r/PNESsupport

As I write this I’m laying in bed next to my sleeping wife after she’s had a PNES seizure an hour ago. I’m heartbroken for her. And frankly pretty shaken up myself.

TW (specific description of symptoms)*

She has a long history of PNES episodes, dating back to a trip she took when she was 18 (she’s now 37).
After her first seizure she saw a bunch of doctors and as I’m sure all of your are unfortunately aware, they gave here the “it’s either epilepsy or it’s not”. Clean EEG/EKG, tilt test, scans, etc. etc. But a history of anxiety and panic attacks. The doctors chalked it up to strong panic attacks - prescribed years of various types of medications and general therapy and sent her on her way. No one in her life believed they were real seizures, accept for a few close friends who had witnessed them first hand.
She kept having them every few years - she’s lucky to not have them regularly, usually spread out by years rather than months.
Fast forward to us meeting and getting together (she actually had a seizure one night after we hung out early on into us dating, and didn’t tell me till 6 months later. I felt awful.)
6 yrs ago I witnessed one, it came on the heels of a highly stressful situation and manifested exactly as she said it always does. And guess what, it’s a full blown seizure! Hyperventilation, body convulsions, head jerks, loss of consciousness, loss of breathing for some period of time, mouth and jaw clenched shut, sometimes followed by vomiting.
The first time I saw it I was terrified, everything in me wanted to call 911 and rush her to the hospital but she had begged me if it ever happened that I just ride it out with her and don’t call 911 unless she injuries herself or fully stops breathing - she’s had the same frustrating and unhelpful ER trips and many others on this thread. It took everything in me not to call 911, I thought she was going to die.
Since then we’ve made a concerted effort for various lifestyle changes, she found a therapist she loves, and even through some very dark times and traumatic events hasn’t had a seizure since. She did however faint at the alter during our wedding 3 years ago. We think it was right on verge of a seizure but luckily it was not. Just 90% of the way there, having some panic from standing up in front of a crowd and being extremely nervous - and down goes Frazier! We laugh about it now, but deep down I think we both feel a bit traumatized by it.

I apologize for the long winded post, maybe all this context is overkill.

To cut to the quick - she’s had her first full seizure in over 6 years tonight.
After the last one I took to the internet trying to find any explanation and found out about PNES - it’s identical to what she experiences.
At the time she was still too traumatized and annoyed to go back through the full doctor whirlwind - but I feel like this time might be different, we’re older, she’s got a great handle on her anxiety and panic, we have resources and money to spend on this if needed.

Are there any PNES doctors or resources we can reach out to?
Is it just about finding the right balance of medication that works for you, lifestyle changes, and various type of therapy? Does it ever fully end for anyone?

I feel like maybe a full “legit” PNES diagnosis might do some mental good for her (and maybe for me?).

I also feel pretty inept and helpless when she has her seizures. I think it’s pretty clear that I need to take some level of EMT training. My biggest concern is that at a certain point in her seizures she stops breathing - tonight felt like for almost a minute. I had to pat her chest and continue to tell her to breathe and then moved her on her side. It’s like she hyperventilates all the air out of her lungs and then either holds her breath or just stops breathing anything in - either way it terrifies me.

Any advice, resources, guidance, reassurance would be really appreciated.

And thanks for everyone’s vulnerability and openness on this Reddit thread.

Sorry to put this on you guys, but I don't know where else I could ask for support.

I have always felt like a bit of a fraud and been very self conscious of having these seizures. I have been able to handle it though by talking myself through it, reading up on the disease and reminding myself about the nature of them, and giving and receiving support here.

Lately I have been really doubting myself. And I don't know if I'm projecting my doubts on my friends and family or if the vibe really has changed. But now I am really afraid of having seizures in front of ANYONE. I also feel very ashamed and like a failure when I have one.

It doesn't help that I have managed to learn how to better suppress the seizures for later. I've learned that if I just don't relax, I can hold off a seizure most of the time. I know that's how they work, but it makes me feel terrible, like I am doing them for attention. By myself in my bed. While not telling anyone.

It really sucks, because I'm just doing my best to live my life. I'm divorced now and a single mom, so I have to find a way to keep my life running for my kids and me. And I've done that, I've managed to learn to hold off the seizures until I can have them safely and privately, most of the time.

It comes with a price though. When I do that, I tend to have worse seizures when I do finally lie down and relax my body. And the whole time, I do my best, but lately every seizure comes with a huge amount of shame and . . . self bullying?

And the fact that I almost always have bad seizures for two or three days after the kids go to their dad's also makes me worry that maybe this really is all in my head, maybe I secretly do want attention or something, even though I never tell people unless I am too sick and need help with the basics.

And I feel so ashamed when I get that sick, asking for help is the absolute LAST thing I want to do, but I have pets that need looking after, and even though I would rather lie on my floor for 24 hours or until I can get up and resume life, I can't do that to my pets, so I ask for help even though it's humiliating. But then I feel horrible after.

