When CBD Is not Sufficient to Deal with Epilepsy

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At evening you would possibly discover Chelsea Leyland, a 31-year-old British actress and superstar DJ, juggling beats at a flashy Miami get together whereas rocking a Simone Rocha costume that enhances her honey-hued hair and brown eyes. By day she shifts into activist mode, touring the nation, giving interviews, speaking at conferences and filming a documentary — all on the advanced and controversial topic of medical marijuana. Leyland needs individuals to understand how she has overcome a crippling neurological sickness. She is epileptic, and he or she’s been seizure-free for a number of years with out utilizing any prescribed drugs. Her solely medication is cannabis.

Leyland remembers the day her epilepsy rudely introduced itself. She was 15, sitting within the backseat of the household automobile. They have been driving within the London suburbs by means of a grove of timber, and the dappled daylight flickered by means of the leaves, triggering unusual sensations in her head. “My mind felt humorous,” she says. “It was prefer it went on a special frequency.”

Over time, this “humorous” feeling in her mind advanced into episodes of sudden jerking actions in her limbs, usually within the morning whereas Leyland could be consuming breakfast, and her cereal bowl or tea cup would drop from her hand. (Docs confer with it as “flying saucer epilepsy,” when victims inadvertently fling dishes round throughout a seizure.) Leyland was finally identified with juvenile myoclonic epilepsy, a kind that sometimes begins in adolescence. She was prescribed anti-epileptic drugs whose unintended effects included nervousness, irritability, rage and despair. However the seizures continued.

“All the things out of the blue feels unreal”

Epileptics have likened the moments main as much as a seizure as “a chilly wind blowing from my toes to my head … every thing out of the blue appears unreal.” An episode would possibly start with a neuronal misfiring within the mind that triggers an explosive chain response of excitation and a cascade of aberrant signs: visible and auditory disturbances, bizarre flavors and odors, pupils dilate, muscle tissues stiffen and jerk uncontrollably. An epileptic might vomit, cry out, fall down and lose consciousness, waking solely after the episode is over, remembering nothing.

When pondering of epilepsy, one is apt to image an individual mendacity on the bottom and shaking violently, foaming on the mouth, eyes rolled again of their head. Such generalized grand mal or “tonic-clonic” seizures are however certainly one of epilepsy’s myriad manifestations, lots of which aren’t apparent to others. This hidden facet of epilepsy usually makes it particularly laborious to deal with – the flashbacks, temper swings, disjointed emotions of déjà vu, issue concentrating, reminiscence lapses, and different cognitive impairments.

The aftermath of an epileptic episode usually leaves one exhausted for days, with insomnia, ache and mind fog. “I simply felt completely silly,” says Leyland of a typical post-seizure unhealthy day. “I couldn’t discover the fitting phrases, couldn’t suppose straight. I couldn’t simply suck it up. It affected my work and private life.”

Melancholy is widespread amongst epileptics, as are psychological problems equivalent to panic assaults and agoraphobia. There’s additionally the festering nervousness. The stress of realizing {that a} seizure might occur at any time could cause fixed worry and avoidance behaviors which might be complicated to different individuals. “They thought I used to be appearing like an over-sensitive, treasured princess,” says Leland, who usually canceled plans or felt trepidation in new conditions. “They didn’t understand how relentlessly epilepsy can management one’s decisions, how safety turns into paramount.”

At all times ‘on’

John De Villa understands all too properly the overwhelming nervousness the comes with epilepsy. Like Leyland, his first seizure occurred whereas he was driving, and to this present day he nonetheless feels anxious at any time when he will get behind the wheel of a automobile. De Villa, then 40, was ushered into the epileptic corridor of horrors on July 1, 2015, when he out of the blue felt “humorous” and seen an odd style in his mouth. His spouse Maxine and his two Shih Tzu canines, Prince and Kobe, have been driving with him. He pulled over to the shoulder and proceeded to have a grand mal seizure. It felt like “my mind simply catapulted out of my physique,” De Villa defined.

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John De Villa and his spouse Maxine.

