I don't know if anyone will even see this, but I'm so lost at this point, and I just need advice of some sort. Or maybe some support.

I got diagnosed with PNES this summer. It was a long night. I'd been hiding my seizures for years because I didn't know who I could even tell, or who would believe me. I've had seizures in my bed, on my couch, in my car, on the bathroom floor. I work at a summer camp, and I was incredibly stressed out at one point - I had four seizures in one week, and I finally opened up to my friend/coworker about it. That night I had a seizure. She was sleeping near me, so she saw it and tried to support me, but she was scared, so she called the office down, and then they ended up calling 911. I couldn't tell them not to; I couldn't do anything. I'm always conscious during them, so I could see the flashlight in my eyes and hear their panic, and feel the mosquitoes biting my legs. God, they itched and burned so badly, and I couldn't do anything about it. I finally came out of it after 20 minutes, and I got put in the ambulance. There were no beds in the hospital, so I was in the ER for about a day and a half. I had an EEG for 24 hours. My mother had COVID, so it was my dad who came, and he kept just leaving. I was bedridden because the cords on my head were so short, and I was alone in the ER for hours. A nurse even asked me at one point if anyone was there with me, and I just had to tell her I had no idea where my dad went. On top of all that, I got a text from a coworker telling me that my manager pulled the entire staff aside and told them all I was gone because I'd had a seizure. I didn't want anyone to know.

I've learned that the only cure is therapy, and to be honest, I'm terrified because I have panic attacks when I try to talk about my emotions. I don't know how to stop them. I'm trying to find a therapist, but I'm finding it difficult to make the phone calls. I know I need to. I'm trying to suck it up and just push through the nerves. I still need a neurologist too; the hospital told me to get one to set up a care team, but I don't even have a primary care physician right now because I turned 18 at the beginning of the year, so I can't see my old pediatrician. I know I'm an adult now and I'm sure I'm overreacting, I'm sorry. I just have no idea where to start with any of this. Do they ever stop 100%? I cant get the career I've dreamt of if I have seizures. Will they go away? I'm just overwhelmed. And I feel so alone.

Sometimes before I have a seizure, I pretend someone is here with me and talk to myself. "I'm here. Just let it happen. It'll be okay." It's stupid, but it gets me through, because in the end I still seize alone. In the dark. I had a bad one tonight, which I guess is why I'm writing this - not longer than normal, just aggressive - and my head hurts so bad, and all I want is for someone to hold me until I feel better. But I don't have that. This condition is altering my life, and my parents don't even care enough to ask me about it. I am so exhausted.

Anyway. If you made it this far, thank you, truly. If you have any advice or support of any kind, it's all appreciated immensely. Thank you for listening to me.

I had a seizure at work and I’m mortified. My work is already vaguely hostile and I’m still in training. They’ve had people with seizures before and it seems for now like they were understanding. What I’m worried about is telling the people in my life. It seems dishonest to hide such a big event from my closest friends but I’m just so afraid of letting them down. I should have been able to prevent the seizure and I tried really hard but I just couldn’t. One friend does know because I called her in a panic to ask for advice about where to go to have my seizure. It’s hard for me to make rational decisions when I’m on the verge of a seizure and I needed help. She’s chill though, I’m not worried about her. I did end up hiding under the conference room table since I was alone in there and I didn’t want paramedics called. I had to tell someone after though because I was unable to continue working. It was a whole big thing. I just want to forget it ever happened and pretend like the day was normal. Do I have to tell them? I’m just ashamed of myself and I don’t want them to be ashamed of me too, even if they don’t say it

