Are my seizures related to chemo? Who can help with this?

Hi @mommacandy!
First, welcome to our group here at Connect. I see Louis has already given you great support — thank you so much, @louissc!
Like Louis, I'd never heard of ovarian cancer treatment evolving into epilepsy before, but I was curious, so I did some research. It turns out this can happen, though it's relatively rare. Certain chemo drugs used in ovarian cancer can trigger PRES (Posterior Reversible Encephalopathy Syndrome) — a temporary but serious brain condition. Seizures occur in the majority of PRES cases, and in a minority of those cases, it can evolve into a lasting epilepsy diagnosis. I'm not a doctor, so please check whether this information holds up with your own medical team — here are some sources I found useful:
Extreme complications related to bevacizumab use in the treatment of ovarian cancer: https://pmc.ncbi.nlm.nih.gov/articles/PMC7812204/
Case Report: Benign reversible encephalopathy syndrome after bevacizumab therapy for metastatic ovarian cancer: https://www.eanpages.org/2013/03/01/case-report-benign-reversible-encephalopathy-syndrome-after-bevacizumab-therapy-for-metastatic-ovarian-cancer/
Epilepsy after neuroimaging normalization in a woman with tacrolimus-related PRES: https://pubmed.ncbi.nlm.nih.gov/20171145/
What really stood out to me, though, is that your seizures started well before your cancer treatment, and you were already on anti-seizure medications with good results — even though you've never received a formal epilepsy diagnosis. My interpretation is that you likely have a pre-existing, undiagnosed seizure disorder — not new-onset epilepsy from cancer — with your ovarian cancer treatment possibly increasing your seizure activity on top of that.
I relate well to the undiagnosed part myself. I lived for decades with undiagnosed epilepsy until 2019, when I was finally diagnosed at 48. I started having focal seizures as a teenager, and every EEG and MRI came back normal for years. Doctors — including neurologists my mother took me to — simply told her it was "my nature." Without a correct diagnosis or treatment, my seizures gradually worsened over the years, until an EEG with sleep deprivation the night before finally captured epileptiform activity. Undiagnosed epilepsy turns out to be far more common than people realize — I've heard similar stories from many others, including in this CURE Epilepsy podcast about a young doctor whose own epilepsy went undiagnosed for a decade, despite her medical training:
Despite Medical Training, A Young Doctor's Epilepsy Goes Undiagnosed for a Decade - Cure Epilepsy
https://www.cureepilepsy.org/seizing-life/despite-medical-training-a-young-doctors-epilepsy-goes-undiagnosed-for-a-decade/
Given my own journey, I'd really recommend seeking out a neurologist with strong experience in epilepsy, or ideally an epileptologist.
Since your last EEG was quite a while back and came back inconclusive, has anyone suggested repeating it — ideally with sleep deprivation this time? Also, do you know what your MRI from January showed, and whether it was a standard brain MRI or a more specific epilepsy-protocol MRI?
Sorry for such a long post — I hope some of this helps.
Chris

Hi @mommacandy!
First, welcome to our group here at Connect. I see Louis has already given you great support — thank you so much, @louissc!
Like Louis, I'd never heard of ovarian cancer treatment evolving into epilepsy before, but I was curious, so I did some research. It turns out this can happen, though it's relatively rare. Certain chemo drugs used in ovarian cancer can trigger PRES (Posterior Reversible Encephalopathy Syndrome) — a temporary but serious brain condition. Seizures occur in the majority of PRES cases, and in a minority of those cases, it can evolve into a lasting epilepsy diagnosis. I'm not a doctor, so please check whether this information holds up with your own medical team — here are some sources I found useful:
Extreme complications related to bevacizumab use in the treatment of ovarian cancer: https://pmc.ncbi.nlm.nih.gov/articles/PMC7812204/
Case Report: Benign reversible encephalopathy syndrome after bevacizumab therapy for metastatic ovarian cancer: https://www.eanpages.org/2013/03/01/case-report-benign-reversible-encephalopathy-syndrome-after-bevacizumab-therapy-for-metastatic-ovarian-cancer/
Epilepsy after neuroimaging normalization in a woman with tacrolimus-related PRES: https://pubmed.ncbi.nlm.nih.gov/20171145/
What really stood out to me, though, is that your seizures started well before your cancer treatment, and you were already on anti-seizure medications with good results — even though you've never received a formal epilepsy diagnosis. My interpretation is that you likely have a pre-existing, undiagnosed seizure disorder — not new-onset epilepsy from cancer — with your ovarian cancer treatment possibly increasing your seizure activity on top of that.
I relate well to the undiagnosed part myself. I lived for decades with undiagnosed epilepsy until 2019, when I was finally diagnosed at 48. I started having focal seizures as a teenager, and every EEG and MRI came back normal for years. Doctors — including neurologists my mother took me to — simply told her it was "my nature." Without a correct diagnosis or treatment, my seizures gradually worsened over the years, until an EEG with sleep deprivation the night before finally captured epileptiform activity. Undiagnosed epilepsy turns out to be far more common than people realize — I've heard similar stories from many others, including in this CURE Epilepsy podcast about a young doctor whose own epilepsy went undiagnosed for a decade, despite her medical training:
Despite Medical Training, A Young Doctor's Epilepsy Goes Undiagnosed for a Decade - Cure Epilepsy
https://www.cureepilepsy.org/seizing-life/despite-medical-training-a-young-doctors-epilepsy-goes-undiagnosed-for-a-decade/
Given my own journey, I'd really recommend seeking out a neurologist with strong experience in epilepsy, or ideally an epileptologist.
Since your last EEG was quite a while back and came back inconclusive, has anyone suggested repeating it — ideally with sleep deprivation this time? Also, do you know what your MRI from January showed, and whether it was a standard brain MRI or a more specific epilepsy-protocol MRI?
Sorry for such a long post — I hope some of this helps.
Chris

I was diagnosed with cancer at 8 months which I later found out I prolly developed because my dad mixed chemicals with his hands before my mom was pregnant with me. I had chemo and developed seizures when I was 10 (and a type of phobia-aura that goes with them). They were not big seizures (absence) and over the years morphed into frontotemporal epilepsy (or at least presented that way). I was told about 15 years ago, by a GP, that they were most likely due to chemo. He was quite sure

@santosha the neuro i saw was an epilepsy specialist, and i dont remember exactly what he said but the main reason i was sent to him (in the same teaching hospital i get my cancer care at) was to switch me from dilantin to a drug that would "play nicer" with chemo drugs they were putting me on and also to check out the trembling i have developed over the past few years... they determined the seizures that happened AFTER the last chemo (which was the last one of this cycle) must have just caused a drop in the levels too low as there have been no further seizure activity... i've also been told that the last CT scan i had a week ago shows residual cancer cells and there really isn't anything else that can be done other than a clinical trial i'm being evaluated for but my team of docs are on top of everything and if i agree to the clinical trial then i'll have a ton more testing done on me lol... i'm considering it but i'll be honest there's a lot of prayer going into this one...

@santosha

Hi Chris,

Thank you for sharing all those links which you also did in other posts. I did read them, learn more about epilepsy and also see if there may be other undiagnosed condition(s) which I might not be aware of at all. I believed I am also aware the pool of neurological patients in Singapore is a small one, thus doctors here can still lack one in a country with a larger patient pool thus will have wider exposure to much more different/rare condition. Just that, which hospital to go? And where?

Anyway, I hope all’s going well with you. And @mommacandy , I sure hope things are getting better.

Cheers,
Louis