r/PNESsupport

What is really making me confused about people telling me (not diagnosing me just random doctors suggesting things) my seizures are mental health related is that my no.1 trigger is chronic dizziness I've been having every day for over a year now. I think stress does contribute to it for sure, I've had seizures that are brought on by being overwhelmed but my primary trigger is dizziness.

I don't know why I have it still, I've had a lot of tests. After taking Duloxetine (cymbalta) for migraine it made me lose a lot of my balance and it started the dizziness. I stopped it after 2 weeks when I had my first fall and saw dizziness was a side effect (plus it ironically made my migraines worse). It's still affecting me now. All tests for that came back normal, so my GP thinks it's functional.

I feel light-headed but mostly I feel my head and everything spins and my vision gets blurry.

I struggle to walk because I lost my balance and my head spins a lot and I have fallen a lot of times. I currently use elbow crutches to walk outside full time.

I can be sitting, standing, walking, lying down, outside, at home, relaxed, stressed, happy, etc and I get hit with this dizziness. It's overwhelming.

During my seizure auras my dizziness is overwhelming and I end up stumbling and bumping into things if not falling. I typically come out of absent seizures nearly falling backwards before I manage to catch myself with my crutches.

Hello! The small victories are still worth celebrating and would like to share one of my recent victories :) this last weekend i had a major panic attack and I didnt have a seizure 😄🤩. The small wins 🥰

Let's hear your victories!

Hiya, I've been living with this weird condition since I was about 14 or 15 years old, and I am currently 20. I haven't got a clear diagnosis, I was seeing specialists for years since this began under the suspicion of epilepsy - and the idea of it possibly being PNES was brought up in my last visit with the neurologist. I'm currently trying to get seen again to get closure and the proper help I need to happily live with whatever strange wiring I have in my brain. As I've got older I started to become a regular user of gods green grass. I have talked to my partner about this, but wanted to know if anyone else in this community shares these thoughts?

When I was younger my seizures were way more frequent and intense - full body convulsions that seemed like epilepsy but would last up to half an hour and I would be fully conscious the whole time (it was hell) and they'd occur at least three times a week. Since becoming a regular user, I've noticed that I only really get my seizures, which are far less intense and more of a bodily shut down with intense fear and dissociation, in clusters that come back to bite me in the ass every couple of months or so. I think that a part of this shift in intensity and frequency can be attributed to the devils lettuce? Am I silly for drawing that comparison? I started when I was 18, which is when the shift from suffering almost daily to every couple of months or so started.

When these clusters happen they sort of smoke me one after the other within the span of a few days leaving me in a state of derealisation and uncomfortableness. When this happens I've noticed that even a small amount can sort of bring me back to my 'normal' state - not feeling as disconnected and uncomfortable in my body. I have also never had an attack when the chemical is in my system.

I'm just coming on to here to see if anyone shares this sentiment with me and whether or not this is thing that is known to help? or if i am just drawing correlations from thin air. And if so whether or not going the medicinal route would be worth pursuing. On a side note this is my first time on this subreddit and I already feel so seen and not alone. This is the first time I've found community with my weird ass disorder and seeing threads on this subreddit and the comments on them just warms my heart.

Hi everyone

I had a bad accident that caused me having PTSD. During EMDR therapy for processing the accident I had the weirdest experience - my body starting shaking, I felt like I was going unconscious, my head dropping, etc. but I never actually fully lost consciousness and was able to force myself back awake after like 30 seconds. However, this pattern kept repeating - and was identified as a type of dissociation.

This has been two months now but the symptoms have since kinda gone off the rails - I start to loose my ability to speak or move (I go into freeze mode while staring into the void) for short episosdes in normal conversations, sometimes even randomly dissociate with my head dropping, my body is in a state of constant hyperarousal and most days my body (mostly upper body, hips and neck) are just shaking kinda uncontrollably.

I am always fully oriented and conscious through this, I can open my eyes if I really force myself, I can have a conversation, I can move my arms and legs, I can temporarily suppress the worst part of the convulsions- but I can't make it stop. I comes in waves of 1 minutes and then stops for 1-2 minutes, resumes again, etc.

