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

@louissc
My pleasure, Louis!
The question of where to find the right specialist, especially with a smaller patient pool nearby, sounds like a genuinely hard one to navigate. Unfortunately, I don't have insight into hospitals in your region. But after searching a bit, I read that Bumrungrad International Hospital in Thailand, for instance, is considered one of the most advanced epilepsy centers in Asia.
Chris

@mommacandy , Good Morning
Thank you for the updates! I want to start with what matters most right now to you. I'm truly sorry to hear about the residual cancer cells shown by your last CT scan. It's more than natural to have the feelings you've been having. Leaning on prayer and trying to keep a positive mindset can make such a difference in moments like this, as I also believe. During the fear, anxiety, and stress I went through in my own epilepsy journey, I also tried to keep my mind focused on the present moment, making the best of each one, and following my yoga teacher's advice not to anticipate possible "future belly pains," as he likes to call it.
It's reassuring, at least, that you did see an epilepsy specialist. As I experienced myself, low sodium levels are a trigger for seizures — this was actually the trigger for my first tonic-clonic seizure after being diagnosed with epilepsy, following my start on Trileptal (oxcarbazepine), a traditional, older anti-seizure medication that works as a sodium channel blocker. Vimpat (lacosamide), which I also tried afterwards, can cause low sodium too, though the risk appears meaningfully lower than with older sodium channel blockers. In your case, as your team mentioned, the drop seems more tied to the chemo cycle itself rather than the Vimpat itself.
Please know this community is here for you,💜
Sending you strength and peace as you move through this. 🙌🙏
Chris

@blaireth

Hi,

I may be wrong. I always believe seizure is a symptom of epilepsy. One with epilepsy will have several symptoms besides seizures.

Perhaps it’s time to visit a GP for your concerns to be addressed. He/she can then write a memo for you to visit your first consultation at a hospital. During then, the doctor will probably assign your case to the department which is the best position to handle your case. After all, it’s been many years and to me, it’s time.

Just my opinion and I hope things can only be better for you.

Cheers,
Louis

@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

Also I was told that I was not supposed to stay on Dilantin -which I believe I was on at around age 11 and then again at 16) for an extended time. I was on it the 2nd time for around 3 years (longer than the doctor wanted but it was one of the first things that worked since I was about 13 and I was so relieved that I wouldn't get off it). Just something to consider, NOT telling you to get off it nor that this will definitely be the case for you

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...

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

@mommacandy

Hi,

Being in a hospital rather than a clinic is a good one. I had just been discharged from a hospital after being down with Influenza A (which probably caused those scary 3 seizures within 6 hours).

My frustration was doctors from same department couldn’t agree on whether I could be discharged. I gave up, and said “get me out of here”. No other doctor from other department was there despite my primary cause for admission was influenza.

It’s heartening to know a great coordinator is behind your back. One good thing about not sticking to 1 single specialist is there’s no “group think”unless a team from same department will be evaluating your case after consultations. And doctors from different departments work with each other to determine root causes.

If you’re comfortable with the team you’re working with right now, there’s no harm sticking with them. But if it’s been too long, do discuss openly the practicalities of obtaining a 2nd opinion. I did it with my current neurologist and he shared after almost a decade handling my case, if I were to switch, it’ll probably be overseas and I would have to start from 0. I’m already 45, and we did discuss the challenges I would face. There were only that many decades left in my life. He said the final option was mine and he wouldn’t stop me. I trusted and still trust him. If those medications don’t work? I’ll just call it life.

I do hope the doctors handling your case are great ones and things can only go up for you. Most importantly, no doctor can keep your spirit up and that’s under your control. When things don’t feel well in my body I’ll just tell myself it’s ok that’s a side effect. That’s some no med can do for you.

Cheers,
Louis

@louissc all in one hospital and its a big teaching hospital...so far no one can agree on what it is specifically , but seems like the consensus among the doctors on the team has been levels just dropped a little too low after the chemo and nothing to be concerned about as all the bloodwork on Monday was fine and there's been no further seizure incidents..
i actually have a couple different surgeons, 3 oncologists, endocrinologist, neurologist, nutritionist, pharmacist, a couple of nurse practitioners, dermatologist, social worker, chaplain AND a care coordinator in my "care team" (prob someone else I've forgotten LOL)... so basically when i contact the care coordinator she coordinates with whichever doc is needed for whatever is going on...between the various cancers and other stuff I've been through over the years I've tended to rack up a few who are familiar with me LOL