by Anna Price
When most people think of cannabis, they often get a very distinct picture of a drug addict in their heads. This has partially to do with its recreational use, but it also has to do with the DEA’s unjustified characterization of the substance. According to the Drug Enforcement Administration (DEA), cannabis is classified as a schedule 1 drug along with other substances such as cocaine. Though the World Health Organization (WHO) has challenged this law by saying that there is simply no justification for it, the DEA seems to stand by the classification. But here’s the interesting thing: Cannabis, though used recreational by many, is essentially a medicinal plant. History says it, and so does science. One of the top reasons the fight for legalizing medicinal marijuana has become so heated is because of its ability to treat epilepsy. Cannabidiol, the non-psychotropic cannabinoid in the cannabis plant, has shown some serious promise in helping to manage seizures in some of the most severe cases of epilepsy. This treatment has been administered safely, and without any adverse reactions as CBD does not produce a high. To top it all off it is being used safely on children specifically because it is so mild. CBD seems like cannabis’ best-kept secret especially for those with epilepsy.
So what is epilepsy exactly, and why is it so important to find a reliable treatment? How could cannabis and CBD be the answer?
What is Epilepsy?
Epilepsy is a disorder of the central nervous system that is characterized by recurring seizures. Symptoms can also include other unusual behaviors, sensations, and loss of consciousness. Anyone of any age can develop epilepsy, but it is most common in children, especially within their first year. An estimated 65 million people around the world live with epilepsy, and 1 in every 26 Americans will develop it at some point.
Seizure symptoms can vary greatly with those who suffer from epilepsy. They can be very slight to very severe. Some signs of a seizure may include:
- Temporary confusion
- Staring blankly
- Uncontrollable jerking of the arms and legs
- Loss of awareness or consciousness
- Fear, anxiety or deja vu.
Seizures are broken down into two categories: focal and generalized. When a seizure appears in one area of the brain, it is called a focal seizure.. These include:
- Focal seizures without loss of consciousness. These seizures could include things like altered emotions (anger outburst, anxiety, fear, etc) or affect other senses such as sight, smell, feel, taste and sound. Voluntary jerking of the limbs and random tingling, dizziness and flashes of light could also be symptoms of these seizures. These were once called simple partial seizures.
- Focal seizures with impaired awareness. Those who experience these seizures may lose consciousness or awareness. This could be staring blankly and becoming unresponsive or doing repetitive movements such as hand rubbing or walking in circles. These were once referred to as complex partial seizures.
These seizures may be mistaken for other neurological issues and need to be assessed through a thorough examination to properly diagnose as a seizure disorder.
Seizures that involve the entire surface of the brain are called generalized seizures. There are six different types of seizures in this category including:
- Absence seizures: These are common in children and may cause a brief loss of consciousness. Staring into space or subtle movements such as lip smacking can occur.
- Tonic seizures: These are characterized by a stiffening of the muscles. This can affect the back, arms and legs and may result in a fall.
- Atonic: These may result in a sudden fall because of loss of muscle control. They are also known as drop seizures.
- Clonic: These include repeated jerking muscles which may affect the neck, face and arms.
- Myoclonic seizures: These are typically sudden brief jerks in the arms in legs.
- Tonic-clonic seizures: These were once referred to as grand-mal and are the most violent type of epileptic seizure. This can cause loss of consciousness, stiffening in the body, and sometimes loss of bladder and bowel control. Biting the tongue is also a risk of these seizures.
Having epilepsy isn’t very cut and dry. Seizures are differing and the life situations of those who suffer from them vary. One thing is for sure, though: they aren’t easy to live with for anyone. Some people experience seizures multiple times a day, which will limit their abilities to do simple everyday tasks. Some only experience seizures every now and then, but the fear and anticipation of wondering when another seizure will strike can be disabling in its own way. Although, many don’t let epilepsy define them and power forward.
This was the case with Emily Borghard.
In an interview with Reader’s Digest, a woman named Emily Borghard describes how her epilepsy began, and how it has changed her life. For Emily, her epilepsy first appeared on a drive home from a friend’s house. Unfortunately, Emily was behind the wheel.