Up till that day, De Villa, a Canadian with a shaved head and straightforward smile, had nary a well being subject. Right away every thing modified. Now he was bedridden, unable to stroll to the lavatory or pour himself a drink of water. He couldn’t even kind a full sentence. Maxine was terrified. Even the canine couple knew one thing was improper. Prince and Kobe vigilantly stood sentry by De Villa’s bedside, licking his face at any time when he seized.

But dozens of medical exams revealed nothing irregular. The docs have been stumped till a neurologist requested De Villa about his occupation. A former anti-hacking safety guard at an IT agency, De Villa had labored a particularly irritating job. “For years I hardly ever slept for greater than three hours at a time,” he says. “I used to be all the time ‘on’.”

The neurologist had seen comparable circumstances the place years of intense work wreaked such havoc on the mind that it was sufficient to kindle a seizure dysfunction. So, they put De Villa on a dozen totally different anti-epileptic medicine. These prescription prescribed drugs, which included extremely addictive benzodiazepines, diminished the variety of seizures he skilled, however in addition they turned him into “a complete zombie.” He couldn’t work, he couldn’t drive, he might hardly stroll or preserve his eyes open. De Villa’s spouse was out of the blue thrown into the position of full-time caretaker and breadwinner. Certain, her husband was being stored alive by the medicine, however their lives have been a multitude.

Higher deadened than useless?

Within the not-so-distant previous, an individual affected by epilepsy was thought of both blessed by a divine drive, or cursed by the satan (extra usually, the latter). The traditional Greeks believed that solely the gods might remedy this “sacred” dysfunction. In Medieval Europe, incense-suffused exorcism rituals grew to become the go-to treatment for epileptic contortions, which have been seen as a type of demonic possession.

By way of the ages, numerous remedies for epileptic “matches” have been plucked from an occasional-hit-but-mostly-miss parade of mistletoe, lithium, arsenic, turpentine, opium and morphine. Then there was silver nitrate (which turned your pores and skin blue-grey), adopted within the mid-1800’s by the discoveries of potassium bromide and phenobarbital. Each of those chemical substances have been useful for quelling seizures, but additionally induced vomiting, staggering, slobbering, rotted the liver, and deadened the senses.

In 19th-century Europe and the USA, epileptics have been closely sedated, confined to their houses, put in restraints, and had elements of their skulls surgically eliminated. Male epileptics have been generally even castrated (because of a suspected affiliation of epilepsy with masturbation). Right this moment the commonest type of therapy is long-term drug remedy, relying closely on sedatives.

Whereas potent anti-epileptic medicine (AEDs) have been a lifesaver for a lot of, they aren’t a remedy they usually have many downsides. Unwanted effects of AEDs embody relentless fatigue, sleepiness, vertigo, nausea, excessive temper swings and weight achieve. Lengthy-term use is related to metabolic modifications, liver illness, elevated threat of stroke, bone thinning, hormonal irregularities, imaginative and prescient disturbances, kidney stones, decreased platelets and pancreatic issues. That’s what the long run regarded like for John De Villa and Chelsea Leyland.

“It’s not magic”

As a younger grownup with epilepsy, Leyland rebelled in opposition to her anxious, security-obsessed self. She moved to New York Metropolis, began a profession as a DJ, and threw herself into intense, usually scary conditions as a approach to take a stand in opposition to her situation and refuse to let it outline her. However the fixed stimulation, late nights, and jet lag mixed with the closely sedating results of the AEDs — have been all an excessive amount of. Attempting to craft a traditional life whereas battling epilepsy was taking a significant toll.

Leyland struggled to take care of her formidable profession whereas grappling along with her epileptic signs and the terrible unintended effects of the drugs. Then in the future in 2016 on the urging of a pal she tried a hemp-derived CBD extract. She skilled a direct, constructive shift in her well being. “I assumed, ‘That is what it have to be like to not have epilepsy,’” Leyland remembers. “CBD allowed me to really feel extra regular.”

For a number of months, she experimented with totally different CBD-rich merchandise — each hemp-derived and cannabis-derived, full-spectrum in addition to isolate – various the dosages in line with what appeared to work finest. Leyland used CBD to wean herself off pharmaceutical meds. However after her preliminary enchancment on a CBD routine, she nonetheless struggled with insomnia, fatigue, and cognitive points, in addition to extreme ache from endometriosis and irritable bowel syndrome.

