Cannabis Hyperemesis Syndrome (CHS) – It’s REAL But Rare – with Alice Moon

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Watch as I chat with Alice Moon, a cannabis industry expert who suffers from this heartbreaking condition.

What is CHS?

Cannabis Hyperemesis Syndrome(CHS) is a very rare but real risk of cannabis use. Some attribute CHS to pesticides like neem oil, but that has been disproven.

CHS is characterized by cyclic uncontrollable vomiting that does not respond to traditional antiemetics. CHS features relief only from HOT showers and baths, and relief from capsaicin cream.

CHS is very RARE, and usually develops after many years of consistent use. Patients who develop CHS can NO LONGER consume any cannabis products. Failure to address CHS can be deadly.

BIO: Alice Moon is an entrepreneur with 8 years of experience working in the cannabis industry. She currently wears many hats, working as The Director of Communications for Blunt Talks, a monthly event series that is like “Ted Talks for Cannabis.” Additionally, she is the Account Coordinator for RRPR Creative, a multi city PR firm focused on cannabis and hospitality. She is most notably known for founding her own cannabis tech startup, which was nominated Best Tech 2017 by Dope Magazine Awards. Her work in the cannabis industry has landed her features in LA Weekly, High Times, Merry Jane, Business Insider, and Civilized, with appearances on CNN and Viceland’s Bong Appetit.

Connect with Alice:

 

READ THE TRANSCRIPT:

Jessie Gill, RN: (00:00)
Okay. Hi, I’m Jessie. I’m the cannabis nurse and the founder of Marijuana Mommy and you’re watching Patients are the Proof ,where we talk about the real benefits of cannabis. Today I’m talking with Alice Moon. Alice is an entrepreneur with eight years of experience working in the cannabis industry. She currently wears many hats working as the director of communications for Blunt Talks, a monthly event series that is like Ted talks for cannabis. Additionally, she is the account coordinator for our RPR creative, a multi city PR firm focused on cannabis and hospitality. She is most notably known for founding her own cannabis tech startup, which was nominated best tech 2017 by dope magazine awards. Her work in the cannabis industry has landed her features in La weekly high times. Mary Jane, business insider and civilized with appearances on CNN and Viceland’s Bong Appetit.

Speaker 1: (02:40)
Beautiful. Hi. Thank you so much for having me on.

(02:43)
Thank you so much for talking to me today. I really, really, really appreciate it. I’ve been wanting to chat with you a while and you have a really incredible, and I’m a really incredible story that really touches my heart and should really, you know, touches the hearts of so many patients and, and cannabis consumers out there. You want to talk about it a little bit?

(03:06)
I have cannabinoid hyperemesis syndrome, which is an unfortunate side effect that happens to some cannabis users. Um, so use a lot of cannabis over an extended period of time. And the side effects include intense vomiting, nausea, abdominal pain, weakness, hot sweats, a bunch of not fun stuff.

Jessie Gill, RN: (03:28)
Horrible, horrible things. And you have been through so much. So it’s, you know, it’s a very, very rare disorder. Not a lot of people know about it. It’s commonly called CHS. It can be really, really devastating and it takes a whole lot of, you know, tests of ruling out other issues before you really get that diagnosis. How did, how did it all start? When did you realize there was a problem?