“My first seizure occurred during a car accident. I was going home after a sleepover with my friends and I drove right off the road into a creek. I live in such a small town that the closest hospital is an hour away,” Emily explained. “I was lucky that someone saw it happen because if not, they might not have known I was in the creek. They had to fly me to the hospital and the whole town knew what had happened by the time they contacted my parents because they had to clear the football game to land the helicopter.”
Emily can describe this night, not because this is how she remembers it happening, but because she has put the pieces together from local news reports. Emily doesn’t remember any part of the event.
Emergency responders witnessed Emily having a seizure, however doctors were still hesitant to diagnose her with epilepsy. Months after the accident Emily was still experiencing episodes of blacking out and falling down. The neurologists were telling her that she was fine, but Emily knew better. She knew that something was wrong, and having doctors tell her that she was faking her seizures was very discouraging to her.
“Being told I was faking the seizures was terrifying and frustrating. I began to doubt that there was something wrong, and I actually began to believe that maybe I was just nuts, and making this all up,” explained Emily when faced with the realization that she may not receive the help she desperately needed.
Fortunately for Emily, after suffering through her year of college away from home and not knowing what was really wrong, she finally got the help she needed. Dr. Lawrence Hirsch, MD, a professor of neurology at Yale University, believed that Emily was not faking her seizures. Eventually, an implantable neuro-stimulating device was placed within Emily’s brain where the seizures were happening. This has helped her live an independent life with little to no seizure activity.
For Emily, seizure medications didn’t work which is why doctors didn’t believe her symptoms were real. However, only 70% of epilepsy patients can actually benefit from medication. This is called intractable epilepsy, which means that the seizures cannot be controlled with treatments such as medication. Surgery is oftentimes needed and in some cases, like Emily, other treatments are required in order to live a normal life.
Charlotte Figi also suffered from having uncontrollable seizures.
Charlotte Figi had her very first seizure at the young age of 3 months old. It lasted for 30 minutes. After her family rushed her to the hospital, rigorous tests were done to no avail. Like with Emily Borghard, nothing showed up to indicate that anything was abnormal with Charlotte. However, the next week Charlotte had another seizure which lasted longer than the first one. Over the next few months, Charlotte’s condition worsened. She was being hospitalized on a regular basis with seizures lasting two to four hours. Tests were continuously performed, but everything came back as normal. Charlotte’s parents were continually told that Charlotte would grow out of it, but that didn’t happen. Her condition only worsened in time, and became more debilitating.
Charlotte was developing normally, walking and talking, but her seizures still persisted. Charlotte had been prescribed medications to help treat her seizure disorder. Barbiturates and benzodiazepines are often given to patients with epilepsy, and Charlotte was no exception. These drugs are known to be addictive and aggressive, especially for a small child like Charlotte. They also don’t work for everyone. The drugs prescribed seemed to only work for a short while before Charlotte’s condition would return. These medications were quickly stopped. Having seizures is hard enough, but having seizures and drug side effects can be even harder.
Finally, when Charlotte was 2 1/2 some questions were answered. Charlotte was suffering from a form of epilepsy called Dravet syndrome.
Though it is rare, Dravet syndrome is aggressive and can be life-threatening. Patients who suffer from Dravet syndrome usually develop the disease in the first year of their life. Those who suffer from this condition can experience seizures that last from anywhere between five and thirty minutes. Sometimes, like with Charlotte, these seizures can even last much longer. They may also experience these seizures in succession. Patients are often hospitalized due to the severity of these seizures, and Charlotte was one of them.
Having a name to give Charlotte’s disorder was only the beginning of the journey for the Figi family. By age five Charlotte was having 300 tonic-clonic seizures a week, and no medications were working. Charlotte, who was developing normally before, began to lose her ability to walk, talk and even eat. As many parents with children who have Dravet syndrome do, the Figis began to prepare for the worst. Those with Dravet syndrome face a 15-20% mortality rate. The Figi family eventually signed do-not-resuscitate papers as their little girl’s body seemed to be giving up.
But then Matt, Charlotte’s father, found out about the success of medical marijuana. They live in Colorado, which has legalized the use of marijuana medicinally, but the family still needed a doctor’s note to use it. Luckily, Dr. Margaret Gedde was willing to be that doctor.
