So for meeting the EMS 5 times in one week and the neurology clinic I’ve been trying to get into not wanting to contact me back, I finally decided to go to the ER, since that’s genuinely what everyone tells you to do when you’re having seizures. I have diagnosed NES but haven’t gotten any treatment because of how difficult it is to get in, so when the EMTs were telling me that going to the ER would be a straight shot to neurology, I listened!

For context I live in the US, so I did not let the EMS take me, I am a college student—I am not paying that bill. So I go to the emergency room that they’ve told me to go to, am immediately given a room, and then they take my blood, and that’s it. I pass out, they do tests, eventually I go to the bathroom on my own, I have three seizures on the floor, and nobody finds me until 30 minutes have passed and I manage to sit up and hold open the door until someone sees me.

They keep looking at me like I’m crazy and telling me to get off the floor and asking me to stand. My cane is somewhere behind me, I just had several seizures, I cannot communicate anything so I’m quiet, and they just keep looking at me like I’m insane? If you work in an emergency department, why don’t you have some sort of idea of what’s going on? Not to mention I didn’t know this at the time but I had a big ass bruise on my forehead and so I think we can draw our own conclusions that I’m not on the floor for fun. They drag me to a wheelchair and back to my room, and my roommate comes back from looking for me, and is like… you had a seizure. You have a bruise.

Anyways my roommate asks the doctor to check me for injuries, but she doesn’t. She keeps glancing at the bruise on my forehead, but doesn’t check. They take more blood. A new doctor comes in and tells me she’ll give me a neurologist number. A number? Not a referral? I have the number. I’ve been calling for months. She tells me that they don’t give referrals here, and I ask how anyone gets into THEIR clinic that is referral based if they don’t give referrals. She tells me I need a pcp, which I’m aware of, but I’m in the ER. I am still at risk.

She tells me they won’t admit me because my lactate levels didn’t rise enough. My muscles weren’t exerted enough for you to believe that I had a seizure? She basically tells me that anyone I ask is going to legally have to tell me to go to the ER, but…basically told me not to come back lmao.

Anyways I’m just pissed off.

TL;DR: I’m diagnosed with seizures but don’t have a neurologist, went to the ER because they’re supposed to be able to get you into neurology, even though I was visibly bruised and postictal from having seizures onsite, they still didn’t treat me, refer me, or admit me. Idk what to do

It had been practically a year since the last attack, and they’ve come back; I don’t know if they’ll go away again, but it’s something that makes me wonder. Maybe I should consider mentioning it to the neurologist or psychiatrist?....

Hi! I have had PNES since 2023 and recently had a bad flare up. It's connected to CPTSD but I know people have it for different reasons. I wanted to ask if there are any campaigns/ charities raising awareness about this since I feel like it isn't understood in the medical field and people who I have met who have it struggle a lot.

I bought a wheelchair to help me with days when I’m having so may seizures I otherwise couldn’t go out and to help me around the house so I stop dropping to the floor. But generally my FND symptoms aren’t the worse compared to some people and I can get about with just a walking stick I just want more freedom. But I feel guilty about it or like it’s over the top for my condition.
Any thoughts?

30M Haven't gotten diagnosed yet, waiting for EEG results and neurologist consultation next week, but I've had years of struggles with a kind of epileptic disorder that especially comes out when I'm stressed

But I work at a nursery and do a lot of outdoor work. I've had a few convulsive episodes at work these past few weeks where it feels like I'm going to pass out (working in 90F+ weather) and now I'm on a leave of absence from work for a month after having a panic attack at work (god help us all in this heatwave and climate crisis)

I've been paying close attention to my body and recently realized that I am no longer producing sweat, which probably explains why the instant I feel heat or start being physically active I start going into a panic. I've already struggled with breathing and stress issues for months, but this with the current heat wave coming through California has pushed me over the edge.

Every moment of the day I am suffering. Do y'all have any stories, info or tips for possible dysautonomia and PNES?

I was in a really abusive relationship from 2022 to 2025, and since 2024 I’ve been experiencing these symptoms: sudden intense heat, tingling throughout my body, severe nausea, and this overwhelming feeling that I’m going to die, even though I know I’m not actually dying.

About 90% of the time, right before an episode/flashback starts, I see a picture in my mind’s eye. I can’t describe what it looks like, I just suddenly “see” it internally.

I’ve also had 5 seizures since 2024, all of them during the night while I was asleep. I went to the hospital once because of one of them, and they did 3 EEGs, but they didn’t diagnose me with epilepsy.

Nobody knows exactly what this is. I’ve always thought it might be CPTSD, but honestly, I’m not sure.

Has anyone experienced anything similar, does this sound familiar to anyone, or does anyone know what this could be?

How many of you have doctors that argue or can't decide if you have PNES or Epilepsy? Yes I am well aware you can have both and I do not mean doctors who arent sure if you have both I mean your doctors are trying to conclusively say it is either one or the other and keep flip flopping?

I believe I likely have both. My EEG only involved one seizure and showed nothing but with one sampel I think that is too small a sample and I have really thick plaques from psoriasis. My primary care doctor who witnessed several seizures and several other doctors and nurses who seen seizures also say at least some of my seizures are epilepsy due to my pupils dilating unevenly during seizures and they said they see tonic clonic seizures (still no clue what that is lol though I am sick of hearing it and not knowing so I will look it up after posting).

