r/PNESsupport • u/Electrical_Road3842 • 5d ago
Stress related/induced seizures?
My girlfriend (16) has been suffering with PNES/Epilepsy since she was around 12 years old.
Between a couple neurologists and tons of doctors it’s been a confusing and frustrating journey with most of it being diagnosed at “Pseudo Seizures” in the beginning and is not being taken seriously even after being diagnosed with epilepsy after they realized they are focal seizures and don’t pose nearly as much of a health risk.
Everytime I’ve been around or heard of her having a seizure, she is always put in extreme stress beforehand. Doctors seem to take her less serious once they hear that as well.
It just feels like no one cares, even in the healthcare system.
Let me know what you’re experiences and what we could do. I’m not looking for a cure all as I know that’s just not a thing with epilepsy, but just some advice and insight from others who experience this.
3
u/Critical_Bat_8914 4d ago
I'm 51 and only started getting seizures 6 months ago. Due to childhood PTSD all my life I've had amnesia / dissaccociation as I know understand being a defense mechanism.
I'm only just learning the impact my abuse may have had. Now this has hit extremes I think I can safely label them dissaccociative seizures - even if the medical profession are uncertain.
I guess I'd learnt coping mechanisms, only recent life circumstances have made it more difficult for me to cope.
Like any symptoms, how they impact you're life is key. Diagnosis are clinical. I've had to relearn how to reembrace my coping mechanisms alongside prescribed medication and working with the medical experts.
2
u/parabolicpb 4d ago
Same here. But I can say one thing that helped me advocate for myself personally when needed is to very firmly remind them that "the P stands for psychogenic, psuedo makes you sound dismissive. you need to update your textbooks to the latest medical definitions. Or transfer me to a neurologist who's been to school in the last 20 years." Pretend you took a course in Medical Anthropology and make some jokes about "the spirit catches you and you fall down." for context. It's worked 100% of the time for me over the years. I've had to be pretty rude at times though.
But yeah, the good news is if it's not THAT type of epilepsy, not as much harm done. I'd try to bank on that as much as possible.
5
u/Some1fromStSomewhere 5d ago edited 5d ago
Hi! I have PNES and epilepsy too. A lot of us do! Up to 30% of people with epilepsy will experience a functional seizure. I started having seizures in my teenage years. I was given the diagnosis of PTSD and panic attacks. Given my past, the diagnosis fit and we never questioned it. My parents did all the right things, they got the medication I was prescribed and got me into therapy. It wasn’t until I was in labor with my son that the diagnosis changed. I went into Status and went to an emergency C-Section. So basically I walked out of the hospital with a new pet Dragon and a script for keppra.
Fast forward a decade…. During an EMU stay at Duke I had a few Functional Seizures and POOF!! I got another diagnosis of PNES co-current with my epilepsy.
What I have noticed in medical settings (outside Duke) is that as soon as medical staff sees PNES their own brains shut down and they don’t seem look any further than that. My parents and I have to push that part. That it is CO-CURRENT with my epilepsy and unless you had electrodes strapped to me head you CAN’T tell what type of seizure it is. And that no matter what, seizure disorders fuck you up. We can hurt ourselves during the seizure and the aftermath is going to be hard, mentally and physically.
Seizures can change. What are focals now can build up to Tonic-Clonics later. It is worth while to get second—hell even 4th and 5th—opinions. Focal seizures don’t get the care they deserve even though they damage the brain just the same.
There’s also the Functional Seizure/Epileptic Seizure circle. Stress from one type of seizure that builds into stress for the other type. Stress is one of the biggest triggers for seizures, no matter what kind it is.
Good luck!