(03:57)
So I was doing edible reviews for years. 2015 is kind of when when I started doing it, and 2016 I started throwing up randomly every few months, I would just throw up, and then it’d be okay. And so the doctor said I had acid reflux. I didn’t get any better. The throwing up started to increase. In 2017 I quit drinking, thinking maybe that would help. Didn’t help. Come 2018 I was throwing up every day and it was, it was just too much. And I saw another doctor and she said, it’s probably the weed and I didn’t want to believe it. I’d heard of CHS before. And I thought, that’s not true. That can’t be real. So when the doctor said that, I was like, no, run a bunch of tests on me. Like just let’s figure it out. She said, no, I’m not putting your body through that quit cannabis for three months. Okay. So I said, I’m going to have one last one last hurrah and went to a infused dinner, five course infused dinner with cannabis pairings. And that started my first severe episode where it was all day, every day for two and a half weeks nonstop, throwing up– a sip of water, it would come up. I passed out in my front yard one day because I was throwing up so much, I was too weak to even hold the toilet. It was nonstop. And the only thing that would temporarily relieve the symptoms is hot baths. So if I was in the hot bathtub, I wasn’t throwing up but the second, I got out of the tub, I was vomiting. So there’s a lot of nights where I slept on the floor and my bathroom because I just needed to go between the toilet and the bath tub. And it was so scary. There’s not a lot of information out there. Someone told me about capsaicin cream, a cayenne pepper based cream. So at one in the morning, my roommate went out and got it for me. I’ve rubbed it all over my stomach, didn’t understand that it was cayenne pepper. So then I was in severe pain an area too. It was excruciating. And so then I went and I got a wet rag and I was scrubbing my stomach, not knowing that water makes it worse. So then I was just in so much pain where it’s like, do I want to be vomiting, or d do I want to be in and burning pain, you know, um. And it just was not a fun experience at all. So, in that time frame, those two weeks I went to urgent care twice, got IVs and the second time I went, the doctor said, okay, you need to get a bunch of tests done. Let’s just rule out everything else. So they did a whole bunch of tests on me and everything came back saying I was healthy. So it, it, it was cannabis. It like, it made it very clear.

Jessie Gill, RN: (06:43)
During that whole episode where you still consuming.

(06:47)
No, I quit consuming that night I went to the dinner. That was my last time I consumed, during that period. No consumption for two and a half weeks during that time and I was just kind of waiting for it to end, you know, when am I gonna stop throwing up? When am I going to be able to hold down a sip of water? Like it was nonstop. And honestly I looked like I was dying. I lost so much weight. My eyes were sunken in. I was so skinny and I’m already a thin frame already. And it was just, it was a very scary experience. And so then I quit using cannabis for three months and started to smoke again. I use pesticide free weed and my symptoms came back. That time was only four days of an episode. I kind of, I got myself up and moving every day. I was just like, trying to think if I look good, I’ll feel good. And I took a little bit of CBD and I use capsaicin cream. Now. I don’t know if any of that played a role in the episode being so short. Um, but it was only four days of throwing up, which was great.

Jessie Gill, RN: (07:53)
That’s great…well, comparatively.

(07:56)
Yeah. Yeah. Four days –better. And so then from there I started using hemp derived CBD. And you use that for a few months in low doses until December 22nd when I use it in a high dose.

Jessie Gill, RN: (08:07)
Was it a full-spectrum that you were using?

(08:11)
Yeah. and from there, um, I got the worst episode I’ve ever had. It was 16 days of nonstop throwing up and I had two urgent care visits, an at-home nurse visit, and ultimately landed in the ER and was hospitalized for four days. I got two ulcers, a hernia and a bacteria infection from all the throwing up. Narly experiences. I wouldn’t want it to happen to my worst enemy, like at all.

Jessie Gill, RN: (08:43)
So wow. That was how long ago was that one?

(08:48)
So that episode it started December 22nd. And so, uh, mid January is when I was better, so missed with my family. New Year’s I was at home and just, waiting for it all to end basically. Then that took weeks of recovery afterwards to get my health back in order. I just, I was so weak and then in pain from all the tests they done, you know, a biopsy and endoscopy is, yeah you know, I was sore on the inside from that as well. And you know, getting a potassium shot or IV when I was in the hospital, that is one of the most painful things I’ve ever experienced. I was just in tears, like my whole arm just shooting up and down with pain. It was just one thing after the next with the whole experience. It’s not just you’re throwing up, it’s like there’s so many layers to this whole situation.

Jessie Gill, RN: (09:47)
Was that your last episode?

(09:48)
That one that that was, yeah. So I haven’t used any CBD or THC since January. I don’t even use topicals. And now secondhand smoke makes me sick, so I can’t go to events the way I used to. I used to go to events multiple times a week and now I have to be very mindful of where I’m going because I can throw up just from inhaling secondhand smoke.

