r/PNESsupport

To make a long story short, I'm her FP and I've been through it all with this woman for 17 years. Cheating, lying, name calling, self harm, threats, isolation, multiple vehicles, kids, lost moments, abandonment, money, sometimes physical, and have been at my lowest and have heard the worst. I finally had enough when old behaviors started coming back and took a two week break about two months ago and stayed with family. She didn't know until I had already left, so it was a shock. I said I'd come after her first therapy appointment.

She did her part and I came back. When I returned, I noticed she had "tics" and her cognitive slowed. She started having Functional seizures when I left. This progressed to symptoms like full blown tourettes and could barely function. Each seizure either brought something new or took something away. The last one she got made the tics stop and her speech clear, but it also started working on her memory.

She has no memory of anything from before I returned, but she retained everything about me as her fp from the time we met. Our kids are still young, but she only knows them as they are now. Doesn't remember pregnancy or birth. It was like meeting everybody the first time and relearning simple chores. It's been over a month and a half and nothing has come back.

Anyone ever hear of this or had it happen?

Every single month like clockwork right before my period starts I have seizures. And not the little ones where it’s like tapering off where they’re like 30 seconds long; they’re like three minutes and I keep biting my tongue during them. If there is anything that you have done personally to help you out of these seizure symptoms, PLEASEEEEE let me know! I’m a 18 year old trans guy (not on T yet) and if you have any suggestions please let me know!

I have PNES and usually during episodes I’m aware of everything going on.. So it seems like forever whether it was a short or long episode, but thankfully I have someone who times them.

My episodes have lasted anywhere from 15 seconds to one that was 6 hours.
Again, I was having a PNES episode for 6 HOURS… afterwards I was unable to talk for another 2-3 hours. It felt like forever because I was aware the whole time..

At the time I was in school so they had to call an ambulance immediately after I lost consciousness because of their protocols, so most of the episode was in the ER.

I feel like it’s not normal for PNES, or any condition, to have an episode for that long. Has anyone ever experienced a long episode like that?

EDIT: The majority of my episodes (including the one I’m asking about) are like passing out. My body goes completely limp and it’s like dead weight. Sorry, I should’ve clarified.

I don’t see alot of non convulsive non epileptic seizures online so im curious
I stare and drool for a few seconds and me i am semi conscious but there is a brief second i feel like i lose complete consciousness but before the seizure i usually start saying random words that don’t make sense and get goosebumps sometimes or feel weird in general and sometimes pace around for a little before the actual seizure and i get a feeling like my head is very heavy beforehand then i get a weird burnt rubber smell, and get tachycardia and sweat alot and turn red when i come out of my seizures i am agressive and have assaulted nurses due to being very confused and afterwards all of that i am left with a horrible migraine. My oxygen has also gone down during them before!

So I have my first job interview this week in a long time. I don’t know if I should tell them or should I keep it to myself and hope it never happens while I’m at work if I end up getting the job? My last job it never happened at but it was a different kind of energy there vs where I’m interviewing for now. Also just incase y’all ask no I don’t have any specific triggers for it is why I need some guidance now as to if I should say something about it. Thank you for your time and patience 😊

Good afternoon, everyone! I’m just wondering if anybody on here is on Social Security disability for your PNES??? if you are, did you qualify for that or other ailments as well?? asking for my sister-in-law

What are you all doing to stay seizure free? (pnes)

I have 1 maybe 3 seizures a year. I feel I almost have a grip on them but when I think i do BAM I get one at night 🤣 and mine resemble a tonic clonic seizure, i go unconscious and everything anyways what are yall doing to stay seizure free? Mine are not randon they come from stress 99.9% of the time. Yes I've done every test to rule out epilepsy. Thanks for the help.

