← Return to Medical Cannabis or CBD as Treatment for Seizures

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@downsynsz

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.

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Replies to "My brother was born Down Syn is non-verbal, and was picture of health until 2014 (age..."

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?