Vaping Cannabis for Epilepsy in Australia: Lindsay Carter’s Story
When you mention the word vape, most people immediately think you’re talking about middle-aged dudes that are the ones to blame for turning bars and local nightlife precincts into medieval dragon caves, thanks to their nifty new nicotine vaporizers.
For some, vapes are indeed devices used to quit smoking or satisfy one’s sweet tooth, but there are also a growing number of patients out there that are turning to vaporizers for other reasons, specifically those patients that have found cannabis to be an effective medicine for their afflictions.
Herbal vaporizers are used to vape natural remedies like Damiana, Lavender, and Jasmine, which all offer some form of sedative relaxation when consumed or ingested.
Researchers from Israel’s Tel Aviv University recently published findings in the Journal of Pain & Palliative Care that indicated that metered-dose cannabis inhalers that contain the plant’s key therapeutic compounds were effective in helping patients with chronic neuropathic pain.
While the legal medical cannabis movement in Australia is finally gaining some traction, there is still little evidence being done locally into the effectiveness of vaping cannabis, regardless of the fact that it’s proven to be a viable remedy to a plethora of neurological and physiological conditions.
Medicinal cannabis is an issue that many Australians have something to say about. “It’s a topic that can be lumped into any argument and it’s going to cause a response, or people are going to have an opinion about it,” says MEDIFARM Director and Sunshine Coast local Adam Benjamin.
Benjamin’s company, MEDIFARM, is Australia’s first licensed producer of medicinal cannabis, with the first crop of locally grown, organic cannabis to hit the market before Christmas this year.
Having access to a legal, organic, and ethically sourced medical cannabis crop is of huge importance to another South East Queensland local, Lindsay Carter.
Lindsay suffers from intractable epilepsy, a symptom of the brain tumor he developed in his early teens, and was notably the first Aussie that was granted the right to legally use botanical schedule 9 cannabis to deal with his afflictions.
Through my work at Greendorphin Media, I’ve had the opportunity to sit down with Lindsay and his mum Lanai on a number of occasions to discuss Lindsay’s illness and the process involved with obtaining medicine under Australia’s draconian system.
Although he’s only just turned 19, Lindsay Carter has spent more time in hospitals, ambulances, and specialist clinics than most people will see in this life and the next one. Being a young Aussie bloke myself, meeting Lindsay was a pretty eye-opening experience that made me hungry to get this story out there.
While cannabis may appear to be a pretty harmless substance to most these days, there is still a huge stigma among the Australian people who supposedly matter; the politicians and parliamentary leaders that uphold and pass the laws which govern us.
A typical Australian polly starts their day with some infighting, a few racially-fueled Twitter rants before lunch, and a change of party leader before the taxpayer-funded entree has even hit the table.
Matters that are of actual importance rarely take centre stage in parliament house, and when they do you can be sure that any actionable response will occur slower than a bloke trying to run a marathon with his ankles pinned to his ears.
Australia’s medical cannabis patients have put the government on notice for their lackluster response to claims to supply us with a proper, nationwide medical cannabis supply scheme.
Current figures suggest that anywhere between 300 and 500 thousand Aussies are currently using cannabis to treat their afflictions. Under the current system, only a handful of these patients are using cannabis legally, meaning that hundreds of thousands of Australians are having to seek less than legal means to obtain their medicine.
Lindsay Carter’s mum Lanai fought tirelessly to obtain her son the medicine he needed, but before this, she had to uproot her family’s whole life by leaving for America with Lindsay for a number of lengthy and expensive periods to seek treatment and gain advice.
During Lindsay and Lanai’s time in the USA, it was recommended that Lindsay start medical cannabis treatment in the form of both vaporized cannabis and cannabis oil. It was during this period that Lindsay’s tumor reduced in size and his seizures reduced substantially. One hospital had measured the tumor at 3.2 centimeters in 2013 and another Hospital had measured the tumor at 1.6cm with a substantial amount of swelling around the tumor. After just 7 weeks on the cannabis oil, the tumor had reduced in size to 0.8cm and the swelling had reduced substantially
When Lindsay would return to Australia, without a consistent supply of cannabis oil the tumor would start to grow back. In fact, it increased to 1.8cm in size in 2015, thankfully the tumor is now back down to just above a centimeter in size. Years of lobbying by his mother, an advocate for medical cannabis, helped Lindsay to become Australia’s first botanical cannabis patient at the ripe age of 16.
