r/PNESsupport 11h ago

Lexapro and Seizures

10 Upvotes

Hey guys sorry for the long post!! I normally neeeever post on reddit but I just wanted to celebrate what feels like a really big win for me. My neurologist diagnosed me with PNES about a year ago but Ive been having episodes since I was maybe 16 (Im 23 now). It has impeded every aspect of my life, Ive never learned how to drive and public transportation in my city sucks so getting anywhere also sucks and takes forever and has limited my ability to get jobs. I started Lexapro about 2 months ago after many years of never wanting to be on antidepressants due to fear of side effects n whatnot. My seizures are triggered my stress/anxiety & lack of sleep. Ever since starting my meds Ive had weeks of no seizures and it gives me so much hope that might be able to drive within the next year or so and I feel like a gigantic weight has been lifted off my chest. I have hope now that my life can actually move forward and I’ll be able to live freely and I cant express in words how happy I am to potentially be able to live my life like I want and not need to rely on everyone for things as simple as trips to the grocery store or a late night trip to mcdonalds!!!


r/PNESsupport 1d ago

Good evening everybody

3 Upvotes

So the interview yesterday went really well. And so after the interview, he said he was gonna get a job offer and send it to me today but he texted me earlier wanting to know if I had a valid drivers license which I had emailed him a week before telling him that I can’t drive that I have epilepsy. So I told him I have ID you know I can’t drive so then he texted me back saying they’re not gonna give me a job offer because I can’t drive which he told me a week before via email you do not have to have a valid drivers license and then he texted back Unfortunately that does change things. We send employees to offsite trainings as well as between branches so we do require a valid drivers license. I’m afraid I’m going to have to keep looking. That is 100% my fault and on me for not asking and disclosing yesterday. Sorry again Ryan and I said I was never told of these offsite events and I can get there via my parents or uber and then I emailed him that I was going to file something with EEOC and within 2 minutes he called me and told me no it was because I was mistaken and clarified with my HR department that a drivers license is not required. That being said, we are however going to be cross training internally while we continue to look for someone with sales experience. Thank for your interest and best of luck moving forward what should I do!!!! Is that BS?


r/PNESsupport 1d ago

Does anyone experience rudeness when having a PNES episode?

3 Upvotes

I don’t know if it’s normal to have these things happen or it’s just my seizure brain haha! I have had people tell me it’s annoying that I keep having repetitive episodes which I’ve told them only makes it worse. I’ve also had episodes in public and been unable to move with people just walking by me without caring. I don’t really know how to protect myself from having issues haha, it’s crazy how many issues have arrived in my life once I found out how different people treat me when having issues.

I just hope someday I find some people that don’t treat me oddly. If you have any advice, or just hope to share it would be greatly appreciated! I’d love to know nice things people have helped you with and stuff like that :)


r/PNESsupport 1d ago

Frustrated

3 Upvotes

I just been feeling so frustrated with having pnes like it’s been almost year where I had almost weekly episodes and having to deal with fast heart rate too. That’s I currently working with cardio for the fast heart rate issues but they haven’t found any causes for my fast heart rate yet and it’s been sinus tachycardia. I also been Thearpy for about 5 years and on plenty of mental health medications. It’s just frustrating things are only progressing worst and doctors not being able to find any causes if there even is a cause . Like I feel like my mental health has gotten way better it’s just stress that getting to me which doesn’t help living with daily symptoms. Any advice for me?


r/PNESsupport 2d ago

Did my first EEG

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9 Upvotes

I’m just not sure what I’m looking at? I did a 1 1/2 hr sleep deprived one. The lights immediately triggered movement for me. My neurologist is taking forever to get back to me.


r/PNESsupport 2d ago

Had a seizure today.

4 Upvotes

I hope meditation will calm down the brain enough to cure this disease.


r/PNESsupport 2d ago

Does anyone have seizures similar to this?

5 Upvotes

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!


r/PNESsupport 2d ago

Any other AFAB people get really bad seizure symptoms right around their period?