I have seen a neurologist about this - because the link to the PTBS and dissociation is so clear in my case, they diagnosed me with FND. One doctor referred to these episodes (after I showed them a video of a more severe episode of convulsing that I recorded myself to have proof of all the spooky symptoms that my body is creating) as seizures, but I'm unsure if they really are a seizure? Where do seizures start? Is it "just" shaking/trembling/convulsing?Is it a somatoform dissociation? Are those the same things? I have started reading into all of this, but I feel like the more I read, the less clear it all becomes to me.

I am mostly just very confused as to what on earth is happening with me. I feel like the EMDR therapy for my accident triggered some kind of deep wasp nest somewhere in my body but it's so hidden that I can't consciously access it, but it just keeps constantly and randomly firing.

so i’ve been diagnosed with PNES since December 2025, with my diagnosis re-confirmed after a hospital stay in April of this year due to FND. and while i 100% believe that i have FND & developed this following a concussion, i could never make sense of my PNES diagnosis.

for starters, my seizures were never tied to my emotional state. i’m not having panic attacks or dissociative episodes during, my mental health had improved greatly & i was consistent with my medications and treatment plan at the time my seizures started, there was no stressor event, i have no “major trauma” to speak of (like yea i’m depressed but i’ve been to therapy before & am much more vocal with when i’m going through shit compared to before) so i’m not having flashbacks or distress or anything like that. in fact, my seizures present very much like epileptic seizures. but because i’ve had negative EEGs and a negative MRI, plus my first neurologist had already put the PNES diagnosis into my notes by the time i started declining, no one ever really offered me any kind of solution except for therapy. which, okay.

i’ve done CBT for about a month now, and honestly, all of the cognitive redirection methods haven’t worked for me in preventing a seizure or lessening my symptoms. i could never “think away” an oncoming seizure, or distract my limbs before a full blown seizure started, or think of a happy memory to calm me down bc i’m already calm. finally, after some desperation, my psychiatrist agreed to start me on a titration of lamotrigine and emergency Ativan for my more severe seizures.

now, fast forward to today. all of the smoke detectors went off at the same time in my house — something that has notoriously provoked my seizures & put me into a tonic clonic clusterfuck, as loud noises and being startled are a documented trigger for my seizures that we know of — and for the first time, i did not have a seizure or even an aura/focal seizure. i started lamotrigine a week ago, and i’m still on the low starting dose of 25 as i don’t titrate to 50 for another two weeks. with that being said…is it too early for me to say that the lamotrigine has been effective for my seizures? 🤨

granted, the side effects have been HELL, and i’ve had to switch to taking my dose at night bc the drowsiness is insane, but i haven’t even noticed an increase in my nocturnal seizures either. is one week on a seizure medication enough time to effectively say that it “works”? and if it does work, does this mean that there’s a possibility of my NES being a misdiagnosis? — i don’t wanna get my hopes up obviously, but after having every medical professional refuse to medicate & reiterate that seizure medication will not stop a nonepileptic seizure or benefit me, i feel super confused by how much improvement i’ve had so far.

UPDATE:

so a very helpful comment suggested looking through the sleep data on my apple watch as a way to narrow down my suspected sleep seizures. andddddd yea……i’m seizing during my sleep lmao now i’m freaking out bc i may genuinely have epilepsy i guess???? (jk it’s late i can’t figure it out but my baseline BPM is between 50-90 bc POTS and i literally have a June 2nd reading with a BPM of 129 in my sleep!!!!!!!) but since i don’t have an established neurologist bc my local neuro told me not to see them anymore after diagnosing me with PNES, neuro team from my hospital stay is an hour away & kinda passive with calling me back rn, i don’t know where to go with this information so 🥲

Hi everyone! I have been having a stuporing feeling, where my body is stiff and heavy (fatigued) .. then I just zone out when standing, has anyone experienced this? And if so any help would be greatly appreciated… as this is also making me very fearful!! Thank you!!!!!

