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Refractory Epilepsy and a Neuropace, Weird Seizures
TLDR - Last paragraph
So I've not commented on here before but I figured this might be a good place to see if anyone might be experiencing anything similar to myself. I'm 36, and back when I was 16 I had my first convulsive seizure out of no where. One more and a year later and I was on Trileptal 8 years fully controlled until my time was up and they started again.
Never a reading on an EEG, so they figured it was Benign Rolandic, I'll just grow out of it. Thanks Tri-Care.
Fast forward 16 years, countless Neurologists just throwing more Keppra at it (which never did anything) and I finally find a phenomenal Neurologist who says hey, maybe we should actually study your epilepsy instead of throwing drugs at you. Stereo EEG (God help me) diagnosis sees Temporal Lobe Epilepsy. Topamax stopped the convulsions. Vimpat added on once TLE was diagnosed. Keppra remains given how high a dosage it sits.
In 2024 I ended up getting a Neuropace Stimulator installed in my left hemisphere, as it was determined most my epileptic activity tends to stem from my left hippocampal region, leaving me a non-surgical candidate for my epilepsy. I've also now had Xcopri added with the hopes of removing Vimpat or Keppra since those never seemed to have helped at all.
Where my epilepsy stands: I now have non-convulsive seizures, generally blackouts that that happen rarely but occasionally during the day that result in me acting as if on auto-pilot for about 15-30 seconds, sometimes snaping my fingers and smiling repeatedly, and talking, but not remembering any of it. The used to only happen when I was asleep and never when I was awake, strictly nocturnal seizures for a decade. But once they started to happen while I was awake, one happened while I was driving, and I made complex maneuvers, stopped at a red light, went through a green light, even pulled myself over, which told me I was conscious, but just totally unaware of what was going on. Once I came to, I told my wife VERY voluntarily told my wife I wasn't driving until my Neuropace was adjusted proper. -- As time goes on with the adjustments, I do feel as though they reduce slightly in severity, as I used to scream in my night seizures and they would happen more often (much to my wife's chagrin, God bless her).
Has anyone else every experienced these very bizarre, non-traditional epileptic episodes, perhaps on similar medications or a Neuropace?
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Hi,
I guessed no one can offer you any advice regarding medication as it is best left for your current neurologist. I now have muscle convulsion once every 3 days to do, sometimes twice. All the mentioned drugs are not new, and while I won't say they didn't help (intensity of convulsion) the frequency remains. Due to that, quality of life hasn't changed much. The pre-seizure uncomfortable which can happen from hours-days before an episode remains. That limits my daily activities.
Anything neurological is complex and the issue(s) we currently face? We have to accept may have to bring to our graves. Every case is way too unique. This particular medical field during our generation is simply not that advanced till whatever we are battling can be solved.
One thing though - I certainly won't drive if I will if I am in your shoes. Even if it's not banned here if I have epilepsy, I certainly won't be able to face the guilty of hitting someone if I am to have an attack of any sort while driving.
May things get better for you.
Cheers.
Louis
Neuropace hadn't been offered as an option by my current neurologist. We had both agreed surgery for VNS and others can be risky and may not improve my quality of life enough to justify the cost/risk.
Hi @detahx,
Thank you so much for sharing your story here, and welcome to our group on Connect!
Sixteen years of searching for a correct diagnosis is such a long time. I'm so sorry to hear that.
Like you, I was diagnosed with temporal lobe epilepsy and have a small mesial sclerosis in my left hippocampus, having tried many medications that either didn't control my seizures well or caused unsustainable side effects. Temporal lobe epilepsy with mesial sclerosis can be highly refractory, as I learned myself. Thankfully, after many trials and errors, I found a good doctor who treats not just my seizures, but my epilepsy as a whole.
I'm very glad to hear you found a phenomenal neurologist who reached a real diagnosis and chose RNS over surgery. Surgery was once considered for me too, but I sought a second opinion, and that neurosurgeon felt that, in my specific case, the risks could outweigh the benefits. I'm currently on a combination of Epidiolex and Keppra, which has worked well for me. But as my neurologist likes to say, everyone is unique, even among people with the same epilepsy syndrome.
As for your question about seizures changing over time — yes, this can absolutely happen. I've experienced different types of seizures myself, along with changes in their intensity throughout life and anti-seizure medications. In focal seizures, I've already experienced involuntary movements such as lip-smacking and chewing movements, as well as jerking of my right arm. If it's ever possible, having your wife film an episode — even just with a phone — could also be incredibly helpful for your medical team to see exactly what's happening.
I'm sharing some resources on focal seizure symptoms, in case they help you see whether anything fits with what you experience:
Symptoms Focal Seizures - Mayo Clinic
https://www.mayoclinic.org/diseases-conditions/seizure/symptoms-causes/syc-20365711
Focal Preserved Consciousness Seizures - Epilepsy Foundation
https://www.epilepsy.com/what-is-epilepsy/seizure-types/focal-preserved-consciousness-seizures
Focal Impaired Consciousness Seizures - Epilepsy Foundation
https://www.epilepsy.com/what-is-epilepsy/seizure-types/focal-impaired-consciousness-seizures
I don't have personal experience with RNS, though, so I'm tagging @absentsenior who also has temporal lobe epilepsy and had her RNS implanted this year — she may be able to share her own experience with you.
I'm also sharing a discussion on RNS here in our group that might interest you:
Responsive neurostimulation (RNS) as an epilepsy treatment?
https://connect.mayoclinic.org/discussion/rns/
I'm curious — before these blackouts happen, do you notice any unusual smell or taste, or a sense of déjà vu? Have you had the chance to bring these symptoms to your doctor, to discuss them together?
Wishing you all the best, and let's stay in touch! I hope this isn't too much information all at once — I just wanted to share what I believe could be of help and support at this moment you are going through.
Chris
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