The fear of (SUDEP) or Sudden Unexplained Death In Epilepsy is one those of us with Epilepsy must face daily:
Writing about Epilepsy has to be one of my favorite topics because it effects me every day. Even at this moment I’m thinking about what time it is, how much sleep I much get as I’ve worked a long day and will travel tomorrow for the second time this week on Mass Transit. Life is on the edge even with Cannabis so eloquently doing it’s job controlling seizures. Onset of Epilepsy is often sudden and sometimes with no explanation. Although it’s theorized and even proven in some cases to be genetic and in others caused by trauma to the brain before or after birth. Either way – seizures are life threatening and Jade shares this common thread. In our world that makes her like a sister to me, like an aunt to Genevieve. Life with Epilepsy can be beyond a lonely struggle even with people around you, cannabis can make such a difference for so many and give them freedom. It gave Jade her life back. I asked her how this all started…
“At 13 years old, I left my biology class to go use the restroom and woke up two hours away in a major hospital. They said I had a grand mal seizure. The doctor started speaking with me and asked me if there any other times I’ve ever felt funny and I mentioned several where objects would appear bigger or smaller than they were or sounds would be louder or much quieter. I realized they were and something was wrong.” actually were, sometimes things would smell different And I would get a fruity or metallic taste in my mouth.” This is referred to an an aura. Some people with epilepsy like both Jade and I have a warning sign that is often a seizure already occurring on a smaller level. Whether it’s a smell a taste or seeing a color, that aura can save your life if you act upon it and find a soft place to lay down before something happens where there’s nothing sharp you’re going to hit. Can you imagine life like that? We live it. Imagine having that happen and not knowing why… ever? Kids like our Genevieve live that life.
Jade went on: “It was at that point I was diagnosed with Temporal Lobe Epilepsy with AIWS ( Alice in wonderland syndrome). “Alice in Wonderland Syndrome (AiWS), also known as Todd’s syndrome or dysmetropsia, is a disorienting neuropsychological condition that affects perception. People may experience distortions in visual perception such as micropsia (objects appearing small), macropsia (objects appearing large), pelopsia (objects appearing to be closer than they are), or teleopsia (objects appearing to be further away than they are). Size distortion may occur in other sensory modalities as well.
“As you can imagine I was immediately put on medicine and have been on every medicine in the book treat and prevent seizures, none of them completely worked and most had such horrific side effects it wasn’t worth it. The seizures stopped for awhile when I was in high school but we weren’t sure why at that point, but now I know it was because I was smoking pot.” And this isn’t uncommon, self medication occurs rather frequently with teens that have ADD, ADHD, Epilepsy, Autism, and so much more. Sure, society can call it ‘getting high’ and make kids think they’re smoking something that sounds like kitchenware (pot) , but the bottom line of it is expert and expert have spoken up in these fields about medicinal cannabis and self medication. It’s something that occurs due to the fact our bodies have an Endocannabinoid System that reacts to incoming cannabinoids such as THC and CBD. When an individual with these type of diagnosis intake cannabis it eases the symptoms per literally 100’s if not 1000’s of studies.
I asked Jade how she ended up intubated in ICU. She shares a photo that’s horrifying to me. I used it because people need to know that people they see in life with Epilepsy may be having a difficult time and not sharing that with you. We know our ‘disorder’ is taboo and we already feel like a burden. Many of us have decided that this word Epilepsy will never define who we are and live on. We do things that break the stigma. In order to get to the desk at work in which I’m typing from it took an Uber, a Train, a Bus, and another Uber. 10 hours later I’m at work out of town for 4 days. Sure, I’ve seized in public and so has Jade. It’s part of our lives and we must live through it. She went on to tell me more, “I eventually grew out of my rambunctious phase so to speak, and the Seizures came back with a vengeance. I didn’t expect that, medications were failing me.” It’s estimated that 30% of patients with Epilepsy like Jade and I fail to respond to medications. With kids like Genevieve they call this intractable epilepsy – with us adults it’s severe refractory. With this? Cannabis is our option to survive. Those I know that have what’s called ‘status events’ or go into ‘status epilepticus’ a state of back to back grand mal seizures that are life threatening and cause the death of approx. 50,000 patients per year. Jade sadly went into Status. With her life on the line she was ordered to some of the top doctors in the nation.
“I went to the mayo clinic after that SUDEP scare and was told there’s no cure for my type of epilepsy and that 1 out of every 100 seizures that I have could be fatal, but thankfully was given advice that medical cannabis could offer some me relief. I took the advice and haven’t been in that situation again. I don’t wan’t to die young. I shouldn’t have to think about that, but with that going on I think most people do. Then the laws, I thought it would be easy but it’s not. The big problem is where I live is that medical cannabis isn’t yet available so I must travel far to get medicine I need to function on a daily basis.” And she’s not alone. Many people like her across America are by far not free from this type of scrutiny due to their zip code. We feel fortunate in California to have access, although medicinal programs are hindered bad by the recreational laws, at least we can get the cannabis we need. ” I don’t want to worry about dropping to the floor and causing who knows what type of damage to myself or surroundings. Cannabis has been the only thing that has been substantially effective in treating the seizures.”
Thank you Jade! More patients are coming forward by the day. Every one that does makes a huge difference in changing the views about the plant. People are opening their eyes. “Maybe it isn’t a bad thing like the government said was my first thought after hearing about Jade.” Thomas Baring of Maine told me yesterday in a conversation today about a story I’m working on about his cousin. People’s minds are definitely open nowadays and we need to keep letting them know about our success!
Mike Robinson, Cannabis Patient, Activist, Speaker ~ Former Dir. of Communications – American Academy of Cannabinoid Medicine