Jessie Gill, RN: (10:12)
That is so heartbreaking because you know, for, you know, the average person who’s not in the industry, CHS sucks. And for patients it can be really devastating. But for you, not only is it affecting your health, but your career too. I mean, you’re so, so involved.

(10:29)
Yeah, my whole career, you know, I, that’s kind of why I shifted to doing PR because I realized I can’t, I can’t be an edible reviewer anymore. I can’t be considered an influencer when I can’t be trying products the way I was. So I had to just shift my direction and you know, I didn’t want to leave the industry. I love cannabis so much and just cause I can’t have it doesn’t mean others shouldn’t. I see all the benefits for it. I’m so passionate about it, but I was like, I can’t leave it, but my goodness does it stuck not having it and not being able to partake the way I used to. Uh, it’s not easy.

Jessie Gill, RN: (11:07)
No. And it’s such a controversial topic in the cannabis industry, which surprises me, you know? I mean there are, you know, there’s a significant portion of cannabis users who really want to believe that there are no negative effects of cannabis, which isn’t true. There are risks with all substances, cannabis included and CHS is very, very rare, but it’s one of them and it’s very real. I’m always shocked at how many people believe and insist that it’s just neem oil poisoning and Neem oil, you know what Neem oil is, it’s used as a natural pesticide. It’s used as a natural pesticide and neem oil poisoning can be very similar to CHS. There are differences, like for example, you mentioned hot showers. That’s one of like the major characteristics, or major signs that it’s quite possibly, or quite likely to be CHS or cannabis hyperemesis syndrome. You know, if a hot shower relieves the nausea and that’s very, very characteristic. And then you probably tried a lot of antiemetics during those, you know, an anti-nausea medications during your visits and I’m sure none of them worked.

(12:20)
Nope. None of them work yet. They put it through my IV, gave to me orally, and none of it worked at all. That’s also a feature of CHS. It’s classic. That’s, you know, what we see and it’s again so rare. It’s seen in people who usually use for years and who are consuming high doses regularly. I know you were obviously reviewing edibles and you know, consuming more than most people. How long were you using cannabis before you developed it?

(12:48)
Four, five, six years? I wasn’t consuming daily throughout that whole, those years, but I was consuming, you know, something …a lot, you know, like 5-10 milligrams or up to 100 milligrams, depending on how I was feeling, of an edible. I’d smoke, a joint, you know, I wasn’t smoking 10 joints a day, wasn’t doing 5 joints a day. It was pretty low or what I consider low, but to someone else it might be considered a lot. So it was all kind of just, you know, relative. I want to touch base on the pesticide poisoning you mentioned. That is so frustrating to me. How many people say it’s Neem, it’s neem, it’s neem. And that’s kind of why I was a guniea pig last year cause I’m like, let me just show you why it’s not. So I started smoking pesticide-free weed and it came back. Okay. , smoke, or consuming only hemp-derived CBD, and I knew the source of it and they were not using neem. Okay. And then I’ve talked to people who’ve grown their own flower and I haven’t used it (neem oil) and they’ve gotten it (CHS). So yeah, those signs are like, it is not pesticide poisoning. Like I’m not denying that pesticide poisoning is real. That is a thing. But this is not that. It’s not. I strongly believe that it’s an overload of the system, of the endocannabinoid system. And the theory that I have read that seems makes the most sense is the TRPV1 receptor, which regulates digestion. It gets shut off from too much cannabis. High amounts of heat, like the hot showers, or capsaicin cream, reactivate that receptor. So that is what seems to make the most sense to me. But this is something we don’t know a lot about. But the receptors are getting messed up somehow and it’s cannabinoids doing it. I want it all to get really figured out. It’d be great if we could get that handled.

Jessie Gill, RN: (14:51)
There’s not a lot of research on it. Right? I know you’ve been looking into it a lot.