With the first dose of CBD oil, Charlotte’s seizures stopped for the next seven days. It was a miracle for the Figi family who has lost all hope of their daughter’s survival. It was such a success that the Stanley brothers, who grow medicinal marijuana in Colorado, named a special cross-bred variety of cannabis after Charlotte: Charlotte’s Web. This is a low THC, high CBD variety that is actually considered hemp because of its almost nonexistent THC levels. This means that the oils from this plant can be taken without creating any high.
Charlotte is now ten years old and has gone from 300 tonic-clonic seizures a week to maybe two or three in a month. She can walk, talk and even ride a bike.
Like in the case of Emily Borghart, Charlotte’s life was turned around by persistence in finding the treatment that worked for her specifically. Epilepsy is no small disorder to live with, and it can be debilitating. Medications don’t work for everyone, but like with Emily and Charlotte, that doesn’t mean that epilepsy has to run your life. Other treatments are available.
To learn more about epilepsy read Getting Facts Straight About Epilepsy.
What Treatments Are Available?
There are several options for treatment that are available for epilepsy patients. Every epilepsy patient is different, and varying treatments are necessary.
Seizure medication: As previously noted, medication doesn’t work for everyone. Also, medications that work for one patient may not work for another, so sometimes it’s necessary to try different drugs to find the right fit. When taking seizure medication, always make sure that you tell your doctor if you take any other medicine as well, even if it’s an over-the-counter medication. Some seizure medications do not mix well with other drugs and can fail to be effective. The downside of medication is not only does it only work in 1 out of 7 patients, it also comes with some possible side effects.
The severity of the side effects can vary, depending on the medication. A few common epilepsy medication can carry with them some pretty hefty side effects, which could make the patient leery of taking them in the first place.
Benzodiazepines (Valium, Ativan, Klonopin, Onfi):
- Withdrawal issues such as sudden seizures
- Respiratory problems
- Increased risk of glaucoma
- Liver damage
Carbamazepine (Tegretol) and related drugs:
- Upset stomach
- Serious skin reactions that could turn fatal
- Serious blood disorders
- Reduced sodium levels
- Severe mood and behavior changes, including hostility, aggression, suicidal thoughts
- Weight gain
Seizures are hard to live with, but having side effects like these aren’t a walk in the park either.
Some patients find relief from their seizures but worry about the effects of their medication.
According to one patient from the Epilepsy Society website, sometimes the side effects don’t
seem worth it. He or she is quoted saying:
“My medication affects my memory and mood, and this makes me resent them slightly. I
could risk a seizure to have some memory back as memories make up your identity.”
When medications don’t seem to work other treatments are used. One of these treatments is called a Vagus nerve stimulator (VNS). This is a device that is put beneath the skin on the chest. It can help prevent seizures by electrically stimulating a nerve that runs through the neck. The surgeon makes an incision on the outer part of the chest on the left side where the device is then implanted under the skin. Another incision is then made horizontally in the lower part of the neck where the wire from the stimulator is wrapped around the vagus nerve. This is a fairly easy procedure that requires general anesthesia and usually only takes about 50-90 minutes to complete. The patient can usually go home the same day that the surgery is completed.
The brain itself is not actually involved in the surgery, but it will interact with the device in order to stop a seizure. The VNS is programmed to go off and on at regular intervals throughout the day, however it can also be stimulated by a special magnet. When a patient is feeling the warning signs of a seizure (also known as an aura) then holding this magnet near the device can help tell the device to send stimulation to the brain to stop a seizure. This can be a viable option for those who suffer drug-resistant epilepsy. However, there are surgery risks and side effects. According to the Mayo Clinic, these include:
- Pain at the sight of the incision
- Incision scarring
- Difficulty swallowing
- Vocal cord paralysis. Typically, this is temporary, but it can be permanent.
After surgery side effects:
- Voice changes
- Throat pain
- Chest pain
- Breathing problems, especially during exercise
- Difficulty swallowing
- Abdominal pain or nausea
- Tingling or prickling of the skin
- Slowing of the heart rate (bradycardia)
In severe cases, brain surgery may be recommended. This is the most aggressive form of treatment and involves altering or removing the area of the brain that is being affected by seizures. Those who qualify for brain surgery must have tried at least two anti-seizure drugs. If two drugs have failed, then it is very unlikely that any other will be of any help.
