A Patient’s Story Of The Search For The Right Cannabis Combo for Stopping Seizures:
Mary has been a big smile on a cell phone screen for quite some time. Battling Epilepsy she still continues to smile and send positive messages across the net. She's been a friend on social media for several years that came to me over a year ago in search of the right CBD and boy it's been a search! From brand names to now being able to create her own full spectrum mix of Cannabinoids, Mary has learned how to treat herself and diminish the use of Rx medications that simply didn't work for her. Here's her tale of what life has brought her and how she's handled it:
“At age 5 I was a typical kid just odd because I was born on my Grandma Ruth’s birthday. When I was 6 I had my first awake seizure and that answered the question of why I would occasionally let out a scream in my bedroom but when my dad, (a night owl), came to my room I would be sleeping again. I had nocturnal seizures to start.
I went to doctor after doctor and took Phenobarb, Mysoline, Tegratol, Depakote, Dilantin, Lamictal, Felbamate, Gabapentin, and more as they came out. One was toxic in my blood. Another made me so tired they gave me uppers to go with the medication just so I could function in grade school. They mixed these medications by 2s and at times 3s. Double or triple therapy and each time it mixed up my mind and felt so scary. I was 6,7,8, and it continued into my teens. The doctors calling me idiopathic and giving me yet another blood test and scrambling my brain and body to attempt to stop my seizures. I made it through high school with seizures happening in classes at times. I called them interruptions in my mind and never used them for an excuse. I applied and was accepted at a university because of my high grade point average.
At 35 I found an Epileptoligist that did many MRI’s and EEG’s she told me to get a genetic test because of a skin discoloration and the calcification on the scans.They were 2 markers for a genetic mutation that can cause seizures. After so many years wondering why. Looking at my parents and 2 brothers being the only one with this health issue. Test results were that I have a mutation called TSC 2 Tuberous sclerosis Complex 2. My case was just so mild the past doctors had never seen it manifested like me. (Below is an MRI of what this diagnosis looks like in the brain)
Wow, this already is such a story of overcoming. I asked mary about surgery that she's had in the past that still did not stop the seizures and she told me all about it. It's not at all uncommon for someone with Epilepsy to have brain surgery and still continue seizing and needing medication. Surprisingly, only about 60% of surgeries end in success with no further seizures. "I had a right temporal lobe resection and hippocampus removal March 24 2014 I was 36 years old and 12 units from a M.A. at University of the Pacific. After the surgery I have not had any day seizures. Yet I can’t seem to go 5 months without a nocturnal one. The doctor prescribed Onfi, it did not help because I still had the break through seizure. I stopped that medication. I was scared because there was nothing to do but take more pills and I just wanted normalcy. Something I wanted my entire life."
Mary went on to share even more of her story: "I have been experimenting with CBD for a few years now. My little brother gave me something called Jayden’s juice. High CBD cannibis drops. I started with a few. I got Charlotte’s Web CBD oil to try afterwards because it had a similar make up as the Jayden’s juice and seemed to be a good price. When the next seizure came instead of 10 minutes it only lasted 3 minutes. I even used the drops when I felt unusual or scared like maybe one might come on and letting the drops absorb under my tongue instantly made me feel normal. I listened in on Mike Robinson’s canna-talks online on Face Book, and I heard about products formulated specifically for seizures. Nothing comes as 100% but the high CBD I had in the past was at least making the break throughs tolerable and smaller so since the stuff that had Epilepsy in mind during formulation I thought it should be even better and it. I know that just like with medication everyone is different so I would have to find my best mix.
"I just turned 40 and I have been nearly seizure free for 8 months now. I had a big seizure in public for the first time in years a few days ago, Cannabis is excellent medicine but it’s not a cure. We all still have epilepsy but we have medicine that works now. That was the longest I have gone nearly seizure free since my surgery in 2014 and I have managed a reduction in my Dilantin by almost half. It's been nearly 8 months."
"Mike, I am so thankful that I met you and found out about Cannabis. Spreading awareness that there is another way to go is so important. I mean something besides the medications that have the effects of scaring you or putting you into a seizure like one did me. They all scramble your mind and nature is the way to go. You just have to try and keep trying and remember Love Wins."
Mary, I have these questions 1.) How did you first learn about cannabis as medicine? 2.) What advice do you want to give to those who have epilepsy not using cannabis or CBD? 3) Did labels on products confuse you? What about all these strains?
1.) My brothers first heard of cannabis as medicine. They saw me doing all I could to stop the seizures and be “me”. They knew meds and seizures and even just the break throughs were enough to mess me up for months. I would stop eating and stop sleeping and get H pylori and ulcers and be very very sick for a long time. I needed something. Not a pill and I already had part of my brain removed.
2.) My advice to people that have seizures or kids with seizures is to try diets and try cannabis. The doctors are only trained in medications and they are the easy band-aid. They may help but there is more available to try. The Ketogenic diet does help if not work to stop seizures for some but most doctors will not tell you because the assume most patients will not do it the correct way and you have to be very strict. There are herbs and supplements that also help the brain. I had to study and the many doctors I have had have yet to mention them. I know that I would do anything to stop seizures so these are not off the table for me. Just keep trying and find what works for your brain.
3.) Labels did confuse me but I went for high CBD product with very low THC because in high school I smoked weed and got paranoid because of the THC. When everyone else was laughing, I was just wishing the high would be over. I hated the high feeling and it scared me a lot. I always listened to my brothers and I listened to Mike Robinson on amounts of what could be watered down. He would mention these topics on Facebook. These talks were very valuable to me. I learned a lot about cannabis from Mikes Facebook Chats.
(A very high in CBD Cannabis plant growing - so beautiful!)
From Mary herself… her story is amazing. Cannabis wins!
She's continued to fight the battle against Epilepsy by learning how to create her own medicine. Becoming self sustaining was of the utmost importance to Mary and due to that she's managed to continue to have very awesome results. "I've got my life back, thank you so much" she told me in a recent communication. We've met and created infusions together and now she does so on her own. It's always a huge victory in my heart to know that a patient that once relied on a pile of pills now finds relief in the plant. Every last one of us with knowledge on how to heal, in my hopes and dreams, will be teaching others to do the same.
Mike Robinson, Medicinal Cannabis Patient, Research Analyst, and Former Director of Communications, The American Academy of Cannabinoid Medicine