Residing in New York Metropolis, Leyland grew to become an authorized medical marijuana affected person. In 2018, she went to a state-licensed dispensary in Manhattan and obtained a whole-plant CBD-rich cannabis product that included a wholesome proportion of THC. She seen extra pronounced results immediately. “All the things felt sharper,” Leyland advised Challenge CBD. “It was just like the lacking puzzle piece had fallen into place.”

Chelsea Leyland’s experimentation with various ratios of CBD and THC paid off. Her sleep improved, so did her intestine points. Her seizures went into remission. With THC within the combine, every thing settled into a greater groove. As of late, Leyland says her well being is one of the best it has been in years.

Popping a capsule was by no means the reply for Leyland, anyway. She prefers a holistic strategy. “I’ve to do the work,” she says. “I steer clear of sugar and easy carbs. I train, get acupuncture. I take advantage of cannabis every single day for epilepsy, and it additionally treats my different situations. I take advantage of extracts, I vape, use topicals and suppositories. It’s not magic. These are actual and efficient.”

The promise of CBD

Using cannabis to deal with mind problems goes again a good distance. Historical Assyrian texts point out cannabis as a remedy to ease the “Hand of Ghost,” as epilepsy was then identified. Time-travel to 1842: the eminent Irish surgeon William O’Shaughnessy described “gunjah” or “Indian hemp” as “an anti-convulsive treatment of the best worth.” And in 1860, the Ohio Medical Society included “childish convulsions” and “epilepsy” among the many many indications that reply properly to cannabis tinctures. These cures have been broadly out there in the USA till 1937, when “marihuana” successfully grew to become unlawful.

Data of the various therapeutic makes use of of cannabis quickly fell by the wayside, a casualty of reefer insanity and federal prohibition. Consigned to the margins for half a century, cannabis would reemerge as an pressing therapeutic choice throughout the AIDS epidemic. The Golden State led the way in which in 1996 when it legalized the therapeutic use of cannabis. Medical marijuana grew to become a contagiously widespread political subject. The fortuitous rediscovery of CBD-rich vegetation in Northern California in 2009 accentuated a pro-cannabis cultural shift that was already gaining traction all through the nation.

In the summertime of 2013, CNN broadcast Sanjay Gupta’s groundbreaking report on CBD-rich hemp oil doing wonders for kids with catastrophic seizure problems in Colorado. CBD grew to become an instantaneous medical rock star. What’s extra, CBD was not intoxicating like THC – it didn’t make the children really feel excessive. The prospect of benefiting therapeutically from cannabis with out smoking it or getting excessive would show to be irresistible for many individuals. A legislative stampede ensued as state after state handed “CBD-only” measures that legalized hemp-derived CBD extracts with little or no THC. The FDA would finally approve Epidiolex as a pharmaceutical CBD isolate for 2 sorts of pediatric epilepsy.

Gateway to THC

John De Villa had examine CBD-rich cannabis and, determined for reduction, he determined to offer it a attempt. It was 2015 and on the time marijuana was nonetheless unlawful in Canada, however he managed to acquire a whole-plant, CBD-rich cannabis oil extract on the black market, one which contained no discernible quantity of THC. The consequences have been noticeable virtually instantly. He began having fewer seizures. CBD appeared to make his different remedy work higher, so he wanted to take much less of what was causing him really feel so awful.

After a number of months of progress, nevertheless, De Villa developed a tolerance to cannabidiol, and it stopped working. He tried to press the reset button by taking periodic breaks from CBD, whereupon the seizures returned. However he was decided not to return on extra prescribed drugs. The re-sensitivity durations have been brutal. To completely detox from addictive AEDs, it took eight months of “sweating, shaking, craving, lack of urge for food,” says De Villa. “Twice I virtually gave up.”

What helped De Villa most of all throughout his season in rehab hell was when he added some THC to his CBD-rich cannabis routine. Initially he had been leery of the stigma related to getting stoned, however De Villa was determined for something which may restore the sensation of normalcy that he had initially achieved with CBD. THC proved to be a game-changer. As soon as he was freed from the meds, “it was just like the clouds lifted. I lastly felt clear and purposeful once more,” he recounted. The seizures stopped, and so far De Villa has not had one other epileptic episode. Fortified by his every day CBDTHC consumption, he’s been seizure-free for 4 years and counting, knock on wooden.