And to be really really clear, someone has always come to help. They have never complained, they have been cheerful and helpful. I don't know why I am feeling worried that they think I'm faking. It's probably a me thing. But I can't shake this horrible feeling.

Thanks for reading this far. Any advice would be appreciated ❤️

Hello, we were just released from a second multiple day stay in the hospital. The first was in July at a regular hospital but one with a pediatric cardiology unit. This last one was for six days at a children’s hospital. My daughter has experienced multiple episodes of what they are now calling PNES after doing something physical. She is always running, dancing, gardening, etc before an episode. They have done multiple multiple eeg’s. She does not have seizures. What landed her in the hospital in July was a Long QT Rhythm reading on an ekg. She has since had numerous long QT Rhythm’s and multiple borderline rhythms. They are doing genetic testing for long QT syndrome. Otherwise her heart looks good. Anyway my question is- her episodes are only precipitated by something physical not anxiety or stress. They last four hours and hours. Is this typical for PNES. The doctors were like we don’t know for sure it’s this but we’ve ruled out a lot of other things. My daughter is adopted and has a significant trauma history so I kind of feel like they are dumping us in that bucket. Wanted to get your thoughts. Thanks!

Has anyone been able to drive after getting their diagnosis? I’ve been seizure free for two months now, and I’m hoping it stays that way—for obvious reasons, but also because I NEED to be able to drive. I dont live in an area where public transportation is an option. It just sucks because right when I was actually studying to get my license, I started having seizures🫠

I've had stereotyped episodes since childhood (~30 years). They usually start with déjà vu, then chest tightness/heat/sweating and sometimes nausea, followed by about 2–4 minutes where my recent memory seems impaired. I'm awake and can talk, but I may repeat myself, forget parts of conversations, or get confused about the date/location. Afterwards I'm usually disoriented/headachy and often don't remember the episode well.
I've had multiple normal routine/ambulatory EEGs and a normal-ish MRI. Several antiseizure medications haven't meaningfully reduced the episodes.
I'm trying to understand whether people with focal/temporal seizures OR functional/dissociative seizures recognize this pattern.
If you've experienced something similar, what was your eventual diagnosis, and what happened when you had a typical episode captured on video EEG?

Hi everyone. When I was younger, I felt ashamed of my name because a popular Russian comedy show mocked it in a way that also had racist and xenophobic undertones. I’m not ethnically Russian, and this affected me deeply.

I became depressed and started having seizure-like episodes. Over the years, since I was 20 different doctors diagnosed me with epilepsy, and I took Depakine and Topamax for many years. Recently, I was told that the episodes were psychogenic rather than epileptic, and were described as tics.

Now I don’t know how to move forward. I’ve lost all my friends, have barely ever worked, and I’m 34. I’m struggling with severe depression and suicidal thoughts. I blame myself for not taking my health seriously enough—for trusting the diagnoses instead of seeking more opinions and further testing.

Has anyone been through something similar? I’m afraid I may never recover from the effects of taking these medications for so long.

Nervous about this, so I went to the neuro early this year for sensitivity to flashing lights and had blank out spells especially during stress. My arm will move and twitch on its own a lot. I would freeze up and blank out and come back in a few minutes. At worse my body would lock up and I can’t speak or control my face. Well I did the eeg and mri everything normal so neuro told me try therapy. Well months later a new neuro took their place after retirement. He was very kind and understanding. I showed him the video my husband recorded and he said he wants me to do a 3 day test at the neuro hospital. I’m nervous because I didn’t expect to have this. He said the video helped and he suspects PNES, he verified it is real but that something therapy treats not neuro bc it’s not from epilepsy. I thought he would just say you’re fine stop stressing like the others. It’s like I’m scared they will find nothing and I will look like a faker and what if I am milking it. Then im nervous they will at the same time and lose my driving license which also is my job so I won’t be able to keep my job. What are your experiences with these?

I was diagnosed with NEAD (non-epeleptic attack disorder) earlier this year after a history of seizure like activity (started at around 17, can be just a gap in time/facial twitching - all the way to full body locking up and jerking), I've had a history of cluster seizures which my GP thinks was a "vasovagal attack"? Due to my oxygen levels and temperature dropping.

I've recently been started on lamontrigine (lamictal) for severe mood episodes, I've only been on it around 3 weeks so still early days, but I've noticed that I've not had any seizures/seizure like activity since starting it, it was semi regular for me to have facial twitching or an absence - but I've not had any or even felt any form of "aura" since starting it. I'm planning on bringing it up to my GP next time I see them, but I was just wondering if anyone else has experienced this or anything similar?

I had a starter event in March; was fine until July and now having a “event” almost daily . My blood pressure rises to 180/100 in some events with pulse rate of 140-160 each time. Was seen by Atlanta NeuroScience head epilepsy specialist. How do yall cope or work etc? Im a single parent and trying to keep myself together is becoming hard.

Does anyone want to be friends?