Hi there! I am wondering if there is a connection between gut health and PNES. I was listening to life kit a podcast and the episode was called “tired of being tired?” So I thought what if I could test it myself!

I created a chart to document my sleep patterns, episodes, meals, and activity levels.

I’m going to try to control sleep and activity levels so that I can try to get a clearer picture of how gut health plays into it.

I will mainly drink water and eat less sugars and processed foods. I will also aim to increase fiber and fermented foods in effort to improve my gut health.

I will return with my findings, but also if anyone else would like to give it a try and share their experiences I’m all ears!

Hi everyone,

I’m writing on behalf of my sister, who was recently diagnosed with Functional Neurological Disorder. She is also experiencing Psychogenic Nonepileptic Seizures, which are impacting her movement and speech. Her medical team has recommended Cognitive Behavioral Therapy as part of her treatment plan, and we’re actively looking for a therapist with experience treating FND and/or PNES.

She also has a history of anxiety, depression, ADHD, and possible PTSD, so we’re hoping to find someone who understands the overlap between trauma, mental health, and neurological symptoms.

A few details:
• Insurance: Anthem Blue Cross Blue Shield PPO
• Location: Maine (telehealth preferred, at least to start — open to anyone licensed in Maine)
• Availability: Fairly open/flexible

If anyone has recommendations for therapists licensed in Maine, we would be incredibly grateful.

We’re still learning how to navigate all of this, so any resources, personal experiences, or guidance would mean a lot.

Thank you so much!

I have epilepsy and was just told I also have FND. I’m confused though because the FND seizures occurred while I was on a ventilator and propofal drip. I was told I needed CBT. How is this trauma induced and what would I even discuss during CBT? “Hi, I was unconscious and my body decided to seize. Let’s dive into this.”

I'm still technically being investigated but neurology reckons I have functional seizures and my local hospital diagnosed me with NEAD. I had an EEG in December which was normal and I've had many vbgs done during seizures which were normal.

I think I started getting what are being called non epileptic seizures around 10 months to a year - year and a half ago. I've been having multiple mental health issues for most of my life. I also have autism, ADHD and learning difficulties. My childhood was very traumatic and I went through some pretty traumatic experiences such as an abusive relationship a few years ago including a rape. Many mental health professionals call me complex and many say I'm too complex for them to deal with. I've been turned down by many people for this reason.

I've been getting mental health support in some way since I was 17. I'm now 25. I've already done a year of CBT, done DBT, counselling many times, attended multiple courses on trauma and panic attacks/anxiety (I have trauma induced panic disorder since the age of 12). Currently I've been doing stabilisation work because I've attempted suicide multiple times in the past year. That's been going well and I've been feeling good on some days. I've avoided attempting since late march. I've also tried many different antidepressants. I also struggle to understand certain concepts because of autism and some people don't understand this.

I've also had a lot of bad experiences getting help because some people don't understand my autism or they didn't take my problems seriously or were just plain rude/disrespectful or ignorant.

Even when I am not stressed, anxious or overwhelmed at all I still get seizures. The main trigger I have is chronic dizziness which I've been having for over a year after I took a migraine medication/antidepressant for 2 weeks which fucked me up and I haven't been the same since. I have some other ones like change of light, temperature, stress, crowds and sometimes they're just random. That's why I'm not fully convinced it's a mental health thing.

They've not found the cause of my dizziness, I've had multiple tests and everything has come back normal. Clear CTs, clear MRI, heart, bloods, etc all fine. Balance tests also fine. The headache clinic doesn't think it's to do with my existing chronic migraines (I've been having them everyday constantly since I was 13). It seems likely neurology will say I have FND.

In January this year the local hospital started me on 25mg Topiramate for my dizziness after a hospital admission where I had a fall (I've had multiple and I use crutches to walk because I've lost a lot of my balance) which I went off of in February-ish because it wasn't effective. In March or April, I started back on 25mg to try and reduce my seizures. After 2 weeks my GP agreed to increase it to 50mg and I've been on that for a month now. It's made no difference. I'm seeing my GP soon and I plan on asking for another increase.

