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Episode 24: What Patients Are Saying About Cannabis

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Voice-over: Welcome to Spotlight on Migraine, a podcast series hosted by the Association of Migraine Disorders. Through personal stories and interviews with experts, we expose the true scope of migraine by exploring symptoms, treatments, research topics, and more. This episode is brought to you in part by our generous sponsors, Amgen, Novartis, and Alder BioPharmaceuticals.

 

In this episode, we share a presentation by Jodie Epstein, who spoke at the 2019 Migraine Symposium. Jodie candidly tells her personal story that led her into medical cannabis advocacy. She also shares valuable anecdotal evidence gathered through a survey from her online community, MigraineBuds, and findings from three compelling scientific studies.

 

Since 2015, Amgen and Novartis have been working together to develop pioneering therapies in Alzheimer’s disease and migraine. Together, Amgen and Novartis share in a mission to fight migraine and the stereotypes and misconceptions surrounding this debilitating disease.

 

Jodie Epstein: — Epstein. I’m from Toronto. I’m a patient advocate and a cannabis educator. I do work with a cannabis clinic in Toronto. That sort of came to be after I was a patient there for several years. I was very impressed with the education that they gave me as a patient, and my passion for it just grew, and it’s still very much going strong.

 

So I’m here to tell you how migraine patients are finding relief with medical cannabis. So I’m sure that we can all agree that we’re lacking evidence to support the use of cannabinoids for migraine and headache disorders, but there’s actually more research than you think, and I’m going to chat about that in a little while. I’ve also got some patient-driven data that I’m hoping might intrigue those who are still skeptical in the room.

 

So a little bit about me, lucky you guys. So this is me at the approximate age when I first experienced a complex migraine with aura and full-blown aphasia. And this is sort of me in the last 8 years. This is my 30s in a nutshell. I was diagnosed with chronic migraine at 29, and the last 8 years has seen me sitting in more doctors’ offices than on my couch and at my job combined. I’m sure that you’ve all seen things like this an awful lot.

 

So one part of the story that’s relevant to the rest of what I’m going to show you is that I hit a rock bottom during this journey and I landed in the hospital with a 14-day intractable migraine. And they had me in there for 3 days. They had me on a morphine drip, and when they discharged me at the end of 3 days, I was blissfully migraine-free, but they also gave me a nice case of opioid withdrawal to take home as a souvenir.

 

So I wasn’t given a lot of direction as far as how to manage from there. I did have a brand-new script for some new triptans and for some oxycodone, which my pain specialist was recommending that I take every day to stay on top of the pain. Yeah, not the greatest idea, not for me at the time, because I already had a hunch that I was dealing with a pretty nasty case of rebound, or medication overuse headache. 

 

So I decided to do the opposite, and I pledged to take myself off of triptans and opioids for 30 days, and it was probably one of the hardest things I’ve ever done. I realize now I probably should have tapered under the supervision of a doctor. That wasn’t so smart of me to go cold turkey, but I was desperate, and I wasn’t getting the greatest advice at the time. 

 

So the 2 weeks that ensued felt more like 10 weeks, but the migraines and withdrawal headaches got much worse before they got better. There were times where I desperately wanted to give in to that bottle of pills, but every time that I reached for them, my husband, bless him, would hand me my vaporizer instead. It’s just a small herbal vaporizer for dried cannabis, and I would vape on it. And I would vape, and I vaped, and I vaped. And I leaned on it pretty hard, I have to admit, but it was the only thing I was using for pain.

 

But in time, the headaches would lift, the migraines would lift. I would experience a day without pain, then 2 days, and then I remember waking up for the first time without migraine — for the first time in probably a couple of years. It was pretty incredible. So I kept using it, and it hasn’t let me down since. 

 

I’ve always been a believer in cannabis, but it was that experience that led me to become an advocate. I wanted to shout about it after that. I wanted to learn everything I could, but there was so little information available about medical cannabis specific to migraine. That was frustrating. And I wanted to compare notes with other patients. Certainly, I wasn’t the only migraine patient that had found cannabis. But there was no one for me to connect with, so I decided I needed to fill the gap, and I launched MigraineBuds.

 

So in case we’re new to you, MigraineBuds is an online patient community, and we’re dedicated solely to the topic of medical cannabis for treating migraines and headaches. Despite our very niche focus, our community has grown up to nearly 3,000 members, and they’re from all over the world, and we’re growing every day.