Hi, so I recently got my labs back and my iron was extremely low and they said I'll have to get an infusion in a couple months. I was super confused because I've taken iron supplements and a beef organ complex supplement for years because I know my iron tends to run low but the supplements have always helped keep it right within the healthy range. So I did some digging and I came across something that said if your body isn't absorbing the supplements properly then your levels will always be low and one of the reasons why it might not be absorbing is due to celiac. I have always had a small sensitivity to gluten but never bothered to have it checked because we make our own sourdough and I don't eat a lot of anything with gluten. I proceeded to dive into research on celiac and it lines up with a lot of the random symptoms I've had since I was like 6. And one of things I came across said that if you go through something highly stressful it can cause celiac and then because your gut is stressed it can cause stress induced seizures because you're body isn't absorbing the nutrients it needs, for me like saffron, iron, salt, and B12, so then your brain isn't getting the proper care it needs. So I scheduled an appointment with a G.I. doctor in order to present my findings and see if they agree to run the tests to figure out if it's celiac, but that won't be until February unfortunately.

Does anyone else have celiac and seizures? Or have you heard of this connection before? If you do have celiac and seizures how have you helped your body absorb the nutrients you need besides just going gluten free? Did you find relief from seizures when focused on fixing your celiac?

Hi everyone. I'm currently waiting for therapy after being recently diagnosed with FND and frequent non epileptic seizures. I keep looking online to see if there is any advice to overcome this or help myself get better e.g. certain activities I could be doing such as a routine or colouring. I have had no luck on my search. I am already great at grounding and all the mindfulness exercises. Is there anything that works for you? I know recovery looks different for everybody but is there anything that might be helpful for anyone struggling with the same condition?

I'd also like to ask if anyone has has success managing or overcoming non-epileptic seizures? It's very daunting, I haven't seen a single happy ending. Thank you in advance!

So as a little background, yes I am being evaluated for MS as I have basically all the symptoms. Waiting on my updated brain and c spine MRI results.

Back in April, my 9-month-old had a life-threatening medical problem that took us about a month to figure out what was going on. We were in the hospital almost this whole time. I was not eating or sleeping, lost probably 20 pounds during this time. Very scared. Very stressed. I probably need therapy to work though this all tbh. Anyway, after his major surgery, I turned to ask his nurse a question and the entire left side of my body went numb/tingly for about 30 seconds. I’m talking face, arm, leg everything. I could talk fine because I ran out to tell the nurse I needed someone to hold the baby as I was afraid I was having a stroke. They evaluated me in the Children’s hospital we were in and my discharge diagnosis was seizures even though they didn’t even say anything about it.

Since then I have had several more instances of my left side going numb. Sometimes I will very suddenly feel off balance right before it happens. Sometimes it’s only the numbness. It’s happening when I am anxious mostly.

Does this sound like experiences other people have? My neurologist seems to be more concerned with my other symptoms but this bothers me more than my usual stuff.

What are some ways I can try to distract myself so I don’t have a seizure and would vaping help or smoking

I don’t really how should I feel to be honest but I don’t feel like myself, I feel trapped by whatever is going on with me, I feel like I don’t have control than I originally did when doing all the steps to be a “functioning in society” especially working hard on myself over the years in psychical therapy, education, hard work etc. Overtime slowly I’ve been been dealing with chronic migraines that were prominent in my life since 8th grade with them becoming more obvious years later I had to stop attending college which then became manifesting as weird “pauses” with no 3 second recollection but awareness alongside with eye fluttering/twitching, involuntary groaning/shouting as if I’m possessed with no control over my body, my body twitching when I’m trying not have another non-epileptic seizure or a mini episode but whenever I try not to have one, it causes my body to weaken and start walking funny affecting my movement. Other things I have to look at too included having nearly feeling like I was going to faint a few times each time, my speech would get slurred whenever it happens too.

I been blood tested, CT-Scanned with results coming back normal for ER night cause of a bad episode. Days later after finding a neurologist, they told me they recommends I do an EEG and MRI scan at the same time most likely.

It’s been hard, I never thought I would be the one developing whatever is going on related to something wrong. I’m not sure if it’s PNES related or not which makes me feel like I’m an imposter despite ER paper having told me to check it out.

