Written by Doctors and Specialists Agree to Allow An Epilepsy Patient Cannabis During In-Patient EEG, Their Lawyers Took it Away But Her Mother Gave It Back:
Lisa Hunter Gisone of Bucktown, Pennsylvania was beyond livid when telling me about her daughter Tori who’s 25. Tori has fought Severe Refractory Epilepsy Since she was a toddler. Like most with this very debilitating type of Epilepsy, her life has been filled with nonstop doctor’s visits and so much more. From medications that don’t work to diets that fail, I know the same drill that Tori goes through daily. The loss of weight and appetite on one medication then a sudden gain on another. But Tori has dealt with something much more fierce than Severe Epilepsy. Recently she’s had to fight for her rights to medicate. After a doctor said yes to her use during a tedious inpatient study of brain waves known as an EEG, quickly the hospital attorneys gathered to come back with a denial. Telling this young lady that she could not fight off the seizures with Cannabis and had to surrender all medications, something is done on a regular basis in Epilepsy Monitoring Units (Known as EMUs). Although she has a legal recommendation from a physician to use Cannabinoid Medicine, and even though her doctor promised to turn the blind eye, quickly they gave in to legal counsel who disallowed her right to medicate. What happens then to a seizure patient who’s inpatient and has had their Rx medication taken away for a study like this? They seize until emergency medicine is injected into an IV. So the very drugs Tori does not want were forced upon her. This is not unusual at all and a huge reason why I just denied a doctor who wanted to do a 7-day study on me for absolutely no reason.
At first, Lisa was really happy. Her daughter was allowed to use a vape pen and have Cannabis in her system so the in-patient EEG monitoring wouldn’t cause seizures. Little did she know the nightmare was about to begin.
In her own words, I'll let Tori's Mom tell the story:
“Many of you know my daughter was hospitalized for a video EEG, a study of her brain for epileptic waves. My daughter has a severe case of Epilepsy that has not been successfully controlled with any kind of treatment. She takes 5 anti convulsant medications, she has had 2 VNS’s implanted (surgical implants of a device to help stop seizures), and she still has 70 plus seizures a month. She is only 96lbs. Specialized diets are very difficult because she loses weight rapidly.
She just got her medical marijuana card two weeks ago and was able to purchase medication from a dispensary. We use Sativa to stop her seizures in their tracks!! She has cluster seizures every night and 4 hits on the vape stop it.”
(The vape cartridge she had in the hospital that was disallowed after it’s use stopped her from seizing – once it was taken the seizures came in full force)
“The first day at the hospital the physicians allowed us to give her the Vape and they witnessed first hand the effects, in person and on the video EEG machine! After her fourth seizure, she took the hits, and immediately everything stopped. The neurologist was asking me questions about how we got our medical card and was showing a lot of interest and even shared that she would like to share this information with her patients.
“Then a nurse witnessed the Vape later in the evening and told her supervisor and they got the hospital lawyers involved and we were told we were no longer allowed to use it because it’s a fire hazard. I thought the entire day and try to come up with any kind of solution to be able to give my daughter her medication knowing what was ahead. At this point, they had turned off her VNS and removed one of her medications to advance seizure activity.
After her fifth seizure I tried using tincture in her belly button, her feet, her gums and under her tongue. No relief. The Nurse came in to give her pharmaceuticals to stop the seizures. I Allowed it.”
Her mom continues… “Seizures continued! I then took matters Into my own hands And planted the vape pen somewhere in the bathroom. Knowing that we were being recorded I relayed the message to my postictal daughter (meaning she was recovering from seizures and still in a post-seizure state). I went out Into the hallway and found a male nurse because I know male nurses are not allowed inside the bathroom with Tori. He escorted her to the bathroom and shut the door. She administered her own medical marijuana to herself in that bathroom. I could still see her brain spiking on the EEG machine as she was in there as I could hear her coughing from the Vape I began to see her brain waves rest! She took her full dose of Cannabis and came back out, climbed into bed, and slept peacefully for the rest of the night!”
“The next day when the doctors came in to release us, I confessed to them what I had done! I begged them to go back and review the activity of her brain after administering her vape as a rescue! I told them what I had seen on the screen as she was in the bathroom smoking! Sadly, it fell on deaf ears… her reply “ the hospital plans on prescribing epidiolex within a year. “ that was it.
And so we fight on….”
Now let’s talk a bit about Epidolex and what it truly is – something we’ve already had in dispensaries and in online sales – CBD. As Americans await this overrated and overpriced Rx product created by GW Pharmaceuticals, many are completely unaware it is only being approved for two types of genetic epilepsy that are rare in comparison to the vast other types. Many adults and kids with severe intractable and refractory epilepsy will not be able to obtain the CBD-only Rx drug that doesn’t work for about half that use it anyway. There are over 40 different types of seizures and countless different types of Epilepsy diagnoses. The words Severe Refractory or Intractable mean that the type of Epilepsy doesn’t respond to Rx medications – the same diagnosis that I have with a total of 27 failed medications over 18 years before Cannabis did the trick. Many patients and parents of children needing Cannabinoid Medicine have found that CBD only doesn’t work too well for many types of Epilepsy and needs a tad more of the plant if not all of it. A select few individuals will find relief from it this drug, but it will never be anywhere close to relief from the plant. For this reason, there’s no parade for the upcoming release of Epidolex other than the fact that once again our government will just say yes to pharmaceutical cannabis while just saying no to patients who truly need the plant. What happened to our rights? I once thought we citizens of a democracy where the people’s will is done and not the will of greed. There’s an obvious answer to why kids and people are suffering when we know the plant will make them comfortable like Tori is in the photo below? Our voices aren’t being heard. We need to speak bolder. We need to speak louder.
Back to our superstar Tori. She’s now out of the hospital and very happy to have the nightmare of doctors who do not know the Endocannabinoid System attempting to handle her very intense type of Epilepsy. I know how she feels. We know what we need and it’s not the pile of pills that are given to us and sicken us. It’s not the endless MRI and CT scans that expose to even more radiation. It’s definitely not the opinions of doctors that fail to learn about the Cannabis Plant. Nowadays you can have a conversation with just about anyone in the Cannabis Movement and find that they’ll be able to have an active conversation with you that a doctor could never keep up with. I’m typing this as a patient, during the day I’m the Dir. of Communications at The American Academy of Cannabinoid Medicine http://aacmsite.org/
I believe doctors need to gear up and get ready as the people and the plant are taking over. Daily I watch as eager doctors do so across the country. It’s up to us patients now – we need to educate those that have attempted to bypass learning about one of the most intense systems in our bodies – the ECS. Simply give your doctor the website above and let them know there is an Academy of medicine specifically for Cannabinoids – and they can learn. Continued Medical Education is required for a doctor to become certified and it’s available in just about every state and in conferences around the nation weekly. I know, I schedule many of them for the board of the Academy.
So it’s time to talk about the plant with our doctors and give them a website to refer to.
Let’s legitimize this plant, our medicine – our future.
Mike Robinson, Medicinal Cannabis Patient and Director of Communication, The American Academy of Cannabinoid Medicine
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