Patient Stories

Alexis Bortell, Epilepsy and the Fight to Legalize Cannabis

When we first spoke to Alexis, she was 11 years old and seizure-free for 866 days, with the aide of cannabidiol (CBD) and tetrahydrocannabinol (THC). We believe she is now 12 years old and, from all the media reports we’ve read on her charge against the federal government, we gather she’s carrying on her fight and is (hopefully) still seizure-free. We obviously support Alexis and her fight all the way, and we implore anyone who has a similar story to share it and join the fight in getting cannabis and cannabinoid-terpenoid-based medications properly researched and treated objectively and fairly for its potential therapeutic and medicinal value. And then who knows? Alexis’s dream might well just come true and she and her co-plaintiffs successfully sue Jeff Sessions for withholding them a medicine that makes their lives so much easier. We have, of course, talked extensively about cannabis – or, more specifically, cannabinoids and terpenoids – for epilepsy before. Anyone suffering from epilepsy and looking for an alternative to anti-epileptic drugs (AEDs) that may not even be working may want to contact us and get a hold of a medical marijuana card and recommendation letter. The process only takes about 10 minutes, and we can also provide cards to caregivers for those suffering from childhood epilepsy – again, please get a hold of us and book an appointment if this is the case. We don’t want to give any false hope or wild medical claims, but we can say that well-made cannabinoid-based extractions seem to have helped many people (though not necessarily and by no means everyone) keep seizure-free for a long time. We believe that this merits further research, and it is reprehensible that scientific and medical research is held back by arbitrary and bad laws.

Anyway, just because we’ve written about cannabis and its potential uses for epilepsy, doesn’t mean that we won’t write about it again. Also, it gives our readers a break from all the semi-political ranting, and frankly we think the science is more important overall, because only silly people deny anything other than bad examples of science. So, without further ado, here’s a little bit more on why cannabis might well help for epilepsy, in particular two rare types of childhood epilepsy …

Lennox-Gastaut Syndrome (LGS)

Slow spike wave EEG of someone with Lennox-Gastaut syndrome (LGS).
Slow spike wave of someone with Lennox-Gastaut syndrome (LGS).

Lennox-Gastaut syndrome usually starts between the ages of 3-5, although it does develop in adolescence on occasion as well. There are also parallels with another type of epilepsy, West syndrome, with about 20% of West syndrome sufferers going on to develop LGS. This suggests that there is a connection between certain kinds of epilepsy. With LGS, nocturnal tonic seizures – the sudden stiffening and contraction of muscles – are the most common. Brief, shock-like, but sometimes consistent and painful jerks – myoclonic seizures – are also common, and are often bought about by fatigue and tiredness. Approximately 15 in every 100,000 people suffer from LGS. That’s around 5 – 10% of all epileptic patients, and around 1 – 2% of all childhood epilepsies. Extreme fatigue, apathy, dizziness, concentration problems, blackouts, chronic headaches, loss of balance, and slowed/impaired psycho-motor development and behavior are other side-effects of epilepsy, not to mention the pain of constantly-seizing muscles. LGS is also characterized by an electroencephalogram (EEG) pattern of less than 2.5 Hz slow spike wave activity. LGS can be caused by a lack of oxygen during birth, severe brain injuries that occurred during pregnancy or birth, contracting a brain infection such as meningitis or encephalitis, dysplasia (when nerve fibers in the brain don’t line up properly when they are developing in the womb), and the formation of non-cancerous tumors throughout the body and brain (tuberous sclerosis).

Cannabis fractal art
Cannabis fractal art by 7th Dwarf.

Severe myoclonic epilepsy of infancy (SMEI, aka Dravet Syndrome) 

Dravet syndrome affects around 1 in every 19,000 people. Dravet syndrome tends to affect children as young as 6 – 10 months old, and is thought to be caused by a mutation in the SCN1A and SCN2A genes. Both genes are responsible for providing the instructions for the transport of positively-charged sodium ions into cells, playing an important role in generating and transmitting electrical signals. This is sometimes referred to as “sodium channelopathy”. Mutations in the SCN2A gene are also implicated in conditions such as autism. However, not every Dravet syndrome patient has an SCN1A gene mutation, which is implicated in about 4 out of 5 cases of Dravet. For the other approximately 20 – 21%, Dravet may be caused by mutations in other genes like FEB1, FEB2, FEB4, PCDH19 and GABAA. Severe brain injuries at birth may also be implicated in the development of Dravet, although having a family history seems to be the most common indicator of the likelihood of developing Dravet. Dravet syndrome affects approximately 1 in every 20,000 – 40,000 people, representing about 7% of all childhood epilepsies developed before the age of 3. Dravet syndrome is one of the most severe types of epilepsy, and it’s not uncommon to get hundreds of seizures a day. Common symptoms of Dravet syndrome are quite similar to LGS, although seizures may be induced when the child has a high body temperature (fever). Tonic-clonic seizures (loss of consciousness followed by stiffening muscles and jerky movements), myoclonic seizures (brief jerks in the upper body) and absence seizures (sudden loss of consciousness and staring) are all common types of seizure with Dravet syndrome. Dravet sufferers may also have photosensitive epilepsy, where seizures are triggered by viewing bright, bold, repetitive patterns.