Brain surgery can be a very successful treatment for those who have medicine resistant seizures, however it is aggressive and can be risky. Brain surgery risks may include:
- Problems with speech
- Loss of motor skills
- Increase amount of seizures
These risks heavily depend on what area of the brain that is being operated on and the type of brain surgery that is being performed. Along with these risk comes a long recovery period. Staying in the hospital for at least three to four days is common, and time off from work and school could last up to three months. During this recovery time, most patients experience severe pain for the first few days and moderate pain and swelling for several weeks. Depending on the patient, some people may need to continue using anti-seizure medications for even a couple of years after the surgery.
These treatments work on some, and don’t on others, and in some cases, it may come down to a simple diet change to help control seizures.
The ketogenic diet has become popular with many epileptic patients, especially young children This isn’t to say that the diet won’t work for teens and adults, but they typically have a harder time sticking to the diet.
Keto is a high-fat, low carb diet. In a typical keto meal, there are three to four times as much fat as there are carbs and proteins combined. Sweets, bread and pastas are off the menu when considering this diet.
So why does it work?
It’s actually still unclear why the ketogenic diet works. One theory that many experts are throwing around has to do with ketosis. Ketosis is when your body runs out of carbohydrates and instead burns up fat for energy.
Each diet is tailored to each child, so working closely with your doctor and a dietician is recommended. Typically, this diet change is done in the hospital to monitor the results. Any child who is trying this diet to help epilepsy should make sure to avoid carbs at all costs. Paying close attention to what food is eaten is essential as tiny traces of carbs are in all kinds of foods.
Do keep in mind that this isn’t an instant fix. Changing to a different diet is something that the body has to get used to, and it may take a few months to really see the effects. If the diet doesn’t work, returning to a normal diet should happen gradually. Quitting the keto diet suddenly could trigger seizures.
As with Charlotte Figi, diet might not be the miracle treatment either. Once these options have been exhausted, there is still one more left to try.
Cannabis and CBD oil.
What Are Cannabis and CBD?
Contrary to popular belief, cannabis is simply a plant. A federally illegal plant, but a plant nonetheless. It isn’t trying to knock down your door and corrupt your children; it’s literally just a plant.
Most people shy (or run) away from cannabis because it is classified as a schedule 1 substance alongside cocaine. This classification has made many deem the cannabis plant a dangerous drug. However, this plant is very misunderstood.
While cannabis can indeed make you high, not all cannabis properties should be looked at in the same way. This plant is made of many chemical compounds that do different things.
Terpenes, for instance, are what makes the different flavors and scents of the cannabis plants. Another chemical compound found in almost all plants is chlorophyll, which gives cannabis its green color.
Take THC for example. Tetrahydrocannabinol or THC is the most widely known cannabinoid in the cannabis plant. While THC is only one of 85 different cannabinoids in cannabis, it’s made a name for itself because of its psychoactive effects. Marijuana users often enjoy using a cannabis with a high THC content because of its euphoric effects. THC comes with its own set of medicinal benefits as well. Some of these include:
- Chronic pain relief
- Tumor reduction
- Asthma treatment
- Appetite stimulating
- Nausea suppression
- Protection against heart disease
- Sleep aid
Though this cannabinoid can be amazingly useful in health care, it does come with its own set of risks, so taking cautiously is best. Some the risks involved with using a high-THC strain of cannabis include:
- Increased Appetite: This is one of the most well-known side effects of THC. This is often referred to as having “the munchies.” This increase in appetite isn’t always a bad thing, especially in those who are very ill and have lost their appetites, such as with cancer and AIDS patients. Marinol is a drug on the market now which is derived from the cannabis plant. It is used to help increase the appetite of cancer patients. While this is a benefit for cancer patients, for most of us incre
- Depression and Schizophrenia: Cannabis has been proven to help treat those who have
depression, but THC is not the cannabinoid responsible for this. In younger users, in
particular, a THC-high strain of marijuana could actually cause depression.
- Paranoia and Anxiety: High THC strains of marijuana have been shown to cause paranoia.
This appears to be an effect that THC directly causes. However, THC can cause high levels
of anxiety in users, which in turn can cause feelings of paranoia. Those who already have
an anxiety disorder may find THC actually elevates their anxiety even more.
