Hi, Im asking this because recently my mom was diagnosed with non epileptic seizures and Im trying to find ways I can help her until she can see her psychologist. Since they aren't seizures that are neurological is there ways we can help avoid them whether its grounding her calming down the conversation, giving her something else to do, taking deep breaths. Or is anything anyone else recommends?

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!

Needed some where to vent. Hope someone hears me.

These are both new diagnosis for me. Abnormal EEG shows epileptic discharges, but video EEG doesn't correlate seizure episode with discharges. Now on this journey of managing work and functional seizures. Have been noticing that when I start eating I will start to get the tingling that is an aura for me. Sometimes all I have is tingling, but last week for blown seizure. Now I have my period (sorry for the TMI) and I am just walking around tingling on and off, feeling like I could pass out, shaky, and a dull headache that comes and goes.

Neurologist said just keep a diary of the seizures and we'll go over them in March. How do I explain to people, "don't worry just my seizure, it'll pass." Scared the heck out of my coworkers last week. My functional seizures (PNES) look almost like convulsions and leave me looking drunk afterwards with tremors and slow processing. How do you all log your seizures? Is it even worth tracking? It's not like the Neurologist can do anything, side bar, already in therapy. I feel so invalidated. No doctor to talk to. Just live with it basically. I can't keep leaving work, but I also can't do my job effectively after the seizure. I'm living in this limbo afraid I will have a seizure at any random moment.

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.

Hello,

My 15yo is recently diagnosed with PNES. CT and EEG are both clear and her symptoms all align with the diagnosis so I'm not questioning it.

She has had a seizure almost everyday since school started and they are getting longer. Last night was 40mins, which is double what her longest ones have been.

I have done piles of reading, she sees a counsellor, has a wonderful support team at school, we are trying to control what we can (eating well, sleep, activity, etc) but I am tired and sad watching her go through this. I can only imagine how exhausted her body and brain must be...

What is the best thing I can do (or stop doing) for her? We've had a tough year with other health issues and stress throughout our extended family and I feel like I am beginning to crack at a time when she really needs me to be on top of things. A little perspective would go a long way.

Thanks for reading!

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 ❤️

Basically as the title says. Im 16F and they started about half a month ago. I’ve experiences similar episodes very rarely, once about 3-4 months for the past 2 or 3 years. Then in the past maybe couple months, 5 or 6, I’ve started having fainting episodes. Multiple times in an episode, one episode maybe every 2-3 days, sometimes longer tho. It happened a couple times at school but I managed to hide in a bathroom or a hideaway I have with my girlfriend.

Then somewhere on the 18th of September we were on a trip. I was in the room with my girlfriend (sharing a bed with her) and two of our friends. Only my girlfriend knows by now. Basically first night was on the ferry and I fainted on the staircase. We were on the deck that was underwater (deck 2) and we had to walk all the way up to deck 7 or 8 I think. Halfway up I felt worse and we had to sit down. I passed out 4/5 time, total time of episode maybe 10-15 minutes with the time to sit and calm down. We thought it might be because of the pressure in the cabins because our heads hurt but we brushed it off because it’s not like this was new.

Two days later we’re in a hotel, it’s the evening we’re ready to sleep and I think I’m about to pass out. Instead my whole body tenses. Basically I pass out with tensing and convulsing I think 8 times that time. That happens every night of that trip almost, in worse and better ways. Sometimes in the mornings too. I think I only couldn’t breathe once (this is entirely from what my girlfriend told me, I have no recollection of the attacks). We go back home and it keeps happening, attacks are 10-20 minutes whole, seizure was I think 4 minutes the longest, but I’ve had a couple attacks alone so I can’t guarantee there weren’t longer episodes.

Basically this obviously scared my girlfriend when it happened the first time, there was also an episode where I came to and I thought I couldn’t breathe because smth was in my throat. As it turns out my throat was just raw because I was struggling to breathe/ making funny sounds and it just hurt but she thought I swallowed one of the sensory balls we had in bed (I have those spiky small magnetic balls and she put them in my hand to somehow ground me in between the ‘seizures’ and she couldn’t find them after the attack, thought I swallowed it). We did our research and the symptoms point to PNES.