Why Does Cannabis Potentially Help Epilepsy Sufferers?

Most kinds of epilepsy seem to be caused by a mutation in the SCN1A gene. Cannabinoids, in particular CBD (although other cannabinoids like THC can help CBD work better, as well as help with other side-effects, as explained by Jason David), have shown particular promise in helping prevent the occurrence of seizures. Cannabidavirin (CBDV) has also shown some efficacy in animal models. There could be a few key reasons for this:

  1. CBD blocks sodium channels when in high concentrations, and and can antagonize both CB1 and CB2 receptors, suggesting it has anticonvulsant properties. Although CBD seems to have a weak affinity to CB1 and CB2 receptors, but acts on them indirectly and exerts influence on serotonergic, vanilloid and norepinephrine receptors. CBD also exerts an influence on calcium channels. CBD also acts as an anti-inflammatory as “cannabinoids downregulate cytokine and chemokine production and, in some models, upregulate T-regulatory cells (Tregs) as a mechanism to suppress inflammatory responses.”
  2. We noted above that CBD affects the vanilloid receptors. The vanilloid receptor is also sometimes called the TRPV1 receptor, and is responsible for the detection of pain and heat, and regulates body temperature. CBD may desensitize the TRPV1 receptor, and thereby reduce neuronal excitability.
  3. Many people who suffer from epilepsy may have mutations in the liver enzyme cytochrome P450 (CYP450), CYP2C9, CYP3A, CYP2C19, and CYP2D6, which are all enzymes that are responsible for the metabolism of many anti-epileptic drugs (AEDs) like Clobazam. This means that, due to these malformations, many children with certain types of epilepsy may be being given benzodiazepine- and barbiturate- based AEDs that might not even work for them. Many AEDs are also inhibitors of these kinds of enzymes. CBD also inhibits these enzymes, meaning that epilepsy sufferers can get a cannabinoid that’s much safer and more well-tolerated than many AEDs, which have nasty side-effects such as addiction, constant drowziness, nausea, headache, vomiting, fatigue, blurred vision, tremors and death-via-overdose. Also, as CBD is such a powerful inhibitor of CYP450 and other such enzymes, it may have negative interactions with certain AEDs.
CBD cannabis medical marijuana treatment
CBD has been singled out as one of the key compounds of cannabis with medical benefits.

Are There Any Potential Negatives?

As with all medications, cannabinoid-and-terpenoid-based formulas may not be suitable for everyone, or certain ones may prove positive whilst other prove negative. Due to the general lack of placebo-controlled and double-blind trials, many treat the idea of CBD as a potential AED with some degree of skepticism. Now, although some amount of THC may help CBD work better, some people with epilepsy may not tolerate higher doses of THC so well. For this reason, many products made with epileptics in mind tend to have high concentrations of CBD, in CBD:THC ratios of 20:1 or more. Also, rather than buying overpriced, hemp-based CBD products, it may be better to get a medical marijuana card and go for something that is more well-produced. This is because many hemp-based CBD products are made to very poor standards, and often don’t even contain the amount of CBD they claim to have in them on the packaging. To make matters worse, the lack of regulatory oversight means that there are some very bad products made from industrial hemp, with pollutants, pesticides and pathogens intact, as well as a distinct lack of CBD. Far better to get a recommendation and find a trustworthy dispensary that carries trustworthy products. On this matter, there are dispensaries like Jayden’s Journey and companies like Aunt Zelda’s doing some excellent work, and who seem to take the term “medical marijuana” seriously.

Anything Else?

There is lots of information on the Doctor Frank website regarding the potential therapeutic uses of the cannabinoids and terpenoids found in cannabis/marijuana. We try to keep as up-to-date as we can regarding the science and research, and we highly recommend looking through it in order to grasp what we’re all about. Meanwhile, if you want a medical marijuana card, then click on the image below …

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