In this piece, I chat with Lindsay and mum Lanai about how vaping cannabis has helped Lindsay to improve his quality of life.
If you’re an Aussie medical cannabis patient that is looking to see what vaping is all about, this one is for you!
Matt: I know that you first started using cannabis when you were over in America the first time in 2014, but what was it like the first time that you ever tried to vaporize some cannabis?
Lindsay Carter: I remember that I had a crazy headache for a few days and it wouldn’t go away even with the medicine I had been taking. We’d gotten the say-so that day from the doctor to use some cannabis and had to go to the dispensary to pick up something to use.
Lanai Carter: At the time I remember he was in terrible pain, it was horrible to see him suffering from headaches. I was not used to driving on the roads in the USA and it was late, dark and rainy. Eventually, after getting lost a few times we found the dispensary and I was able to get Lindsay some medicine. The first thing that he used was a preloaded cartridge pen.
Lindsay: Yeah, the first thing I tried was a vape pen, kind of like a throwaway one with the product already loaded inside of it. It gave me pretty good relief from the pain which was awesome. It was actually surprising, I remember being in a really bad way and it was a pretty quick transition after I used the vape pen. If I have a headache I feel like its a lot easier for my body to let its guard down and go into a seizure, so it was good to have that for dealing with the headaches.
Lanai: After the disposable vape pen he started using a small vape pen with C02 extracted oil for vaping but we had issues with the pen breaking a few times. He then started using a Volcano Classic for vaping with dried flower/bud which was much better.
Matt: Did you find the dried herb that you’re using now to be as effective as some of the other oils and such that you’d been experimenting with in the States?
Lindsay: I’m actually a lot better with the dried stuff now. I was using a cheaper vaporizer over there at first and found that every time I’d use it, I’d get this grassy flavour.
Lanai: He would feel sick even at the thought of vaping because of the grassy taste, but then I purchased a Volcano device for him and found that after that he was fine and had no concerns about the taste of the vapor.
Matt: What type of products are you using to vaporize your cannabis at the moment mate?
Lindsay: I’ve got two main vapes (Vaporizers) that I use with my meds. The portable vape, the Storz & Bickel Mighty Medic, is definitely my favourite. It’s super easy to load up and doesn’t use too much herb. I use this one probably 90% of the time and it’s pretty heavy-duty so it doesn’t break down like the pens used to.
Matt: Do you find it pretty easy to medicate using your Mighty?
Lindsay: It works great most of the time and is easy to use, there are only two problems really that I find can sometimes happen. Using it at higher temperatures, the vapor can get a bit hot on my throat. Also, if I’m having a seizure or am suffering pretty badly with nausea, vomiting, or pain and need medicine really quickly it can be a bit of a hassle to load it up, wait for it to heat up, and then medicate.
Lanai: I really feel for him when he is suffering badly and there is so much time lost waiting for the vaporizer to heat up. In the times that he is really needing to get the cannabis into his system right away, vaping is definitely the best delivery method to ease his pain and also to helps stop his focal seizures after they start. It’s also so efficient to help ease nausea and stimulate his appetite.
Matt: What about the other vaporizer that you’re dealing with?
Lindsay: The other vape is my benchtop unit, the Volcano Medic Vaporizer. This one is definitely a lot smoother than the Mighty Medic, breathing in from the inflatable bag means there is no heat on the throat. You can also get a lot more vapor into your body in a short amount of time. But again, there is still a fair bit of wait time to load the thing up and wait for it to heat up, plus it uses a lot more dried cannabis than the Mighty. The Volcano is what I use when I go into post-seizure vomiting. When a seizure is so bad it causes me to start vomiting and the only thing that stops the vomiting when this happens is the vaping.