- Lack of Motivation: The slacker stereotype is one that marijuana just can’t shake. While this
isn’t true for everyone, it often isn’t far from the truth. A survey in 2003 showed that 53% of
those who use marijuana reported feeling a loss of motivation. This could have to do with the
low levels of dopamine in those who use high-THC cannabis long-term. Dopamine is
responsible for motivation, and lower amounts of dopamine in the brain could have a
negative effect on work-ethic.
Luckily for many, especially children who suffer from epilepsy, there is another cannabinoid superhero with amazing medical benefits and no negative psychoactive effects. CBD has shown a miraculous discovery for many health reasons, particularly epilepsy.
Cannabidiol (CBD), is a main ingredient found in the marijuana plant. Unlike THC or tetrahydrocannabinol, CBD does not have the psychotropic effects of THC. Though THC can cause anxiety and paranoia, CBD has a calming effect, that can even combat the psychoactive effects of THC. CBD has gone through tons of research and shown to be a promising treatment for ailments such as epilepsy, Parkinson’s disease, schizophrenia, cardiovascular health and even helps lower the incidence of diabetes. CBD can be enjoyed as a healing medicine without the negative side effects of THC.
So what does this mean for epilepsy patients?
It means that the options of treatment are widening. It means that though pharmaceuticals may have failed, and diets won’t work, that there is still hope in finding a treatment.
But to understand how cannabis and CBD may help epilepsy, we must first know a little about the body’s endocannabinoid system.
The endocannabinoid system is where cannabinoids and cannabinoid receptors meet. You might say that this is where the magic happens.
There are two receptors that are found in the endocannabinoid system: CB1 and CB2. These receptors are responsible for doing different things in the body.
The CB1 receptors are distributed throughout the brain and control functions such as movement, pain, sensory perception, emotion, cognition and coordination. The CB2 receptors are primarily found in the immune system and can reduce pain and inflammation. When ingesting THC, it binds to the CB1 receptors which work with the central nervous system.
CBD does interact with these receptors, but it does not bind to them as THC does. When CBD works with these receptors, it can influence certain chemical reactions. Research has shown that CBD can help prevent other cannabinoids such as THC from binding to the receptors, which can help reduce anxiety and paranoia caused by THC.
CBD can also interact with receptors other than CB1 and CB2. Cannabidiol can influence serotonin, vanilloid, GPR55 and PPAR receptors. This results in CBD being not only non-psychotropic but also medicinal.
CBD’s medicinal benefits coupled with its typical mildness are exactly why parents are turning to CBD to treat their children’s presumably untreatable epilepsy. Most doctors don’t want to even try CBD, as the laws tied to it can seem a little daunting. This leaves many parents, such as Matt and Paige Figi, to take matters into their own hands. As noted above, Charlotte Figi was one little girl whose life changed due to CBD oil. Her seizures all but went away, and her parents thank cannabis for that change. Other parents, such as Donald and Aileen Burger, feel the same way.
The Burgers ended up relocating from New York to Colorado in hopes of using cannabis as a treatment for their daughter, Elizabeth. Elizabeth suffers from seizures that neurologists told them could only be treated with brain surgery. This led the family to make a drastic move across the country in hopes of saving their little girl. Aileen Burger is quoted telling the NY Daily News:
“It’s a very big strain being away from the rest of our family, but she doesn’t have to have pieces of her brain removed.”
The fear of aggressive surgeries and medications have parents fumbling for a safer treatment for their children. Many are succeeding with treating their children with CBD oil, others are pushing for more research to be done to find the best way for their children to use medicinal cannabis. Lack of studies is one reason many parents and doctors shy away from using cannabis as an epilepsy treatment at all.
No one treatment will work for everyone and cannabis and CBD are no exception.
Nicole Hansen’s son, Jaren, has suffered from seizures since the age of two. Despite being prescribed varies anti-seizure medications, Jaren was still having tonic-clonic seizures every day. As his mother, Nicole, revealed to NPR,
“He tail spun again and had a tonic-clonic seizure every day. At that point, he was on three seizure medications, and we weren’t seeing any control. Things were just tumbling downward. At one point, blood levels of Depakote [an anti-epileptic medication] were toxically high. We needed to try something else. We were scared for his long-term health based on just the side effects of the medicine.”
This is when Nicole started her own search for a treatment for her son. After finding a chat group full of parents who were talking about medical cannabis, she decided to try it out for herself. When she finally tried it on her son, Jaren, she found that his seizures did, in fact, go down in frequency, but did not go away altogether.
