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Has Mayo done any studies on the effectiveness of this? There is some info on-line but?
Here is some information from Mayo Clinic about clinical trials of cannabidiol for epilepsy https://www.mayoclinic.org/medical-professionals/clinical-updates/neurosciences/clinical-trials-of-cannabidiol-for-epilepsy
This study is currently open for enrollment "A Randomized Controlled Trial of Cannabidiol (GWP42003-P, CBD) for Seizures in Tuberous Sclerosis Complex (GWPCARE6)" http://www.mayo.edu/research/clinical-trials/cls-20368632#overview
You'll find general information about the clinical use of medical marijuana from Mayo Clinic here: https://www.mayoclinic.org/healthy-lifestyle/consumer-health/in-depth/medical-marijuana/art-20137855?pg=2
Tree2fly, what type of seizures do you experience? What treatments have been effective for you (or not)?
Hi, im new here and saw this topic and had to share my own experience. Im 40 yrs old, been having seizures for 20 yrs now. Had a VNS implant in 2009, with continued seizures I had a right temperolobectomy in 2011 because of an abnormality. I havent had a gran mal since my brain surgery and have been taking the medical marijuana for a year now. I do 18 drops under my tongue 3x a day and use the vape when i have a seizure or having auras. It has not helped at all!!!! Im actually having more. Complex partials and absence seizures now. I had started out doing only 5 drops under my tongue but because that wasnt helping my med. marijuana doc has increased slowly to 18 drops. I just knew before it was approved in my state that this was going to be my "cure all" very disappointed it hasnt helped me at all. I also take Onfi and Briviact, been having seizures daily!!!
I would say don’t be too disappointed as there are many different strains of MMJ with different terpenes that give you different results. It’s a bit trial and error. My son has had good luck with vapes 2 parts CBD to 1 part THC. talk to a good bud tender about your best options…they are the most familiar with different strains and what works for which conditions. Best of luck.
Marijuana has several medicinal effects. Research hasn't been done on its use on seizures. It would give us a high when we get down from life because of our seizures.
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Hi @lsittll, you'll notice that I moved your message to this existing discussion about medical cannabis and seizures. I did this so you could join the discussion with @ckeys @crstyday40 @tree2fly and others.
The use of cannabis to treat epilepsy and other neurological conditions has been studied for a number of years. It has also been hotly debated.
Here's great, detailed information from the Epilepsy Foundation
– Medical Marijuana and Epilepsy https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/other-treatment-approaches/medical-marijuana-and-epilepsy
And from the Mayo Clinic
– Mayo Clinic Q and A: Treatment with medical cannabis https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-treatment-with-medical-cannabis/
@lsittll, do you find cannabis helpful?
I've never tried it so I don't know know.
My son (29 year old bedridden) has been using CBD for a year now with absolutely no improvement ( they did warn us it doesn’t help everyone) along with several different epilepsy medications along with his newest (#5) vns replacement but has only deteriorated even further. This has all been done by epileptologist at a different level 4 facility. We were told yesterday he is referring us to Mayo for second opinion due to my sons small size and all of this medication seems to be causing more issues with no relief and each time any of it is decreased we run into emergency situations even with CBD decrease but stay positive because we have seen some who were helped by CBD alone it just wasn’t the help we had hoped for with our son . By the way our son has had multiple epilepsies for 20 years and lost the use of his legs 10 years ago with no clear reason as to why and no prior problems other than myoclonic epilepsy causing falls but no injury or defect found. We have been unable to get a diagnosis other than epilepsy despite genetic testing for PME as well as hundreds of test over his lifespan. They say he is the sickest healthy person they’ve seen because all test are normal other than EEG. He is 3rd of our sons and the only one affected .
My son, age 42 as of this week, was a "normal" 3-year-old who got seizures for unknown reasons and which have never been controlled. Now he is in a wheelchair and can't talk, toilet, feed himself, etc.. He was on Medical Marijuana for about 3 years. It definitely decreased the seizures from 8-10 per month to about 3-4 per month, and he regained the ability to bear weight, which made transfer to and from his wheelchair much easier. The only side-effect was increased drowsiness, but he always dozes off a lot. MM was very expensive. Because he has been diagnosed with Lennox-Gestault Syndrome (based on symptoms, not EEG), our neurologist ordered Epidiolex, which is covered by insurance. It helps, but not as much as Med. Mar. did. He also takes Dilantin and Celontin.
Best wishes, one and all.
My brother was born Down Syn is non-verbal, and was picture of health until 2014 (age 54) when grand mal seizures (convulsion lasts ~20 seconds) started. In 2015 he experienced a fall in the home and suffered a sub-dural hematoma in the brain (mid-shift) that required surgery (craniotomy). Neurologist started him on Keppra (500mg/day), now at 1500mg/day, and over a year ago 100mg zonisamide/day was added. Late 2019 Epidiolex (FDA approved cannabidiol -Greenich Labs) was added. As care-giver still observe myoclonic jerks (eye stares, arms flailing/jerks, pre-cursors to gramd mal seizures), and what we describe as "quick-bursts" (start of grand mal, but convulsion stage lasts only 1-2 seconds), and he then becomes calm, relaxed as though it never happened. Neurologist after 96hrs monitor (connected to probes) at hospital and witnessing grand mal seizures could not isolate the brain area causing seizure, so no targeted AED's defined. The myoclonic jerks continue at seemlngly random times. Just before meal time, around periods of toileting, awakened from deep sleep. We're not sure if toileting (potty or stool) might be factor, or if diagnosis might be something like "autonomic dysreflexia". Just curious if anyone has had a favorable outcome using CBD oil products.
Hi @downsynsz, welcome to Mayo Clinic Connect. You'll notice that I moved your message to this existing discussion about medical cannabis, CBD and seizures. I did this so you could join the discussion with @lsittll @possumm @pamelastewart5 @ckeys @crstyday40 @tree2fly and others. Simply click VIEW & REPLY to scroll through past messages.
I think @jakedduck1 and @mxyzptlk32 might also have some thoughts to add to this discussion.
@downsynsz, have you tried CBD oil with your brother yet?
Hi Collen, thanks for linking the prior exchanges with my post. Yes, we've used the Epidiolex CBD oil (FDA approved in 2018) since January '20. Started with 1ML 2X/day, and based on his body weight (143lbs), doctor recommended we gradually increase up to 3ML, 2X/day. The doctor's thoughts were to reduce/remove the zonisamide med altogether by reducing the dosage down as we increased the oil. When we removed the 50mg of the 100mg dosage of zonisamide, ~4-days later he experienced two grand mal seizures in the afternoon of the same day (we returned back to 100mg dosage). We found that at 3ML-2X/day dosage he experienced diarrhea and drooling episodes, recognized side-effects, so we adjusted to 2ML in A.M. and 3ML in P.M., and have been at that dosage since early April '20. Maybe my expectations were that the oil would have a more dramatic response like arresting the myoclonic jerks/quick-bursts and possibly eliminate/control grand mal events. In addition, possibly allow removal of one, if not both AED's.
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