Lanai: It definitely is a life saver. You’ll see the change in seconds. A few weeks ago Lindsay had been having really bad focal seizures, and the whole time I was loading up the Volcano he was really quite frustrated because he just wanted to talk and understand what I was saying to him. As soon as he’d taken a couple of draws from the bag, his face got all of its colour back and the frustration just wore away and he was able to get his speech back. There is nothing more frustrating for him that when his epilepsy inhibits him from communicating or even understanding others. Vaping can bring this back for him if he is using the right strains. Some strains have worked for this and some haven’t, it’s amazing to see the difference between strains. One strain may be excellent for certain symptoms, while another strain is great for something else. It’s a fascinating medicine.
Matt: Are you mostly getting Indicas or Sativas sent over at the moment mate?
Lindsay: I had some Afghani first and then some White Widow (popular hybrid cannabis strain), The White Widow had some Sativa in it though which was good because it’s a bit more energising, the Indica strains can be perfect for rest at night time or if you want to just sleep.
Lanai: With the Sativas he’ll definitely get a lot more chatty. I think that having something like that to use throughout the day means that he has more energy and ultimately can get a lot more done. He got some Afghani (potent Indica strain) in his first shipment from Canada, which was fantastic for stimulating his appetite and helping him get to sleep at night, so it’s always a lot better if he can have two or three strains to work with at any given time to manage different symptoms at different times of the day.
Matt: So when do you find that you actually need to use the vaporizer? Is it just as a preventative or do you use it when you feel the seizure coming on?
Lindsay: If I start to feel the precursors of a seizure I’ll definitely use it, but that rarely ever happens because usually I rarely get any warning or aura, more often than not it’ll just start and then I’ll use it as soon as I’m able to after the seizure.
Lanai: Ideally it’d be better if he could use it as frequently as he needs to, to manage his symptoms, but that’s not the case because there have been times where he has run out because the Volcano chamber does use a lot of medicine. On a bad day of seizures, nausea, and vomiting he may need to use the vaporizer a number of times which can churn through the material. If it’s a focal seizure we can usually combat it quite quickly with him having just one dose, but if he’s experiencing a tonic-clonic seizure we really can’t administer anything from either vaporizer until he’s stopped seizing and if he starts vomiting he may need more doses of volcano vaporized to get the vomiting under control. Then he may need it also for focal seizures, headaches and also for appetite. So on a bad day, it can take a higher amount of dosing but on good days much less.
Matt: Lanai, you’ve spoken a lot about your limited access to proper medicine for Lindsay, roughly how much is Lindsay being administered on any given day?
Lanai: At the moment he has to ration it to about a gram a day because supply is tricky and the cost can be quite high, Usually for him the ideal dose would be between one and two grams a day of bud depending on how much his illness was affecting him on the day, on the worst days it would be closer to 3 grams per day of bud. The three biggest things that the cannabis helps with on a day to day basis is his vomiting, his lack of appetite and focal seizures. Lack of appetite is usually a daily challenge, so having enough for a vape in the morning and at night is usually a bare minimum.
Matt: Is the vomiting from other epilepsy meds? Or what’s causing that?
Lindsay: If I’ve been having seizures, they can send me on a long train of vomiting, and then the ambulance would come and there’d be no way that they could stop the vomiting until I use my vape.
Lanai: There have been some occasions that the doctors in the hospital have sent him home so that he can use his vape because when he starts cyclical vomiting after a seizure there is nothing that can usually stop it. He has also been able to use the vaporizer in the hospital when he is admitted (in his own room).
When he has the cyclical vomiting start after seizures they would give him either Maxolon or Ondansetron which are both anti-nausea drugs but they don’t successfully stop the vomiting. The biggest problem with the vomiting is that it can lead to more seizures if he brings up his epilepsy medicines and can also lead to dehydration ultimately which always puts him more at risk of seizures, it becomes like a vicious cycle, so as soon as the cyclical vomiting starts he tries to vape some cannabis as soon as possible because it just shuts down the vomiting quite quickly if he gets the right dose.