Hi FND friends! I have two separate questions so if anyone has advice for either that could help, that would be wonderful! Just in case trigger warning talk of seizure and dystonia symptoms
I apologize if this question gets asked a lot or has been answered: what helps your functional dystonia, specifically in your legs and feet? Mine is triggered typically the worst at night when I’m relaxing in bed and sometimes I’ve noticed when my legs are chilly. I had restless legs before my diagnosis and only ever found one thing that helped that but I struggle a lot with this later on in the day. It’s such a random problem for me that I really don’t have much advice picked up so anything is appreciated!
My second question topic is for my functional seizure friends. Do y’all have them bad when you sleep? I’m getting quite frustrated/annoyed because I’ve known I have nightmares and sleep issues but they aren’t happening much in the day anymore and now are like these things that I half remember but like know happened, if you feel me? I have to be slightly conscious when they begin but they “end” by me falling asleep. I used to have them very bad during the day. But how do you get a more restful sleep? I can’t really control them. Little side note: I’m not sure if I was having them in my sleep when I had my EEG, I can’t remember that entire hospital stay :/ but I assume they are functional? Idk lol. It would prob say in the EEG notes if any happened in my sleep, yeah?

lyme. a neurological manifestation from lyme disease causes my non epileptic seizures. fnd. this whole time i really was suffering from something that wasn’t just starting from my brain, or trauma. funny how i have been gaslit and blamed and called attention seeking, treated like i have health anxiety. when in reality i have a life threatening condition from a tick that can cause anaphylactic shock to red meat, mammal stuff, called alpha gal syndrome. i also have lyme disease and it may be stage 3 as my symptoms have progressed since early last year. bacteria could be eating my bones and making me severely mentally ill. i have to wait to see an infectious disease specialist, to be put on the safest medication. i’m petrified to have all the damage done confirmed, but i know it’s been a long time. an allergist confirmed it through my bloodwork. this red meat allergy is something i may have struggled with since childhood due to symptoms. i also have to be tested for bartonella due to this alarmingly obvious stretch mark rash. never stop pushing for an answer if you have symptoms impacting your day to day life, disabling you, making your body unrecognizable, making it barely possible to eat, drink, or move. because your life is on the line. it may be too late for antibiotics to do anything now if i have had it for so long. there’s no way for me to know until i start them.

Do you let a employer at the interview? Do you mention that you have epilepsy or do you tell them after you get an offer from them or just leave it alone? Because I finally got a job and after about three other interviews with other companies, I mentioned I had epilepsy and never heard back from them, but at this interview, I did not mention that I had epilepsy and got the job the job offer on site. So I guess should you let them know before or after or just not at all?

Hello all. My girlfriend was recently diagnosed when taken to the hospital (she does have epilepsy as well) and they suggested that her PNES seizures are likely a result of her trauma. I’m currently trying to read up on the condition but I was curious how these started for others and what leads to it’s development (I’m not seeking medical advice) I just want to understand the condition and her more.

Bonjour à tous,

Je suis Laurent, H32, conjoint d'Audrey F29, qui a été diagnostiqué pour des crises non épileptiques psychogène CNEP, apparemment rebaptisé CFD pour crise fonctionnelle dissociative.

Je me permets de vous écrire car j'aimerai avoir des retours de cette pathologie, surtout concernant les personnes dont l'origine de ces crises vient d'un choc opératoire.

J'explique un peu plus l'histoire, ma compagne a été opérée le 25 février 2026, d'une ablation de la vésicule biliaire suite a une cholécystite aiguë, cette opération a été réalisée en urgence car la vésicule biliaire était totalement infectée d'une bactérie. Suite a l'opération, dans la foulée, elle a eu des douleurs intenses dans la ceinture abdominale et le dos, qui lui provoquaient des crises convulsives intenses jusqu'à cinq à six fois par jour.

Pendant une semaine, des examens ont été faits sans rien trouver, elle a été en soins intensifs, et à la fin de la semaine, une opération endoscopique et réalisée pour un soupçon d'un calcul qui aurait migré dans un canal. Soupçon avéré, opération réalisée. Le problème, les convulsions ont continué et on entraîné une hospitalisation en neurologie d'une semaine où le neurologue n'a rien trouvé à interpréter sur les EEGs pour écarter l'épilepsie. Il soupçonné des CNEPs sans pousser plus loin.

Elle est sortie de l'hôpital le 10 mars 2026, depuis cette période, ces crises avaient pratiquement disparu pendant un mois suite a une prise constante d'alprazolam, une benzodiazépine, cependant elle était fatiguée tout le temps. Aujourd'hui elle ne l'a prends plus, elle a été sevré tardivement et ne prends que de la sertraline.

On a décidé d'explorer ce sujet en se tournant vers un service spécialisé dans ces crises sur Bordeaux, nous sommes français et vivons à deux heures de ce service.

