From May 20 to September 1 2014, Epilepsia conducted an online survey seeking opinions about the use of medical marijuana and cannabidiol (CBD) for people with epilepsy. This study reports the findings of that poll.
Children are the group most frequently diagnosed with new cases of epilepsy. In the United States, 300,000 children under 14 are affected by the condition. Some may outgrow the disorder, but most will not. The number of senior citizens with epilepsy is also 300,000.
People with epilepsy have a range of treatment options, including alternative therapies.
The illness is a complex condition, however, and all alternative treatment options must be looked at carefully, to ensure they are effective.
It is essential to work with a doctor when making changes in treatment, as every epileptic seizure can cause brain damage, and the effects build up. So, any treatment must work to avoid seizures.
Contents of this article:
Infections, which can cause scarring on the brain that leads to seizures, are among the more common causes of epilepsy.
In the over 65s, strokes are the most common cause of new seizures. Family history and brain injuries account for other cases.
However, the Epilepsy Foundation say the cause is unknown in 60 percent of people.
People with epilepsy and their doctors are expressing growing interest in alternative therapies.
Although antiepileptic drugs (AEDs) help most people control their symptoms, these do not work for everyone. Furthermore, some people are concerned about the long-term safety of these drugs.
Complementary health practices for epilepsy, such as the eight natural remedies discussed here, are designed for use in combination with AEDs.
After talking to a doctor, and before beginning natural treatments, people with epilepsy should ensure they are working with a well-qualified and informed therapist.
Common complementary treatments for epilepsy include the following:
Cannabis sativa, or marijuana, as it is commonly known, has been used to treat convulsions for centuries. Today, it is attracting increasing attention from people with epilepsy, clinicians, and researchers.
Interest in the use of medical marijuana is particularly strong for the roughly 1 million U.S. residents whose seizures are not controlled by AEDs. Some families with young children, suffering from severe seizures, have moved to one of the 22 states where medical marijuana use is legal.
Charlotte’s Web is a strain of cannabis bred to contain high levels of CBD, a part of the plant showing promise against seizures. It is named after a child whose convulsions dropped from more than 300 a week to 2-3 a month with this treatment.
However, since broad-based, well-designed scientific studies have yet to prove the effectiveness of marijuana in treating epilepsy, doctors do not generally recommend its use.
Diet is one of the earliest forms of treatment for epilepsy and is used with contemporary variations to make it easier for children and adults to adopt.
The ketogenic diet is a high-fat, low-carbohydrate diet that has had some success in reducing seizures in children who cannot tolerate or benefit from AEDs. It requires extensive commitment and monitoring.
The Atkins diet is a high-protein, low-carbohydrate diet that is less restrictive and has shown positive effects.
Low glycemic index treatment (LGIT) is similar but allows for a targeted level of carbohydrate consumption.
Herbs are used for many illnesses by 80 percent of the world’s population. Remedies drawing on Chinese traditions have shown promise in treating epilepsy.
Some herbs, such as chamomile, passionflower, and valerian, may make AEDs more effective and calming.
However, ginkgo, ginseng, and stimulating herbs containing caffeine and ephedrine can make seizures worse.
St. John’s wort can interfere with medications and make seizures more likely, similarly to evening primrose and borage.
Caution is advised when working with all these herbs.
It is important to remember that herbs are not monitored by the U.S. Food and Drug Administration (FDA). If any herbs are used, they should be researched and bought from reputable sources.
Low levels of the B6 vitamin have been known to trigger seizures.
Magnesium, vitamin E, and other vitamins and nutritional supplements, have been identified as either promising or problematic for treating epilepsy.
Along with vitamin B6, magnesium, and vitamin E, which have been found to be helpful in treating epilepsy, doctors have found treatment with manganese and taurine reduced seizures, as well.
Thiamine may help improve the ability to think in people with epilepsy.
When AEDs do not work, some people have successfully used biofeedback to reduce seizures.
With the use of extensive training and a machine that detects electrical activity in the brain, the technique teaches individuals to recognize the warning signs of seizures, and train their brains to prevent a full-blown attack.
There are many different practices that people with epilepsy can follow on their own to help them feel calmer, relax their muscles, get better sleep, and enjoy a better state of mind.
All these actions taken together can help reduce seizures and make it easier for people to manage their epilepsy.
People should be cautious if trying meditation, as this can change the electrical signals in the brain.
Some essential oils used in aromatherapy, such as lavender, chamomile, jasmine, and ylang-ylang, have been found to be effective in preventing seizures when used with relaxation techniques.