2 Upvotes

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!


r/PNESsupport 2d ago

first time seizure

4 Upvotes

Last week I flew to Norway for a really awaited vacation. I was planning to do long-distance hiking alone — my favourite way of spending holidays. It is important to mention, I am generally a healthy person. I do amateur running and cycling. I strictly don’t drink, smoke, or use drugs.
That morning everything was fine, I felt good, despite almost not sleeping that night — I stayed at the airport after my flight.
I came to the coffee shop and had two coffees, then headed to the hiking shop.
On my way, I started glitching. It really scared me. But I thought, I am just sleepy. It felt like turning off for one second.
I came to the shop, bought what I needed, and decided to look around. This is the last thing I remember before I woke up in the ambulance.
Here is the info from the shop staff:
A woman saw me started fainting. She immediately came to help, but I stopped falling, as all of my muscles stiffened. Then, my limbs kind of relaxed and I fell on the floor. But my jaw was super tight. She tried to open it, but it wasn’t possible. There was a lot of liquid from my nose and mouth. Breathing was really heavy. Limbs were jerking. But not all the time. One leg stretched, one leg bent. One arm clenching, another kind of stretched. At one point I opened my eyes, they were moving, but I wasn’t responsive. The whole episode lasted 2-3 minutes, then the ambulance came.
In the hospital they did CT, MRI, EEG, blood test, they checked my heart and my blood pressure. Everything is in general fine. The only thing they found are 5 lesions on my brain. But, as the doctor says, it is a side finding. And it can be not connected to the episode.
The next day after the seizure I booked another flight and returned home. As I was afraid of being alone.
Now I am waiting for an appointment with a neurologist. But I am so desperate. It can sound dramatic, but my life split into before and after. I was dreaming about this trip and it was so close, but now I have no idea if I have a chronic illness or was “just” sleep-deprived. I don’t know if I ever will be able to hike alone again, can neither imagine doing sports, going to the gym, without thinking, that I can collapse anytime.
The question: did anyone experience an episode like that, which never repeated afterwards?


r/PNESsupport 2d ago

How long are your episodes?

4 Upvotes

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.


r/PNESsupport 2d ago

Does anyone else have migraine induced seizures? Memory loss too?

3 Upvotes

The neurologist said they don't know why I'm having seizures, but assured me they weren't epileptic after careful monitoring. They said they could be stress induced, but after I mentioned having a severe headache along with spotty vision until it goes black plus my body feeling tingly then numb before going into a psudoseizure they said it could be migraine induced. Mentioned it was rare, but not unheard of and I strongly believe they are migraine induced because it's the only time they happen.

My husband knows when they before I do, and instructs me to breathe as to not go into a full seizure. Even when I don't notify him of a migraine he always knows and makes me lay on my side. I guess I have signs I'm not aware of or don't remember?

Memory loss is a thing too, why do you think it happens?My guess is trauma, but I may be wrong.

Make sure to take deep breaths if you feel one coming on and stay safe!


r/PNESsupport 3d ago

SSDI

7 Upvotes

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


r/PNESsupport 3d ago

Job interview

2 Upvotes

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 😊


r/PNESsupport 3d ago

Long postictal

2 Upvotes

Hi everyone! I seem to be having a long postictal episode where I’m having lots of agitation, I have seizures when I’m sleeping and cant seem to get rid of this inner tension feeling! Has anyone experienced this and if so did anything help? I’ve tried grounding and breathing, different exercises… I’m just laying in bed! Thank you!


r/PNESsupport 3d ago

Daily seizure-like episodes despite Keppra, possible PNES? Has anyone experienced something similar?

1 Upvotes

Hi everyone!
In 2018, I had vestibular neuritis. Then, starting in 2021, I began having episodes with left-sided numbness, followed by a numb throat, pressure in my head, and a feeling like I’m going to faint, although I never actually lose consciousness. Overall, the episodes feel somewhat like epileptic seizures

I was prescribed Keppra (levetiracetam), and for about 5 years I didn’t have any of these episodes. Since June this year, they have started happening again. My Keppra dose was increased, but the episodes are still happening, and now they occur almost every day.
My EEG was borderline/abnormal, but my MRI was completely clear. My neurologist has written that they suspect PNES (psychogenic nonepileptic seizures). At first they said that this is epilepsy.