My GP wanted to increase my antidepressants to see if that would reduce my seizures. I've been on Citalopram not long before I started having tonic clinics in August 2025 and I already increased it in late January and then my seizures restarted after and now they're worse than ever so I said no because I didn't think it would make any difference. Plus I have some unrelated medical issues which I've read Citalopram would have potentially exacerbated.

The Citalopram is good at radically reducing my panic attacks. I still often get anxious and depressed. However it's more manageable. I have ways to cope with panic attacks.

I don't know where this leads me. I have seizures nearly every day and have been since February this year. From late October 2025 until February I was seizure free but was still very stressed then and I wasn't getting any support mentally then as well so I can't understand that. After all these years I'm still scared of people and struggle with coping and my seizures have only made that worse. My mental health also took a major nose dive when my mum died of cancer in 2022 when I was 21.

I often struggle to think or remember properly even when I'm not having a seizure and even walking to the corner shop is a struggle. I just want to be a normal 25 year old. I have seizures both in and outside the flat and I've not been successful in getting support in getting assistance with going out to keep me safe either. I have no one in my life who can do it either.

Author's note: Hi, this is Jess.

I wrote this a night I couldn't sleep, imagining PNES from an external perspective; a supportive friend. I wanted to feel the love from someone's side and imagine how I look to them.. as I often feel like I fake it all for attention.

I'm lucky to have a mum that showed me how that a supportive and not judging hand can look, she's my hero and a person that gave me a lot of strength.

My English is not perfect, if you want to point out the mistakes and its corrections, do it. I will correct the post as more people can read it more smoothly and understand it flawlessly. ❤️

To PNES survivers, I love you all. This scene is a celebration of our renewed strength every morning.. to go through the motions of the day being present in our body and choosing courage every day and how that impacts and impresses the people all around us.

Marisa's pov; 1st June 2026, 18:59, Minnesota

I came back from work at 18:59 unaware of anything; just a little bit tired and a little bit hungry.. to a gruesome scene. I knew one day I'd catch Jenny in one of her 'episodes' but it still caught me off guard.

She was on the floor, both on her hands and knees, her head low, and was gasping for air. "Jenny!" I called out and rushed to her. In a few seconds I threw my purse in a corner and sat on the floor next to her and, almost as an instinct, tried to lift her head a bit. Her lips moved, no voice coming out but her lips formed letters as if to pronounce my name. I could read 'Marisa' if wanted. Her eyes were slightly shut, opening only on occasion. Her face was pale; except for her cheeks that were tinted red...but knowing her, they were the palest they've ever been.

"Jenny, tell me what you need" I told her reassuringly, placing my hand kindly on her back. She hiccuped but didn't manage to get any sound out. I realised I had to try another approach. "Jenny, it's fine. I'm here. I'll take care of you."

I felt her relaxing a bit under my touch but not enough to make a difference. "Come" I told her and redirected her towards a wall as she instructed me beforehand. I almost wanted to ask her why she was in the middle of the room but I know that when her mind starts to spiral, common sense just won't work in her favour. Grunting and with a lot of difficulty and my help, Jenny dragged her legs over the shiny silver tiles and repositioned herself in a safer way. She placed her back on the wall, sighed and closed her eyes again.

"Why were you on the floor?" I couldn't help but ask. "Trying to get your medicine?" Jenny opened her left eye only slightly and nodded imperceptibly. A thing, if I wasn't trained to read her face that well, I would have missed.

I sat next to her in silence. I don't how much time passed but it seemed an eternity. I watched her face distort in pain, her legs be in a very twisted position, looking almost like the ones of a mannequin, unalive. Without wanting to, I questioned the purpose of this disorder. Unknown... Often misunderstood. Almost like her whole life was living in a shadow.

I put my arm around her and rubbed her shoulder. At first she seemed scared but then leaned onto me. I guess she knew or trusted I didn't mean any harm. And honestly, she wouldn't have had any strength to fight back. Which is the whole point of the situation.