However, the Epilepsy Society report that others may provoke seizures. These include spike lavender, eucalyptus, camphor, sage, rosemary, hyssop, and fennel.
While acupuncture does not seem to be helpful in preventing seizures, people with epilepsy find it can reduce the stress of living with the condition.
There is little evidence on chiropractic care, but it also may be among the natural treatments people with epilepsy find useful.
Education and avoidance can have a big impact on quality of life for people with this condition.
Many of those with epilepsy find that their seizures develop in response to specific triggers. This is the case for people with photosensitive epilepsy.
Learning how to avoid situations and stimuli that could spark a seizure can be very helpful. Some children may learn to avoid using video games in dark rooms, for example, or to cover one eye when exposed to flashing lights.
For many practices, there has not been enough study to give a definite answer to this question, one way or the other.
The following overview of the top natural treatments for epilepsy offers a quick summary of their reported effectiveness:
Many reports on the effectiveness of complementary treatments for epilepsy come from personal experience, and from studies that are not considered conclusive.
Most importantly, people should always talk to their doctor before trying natural treatments to help ease their symptoms.
0:12 I would like to tell you about the most embarrassing thing that has ever happened to me in my years of working as a palliative care physician. This happened a couple of years ago. I was asked as a consultant to see a woman in her 70s — retired English professor who had pancreatic cancer. I was asked to see her because she had pain, nausea, vomiting … When I went to see her, we talked about those symptoms and in the course of that consultation, she asked me whether I thought that medical marijuana might help her. I thought back to everything that I had learned in medical school about medical marijuana, which didn’t take very long because I had learned absolutely nothing. And so I told her that as far as I knew, medical marijuana had no benefits whatsoever. And she smiled and nodded and reached into the handbag next to the bed, and pulled out a stack of about a dozen randomized controlled trials showing that medical marijuana has benefits for symptoms like nausea and pain and anxiety. She handed me those articles and said, “Maybe you should read these before offering an opinion … doctor.”
1:30 So I did. That night I read all of those articles and found a bunch more. When I came to see her the next morning, I had to admit that it looks like there is some evidence that marijuana can offer medical benefits and I suggested that if she really was interested, she should try it. You know what she said? This 73-year-old, retired English professor? She said, “I did try it about six months ago. It was amazing. I’ve been using it every day since. It’s the best drug I’ve discovered. I don’t know why it took me 73 years to discover this stuff. It’s amazing.”
2:11 That was the moment at which I realized I needed to learn something about medical marijuana because what I was prepared for in medical school bore no relationship to reality.
2:22 So I started reading more articles, I started talking to researchers, I started talking to doctors, and most importantly, I started listening to patients. I ended up writing a book based on those conversations, and that book really revolved around three surprises — surprises to me, anyway. One I already alluded to — that there really are some benefits to medical marijuana. Those benefits may not be as huge or as stunning as some of the most avid proponents of medical marijuana would have us believe, but they are real. Surprise number two: medical marijuana does have some risks. Those risks may not be as huge and as scary as some of the opponents of medical marijuana would have us believe, but they are real risks, nonetheless. But it was the third surprise that was most … surprising. And that is that a lot of the patients I talked with who’ve turned to medical marijuana for help, weren’t turning to medical marijuana because of its benefits or the balance of risks and benefits, or because they thought it was a wonder drug, but because it gave them control over their illness. It let them manage their health in a way that was productive and efficient and effective and comfortable for them.
3:37 To show you what I mean, let me tell you about another patient. Robin was in her early 40s when I met her. She looked though like she was in her late 60s. She had suffered from rheumatoid arthritis for the last 20 years, her hands were gnarled by arthritis, her spine was crooked, she had to rely on a wheelchair to get around. She looked weak and frail, and I guess physically she probably was, but emotionally, cognitively, psychologically, she was among the toughest people I’ve ever met. And when I sat down next to her in a medical marijuana dispensary in Northern California to ask her about why she turned to medical marijuana, what it did for her and how it helped her, she started out by telling me things that I had heard from many patients before. It helped with her anxiety; it helped with her pain; when her pain was better, she slept better. And I’d heard all that before. But then she said something that I’d never heard before, and that is that it gave her control over her life and over her health. She could use it when she wanted, in the way that she wanted, at the dose and frequency that worked for her. And if it didn’t work for her, then she could make changes. Everything was up to her. The most important thing she said was she didn’t need anybody else’s permission — not a clinic appointment, not a doctor’s prescription, not a pharmacist’s order. It was all up to her. She was in control.