(14:55)
You know, I never thought I was going to be sitting around, you know, on a Saturday night reading about CB1 and CB2 receptors. But here I am combing through a whole bunch of stuff and the other day I found a study that they did on mice about the CB1 receptors and uh, mice that have a high amount of CB1 receptors are more likely to be more active and they had the urge to run. Those who had lesser amounts were not interested in that. And talking to people in the Facebook group I’m in, a lot of people when they have CHS coming on. They’re running a lot and they, it helps their episode if they’re running. And this is something that is new to me. Um, and um, I can’t remember the name of something that people have developed from running too much. It starts with an r Rumba, Rumba something. I can’t remember the name of.

Jessie Gill, RN: (15:47)
Rhabdomylosis?

Alice Moon: (15:49)
That! Yes, there’s been multiple people who’ve developed that.

Jessie Gill, RN: (15:53)
The muscles start breaking down and toxins build up in your body and your muscles, obviously become negatively effected. But yeah.

Alice Moon: (16:03)
Yeah, so there’s one documented study about that person having it. And then I’ve talked to two other people on my Facebook group that have also had that from running too much when they were sick. This is all like new to me, that aspect of it. But um, you know, why does that tie into it? You know, somehow it does though. People are getting an urge to run and made me think about how when I had my second episode, I was going for walks every day. I was keeping myself moving.

Jessie Gill, RN: (16:32)
Did that help at all?

(16:34)
It’s something, you know, I’m constantly trying to find out more information and piece these things together. No one in America is studying this, but Canada as of last week just announced that they are going to be putting funding towards research on CHS, so like crying happy tears during that. I have reached out to every medical department there like, let’s figure out why my endocannabinoid system is out of whack and why this is happening. Like I want some answers and I don’t want anyone else to go through what I went through, you know, it’s just such an awful experience and it’s affected me mentally and physically. So I’m really eager for answers to come through. And another thing that people are talking about is dopamine levels. It could be messing up with dopamine regulation in your body and somehow that is getting disrupted. So that’s another theory that I’m trying to look into. And someone told me that the dopamine receptors are connected to the TRPV receptors and there’s like a protein involved and a lot of science that I’m still trying to figure out. But some how all of this goes together and soon hopefully, there’ll be an answer based off of all these little pieces.

Jessie Gill, RN: (17:53)
I hope so because it’s something we don’t know how to prevent. And when you get a patient who’s become dependent on cannabis and finally gets off of opiates and their other medications, and then they develop CHS, it’s so devastating. It’s heartbreaking, you know, for them to have to go back on that pharmaceutical regimen. Um, but we have no idea. I mean, again, it’s so rare, but we have no idea how to prevent it and you know, how to, how to fix it. Another thing, um, is that, um, even in cases of synthetic cannabinoid use, like Marinol, we have seen case studies of CHS, which again shows that it’s not always the pesticides, or always the Neem oil. Maybe there’s a small percentage of people who are getting neem oil poisoning or pesticide poisoning, but you know, cannabis hyperemesis syndrome caused by high doses of cannabis is a real thing. Rare but real.

Alice Moon: (18:49)
Yeah. I have seen that study as well and I kind of refrain from bringing it up too much because then people are like say something about the fact that it’s synthetic and then they want to like change the conversation to that. So I’ve read that and that’s like totally something I was using as like a point with my situation. But then I just too many people were like, you just focusing on that aspect of it. So I was like, okay, I won’t touch on that part yet. Like we’re still trying to convince them the whole thing. Um, and you know, um, something that doctors have found that is successful is an antipsychotic medicine, Haldol,I think is what it’s called. Yeah. And so that has stopped symptoms for people. Yeah. But then you have the side effects of giving someone an antipsychotic. And I talked to someone who was in the emergency room and she was given this via IV and wasn’t it warned of what it was. And started having this mental flip out and didn’t understand what was going on and was just freaking out, but she wasn’t throwing up. So….

Jessie Gill, RN: (19:51)
fixed one issue, but it caused a whole bunch of others. But yeah, Haldol has been, and I could see that being used in people in very severe cases, you know, for a short period of time. But you’re right, they should absolutely be informed of what they’re taking. And you know, that’s something we kept like as a hospice nurse, we kept that in patients’ houses and you know, in case we needed it, you know, it was part of the emergency kit, um, that we kept at home. But, um, yeah, it, there are significant side effects.

