). There’s no debate that the hoops researchers must jump through to obtain access to marijuana, or any chemical found in it, are hindering scientific advancement, but change is on the way and advanced research in the area is important.
Parents and researchers are cautiously optimistic that this may be a promising new treatment for some. In fact, in true scientific spirit, scientists would no doubt desire to test not only pure CBD, but also high CBD/low THC cannabis, pure THC and other types of medical marijuana in order to clearly define the efficacy of these and their combinations on seizure control and epilepsy.
Unfortunately, time is not on the side of many of these children with unrelenting seizures. Parents are, of course, going to try anything they can to help their children. Especially when the effects of long-term, uncontrolled seizures are well-known – continued regression, intellectual disability, and even death.
Individual reports of children with refractory epilepsy who have tried cannabis, usually with high ratios of CBD to THC, have reported a marked decline in seizure frequency – including a report describing the results of Charlotte, a girl with Dravet syndrome.
Recently, there have been some open-labeled studies in the U.S. of Epidiolex – a purified, 99% oil-based extract of CBD that is made to give known and consistent amounts in each dose. The U.S. Food and Drug Administration (FDA) has given some epilepsy centers permission to use this drug as "compassionate use" for a limited number of people at each center. Such studies are ongoing for difficult epilepsies such as Lennox-Gastaut syndrome (in children and adults) and Dravet Syndrome in children.
Results from 213 people who received Epidiolex in an open label study (without a placebo control) were presented at the American Academy of Neurology on April 22, 2015 in Washington DC. Data, from 137 people who completed 12 weeks or more on the drug, was used to look at how helpful or effective the drug was.
People who received the Epidiolex ranged from 2 to 26 years old, with an average age of 11. All had epilepsy that did not respond to currently available treatments – 25 had Dravet Syndrome (DS) and 22 had Lennox-Gastaut Syndrome (LGS).
- Seizures decreased by an average of 54% in 137 people who completed 12 weeks on Epidiolex
- Patients with DS responded more positively, with a 63% decrease in seizures over 3 months
- This improvement in seizures lasted through 24 weeks on the Epidiolex, more often for people with DS than without DS
- In 27 patients with atonic seizures (which are commonly seen in people with LGS as well as other types of epilepsy), the atonic seizures decreased by 66.7% on average
- The responder rate (the number of people whose seizures decreased by at least 50%) was also slightly better in patients with DS (about 55% at 3 months) as compared to patients without DS (50%)
- People who were also taking the anti-seizure medication Clobazam seemed to respond more favorably to the Epidiolex with a greater improvement in convulsive seizures than in patients who were not taking Clobazam. The authors suggested that an interaction between Clobazam and Epidiolex may play a part in the differences seen.
- 14 people withdrew from the study because the drug was not effective for them
Side effects of the CBD preparations used to treat seizures have not always been well documented in anecdotal reports (as varying doses and strains have been used), so they are also taking a look at that.
- Side effects that occurred in 10% or more of people included: sleepiness (21%), diarrhea (17%), fatigue (17%), and decreased appetite (16%).
- 10 people (5%) stopped treatment with Epidiolex due to side effects, though 3 of these people restarted it.
- Most side effects were described as mild or moderate and went away.
- Serious side effects happened in 52 people – 22 of these were possibly related to the drug. The most common serious possible side effect was status epilepticus, when a person has long or repeated seizures.
It's difficult to assess the side effects of Epidiolex and other safety concerns until larger studies using a control group are done. Other side effects which are not yet known to scientists may occur.
When conventional treatments don’t work as is the case for roughly 30% of people with epilepsy, it's not unreasonable to consider other options. Namely cannabis or CBD. (I mean, even the pharmaceutical companies are getting in on it!)
Luckily, with the passing of the Industrial Hemp Farming Act, CBD has become much more readily available to those in the States. It’s no longer in vials of gross, oily liquid and it’s now fully legal (if purchased from legitimate, documented vendors or retailers!), giving many parents a small sense of relief from legal prosecution.
If you or someone you know is affected by epilepsy, consider some of DiscoverCBD’s fully-legal, hemp-derived products. Whether it’s a daily supplement or even some delicious edibles, DiscoverCBD has got you covered.
(Of course, in this case, please consult with your doctor before adding any new medications to the mix.)
Have a story to share? Questions about CBD? Let us know in the comments below and we’ll do our best to respond right away. In the meantime, sign up for our newsletters and visit our website, DiscoverCBD.com, regularly for the latest updates, research, legislation and other news about cannabidiol.