5:00 And if that seems like a little thing for somebody with chronic illness, it’s not — not at all. When we face a chronic serious illness, whether it’s rheumatoid arthritis or lupus or cancer or diabetes, or cirrhosis, we lose control. And note what I said: “when,” not “if.” All of us at some point in our lives will face a chronic serious illness that causes us to lose control. We’ll see our function decline, some of us will see our cognition decline, we’ll be no longer able to care for ourselves, to do the things that we want to do. Our bodies will betray us, and in that process, we’ll lose control. And that’s scary. Not just scary — that’s frightening, it’s terrifying. When I talk to my patients, my palliative care patients, many of whom are facing illnesses that will end their lives, they have a lot of be frightened of — pain, nausea, vomiting, constipation, fatigue, their impending mortality. But what scares them more than anything else is this possibility that at some point, tomorrow or a month from now, they’re going to lose control of their health, of their lives, of their healthcare, and they’re going to become dependent on others, and that’s terrifying.
6:17 So it’s no wonder really that patients like Robin, who I just told you about, who I met in that clinic, turn to medical marijuana to try to claw back some semblance of control. How do they do it though? How do these medical marijuana dispensaries — like the one where I met Robin — how do they give patients like Robin back the sort of control that they need? And how do they do it in a way that mainstream medical hospitals and clinics, at least for Robin, weren’t able to? What’s their secret? So I decided to find out.
6:54 I went to a seedy clinic in Venice Beach in California and got a recommendation that would allow me to be a medical marijuana patient. I got a letter of recommendation that would let me buy medical marijuana. I got that recommendation illegally, because I’m not a resident of California — I should note that. I should also note, for the record, that I never used that letter of recommendation to make a purchase, and to all of you DEA agents out there —
7:22 love the work that you’re doing, keep it up.
7:26 Even though it didn’t let me make a purchase though, that letter was priceless because it let me be a patient. It let me experience what patients like Robin experience when they go to a medical marijuana dispensary. And what I experienced — what they experience every day, hundreds of thousands of people like Robin — was really amazing. I walked into the clinic, and from the moment that I entered many of these clinics and dispensaries, I felt like that dispensary, that clinic, was there for me. There were questions at the outset about who I am, what kind of work I do, what my goals are in looking for a medical marijuana prescription, or product, what my goals are, what my preferences are, what my hopes are, how do I think, how do I hope this might help me, what am I afraid of. These are the sorts of questions that patients like Robin get asked all the time. These are the sorts of questions that make me confident that the person I’m talking with really has my best interests at heart and wants to get to know me.
8:33 The second thing I learned in those clinics is the availability of education. Education from the folks behind the counter, but also education from folks in the waiting room. People I met were more than happy, as I was sitting next to them — people like Robin — to tell me about who they are, why they use medical marijuana, what helps them, how it helps them, and to give me advice and suggestions. Those waiting rooms really are a hive of interaction, advice and support.
9:03 And third, the folks behind the counter. I was amazed at how willing those people were to spend sometimes an hour or more talking me through the nuances of this strain versus that strain, smoking versus vaporizing, edibles versus tinctures — all, remember, without me making any purchase whatsoever. Think about the last time you went to any hospital or clinic and the last time anybody spent an hour explaining those sorts of things to you. The fact that patients like Robin are going to these clinics, are going to these dispensaries and getting that sort of personalized attention and education and service, really should be a wake-up call to the healthcare system. People like Robin are turning away from mainstream medicine, turning to medical marijuana dispensaries because those dispensaries are giving them what they need.
9:57 If that’s a wake-up call to the medical establishment, it’s a wake-up call that many of my colleagues are either not hearing or not wanting to hear. When I talk to my colleagues, physicians in particular, about medical marijuana, they say, “Oh, we need more evidence. We need more research into benefits, we need more evidence about risks.” And you know what? They’re right. They’re absolutely right. We do need much more evidence about the benefits of medical marijuana. We also need to ask the federal government to reschedule marijuana to Schedule II, or to deschedule it entirely to make that research possible. We also need more research into medical marijuana’s risks. Medical marijuana’s risks — we know a lot about the risks of recreational use, we know next to nothing about the risks of medical marijuana. So we absolutely do need research, but to say that we need research and not that we need to make any changes now is to miss the point entirely. People like Robin aren’t seeking out medical marijuana because they think it’s a wonder drug, or because they think it’s entirely risk-free. They seek it out because the context in which it’s delivered and administered and used, gives them the sort of control they need over their lives. And that’s a wake-up call we really need to pay attention to.