Alice Moon: (20:21)
Yeah. Which is why I never wanted to touch that. I was like, I don’t want to try that. It’s not worth it to me to have that experience. Like, you know, and talking to people about their experience. I’m just like, ah, we, we shouldn’t be focused on like giving people that, let’s focus on finding why this is all happening. You know, that’s just creating a whole other problem. And there are people who have died from the symptoms of CHS. There’s people, um, they’ve gotten dehydrated, had organ failure and ultimately someone just very recently passed away. His mother is in the Facebook group I’m in and it is devastating and you know, for people to say, no, this can’t happen. Think about it. If you’re throwing up nonstop for weeks, yeah, your body can give out on you. Like it is totally possible. And I don’t want the media to spin this into cannabis is killing people. It’s just cannabis. It can, if they have too much and they have CHS and they’re going through this whole process. This is all happening together, you know? So I, I really don’t want more people to have to get to that point. It’s absolutely terrible.

Jessie Gill, RN: (21:32)
It’s heartbreaking. And you know, I’ve seen that mom too, and it breaks my heart too, cause I don’t feel like she’s getting support, uh, you know, from the cannabis industry. Like, she really should. It’s a shame. And all of our patients who deal with CHS, it’s almost like they’re ostracized when they bring it up. And a lot of people are very, very scared to, you know, after they’re part of the community of people who, you know, use and have benefited from cannabis. They’re very scared to come out as you know, suffering from cannabis hyperemesis syndrome. And it’s a shame and.

Alice Moon: (22:03)
Yeah, the backlash is real. Like every time I post about this, I receive negative messages and negative comments. People accuse me of working for the government. Now they say, this is a ploy to make cannabis illegal. And I’m like, look, opiates are still legal. Alcohol is still illegal. Do you really think the government is going to make this illegal? Because this is harming some people? They’re not gonna like move backwards in California. We’re not going to go backwards because some people got sick. It’s not, it’s not. So people are just looking for, you know, some type of excuse for this to not be real and they just don’t want to believe me. And so I have had a lot of backlash and people in the cannabis community and outside of the cannabis community and definitely emotionally taxing. And especially when the business insider article just came out recently, which I’m so grateful they did that feature, but it really just opened up, you know, comments, DMs, linkedin and just nonstop messages. And then people are tagging me on posts because they kind of want someone to go in there and defend the situation. And so now I’m like the Internet warrior for CHS, and I’m like, I can’t be that. I have now like accepted that look, I’ll come in and put one comment of a copy and paste of things and after that I can’t, I can’t do any more than that. People don’t want to accept it, then don’t accept it, and I just hope it never happens to you. But thankfully I have turned a lot of people around and talking about this has helped so many other people discovered that they have it. I get a message at least once a week. Yeah. You know, cause it’s like now people realize they’re not alone and this is what’s happening to them. Two people I spoke to had their gallbladders removed because they were misdiagnosed, organs removed. And how many other people has this happened to that we don’t know about it? This could be happening to so many people because doctors don’t know about this so they’re not diagnosing. And then also some patients aren’t telling their doctor that they’re using cannabis, in states where it’s not legal they might not feel comfortable doing it. So it’s a whirlwind. It’s crazy. And now I just feel like even more determined to be the voice for this because I am passionate about cannabis and I don’t want to leave the industry. I want to be able to use again, I want to use cannabis so bad. So I just, I want to be a voice to help figure this out basically.

Jessie Gill, RN: (24:40)
So do you have any tips? Like I would never, you know, not encourage a patient… I would never encourage a patient to avoid cannabis when they’re first starting out, because of CHS. Of course if they have a history of a CHS that’s different, but a new patient, it’s not something that most people need to be afraid of. But it is something that all cannabis users should be aware of. You know, just like the fact that THC can cause panic attacks. So you need to be aware of that same thing. You need to be aware that this is a very rare risk, but it’s possible. So that way when they do start encountering symptoms, they can be aware because like you said, Chs, it can be potentially deadly if it’s not addressed and taken care of. People can go into dehydration and they can go into organ failure, kidney failure, and you know, it can, it can kill. Um, what, what do you tell people? What are your tips for people who might.