 

So we welcome patients and practitioners both of all levels of cannabis experience, but we’re especially passionate about educating newcomers. So we like to be a safe space where people can share experiences, ask any questions they feel they would like to know. There’s no stupid questions, but we wanted them to have an environment where there was no fear of judgement, because we’re already facing enough stigma as it is as migraine patients that when you add in the misconceptions and stigma that go along with being a medical cannabis patient, well, you can see why we’re focused on education.

 

So what do we talk about in MigraineBuds? We cover a lot, but basically, the canna-basics is what we talk about. So this can mean the difference in THC and CBD, cannabinoid ratios, the difference between smoking and vaping, edibles and oils, dosing, which delivery methods apply to which pain type. We cover it all. Oh, CBD, obviously. We spend an awful lot of time on CBD. It’s probably the number one reason patients join our group.

 

So we discuss the differences between cannabis-derived CBD and hemp-derived CBD, how to know you’re buying a quality product, because especially in the United States, the hemp CBD market is — it’s growing out of control, and there’s a lot of companies out there just trying to make a buck off of a patient who may not know better. So a lot of the times, if we hear a patient say, “CBD doesn’t really work for me,” more often times than not, we find that they’re using a very low-quality or very weak product that has not much more than 2 or 5 mg/ml, whereas I take something more like 30 to 50 mg a day, just to give you an idea.

 

So a lot of our patients, a lot of our members want quick answers to the difficult questions. So I didn’t want to be coy, so I gave you a few of them. So why isn’t this an easy question — most effective strains of cannabis for migraine? Well, if I buy Blue Dream in Toronto and you buy Blue Dream in Providence and we have a friend that buys Blue Dream in L.A., they’re grown in very different environments. So depending on the weather, the soil, the nutrients or pesticides that are being used, and the length of the growth, and curing techniques, we could have three very different products on our hands. So it’s very difficult for me to say what’s going to work for somebody else. 

 

We’re all so different as it is that even if they were all identical, there’s no way of saying what’s going to help you. So what we really try to do instead is walk the patient through the trial-and-error process of finding what works for them rather than sending them directly to a specific strain name that — they don’t really mean anything anyways.

 

Is there value in anecdotal evidence? Well, I’m really hoping so, because I spend a lot of time with it. So my amazing and lovely moderator for my group, Liana Knapp, drove all the way here today, and she helped me put together a survey just for you guys just so I could show you guys some neat figures. 

 

And there is definitely some anecdotal evidence that is less credible. If somebody says, “Oh, yes, I have migraine, and cannabis works; it changed my life,” that’s great to hear, but it’s very vague and doesn’t really prompt us to give it much more thought than that. We want to know the who, the what, the when, the where, the why. We want the specifics; otherwise, it doesn’t really help us very much. So I do believe that there’s anecdotal evidence that’s definitely more helpful than others.

 

So survey results — so we’ve got migraine symptoms most improved by medical cannabis. Not surprisingly, we’ve got headache at the top, stress and anxiety; and at the bottom — that’s kind of interesting as well — aura, vertigo, and fatigue. Patients with vestibular migraine don’t do so well with THC just due to the vertigo, so I’m not surprised to see it down there. And the aura I’m curious about as well since CBD has such a high anti-inflammatory aspect to it that I’m curious what they’re actually using. Next survey, I guess.

 

So next we have most effective cannabinoids for acute migraine pain. We hear a lot about preventative, but we wanted to know what people are using when they’re going through an attack. And not surprisingly, THC tested much higher, and used in the context of acute pain, I’m not so surprised. 

 

I think we’re seeing a lower percentage of CBD users. It’s for two main reasons. The first is that it seems to be quite effective for a lot of migraine patients when it’s used daily as a preventive rather than an abortive. I have personally successfully aborted a few migraines completely with CBD, but it required dosages so much higher than what most patients are taking at home. And even if they found success in doses that high, I think it would be too costly for them to continue with that success. That’s just a personal opinion. Hopefully, that will be tested at some point.

 

So this one’s pretty great. So before our respondents were treating their migraines with cannabis, they had approximately 19 migraine days per month, and we have a 47% fewer migraines per month figure coming at us, so they went down to — the average was 10. 