11:16 The good news though is that there are lessons we can learn today from those medical marijuana dispensaries. And those are lessons we really should learn. These are often small, mom-and-pop operations run by people with no medical training. And while it’s embarrassing to think that many of these clinics and dispensaries are providing services and support and meeting patients’ needs in ways that billion-dollar healthcare systems aren’t — we should be embarrassed by that — but we can also learn from that. And there are probably three lessons at least that we can learn from those small dispensaries.
11:51 One: we need to find ways to give patients more control in small but important ways. How to interact with healthcare providers, when to interact with healthcare providers, how to use medications in ways that work for them. In my own practice, I’ve gotten much more creative and flexible in supporting my patients in using drugs safely to manage their symptoms — with the emphasis on safely. Many of the drugs I prescribe are drugs like opioids or benzodiazepines which can be dangerous if overused. But here’s the point. They can be dangerous if they’re overused, but they can also be ineffective if they’re not used in a way that’s consistent with what patients want and need. So that flexibility, if it’s delivered safely, can be extraordinarily valuable for patients and their families. That’s number one.
12:39 Number two: education. Huge opportunities to learn from some of the tricks of those medical marijuana dispensaries to provide more education that doesn’t require a lot of physician time necessarily, or any physician time, but opportunities to learn about what medications we’re using and why, prognoses, trajectories of illness, and most importantly, opportunities for patients to learn from each other. How can we replicate what goes on in those clinic and medical dispensary waiting rooms? How patients learn from each other, how people share with each other.
13:13 And last but not least, putting patients first the way those medical marijuana dispensaries do, making patients feel legitimately like what they want, what they need, is why, as healthcare providers, we’re here. Asking patients about their hopes, their fears, their goals and preferences. As a palliative care provider, I ask all my patients what they’re hoping for and what they’re afraid of. But here’s the thing. Patients shouldn’t have to wait until they’re chronically seriously ill, often near the end of life, they shouldn’t have to wait until they’re seeing a physician like me before somebody asks them, “What are you hoping for?” “What are you afraid of?” That should be baked into the way that healthcare is delivered.
13:58 We can do this — we really can. Medical marijuana dispensaries and clinics all across the country are figuring this out. They’re figuring this out in ways that larger, more mainstream health systems are years behind. But we can learn from them, and we have to learn from them. All we have to do is swallow our pride — put aside the thought for a minute that because we have lots of letters after our name, because we’re experts, because we’re chief medical officers of a large healthcare system, we know all there is to know about how to meet patients’ needs.
14:31 We need to swallow our pride. We need to go visit a few medical marijuana dispensaries. We need to figure out what they’re doing. We need to figure out why so many patients like Robin are leaving our mainstream medical clinics and going to these medical marijuana dispensaries instead. We need to figure out what their tricks are, what their tools are, and we need to learn from them. If we do, and I think we can, and I absolutely think we have to, we can guarantee all of our patients will have a much better experience.
15:00 Thank you.
From May 20 to September 1 2014, Epilepsia conducted an online survey seeking opinions about the use of medical marijuana and cannabidiol (CBD) for people with epilepsy. This study reports the findings of that poll.
The survey consisted of eight questions. Four questions asked if there were sufficient safety and efficacy data, whether responders would advise trying medical marijuana in cases of severe refractory epilepsy, and if pharmacologic grade compounds containing CBD should be available. Four questions addressed occupation, geographic region of residence, if responders had read the paper, and if they were International League Against Epilepsy/International Bureau for Epilepsy (ILAE/IBE) members.
Of 776 who started or completed the survey, 58% were patients from North America, and 22% were epileptologists and general neurologists from Europe and North America. A minority of epileptologists and general neurologists said that there were sufficient safety (34%) and efficacy (28%) data, and 48% would advise using medical marijuana in severe cases of epilepsy. By comparison, nearly all patients and the public said there were sufficient safety (96%) and efficacy (95%) data, and 98% would recommend medical marijuana in cases of severe epilepsy. General physicians, basic researchers, nurses, and allied health professions sided more with patients, saying that there were sufficient safety (70%) and efficacy (71%) data, and 83% would advise using marijuana in severe cases. A majority (78%) said there should be pharmacologic grade compounds containing CBD, and there were no differences between specialists, general medical personal, and patients and the public.
This survey indicates that there is a wide disparity in opinion on the use of medical marijuana and CBD in the treatment of people with epilepsy, which varied substantially, with fewer medical specialists supporting its use compared with general medical personal, and patients and the public.
Continue —> Fewer specialists support using medical marijuana and CBD in treating epilepsy patients compared with other medical professionals and patients: Result of Epilepsia’s survey – Mathern – 2014 – Epilepsia – Wiley Online Library