As of late De Villa makes use of a full-spectrum cannabis extract with a 4:1 CBD-to-THC ratio throughout sunlight hours, and he often consumes a THC-dominant product at evening for sleep. Often, he’ll attain for a uncooked THCA-rich product, which additionally seems to have anticonvulsant properties and is nonintoxicating, as properly. De Villa’s spouse and his immigrant Phillipino dad and mom (each of their 70’s) are additionally utilizing medical cannabis, which has helped scale back his father’s prostate enlargement so radically that his docs have been shocked. Even Kobe and Prince take a every day dose of CBD-infused pet food.

Staying the course

Leyland and De Villa each really feel profoundly grateful for the reduction they’ve gotten from full-spectrum cannabis oil, they usually share a need to assist others who’re battling seizures. De Villa courageously went public together with his story earlier than cannabis grew to become authorized in Canada, and he continues to supply assist and data to epileptic victims whereas operating two companies from house with Maxine and their furry sidekicks, having discovered the laborious approach to preserve the stress ranges low. Leyland spends a lot of her time educating individuals about CBD and medical cannabis.

Whereas touring, Leyland is ready to entry numerous cannabis merchandise in states which have legalized the herb. However she will’t deliver any type of cannabis along with her when she goes again to London to go to her sister Tamsin, who can also be epileptic. Tamsin suffers from a extreme neurological dysfunction that blasts her with as many as 100 seizures every day. She at the moment lives outdoors London in a Nationwide Well being Service facility.

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Chelsea Leland at CannaCraft in Santa Rosa, CA.

Leyland believes cannabis might assist Tamsin, however in Nice Britain it’s extraordinarily tough to get a prescription. At the moment, there are solely a handful of official medical cannabis sufferers within the U.Ok., and government-approved cannabis could be very costly, averaging about $30ok per 12 months. Consequently, many sufferers resort to the black market to get badly-needed medication at a less expensive value.

“It’s not a query of smuggling a CBD tincture from the U.S.,” says Leyland, who believes that sufferers mustn’t have to hunt cannabis from underground sources. She feels it’s outrageous that ailing people have little alternative however to experiment with unregulated merchandise, which can or might not have been grown or manufactured correctly and should not comprise the cannabinoid content material or profile they want.

The story of two sisters with epilepsy — one dwelling a vibrant, productive existence and the opposite with a situation that for now holds little hope for enchancment — is on the coronary heart of Leyland’s work. Along with her non-profit, CBD for Epilepsy, Chelsea is collaborating on a documentary, “Separating the Strains,” which follows the Leyland sisters and goals to current extra than simply anecdotal accounts of how cannabis has helped individuals with epilepsy and different neurodegenerative illnesses. The movie will discover the present science, in addition to rising and processing strategies, with an emphasis on security, reliability, and above all, affected person entry. She hopes the movie will assist individuals make knowledgeable selections when utilizing cannabis for well being functions. Her final purpose is to vary authorities coverage within the U.Ok., the U.S., and past.

“Hashish has given me again my life,” says Leyland. “It’s gotten me off prescribed drugs, allowed me to sleep once more, to undergo my days with out the worry hanging over me that I might need a seizure. It’s actually essentially the most profitable medication for my situation. And I consider it might assist my sister. As soon as we achieve entry for her and different victims, seizures will lower and the standard of life will enhance.”

Leyland realizes that what works for one epileptic might not work for others. However with out authorized, secure and reasonably priced entry to a spread of cannabis cures – not simply CBD – sufferers like her sister received’t have the prospect to seek out out if they will profit from cannabis oil. It’s a tragic, life-or-death scenario that each Leyland and De Villa have managed to beat with assist from cannabis. Figuring out what it means to be haunted by epilepsy, neither will relaxation till all epileptics have an analogous shot on the high quality of life they each now get pleasure from.  For these two, that’s one thing price combating for.


Melinda Misuraca is a Challenge CBD contributing author with a previous life as an old-school cannabis farmer specializing in CBD-rich cultivars. Her articles have appeared in Excessive Occasions, Alternet, and a number of other different publications.


Copyright, Challenge CBD. Might not be reprinted with out permission.

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