 

Reduction in baseline pain — so we found that there was a 3.3 average drop in pain scale. So patients were experiencing — the average was 7.8 out of 10 in baseline pain prior to starting cannabis or using it in their regimen, and since they’ve been using cannabis, it dropped down to a 4.5. So again, cannabis isn’t a cure. It’s going to take some other treatments as well to get you down to a lower pain average, but this could be a really, really effective tool to have in your toolkit.

 

So you guys remember my story about spending some time in hell with medication overuse headache. I was really curious about the reduction in the use of rescue medications — so approximately 12 rescue medications per month for those before they began using cannabis, and all the way down to 4 afterwards. So that’s a 59 percent reduction, and that’s pretty hard for me to ignore even though this isn’t a fancy clinical trial or an official research study. I’m hoping that figures like this will at least raise interest in creating those studies that are going to change the minds of all of our favorite doctors, and we’ll find some more people that might be open to assisting their patients with trying this treatment option.

 

Which leads us to scientific research. I had a hard time — there’s a lot of these, actually. I’ve got 14 to 20 of them up on our website, which is migrainebuds.com — I didn’t mean to drop that, but — so if anyone wanted to read all of them, they’re there for you all in one spot. I decided to choose three of the more recent ones that I found really helpful. I didn’t want to make like a huge slide full of text, so I’m just going to nutshell it for you while you read the citations on the side.

 

So there was a pretty well-known study in Colorado in 2016, and it confirmed that frequency of migraine was decreased with medical cannabis use. A very well-known study that was done in Italy in 2017 found that cannabis is as effective as current pharmaceutical therapies for migraine prophylaxis. 

 

And then the third study, I’m just going to nutshell. It’s interesting because it’s a neurologist named Eric Baron out of Cleveland, and he joined forces with Tilray, which is one of Canada’s largest licensed producers of legal medical cannabis. They analyzed the data from something like over 2,000 patients, most of whom had migraine, and they found that hybrid strains were preferred amongst migraine patients. And he found the dominant terpenes within those strains — and terpenes are the essential oils found in the cannabis plant. They account for the aroma and flavor, and they also have a considerable amount of therapeutic qualities as well. And we don’t know enough about them yet, but you’re going to be hearing that word a lot in the years to come.

 

So he’s found the top strains and the dominant terpenes within the strains. He’s also found that many pain patients substituted opioid medications with cannabis. So this could be the key, with some more research, to a lot of the issues that we face as patients. And of course, he said, “Prospective studies are needed.” Most of the studies end with something like that — more research needed.

 

So just a few final thoughts for you guys. I think I mentioned this already. Medical cannabis is not a cure. I’m not standing here trying to tell you this is the be-all, end-all and it’s sent from the heavens. There are people who should not use it. It’s not without side effects — perhaps less than other medications we take, but it’s up to the doctor and the patient to assess those risks. But a lot of us view it as a tool, a new tool to use.

 

Obviously, we need more research, but that doesn’t mean we have none. I don’t see a lack of research as a reason to deny a viable treatment from those people that desperately need it. Most of us that have come to this point feel it’s a last hope. 

 

Patients deserve some credit. After many years of treatment, they know what works for them and what doesn’t, so don’t be so quick to dismiss anecdotal evidence. It actually generates interest in scientific research, and it can also provide the foundation for all kinds of different studies. 

 

Education’s a big one for me. I believe it’s imperative for both patients and physicians. A physician cannot help his or her patient unless he or she is educated on the subject themselves. This is also imperative to overcome the stigma that we’re all facing. 

 

Last point, get involved. Advocate for yourself, advocate for more research, and advocate for policy change. You have a voice. We recommend using it, and that would be that. Thank you guys so much.

[applause]

[music]

Voice-over: Thank you for tuning in to Spotlight on Migraine. For more information on migraine disease, please visit MigraineDisorders.org.

 


This podcast is sponsored in part by Amgen/Novartis and Alder BioPharmaceuticals.

*The contents of this podcast/video are intended for general informational purposes only and do not constitute medical or legal advice; the content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of a physician or other qualified health provider with any questions you may have regarding a medical condition. The speaker does not recommend or endorse any specific course of treatment, products, procedures, opinions, or other information that may be mentioned. Reliance on any information provided by this content is solely at your own risk.

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