I saw a neurosurgeon today and he seemed keen on embolization but its purpose is to stop the headaches only, apparently. He then mentioned radiation. He told me if they were to resect it, I’d lose my ability to speak permanently among other possible risks. He suggested an angiogram and he prescribed me keppra (500 mg) daily. The keppra is because I told him about a symptom I’ve been experiencing since last year. I keep sneezing way more than normal and everytime I do, my head hurts, and that always makes me anxious 
. I thought it was something else like allergies. But before I saw the neurosurgeon today, I noticed that my MRA report says, “…this drains via cortical veins extending to the left transverse sinus”. Have no idea what that means but I’m pretty sure it’s the cause. Neurosurgeon thinks it might be seizures. He told me to start on keppra to confirm whether it’s seizures or not. I’m a little scared of taking keppra to be honest. I never heard of sneezing being a seizure… The visit was so fast! I didn’t get a chance to process everything… So I might not be wording it 100%. I might have misunderstood some of their wording. I agree that angiogram feels like the best next step for me because it makes it even easier to confirm what treatment is best. For those who have experience going here, do you recommend an angiogram at UC San Diego Health? I was planning on getting a second opinion from Barrows after this visit but now I’m thinking that the angiogram should be done first before I do that. I saw Jeffrey Pannell by the way. If anyone can tell me what they think about sneezing being connected to seizures, that’d be a great help. I didn’t even pick up my keppra today. It’s still waiting for me…
Its never great when the visit with the Dr. creates more questions than answers. I can only speak from my perspective, I had gamma knife and am on Keppra 1000mg twice a day. I am a huge believer in second opinions but would certainly, if it were me, have the angio before hand. In respect to the sneezing and seizures, I have not heard of that, but the Dr are the experts but I may consider seeing a neurologist for a second on that. Im not sure if this helps! We all share many things but are all so different at the same time in this wonderful AVM world. Take Care, John.
Hi Luca,
In my view the angiogram is the diagnostic tool that all clinical decisions will be based upon, no matter who you speak to. So I would get that done first, before seeking another opinion.
Sorry, I have never heard of sneezing and seizures, but I do know an awful lot about Keppra, as someone who takes it. It works wonders for me.
Hey Luca,
My name is Merl, I’m a member of the Modsupport Team here on Ben’s Friends.
I think you’ve been given some good advice from both @JD12 and @ForTheWin. The neuros are likely to send you for an angio, having it done prior means the neuros have time to consider it before you face-to-face appointment. The more information they have, the more complete their opinion.
Now, as for the ‘seizures’. I’ve required a few neurosurgeries and after the last one, I was having what was thought to be ‘absences’. I had periods where I seemed to ‘phase out’. Someone who saw me explained to me “It was like the lights were on, but nobody home”. The neuro sent me for tests and scans, calling it ‘epilepsy’. But nothing was found. After one of my surgeries, I had some awful sensation on one side of my face, long after the wounds had healed. It too was called epilepsy. I previously worked in the disability field and have seen many clients have seizures ie petite mal and grand mal from the ‘shakes’ (petite) to full-on thrashing (grand). I don’t have those types of seizures, but it seems if they consider it an electrical signalling issue then it’s labelled epilepsy.
Previously I had been put through a rotation of all sorts of epilepsy meds. I queried why and was told that often the electrical signals in the brain get mixed up due to differing causes. The medications can assist in regulating those signals. There are a fair number of differing medications and figuring out which maybe of assistance to you, can be lots of ‘trial and error’. So, please don’t be expecting the first medication trial to be the one and only option.
Hope it helps
Merl from the Modsupport Team
I recently learned that the visual disturbances that I’ve experienced (pre and post AVM embolization and GK) may be focal seizures, and I too, was put on Keppra (500mg 2x/day) to see if they’d stop. The thought of my visual disturbances being seizures hadn’t really crossed my mind, but since I’ve been on Keppra the visual disturbances have stopped leading the doctors to believe that they were indeed focal seizures.
I’ve never heard of sneezing being a seizure, but I had never heard of visual disturbances being seizures either, so there you have it. Also, I get the impression that focal seizures are a little different from the “traditional” seizure that I imagined, so there is that, too. The brain is full of surprises! I say stay open to what the doctors say and use resources like this site to learn about other people’s experiences.
I also agree with Merl from the Modsupport Team that sometimes its a lot of “trial and error” when it comes to meds, so don’t give up!
As for the anxiety, I 100% get it, the visual disturbances caused me massive anxiety initially and after some therapy and meditation, I’ve somewhat gotten the anxiety under control.
Best of luck to you!
Hey @Lizz,
I used to think that when medicos spoke of a focal seizure it was in reference to vision issue, related to ‘focus’. In terms of seizure activity it was explained to me that the “traditional” seizure is like a storm that covers the brain. In years gone by there was a procedure where the corpus callosum, the part that joins the left and right hemispheres of the brain, was cut to stop the storm from affecting the entire brain. It did stop the storm, but the procedure created another condition often called “Alien hand”, where one side of the brain had no communication with that side of the body. Some functions occur without physical recognition from the brain, like it was disconnected (hence the name ‘Alien hand’).
Focal seizures are focused on a specific region/area of the brain. Sometimes this can be focused on the visual cortex, it can also be focused on the olfactory senses or motion or taste or any other brain functions. For some people they can have focal seizures of 3 or more functions at the same time, but still not have a ‘traditional’ seizure.
Hope it helps
Merl from the Modsupport Team
Super helpful, thank you!
Hi All. Just chiming in here to back up much of what’s been shared. Like Merl said, the “focal” part of focal seizures just refers to a foci in the brain. In my case, I get focal seizures that are very similar to a migraine aura and also sometimes mimic flashing lights or phantom movements (imagine like a original film strip movie flicker type thing). My neurologist explained that these are all happening in my occipital lobe at the site of my AVM rupture and subsequent surgeries. Essentially there have been tissue changes to my brain which created scar tissue or other areas that were damaged/changed. They think the seizures are a consequence of this. Perhaps sneezing is controlled in another foci of the brain! @Luca5304 Keppra has done wonders for me. I have gone 4+ years with very few breakthrough seizures and virtually no side effects from the meds. I also totally understand that you’re taking in so much information right now and it can feel really overwhelming. A new medicine on top of that is a lot. I find it’s helpful to go to each appointment with questions written down and I ask the doctors to slow down while I write the answers. Usually this is just on my Notes app, but sometimes I bring pen and paper. Also, second what has been said on the angio. Having that in hand along with your MRI will be most helpful as you pursue a second opinion. Wishing you a smooth ride as you sort this first part out. The beginning is really hard, but once you have a treatment plan I’m hopeful it will all feel more manageable. Take good care - Savanna