As soon as she felt a little better I asked her to list her symptoms. I grabbed her diary of symptoms she always had within reach from the coffee table and a pen from the desk and started to write down what she said. It seemed very hard for her to recall her memory; she squinted her eyes and frowned her forehead, her posture was slumped and her words were sluggish and her voice weak. If I didn't know about her PNES, I would have assumed she took some weed. I was surprised at how, even knowing her condition, I had to remind myself she wasn't in any danger physically, especially when she clutched her chest and seemed to breathe with difficulty.

I was ready to call 911 if anything got out of hand and I gave Jenny a side look to check on her status. She seemed nauseated and I caught a glimpse of the smart watch on her wrist lighting up: 118 bpm. Seemed about right considering what Jenny told me beforehand, when we were deciding to share the room. She explained to me in much detail about what was normal and what to look out for. And when to call for help if things went out of hand. Thanks to that I wasn't panicking.

Jenny's voice took me back to the present. "Marisa" She said out of breath in a whole breath. Her voice was heartbreakingly sad: "Am I an imposter?"

This question caught me off guard and, although I knew what she meant, I asked her: "What do you mean, love?" In the corner of her eyes tears started to form and, on Jenny's cheeks, they started to roll down. "Am I just doing it for attention...?" Her voice was just a breath and full of pain and despair.

"No, no" I said softly and sat in front of her. Her brown sweet eyes were full of tears now, pain was seeping out of them but they were blank and extremely tired at the same time. "It's not your fault. You're sick. Really."

"It's okay." I repeated when she didn't answer. She swallowed with difficulty. It took her some time to answer but I waited patiently for her to find her words, knowing it was extremely difficult for her. She seemed so fragile and I couldn't help but feel a stab in my stomach. She was the sweetest roommate and person I've ever met and I couldn't bear seeing her like this. It was unfair. I counted my blessings.. I was twenty-four, I felt twenty-four and could enjoy good health (besides some debilitating migraines once every two months). Jenny was twenty-six yet the two years gap seemed dozens of years to me when she was sick. I remember when Jenny told me she feels like a ninety year old lady when it happens: Her body gets wobbly and she clutches objects or walls to stand upright.

She had smiled faintly as she said it. She was accepting of her fate. But in her eyes I could see a glimpse.. a faint light of sadness. She didn't want to be sick. I didn't wish it for her, either.

I couldn't help but feel bad.

"I feel like I do ..... This for .... Att- attention." She said in a whole breath and gasped for air. "No.. no" I started to rebuke instantly and more tears streamed down her face. Unknowningly, I reached for her face and wiped them away. Empathy took control of my body and was directing it the best I could in her favour. "I am ... Cursed." She got out.

I looked at her teary, not knowing what to say. She saw my gaze and smiled faintly. "Th-thanks." She managed to say, voice shaking, eyes full of love and emotion before slopping behind against the wall and falling in a sleep like state. I know she thanked me for all... for being there, for support and for being a real friend. She told me often she was grateful I didn't leave her. At first I was confused, because it was common decency. 'Was she saying I look like a cold person?' I went to the lengths to think at first. But then, after knowing her for a bit, it was easy to recognise where the gratitudine was coming from... Understanding, support, not being alone: were all things she didn't have before.. for more than half her life.

She faced it all alone.

I don't know how she did it. Although it makes sense how now it's unbearable to face it on her own. She can't do it alone anymore. Her strength has a limit. She's a beautiful but human and fragile goddess.

I sighed and tried to gain composure, doing my best to dry my eyes while not letting the thoughts get me far. It was horrible. Living those moment alongside Jenny was emotionally exhausting and raging at times. The frustration and unfairness of not having a cure, and only psychotherapy being a slow help was soul crushing.

I watched her, breathing in and out, her chest rising and falling, with her head falling back and resting on the wall. It was an hour already. I checked my watch. Jenny said, they usually wouldn't last more.

I stiffled a sigh, out of my tiredness catching me up after the adrenaline rush, as I didn't want to bother Jenny. She would have pressured me to go to sleep and not stay with her.