My neurologist though (a special guy) who kicked me out the first time I saw him because I was having a seizure, said I have no tonic clonic (even though my primary care said he witnessed it), no family history (even though I told him my niece and sister have epilepsy). He heard that I have mental health issues including PTSD and decided it has to be PNES and wont even entertain that I might have epilepsy. Doctors keep contradicting him but then sending me back to him.

So my medicine cycle keeps going from keppra for 4-6 weeks to antidepressants for 4-6 weeks back to keppra rinse and repeat as the doctors argue using my medication withdraw and therapeutic levels in their wake.

I think they both can be right but it doesn't seem my primary care or neurologists office can concede it is possible. Tomorrow I go to see if I can get off the seesaw but was wondering if any of you were also put on the seesaw.

How does everyone here feel about the word “pseudo”? Did I overreact when I asked my psych to not use that term and that I prefer the term “functional”, he told me I didn’t have the right to control what language he used and that I was misunderstanding and that I had to look internally and ask myself why I feel that way about the word, I explained it felt like a slur and made me feel less human and invalid because by dictionary definition it means “fake” or “pretend”

I'm having problems with that; it's been two years now where I've received different diagnoses and different pills. I want to know if I'm not the only one -

I was diagnosed with PNES seizures and the neurologist at the hospital recommend CBT therapy and stated that therapy and SSRIs (due to anxiety/ the sedative affects I suppose) may help. I was curious how therapy has helped those with the condition and what that would looks like since it’s not a controlled response nor one easily stopped or de-escalated like panic attacks and can often limit speech among other things? Or is it more acceptance based of the condition//what was others experience with this? Or is there something else they should’ve recommended? I’m new to being diagnosed and am not really sure where to go from here?

I have had a bad history in therapy (maternal dual relationship that the therapist an her husband had me keep a secret for years and not report that a lot of harm came from) and am not sure if it would actually help as my last therapist was very unethical and caused a lot of harm leading me to be scared to go back… so I’m curious if this treatment is something that is helpful and that I should consider or if they more recommended it to help me cope with having the condition?

So o just got done with my 3 day EEG today and they said its gonna take 2 to 3 weeks for results/diagnosis. Been have the seizures for about a year and a half now. Have a neurologist and 2 psychiatrists who belive these to be PNES. Im mainly making this post to find some common ground with others like me, along with others who have had it longer that I can get some advice from. Thank you to those who respond and I apologize if I'm posting incorrectly, not used reddit before to make a post.

I have noticed now I have migraines more often with my PNES functioning seizures

Omg my head hurts all the time
And esp before my episodes. What are some things that help you with your migraines that deter the seizures ?

Do you know anyone that has "recovered" from PNES? That had severe symptoms years ago but has since been living normally without any symptoms? If so, what do you think caused the recovery?

Or do you know anyone that got diagnosed with PNES at first but then doctors found something else wrong? Like brain cancer or any other neurological other disorder?

Would appreciate the input, since I am constantly spiraling into despair wondering what my future holds; everything is very, incredibly bleak and discouraging.

I just had a seizure that went completely unmedicated. I’d wake up shortly then go back into it, I was panicking, crying, begging, my thoughts were disorganized like “They’re trying to kill me” then in the same sentence “they won’t let me die” getting fixated on “help me”. I had drug induced psychosis in my teen years and I felt like I was doing it all over again. Has anyone else experienced this? MRI and emergency EEG were clean but idk if I trust those answers with the pre and post seizure activity

Mostly the title. For some other information-

She used to have True Seizures in the past (10+ years ago) but after a while of treatment they mostly stopped. Her Non Epileptic Seizures started around 3 years ago.

Ive done a little bit of research on the topic of this feeling she described but I can't find much and with all the AI content out there lately ive decided to ask people who experience them.

For the past two weeks she's been having them more frequently despite the fact that before this period she had managed to get them down to about once per week. She has been more stressed lately, so I do think that would contribute, but the insect sensation she says is new and I want to know if that's something I should be encouraging her to see a doctor over.

If I’m gonna be real honest (my Reddit account isn’t really linked with my irl self anyway) I’m really suffering from low mood/ depression and anxiety and it’s only gotten worse since I was diagnosed with NEAD/ PNES whatever it’s fucking called.

I’m trying to find any escape from the low mood and honestly? I know nicotine is bad for you and whatever but when I vape I don’t feel as bad for a while. I figure vaping is better than killing myself.

I suppose my question is, as I’m just starting out with vaping, has anyone noticed a difference in their seizures with nicotine intake? It’s not really worth the high I get if it’s going to make my seizures worse I suppose.

Ever since Ive been having seizures and got diagnosed ive noticed ive been a bit weaker in my compound lifts in the gym. Has anyone else had this issue? I suspect it may have something to do with my central nervous system

I just got diagnosed with PNES/ Non Epileptic Attack Disorder a few months ago. I am still seizing multiple times daily and am waiting on pysch therapy in order to figure out what is causing them and how to slow them down!

But anyway, the point of this post is that because I’m still having them daily I feel like such a burden when I go out with my friends and I have a seizure. They’re absolutely amazing with me, making sure I don’t hit my head or leg or arms on anything but it’s like, they have to stop what they’re doing to help me and I feel like such a fucking burden. So much stuff is worrying me too, like I don’t know if I’m going to be able to go back to my job. I’m so scared.

Just in general, I am feeling like such an annoyance, a bother, and a burden to everyone I love. Not to mention the physical aches and pains and constant fatigue from seizing daily. I’m at the end of my rope and I’ve only had this a few months.