Premier rendez-vous en Juin, la psychiatre du service examine le parcours de ma femme et confirme les CNEPs qui auraient changé de nom et s'appellent dorénavant des CFD, crises fonctionnelles dissociatives et il s'agit d'un trouble neurologique fonctionnelle.

Elle nous explique que les médicaments ne fonctionneront pas et qu'une thérapie psychologique est nécessaire. Deux rendez-vous plus tard, ma femme a le dispositif médical à réaliser concernant de l'EMDR et la thérapie des schémas.

Entre-temps, j'ai dû être en arrêt car son état et ces crises quotidiennes m'ont altéré psychologiquement. Et le fait de m'occuper de notre fille de 15 mois a été nécessaire au vu des crises de ma femme.

J'écris du coup ici, ce long récit pour discuter de personnes atteintes de ces crises et qui ont eu la même origine, afin de connaître la réalité des soins, d'avoir du dialogue avec des personnes concernées et de pouvoir en parler avec ma compagne.

Merci à ceux qui m'auront lu, j'ai éluder quelques éléments sinon le récit serait trop long.

prefacing this by saying I know it’s not supposed to be embarrassing but I can’t help what I feel sometimes.

I was at a new college orientation since I was transferring and I was talking to a girl I had just met there and we somehow got on to the topic of pcos then it went to our health problems and I said,

“yeah I have seizures sometimes.”

“Oh you have epilepsy?”

And I remember just being embarrassed and agreed. I didn’t want to say PNES or NES because I didn’t want to go into it because I’m always worried I will be judged.

This is not the first or fifth time I’ve done this. I know it’s the right thing to say I have non epileptic seizures but when they have questions afterwards I kind of shut down and feel dumb.

I feel horrible I keep doing this because it will come to hurt me one day I bet with the confusion of what I actually have but I can’t seem to stop.

I’ve had about 4 of these episodes over the last maybe 4-6 months, but the last 2 were only a couple days apart, and I am in a terrible place mentally (I am safe, just really struggling in my head) I have PTSD, depression, and anxiety (plus more but I feel those are the most relevant).

I’ll be lying on my back, and my thighs start to tense up until I basically end up in the fetal position. It’ll tense up like that and then release after a short time and then tense up again. When it’s really strong, my back will arch and my eyes close. I also will clench my fists, and if there’s something in my hand like my skin, I will nearly draw blood unable to let go. These last two times I have felt like I could breath during the tensing, which then makes it even worse because I get scared that I can’t breathe, which triggers my anxiety and then I tense up again.

I do have an appointment coming up with a new mental health provider but it isn’t until next week, and I just had another one of these episodes a few minutes ago and it’s really starting to scare me.

A paramedic clapped his hand in front of my face loudly. I reacted since this time it was PNES and from there they started yelling and shouting and making fun of me. They even got aggressive and accused me of doing it on purpose (being unable to walk). They dragged me carelessly and I was bumping into things because of them and they claimed I did it on purpose even though I wet myself during the seizure.

I just needed to tell someone that gets it.

Just recently diagnosed, I’ve been having back to back seizures but coming around enough between. I was diagnosed in the ER and told not to come back because there’s nothing they can do. Today I seized for an hour straight, fell out of bed at some point and don’t remember anything from before during or after. I had two more after that and couldn’t talk, stuttering and unable to produce words. I haven’t seen neurology yet.

I am thinking about getting a Medic Alert Bracelet to put PNES on. Would you recommend the QR code ones or regular engraving and why? Also let me know if you have one from a certain place that you like. I am 🇨🇦 based. Thanks!

How many of yall stay conscious for the first half of the seizure then go unconscious the other half of the seizure? Or is that normal for a PNES seizure? ALL my seizures are triggered by stress. I have about 1 to 3 a year

I have had non-epiletic seizures since Jan 2026. I have been told by some doctors that its FND (no other FND symptoms though) and by some that it is caused by brainstem compression due to CCI caused by my elhers danlos syndrome. My seizures are reliably triggered by my neck positioning and improve significantly with a neck collar.

I have been getting more frequent seizures over the last week and its getting harder to be left alone (had a fall) or reliably eat safely. They last for less than a minute but can roll with an aprox thirty second break between them for an hour. Yesterday they rolled for an hour, then for thirty minutes. I had 5 whilst sleeping last night. Today i had 62 seizures between 9am and 9pm as observed by mum. Is this concerning? When does it warrant assessment or become an emergency? What should I do?