It was hard staying with her. But I wouldn't have swapped it for anything else. Jenny was the hero giving me strength. If she did face life with dignity and a smile, I could, too.

She was the one that gave me advice and courage in my darkest days. And I was going to stay by her side, learning more about the disease through research and trying to be more helpful.

I was not going to leave her, even if this situation was going to take years out of her and my life. We were in this together. And, as I see it, that's all Jenny really needed. ❤️

I was in the ER yesterday because my neurologist is weening me off my Lacosamide. It had helped me, brought my seizure frequency and severity down, but they found no evidence of epilepsy during my two eeg. One was an hour long eeg, and the other was a 24 hour video eeg where I had a seizure induced by coffee (with several nurses approval).

Weening off the meds has spiked my seizures to become near daily, and I had one that just would not stop and went on for around an hour. The right side of my body kept tensing, my eyes would go back and forth, but my right eyes was closed and scrunched/twitching while my left eye was open. My chest muscles kept tensing, which made my breathing rapid and shallow. And sometimes tense so hard that I couldn't breathe, or my body just forgot how to breathe in general. I was conscious the whole time. Since getting off the Lacosamide, I've been having a lot more auditory and visual hallucinations, and the constant static vision and after-images have become worse.

When my boyfriend got me to the hospital, they injected me with Ativan (Lorazepam) and my seizure almost immediately stopped. I had heard that type of medication isn't really effective for PNES, so I am confused. Is it effective for stopping PNES or not?

I recently decided that I will be doing a PHP, partial hospitalization program to treat all of my underlying mental health such as a mood disorder and cptsd as i have had an increase in episodes and a decrease in mental stability. Basically will be in many different types of therapies from M-F from 9-5. Has anyone tried this to help with PNES? If so, I would love to hear your experience.

I recently was weened off my lacosamide, and ever since, I have been waking up in the middle of the night, terrified. I will suddenly wake up, scared, thinking I am hearing or seeing something that isn't there. I might head foot steps, see someone (like my boyfriend), and hear voices. I can move around and stuff, usually too scared to do so. I will also be aware enough to ask questions, but I'm typically really out of it.

Such as, one time, I thought I had been bitten in the neck, and thought the person I was hallucinating had done it, so I kept asking them if they did it. But when they wouldn't respond, I realized they might not be real and started to calm down a bit but felt delirious.

Is this something that can be attributed to PNES? My seizures have increased ten fold after having no medication, so I figured maybe this was a form of nocturnal seizure/aura? I do hallucinate with my regular seizures.

This is my first post on here, as I’ve only recently found out about this subreddit. I was diagnosed with PNES about a month ago after having episodes on and off for a couple of years. It’s been quite a struggle as my episodes have only increased as the days go past (stress and school and other things). I guess I’ve wrote all this just to ask for advice. I’m fairly new to all this, and I’m not really sure how to move forward, I guess. Is there anything that you have done to make dealing with this more tolerable, or any tips that might lessen the episodes? I’ll take any advice you have, genuinely. If you’ve read this far, thank you so much. I very much appreciate it.

P.S. I’ve tried using soothing techniques (I have this app called Finch that helps a lot with breathing exercises and a space to vent out all my frustrations) and using essential oils to smell which does help a little but not much. The essential oils give me really bad migraines and the breathing techniques rarely help to actually calm me down.

This has only started to occur a little while ago (like maybe a week or two) but sometimes when I have really bad episode day my body shuts down. My tongue is too heavy in my mouth and I can’t speak, I get really dizzy and nauseated, and it’s really hard to do normal things like walk and use my hands sometimes. It’s really infuriating and kind of scary, hence why I’m posting about it. Does anyone else experience this?

During the daytime I am so sick and auras constantly but the second it turns night it’s like I’m a normal person with no issues.

No matter the stimulation either, I had a wedding today and all day I was extremely sick and genuinely had to lay down outside but the second it turned night it’s like a switch flipped and I was dancing and playing around

Hello everyone, I was just diagnosed with PNES this past week and have been having the seizures since the end of January up to 4-5 times a day. I am new to all of this.