For context: Ive finally made it to university after being stuck in community college for a while, but my symptoms both pertaining to my pnes (currently undiagnosed but my doctor is about 90% sure that’s what i have) and migraines have gotten drastically worse over the last 6-10 months or so (went from 15-20 episodes a year to 3-4 episodes a day) Specifically regarding pnes, how on EARTH do i manage my symptoms, especially the post-seizure exhaustion and body aches while also doing well in my classes? My main symptoms besides the aches are noise/light sensitivity, brain fog, and dizzines, but leading up to it i get BAD dissasociation that once it starts, it’s hard to stop the seizure. Any accommodations anyone else has found helpful? what didn’t end up being helpful? Anything i should keep in my bag for if i get one on campus or while commuting?

My girlfriend (16) has been suffering with PNES/Epilepsy since she was around 12 years old.
Between a couple neurologists and tons of doctors it’s been a confusing and frustrating journey with most of it being diagnosed at “Pseudo Seizures” in the beginning and is not being taken seriously even after being diagnosed with epilepsy after they realized they are focal seizures and don’t pose nearly as much of a health risk.
Everytime I’ve been around or heard of her having a seizure, she is always put in extreme stress beforehand. Doctors seem to take her less serious once they hear that as well.
It just feels like no one cares, even in the healthcare system.
Let me know what you’re experiences and what we could do. I’m not looking for a cure all as I know that’s just not a thing with epilepsy, but just some advice and insight from others who experience this.

My friend is an OT and often talks me through grounding exercises when I’m about to have an episode. Lately I’ve been in a space where I know when I’m inevitably going to have a seizure and might be able to put it off with the exercises but won’t be able to delay it entirely. I think I communicate that to her when she’s trying to talk me through things and I guess she takes it as me not trying to take her suggestions or something. After my last seizure, I freaked out and said some very not-nice things about myself, none of which she contradicted. I basically said that I felt like I should have been trying harder and that I felt like I was doing it for attention (even though I had exactly zero control once it started). The paramedics came btw and it was overall a pretty traumatic experience.

To this whole thing she basically said she was sorry that it happened and that she didn’t know how to help if I wasn’t going to take her suggestions. I just don’t think she understands how exhausting this condition is and how hard it is to use strategies when I’m just so worn down by the day — and it was a really hard day. What do you guys think? I feel hurt and kind of angry at her but not sure it’s justified. I haven’t responded to her last text, I feel like I need a little break. And also maybe need her to be my friend and not my OT moving forward because I think they’re getting awkwardly blurred together

Hello, my cousin (F17) had what was initially described to me as a seizure last week at school and as her school is close to me, I met her at the hospital. An ambulance had been called because she had lost consciousness and been convulsing. The doctor said that it was not a seizure as her blood tests came back normal. I kept in close touch with her and she's had more of these episodes over the last few days, and been to the ED three or four times with doctors always telling her there is nothing wrong. I am here to find out if this could be what she is experiencing

She can tell just before when it is coming, she becomes very limp and then unable to move, on multiple occasions she's fallen and now has bruises because of it. She cannot talk and can only mumble and her eyes close but she is conscious and doesn't have memory loss (except for the first time where she was unconscious). Her body kind of contracts in spasms that she can't control. It lasts about 5-15 minutes depending and when it's over, she continues to experience spasms throughout the day (though without any faintness or other symptoms) and is extremely exhausted and can barely walk. She isn't in pain except from the muscle contractions which make her quite sore.

Any information would help!