Alice Moon: (25:38)
So yeah, with, um, you know, some people have seen my posts and been like, oh my gosh, now I’m scared that I’m going to get it. And I tell people, don’t be afraid. You do not need to be afraid that you’re going to get it, we should not live our lives in fear. Just be aware of the symptoms. Just like you said, like I don’t want anyone to just be like, I can’t use cannabis because this could happen. No, smoke a joint in my honor. Please. Like just, you know, just be aware. It’s like all of a sudden you’re burping a lot. Oh now you’re throwing up a lot. It could be this, take a break. You know, cause I think my case is so severe because I had it for so long and I didn’t know it. I think if people take a break soon enough, maybe they won’t get to that level. So just, just be mindful of your cannabis consumption and if you experience those symptoms then take a break. And also I want people to talk about this with other people because they might know someone who has it and that person didn’t know about it. And I’m finding that so often. And, you know, I’m just, I’m glad that there are people who are telling their friends about it. And so let’s talk about it. Be Real about it. Not deny that it’s real because we can keep saying it’s not real, but that’s not gonna change it. It’s real. And also stop spreading misinformation that it’s pesticides.

Jessie Gill, RN: (26:56)
Yes. Please stop spreading misinformation.

Alice Moon: (27:00)
Yeah. Yeah. And Yeah, just I want everyone to just be mindful of their consumption and know that I love weed. I love weed. I’m 100% for weed like, absolutely, cannabis is so great. Just let’s be mindful.

Jessie Gill, RN: (27:13)
Oh, that’s excellent, and how about to the patients who might have it and are showing symptoms but don’t want to believe that they have it.

Alice Moon: (27:24)
And that’s what I see all the time. And that’s how I was too. It’s like we don’t want to accept that it’s that it’s like, let’s, it’s gotta be something else. And you know, I was, I pushed for my doctors to do all these other tests and had medical bills out the roof. It was so expensive for me to get everything done. And people need to kind of be aware of that aspect as well. This could be a very expensive process. So why not just quit for a few months and see how your body does? You know it, it’s not, it doesn’t hurt to go see the doctor and get a checkup and get a physical. But putting your body through a whole lot of tests might not be necessary if you’re a heavy cannabis consumer. So if you think it’s not real, just give your body a little break and see if you get better. Cause it can be real and it sucks so much, but it is what it is. And so just got to prepare for it and accept it and know that also there is cannabis withdrawals. Even though we, a lot of people say there’s not. Um, a lot of times when people stop using, they get night terrors, panic attacks, um, trouble sleeping, eating, and that’s all part of the process and it’s an adjustment. You have to adjust your whole lifestyle with it.

Jessie Gill, RN: (28:40)
So hard. I’m sorry Alice. I wish I could fix it for you and take it away.

Alice Moon: (28:45)
I know. And you know, I feel like somebody who is as vocal of a human being as I am had to get this to just to help other people, you know like, cause there’s people who use it who’ve talked about it and they’re not believed but I am too loud. I’m like, no, you’re going to believe me and I’m going to keep talking about it. So I think it kind of, the universe made it to have happened to me for a reason. As much as it freaking sucks, it’s helping people that I have that I have this story.

Jessie Gill, RN: (29:13)
So I think that’s a great spot to wrap up unless there’s anything else you want to add.

Alice Moon: (29:19)
We touched base on all of it. I really, really appreciate you having me on here. I.

Jessie Gill, RN: (29:22)
Where can people connect with you.

Alice Moon: (29:28)
My Instagram is the Alice Moon and so is my Twitter and my website is Alicemoon.la.

Jessie Gill, RN: (29:37)
Perfect. Awesome. Well, thank you so much for sharing your story because it really, really is important. And you know, if, if there has to be, you know, somebody out there spreading information, you are a great person to do it because you present it very well. Thank you.

Alice Moon: (29:52)
Thank you so much. Have a good rest of your day.

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