← Return to Cavernous malformation and seizure. Input on my dosage?

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When it comes to seizures in the past it was only caused by a bleed but I never would have them afterwards. Age 21, my husband at the time was my fiancé and he stopped by to say hi at my apartment. I was in the middle of eating and my head started to twitch(that’s all I remember) he said I instantly flattened out and had a grandmal seizure. He waited until I come too and asked if I take seizures and I told him no. He took me to the er but I had no insurance at that time. So they gave me a number of a Dr to call. My 2nd malformation my daughter was in kindergarten at the time and my husband was just leaving for work and that morning I was feeling very hot and nauseous. I got up to make coffee and a slice of toast thinking maybe I just need to eat something. When I sat down to eat. I had difficulty chewing it. So I went to spit it out but couldn’t. I took my finger inside my mouth to get it out my mouth was tightening up. I walked to the bathroom thinking I was going to throw up. I laid down on the bathroom floor and blacked out. My daughter not knowing where I was when she woke up told me how I acting and didn’t know what to think. My husband before his teaching the students at his school would begin likes to text me but he noticed I didn’t as I always do. So he called and he knew I had a seizure because my talk was not making sense. So he hurried home and took me to the er. This 3rd time I had no warning signs. In fact I was excited the day before because we were going to Atlanta to shop/eat. That morning my husband thought it weird how I just sat there at the couch. He told me we need to get ready(Atlanta takes us a couple hours plus it’s busy). I got up went half back to the bathroom and turned around & stood there staring at him. He thought that was strange and repeated let’s get ready. I went straight back and shut the door. My daughter (15years old now) heard a noise. She went to open the door called for her Dad. My husband had hard time getting in because I collapsed as I shut the door behind me. This was the first time I couldn’t stand up. As far as the seizure in Jan before surgery. I remember going up stairs to talk to my daughter(she’s homeschooled) and when she started to talk it sounded like talking in a can. So I quickly walked back down stairs because it made feel weird as to why it sounded like that. My husband had just walked into the house and could tell something seemed off with me. He asked “are you okay.” I said “yes I just need a drink of water and I did just that and took my socks off. Sat down on the floor and he tried talking to me and I put my hand up and said please don’t speak the sound of your voice please don’t. Then I blacked out. And as you know already after surgery everything felt like I was spinning in my head, feeling hot(took my socks off) and the sound of the voice sounded like in a can. Those are what I remember. Everything else is told to me to what happened while in the seizure after I blacked out as well as afterwards until I’m able to know.

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Replies to "When it comes to seizures in the past it was only caused by a bleed but..."

@tkmoyer3 Hi!
Thank you so much for sharing your journey—it really helps me understand what you've been navigating.
I'm curious: have any of your doctors mentioned Epidiolex (FDA-approved CBD)? It's shown some really promising results for people with refractory epilepsy.
Here's a recent post from Kerry, whose son has refractory epilepsy and has been doing really well on Epidiolex: https://connect.mayoclinic.org/comment/1502120/
I take pure CBD (Epidiolex isn't available in my country yet), and it's helped with my seizures with minimal side effects.
Chris