After contracting the stomach flu, Jaren rebounded and had to be taken off of the cannabidiol medication. However, his mother still believes that cannabis could work for her son, but more studies need to be done on the efficacy of certain strains on certain types of epilepsy. Different THC/CBD ratios could affect children in different ways.
CBD oil may work for some, whereas others may benefit from a different THC/CBD ratio. We just don’t know for sure. Either way, cannabis is showing promise as a treatment, and parents and doctors are pushing to have more scientific research to effectively determine what will work for different patients. Many doctors advise caution before using CBD because of the lack of evidence. Amy Brooks-Kayal, who is vice president of the American Epilepsy Society, said in regards to gathering more evidence of CBD’s effectiveness with epilepsy,
“Until we have that information, as physicians, we can’t follow our first creed, which is do no harm.”
But that’s the problem with many of these epilepsy medications. They are sometimes ineffective and can do a lot of harm. As a parent, when you see your child suffering, there is nothing that you wouldn’t do to stop it. No amount of resistance from anyone can stop a parent fighting for her child’s life. This is a main reason that parents are advocating for the legalization of cannabis, and encouraging more studies to be done in regards to epilepsy.
So what hope do we have for cannabis and CBD for epilepsy?
To learn more about the benefits of using CBD, read What is CBD Used For? 9 Reasons People Use CBD.
How Does CBD for Epilepsy Work?
SERP Feature: Embedded Forum/Product Review- Find a review of a CBD products or a posting from an online community forum about a first-hand testimonial about CBD relieving symptoms of epilepsy or seizures.
Solid research on CBD for seizures is limited, but that may be about to change.
Epidiolex is an up and coming epilepsy drug that is almost pure CBD oil. The FDA has approved the research on this medication, and so far it has shown some serious promise. Twenty-three children and adults with varying types of epilepsy participated in this study. After the 3-month trial period a few things were found:
- 39% of participants found a 50% decrease in seizures
- 32% found a median reduction in seizures
- Only 9% of participants had mild to moderate side effects
- Only one participant with Dravets syndrome actually experienced worsening symptoms.
This study concluded that Epidiolex could be an effective treatment for those with epilepsy, though more research is needed to confirm this conclusion.
One study done on rats has shown that CBD has anticonvulsant effects similar to those of current anti-seizure medications for major seizures. This study even concluded that CBD can help to enhance the effects of anticonvulsant drugs for major seizures.
Research published by the New England Journal of Medicine also concluded that CBD could decrease seizures in children who have severe, and in many cases fatal, epilepsy. This study was a randomized, double-blind and placebo-controlled human trial, which is considered top-notch research in the science world.
But why could cannabis and CBD so effective?
It comes down to the previously noted endocannabinoid system.
People and animals alike have endocannabinoid systems. Like any other system in the body, this is a link between the brain and the body, which aids in the two communicating with each other. Cannabinoids, like other chemicals, can influence our bodies to do certain things by activating certain parts of the brain. Cannabinoids work specifically within the endocannabinoid system with a few exceptions.
When CBD enters the cannabinoid system, research has shown that CBD could help increase hippocampal levels of anandamide, which could protect the central nervous system neurons. This could, in turn, prevent seizures, as an over-firing of neurons is how seizures occur.
Though more research is needed to fully comprehend how cannabis and CBD can effectively be used as an epilepsy treatment, we do know that many are finding relief in their medicinal properties. More research involving dosages, THC/CBD ratios and cannabis strains in relation to epilepsy treatment would help cannabis treatments become a more exact science. This would help doctors determine what the best medication would be for their patients. This could lead to physicians prescribing cannabis medications with confidence.
It all comes down to this: Cannabis has absolutely earned its right in studies for many illnesses, epilepsy included. Until this happens, parents and patients will be trying their luck at whatever cannabis product they can find that may help them or their child. These patients deserve better than the options they are given. Finding an effective treatment for epilepsy should not be driven by desperation, but rather should be lead by science.
If you are considering any cannabis products for medicinal use, please thoroughly educate yourself and consult a trusted physician.
For more information about CBD oil for epilepsy read, Can CBD Oil Really Offer Relief for Adult Epilepsy?