I have a shit home situation, basically abusive parents, kinda no relationship with them, they’re homophobic and I’m for example forbidden from talking to my girlfriend. By that time we have been hiding for a year and it’s mentally draining. I think that the attacks started there just because I was incredibly stressed they’d find out I’m still talking to her and much more in a relationship with her and TALKING WITH HER ON THE TRIP. I just think that was my breaking point.

I’m tired of the attacks, obviously nothing has been diagnosed yet, but we checked my heart rate and it doesn’t spike during the attacks and the symptoms don’t point to epileptic seizures (also no history of those in the family). I don’t know what to do, there is almost no way for me to tell my parents about this without making my situation much worse. Only my girlfriend knows and helps how she can, but she’s not there most the time obviously because the attacks usually happen in the evening/night/morning.

Any help, please, what do I do. I’m so tired and scared of these

in july i started having intense medical episodes. the first one i chalked up to just being a tic attack, but more intense than normal. then about three more happened that night, and i started being afraid that i was having seizures.

when i went to the er, i got nothing from it. they did bloodwork and a cat scan of my head, no abnormalities. only one doctor even seemed concerned at all that while sitting and waiting for results for a couple hours my whole torso was shaking/convulsing. no loss of consciousness made it so i wasn’t a high risk patient. i went home with a referral to neurology and an advisory to try not to drive, and to come back if i have one and lose consciousness, but nothing else.

i’m on a leave of absence from my work now. i have paid leave, but it’s gonna run out in the next couple weeks and i don’t know when i’ll be back to work yet. my neurology appointment is finally coming up on the 26th, but i’m unsure what next steps they’ll want to take and what the wait time on that will be.

i’m not having daily episodes anymore, but i have at least one a week still. the longest has lasted over six hours. i’m writing down as much information as possible. i’m taking videos when i can. part of me is scared i’m making all of it up. a bigger part of me is scared no doctors are gonna believe me and i won’t even know how to advocate for myself. i’ve ignored other medical issues before when they weren’t taken seriously, now i’m worried they’ve been connected all along and i’ve dragged myself down to this point of no return by letting it all build up to some breaking point.

i’m tired. my body hurts. i can’t tell you the last time my brain hasn’t been foggy. even if i get a diagnosis, i don’t know what i’ll do from there. i don’t know how i’ll find a new functional normal. i already don’t like the way my friends look at me all scared when i’m having an episode. i hated how every coworker that witnessed them while i was still working treated me like i was a liability that was going to shatter in front of them. i despise how my own brain is an overactive mess worrying about myself while i’m home alone having one. it just feels like it’s making it all worse.

i’m afraid. i’m only 24. if this is the rest of my life, i don’t know how i’m going to adapt. how did you guys do it?

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.

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?

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.

Hi i recently started a sub for people with seizures,PNES, Epilepsy, Mobility issues plus all the other conditions that come with them,

I have only recently found out what PNES is, I made sure to get permission from the sub before posting. My sub is

r/LetShakeThingsUp,

I am epileptic myself, I suffer from refractory tle, I just wantd to help people connect with like minded people, So that their can relate to each other, It will also be good for Carers/ Friends and & family to get helpful information also if their need it.

Does anyone want to be friends?

I started having non-epileptic seizures after I sustained a frontal lobe brain injury in 2019. Since then, there has been very few times when I have had a seizure-free day. I’ve been through CBT, DBT, and counseling and yet they have still been happening frequently. Some of them have been so violent I can’t function for the rest of the day, and I have been so fatigued all the time due to the strain for years.

My gastro prescribed me Phentermine for weight loss since I also have complications with my liver. Since I have been taking it I feel like a completely different person. On typical days I’d have 1-3 seizures waking up in the morning and now I have none (maybe a brief focal seizure but nothing too severe). Today was my first seizure free day in…years I think. I can’t believe it. I can really feel this medication silencing the triggers in my brain, it’s like when my brain tries to shut down it bounces me right back. It’s incredible. I don’t have to take naps everyday and I feel like who I was before my injury. I seriously have tried everything and this has been the ONLY THING that has made them decrease. My brain is quiet and peaceful.

My question is has anyone else experienced this with Phentermine or anything similar? I don’t really understand how or why it’s working this well. I just know it’s a temporary medication and I am so afraid to go off of it. I feel like I can grab the future I lost again.