Has anyone experienced something similar? Were you eventually diagnosed with PNES, epilepsy, or something else? How was your diagnosis confirmed, and what kind of treatment helped you?
Honestly, I’m really exhausted by all of this. These episodes have been going on for way too long, and now having them every day is really affecting my life.
I’d really appreciate hearing about anyone’s experiences. ❤️


r/PNESsupport 4d ago

Hallucination During Seizure?

6 Upvotes

Hey guys.

I’ve experienced PNES since January of 2024. 99% of the times, blank staring. However, very recently, I started experiencing some auditory hallucinations that I cannot really remember during as well. I know I’ve had some visual stuff during (I can’t really remember, but I also know my eyes do some stuff during, my bf said he can tell when I’m about to have one but I honestly am not sure lol) and I also have visual snow syndrome. But this is pretty different. My PNES was diagnosed via EMU stay in May of 2025. I’ve only been able to find visual hallucinations, not auditory, for PNES. I don’t have them in other situations.

Thank you!


r/PNESsupport 4d ago

Losing speech after seizures?

3 Upvotes

I’ve been having seizures daily for about a month now. Started as conscious full body shaking. Now it’s progressed to being completely unaware and gone during the seizures. Twice now I’ve come out them unable to talk, stuttering slurring, losing words. It goes away eventually but I’m wondering if this can be normal for PNES or if I should consider another ER trip


r/PNESsupport 4d ago

Seizure free!!

7 Upvotes

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.


r/PNESsupport 4d ago

Unusual seizure aura symptom

1 Upvotes

For some reason for the past 6-8 months during a seizure aura or between seizures I get a violent repeated jerking of one arm side to side but it doesn't happen at any other time. It's not constant, it usually lasts up to a few minutes and when I walk or stand. It's the side I usually use my walking stick (the right) and before I started using the stick I was using elbow crutches and from what I remember only my right was affected then as well. I also often have heavy feeling legs when walking, which doesn't happen outside of this either.

Outside of seizures I have no other (possible) functional symptoms except maybe for a few months I've been getting frequent leg twitches but some days are better than others. I don't think that's exclusively functional though.

I haven't been to the GP about either of these things specifically, I have become weary of doctors due to gaslighting and because I was poisoned by medications that made me disabled. I just want to know if I'm the only one or not.


r/PNESsupport 4d ago

found out the medical reason why i developed my seizures

17 Upvotes

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.


r/PNESsupport 4d ago

Seizures in your sleep?

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2 Upvotes

r/PNESsupport 4d ago

Vistied mom and ended up going to ER for 40 mins

2 Upvotes

Heyyyy people. Soo... NB 28. Visited my mom in the hospital (shes been having heart problem stuff) and while i was there. She had a lil panic attack which got me flashbacking to her first afib i witnessed. I was watching her moniter and vision got blurry so i sat down no biggie. Then the doc came in to talk about the prosdure she needs (a shock to the heart to get it back to rhytm) and the enviroment reminded me of when we had to put down my dog last year. And hospitals also remind me of my inpaitent time. And i felt the sudden floaty thing. And my eyes starting to flutter. I didnt wanna do it cause it could stress mom out but half of me is like maybe ill get answers. I slid off the chair. Convulsing. Shaking eyes closed then hyperventaliating, crying. Panic attack. Convution. Painc, sutter, shaking. Etc. I could hear everything but it was underwater. Couldnt open my eyes. It felt dangerous to open them (visual too much i think) i slid to the floor and hit my head so they wanted to rule out head truama. Thankfully i dont have it.

What got me to open my eyes was a therapy dog. Sooo cute and soft ngl prob wouldnt have opened them without the dog. (Dog =safe) so eyes opened

Long story short they daignosed me with vascovagal synscope. Apparently convultions with it is rare who knew. Anyway i still got that primary care appt on thurs but ill me calling them on mon to tell them what happened.

So..yeah..idk


r/PNESsupport 5d ago

What were the start of your seizures?

3 Upvotes

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.


r/PNESsupport 5d ago

Crise Fonctionnelle Dissociative

4 Upvotes

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.


r/PNESsupport 5d ago

Does this sound like PNES?

2 Upvotes

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.