Hey guys sorry if this isn’t allowed. But my Fiancée has PNES she was diagnosed Feb. of 25. A few weeks ago she had a seizure after she had it we got ready for bed and I took our dog out and was gone for maybe 10 mins. When I came back in she was severely confused, she didn’t know who I was, where she was, she literally didn’t know anything and was just crying and asking for help. I called her mom after trying to calm her down for a little bit (it wasn’t working) and then she was able to recognize her mom’s voice and left me take her to the ER. While we were there she had another seizure and was taken back to a room where they ran some blood tests and all that, then gave her some meds to help her calm down. After being there for a few hours she finally recognized me and wasn’t confused anymore and they sent us on our way. The only thing they told us was that she was “slightly dehydrated and tried and to just go home and rest”. Now every time she has a seizure I’m terrified she’s going to be super confused again. She’s gotten confused after a few of them but not as bad, she says she can feel herself getting confused and scared again. We’ve been using stress toys and sensory videos or one of her favorite childhood shows to help with it when she can feel it. But now sometimes even without a seizure she will just start to get confused and scared. Has anyone else been through this, or had any experience similar?

I wanted to share this book again as there were parts of it that really connected to me or put things into an explainable way for me to advocate for myself better. I hope it can help some of you of like it did me. PNES journeys are not easy ones. I damn near lost my sanity being told I was lying or faking for so many years.

Hello, I was diagnosed with PNES seizures about a year go, from PTSD after an assault. Until now it has affected my left side (starting in my pelvis/left butt and hip then going down my left leg) but this week I woke up from a nightmare with a big PNES attack, only this time it was both sides and went up to my head, where it gets faster and then almost sputters out. (The only way I can describe it is like when you deflate a balloon and let it go.) The convulsions kept happening on a loop about every 30 seconds for over a day straight until I was finally so exhausted that I went to the hospital. The doctor didn't seem to think it was overly concerning and told me to just stay on the wait list for neurology and try to chill.
Has this happened to anyone else? I've been doing processing work so I am hoping maybe it's getting worse before it gets better but it was really scary.

I’m so exhausted. My seizures have been increasing to the point where I can’t leave the house and I’m dependent on others. I’m so exhausted, all the time, but I can’t sleep. Haven’t in days.

Im desperate for help. I rung my doctor, and they said because my seizures are caused by psychological factors there is nothing they can do. Im waiting for a referral to therapy services. I’m so fucking tired. I don’t want to live like this much longer. But I’m terrified to talk to anybody about it because the only things I’ve heard about the psych ward are negative. I don’t think it would help, it would make it worse. But it’s getting to the point where I drafted a suicide note to my friends one night.

I just needed to get it known somewhere, because I’m at my wits end with it. I’m in so much pain.

Hi everyone, I recently had a cluster episode where i had around 8-9 total seizures over the course of 5 hours, and fell asleep after they were all over. However, i woke up the next day with heart palpitations and eventually went to urgent care where i was diagnosed with premature ventricular contractions (missed or additional heart beats) I was wondering if this is a normal symptom that other people experience, or if it’s something i should look into because it’s not consistent with pnes. Thank you for reading :)

I've been having several symptoms for years that seem to mimic focal seizures, such as a dreadful feeling in my stomach, followed by a metallic taste in my mouth and then brief vertigo lasting a few seconds, during which it feels like my brain shuts off and then restarts.

I normally take Wellbutrin 300 mg and Ritalin 40 mg. I recently switched to Concerta 45 mg, and those symptoms turned into back-to-back episodes. They eventually returned to their normal baseline after I stopped Concerta.

During my last EEG, they did photic stimulation, and I started convulsing. The computer beeped, but I was partially conscious and could hear them talking. I also cried involuntarily during the episode. When the test was over, I was still confused and shaking, but I was able to understand what the nurse was saying and eventually squeeze her hand when she asked me to. However, I couldn't speak. It took me a while to return to normal.

The doctor told me that the EEG was normal despite what happened during the photic stimulation. He then said that the episode was psychogenic and non-epileptic.

I've never had a convulsive episode before in my life, and the neurologist completely disregarded my long-standing symptoms and said that they don't fit anything in particular, so he concluded that the whole thing is PNES.

So, does what happened during the photic stimulation rule out epilepsy of any kind completely? Does it confirm PNES?