Calvernous malformation and seizure

Hi @tkmoyer3 !
Welcome to our group at Mayo Clinic Connect! I'm glad you found us, and I hope you'll find the support you're looking for here.
I'm so sorry for everything you've been through over all these years – I really admire your resilience and strength through such a difficult journey!
I'm really glad your husband advocated for you by calling the surgeon's office instead of sending you back to the ER after that post-hospital seizure. Have you had any other seizures since this last Keppra dosage increase?
I'm tagging @emaputric who has focal cortical dysplasia, a congenital brain malformation, and might be able to offer some insight based on her experience.
Sending strength your way and wishing you a good appointment with that new neurologist! 🙏🙌
Chris

@santosha
Thank you ☺️ No I haven’t had another seizure. It takes me half the first part of my day in feeling better since yesterday for the first time. My balance is still unsteady, speech is improving but slow & talking to anyone is too much on me. My head and eyes gets a lot of pressure. Right along with it feeling like everything is spinning. What concerns my husband is that when I came home from surgery I was fine but after that seizure I’m not. He’s concerned to what happened. For me in the past after a seizure I would be very sore and tired. But this time is different because the seizure that happened in Nov 2025 didn’t affect me like the past. In fact my brother didn’t know what to think about that as to why I didn’t have the usual symptoms. But I didn’t but after this surgery then seizure I do have those symptoms as would be expected but it is concerning for me because of my remembrance at the beginning of going into it and then blacking out. So that has been a bit different. Whereas in the past I would simply just blackout.

@tkmoyer3
My pleasure! I'm so glad to hear you haven't had another seizure 🙏.
These symptoms you're experiencing might be related to the high dosage of Keppra you're taking. You mentioned you're seeing a new neurologist next week, right? Here's what I'd suggest: keep a daily diary this week, noting how you're feeling throughout each day, and bring that to share with the neurologist. It can really help the doctor see patterns and understand what you're going through.
About the changes in your seizure pattern since November, I'm wondering whether you experienced an aura before that tonic-clonic seizure. Seizures can definitely change over time and also due to medications and medical procedures. In my own experience, I used to have longer, clearer auras before my focal impaired awareness seizures (formerly called complex partial seizures), but now my auras are much shorter and lead almost immediately into a focal impaired awareness seizure.
Do you believe you had an aura before your tonic-clonic seizure in November 2025? Can you remember what you felt before blacking out? And did you notice similar warning signs before the seizure in January this year?
Keeping my fingers crossed for you—please keep me updated!
Chris

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.

@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

@santosha
☺️ Thank you for your advise, support and concern. It’s so wonderful to get advise on this new journey for me. When I see my neurologist next week. I’ll make a mention about that medication and see what he says. This will be my first time seeing him but my neurosurgeon sent everything over for him to look over my records and I’ll share what’s been going on with me especially since that seizure had happened after surgery. I’ve found a clinic in New Mexico that has been on the research for cavernous malformations and the history about it. They got in touch with me and was glad to the hospital that I’m being seen at in the state of Georgia. It’s so weird how not a single person in my family history has ever heard about this and yet out of all 4 of us siblings only my brother who is a year younger than I and myself is the only ones who had something happen to just find this out.

@tkmoyer3
I'm so glad my posts have been helpful to you! I hope other members will chime in soon with their experiences too.
That's wonderful that the New Mexico clinic specializing in cavernous malformations gave you such a strong referral to the hospital where you're being treated. It sounds like you're in good hands!
Wishing you a helpful appointment next week—please keep me posted on how it goes!
Chris

Hi @tkmoyer3
I recently came across a discussion about vascular malformations in the Stroke & Cerebrovascular Diseases Support Group and thought it might be interesting for you to follow this group as well.
Stroke & Cerebrovascular Diseases Support Group:
https://connect.mayoclinic.org/group/cerebrovascular-diseases/
Arteriovenous Malformation (AVM):
https://connect.mayoclinic.org/discussion/arteriovenous-malformation-avm-survivors-and-side-effects/
You could start a discussion about cavernous malformations there, too. Just an idea!
Chris

@santosha
Shabbat Shalom!
Unfortunately for my entire life I'll never be off medication for seizures. It's normal after surgery to have that happen especially since I kept on having seizures before hand due to the edema (which for me to easily understand that term is like having a bruise on the brain) etc. A lot of information. Anyway he wants us to hold off on the mri until the 2nd week of March. Which is a protocol after surgery. To make sure everything is okay and in hopes that another (since I had seizure afterwards) didn't form another malformation since this is a vascular issue. My neurologist wanted me to have an MRI this coming week. As far as seizures goes it turns out I’ve been having them & never really realized. He called it a certain medical term. In other wards I don’t actually go into it but certain things happens. Which makes sense now since I moved in GA. The genetic mutation doesn't just happen to all of my side in the family. In the dna mutation they don't quite understand why in the family from generation to generation doesn't get it and then it'll appear on 1 or 2 etc BUT they've also found out after doing genetics how a parent or sibling will have something happen like my brother & I & get tested have that same mutation and yet go all there lives with nothing happening.
There was a medicine that a facility tried for Cavernous malformations but took it off the market because it didn't help. There is something else but waiting to be sure it'll work. So hopefully in 5 years it'll be available but for now all they can do is once it ruptures to remove it. For me I have many all over my brain. He doesn't see a reason to have an EEG done only because of not having a seizure. The results are only going to come back normal but he doesn't want to come in between the neurologist decision on that just to hold off on the MRI a little longer. As far as switching medication to another he understands my concern in having another seizure. Until the doctor gets me to the dosage level I need with the new one. Since I was having trouble with the other one. (It began today so I’m a bit nervous about the drop of 500mg twice a day from 1500mg twice a day to adding Lacosamide 50mg x2 a day from my one med to the other.) But this other one is top of the line medication. I have a follow up with the neurologist in 5 1/2 weeks and the neurosurgeon will view the MRI and let me know how that turned out. Other than that I’ve been getting better though before we switched to this new medication. I still can’t handle too much noise though or too much interaction with others again due to my ears being sensitive to everything but I’ve been getting around better though. I’m hoping in a couple months I’ll back to normal because my daughter has a recital for singing a solo coming up in that time. My husband said perhaps take ear plugs for the rest of the recital since it’s instruments from each child. But I have time and perhaps things will be better by that time.

Good Morning @tkmoyer3
It sounds like your recent appointment brought so many answers!
I'm also so glad to hear you've been feeling better! Regarding the noise sensitivity, something just came to mind that might help: white noise. There's a free app called White Noise Lite:
https://apps.apple.com/us/app/white-noise-lite/id292987597
https://play.google.com/store/apps/details
It might be worth mentioning it to your neurologist to see if it could be a good fit for you right now.
Speaking of treatment, I'd love to know what your neurologist has said about Epidiolex. Being on both Keppra and pure CBD oil myself, I'm curious how others are approaching Epidiolex alongside an AED.
Fingers crossed that the noise sensitivity eases up quickly so you can be fully present and enjoy every moment of your daughter's recital. 🤞💜
Chris