At times even an intense focal seizure can cause some nausea or vomiting too.
Matt: Definitely a rough cycle you poor bugger. So ideally you’d be vaping a fair bit more than you are at the moment if you had the access, but how do you currently use cannabis to help with the seizures? Can you walk me through the whole process?
Lindsay: As I’m getting a headache or something I’ll get my meds and vaporizer and grind some up and put it in the chamber. I usually heat it up to 180°C and then start to inhale.
Matt: And how long does it usually take once you’ve had that first hit of vapor to feel the effect?
Lindsay: It’s basically like an instant reduction of pain. If there’s pain or nausea in my stomach it just becomes bearable, and then eventually after a minute or two, I’ll barely notice any pain.
Matt: And how much vapor do you have to inhale to get the desired sedative effect?
Lanai: It all depends really. If he’s been vomiting and needs a lot to stem nausea, then I’ll load up the Volcano vape for him and sometimes it will take one bag, sometime it will take two, at the most 3, bags.
Lindsay: With the Mighty, I usually just vape until nothing more will come out and then I empty it out and refill if I need another dose. I never really have to have a second chamber when using the Mighty because I don’t usually use that for the post-seizure vomiting but I do use it for appetite and pain and focal seizures sometimes, but I definitely find that the Volcano has more of a sedative, relaxing effect, it just goes through too much bud to fill the chamber.
Lanai: A ‘vape only’ approach isn’t what’s needed or recommended for Lindsay, he was recommended both ingested and inhaled cannabis to manage his condition. When we came back from America and had found that his tumor had shrunk down to less than a centimetre we were ecstatic.
Then when it grew a little it was concerning and its always been a challenge when he hasn’t had consistent access to the high potency oils he needs. Using a combined approach where he would vape throughout the day and use the 5:1 THC:CBD oil or a higher THC Oil in the morning and at night, and he was almost seizure-free and his tumor was stable. One of the recent last big seizures he had we had the paramedics here twice as I said, and were this close to taking him to hospital but we ended up getting the vomiting to stop after he’d vaped.
The next morning he woke up fine and the health workers I spoke to were shocked! The nurse said usually when dealing with the intensity of seizures and vomiting he had the day before it takes that much of a toll on the body it’ll knock you around for a few days, but I think the vaping helps him to recover a lot quicker.
I remember him saying he wanted to die that day, though, after the vomiting wouldn’t stop. It was a rough day but thanks to the medicine he was able to get through it.
Matt: I can’t even imagine what it’s like to be trapped in your body not being able to move. It’s crazy that the oil helped to smooth the process out so much, what are the limitations in obtaining a similar product at the moment in Australia?
Lanai: Unfortunately we still have not been able to get an oil made to the same specifications that were recommended in the USA (potency and ratio of cannabinoids). It’s moving along slowly in Australia, we’ve been told that there’ll be a local product here, but the waiting game is the worst part about the whole thing and we have significant concerns that it will continue to be out of reach financially for us and most other patients but its most important that he gets a product that’s not only affordable but is the right quality and potency. Of course, it would be good for patients to have access to a local product, though, without the need for importing but other countries like Canada have excellent quality products too.
Lindsay: It definitely makes the day easier having the oil. There’s a fair bit of anxiety that comes from seizures because you never really know when they’re going to hit, so having the vaporizer and the oil together mean that I don’t have to worry about having a seizure as much, and even if I do it’s a lot more manageable. Having something that I can get in Australia that we can perhaps trial and see if it works is going to be an awesome next step.
Lindsay’s vaporizers, the VaporMed Mighty Medic and Volcano Medic Vaporizer are German-engineered and manufactured, and are the only vaporizer brand to feature a registered medical patent. They are identical in design to the models sold in Australia, however, the manufacturing process of the VaporMed line is observed by a third-party licensing body.
VapeFuse Australia doesn’t condone the use of illegal substances in any way and advises you to only use this device to consume cannabis if you’ve been given explicit legal permission from the government of the state or territory in which you reside.