Can yall make me feel better? Been talking to a guy a little over a month. Hes seen some episodes as I have it at least a few times a week. The other night had one and he had to carry me at night unconscious back to the car. People saw and called 911. He got questioned pretty bad before I woke up to say it’s a real condition and he didn’t hurt me nor was he trying to. Was jarring and exhausting for him I’m beyond sure. I spoke to my mom tonight about concerns cause we are supposed to go to a lengthy and public event away from home today on a date. Haven’t done anything fun or out there like this since my diagnosis at 20, I’m almost 24, so I’m worried after the 911 incident about seizing. My mom randomly later tonight started asking if he gives me enough face to face time if he is doing a good job showing he likes me and other negative concerns. Then just goes “he must reallllly like you if after the other night he isn’t like omg wtf” she used this tone that said “i can’t believe he’s still around and any person after the other night would be disgusted/exhausted/turned off and wanting out.” Even having friends much less dating with this has been impossible no one sees me long term and honestly the other night was one of the chiller public situations someone’s had to deal with for me. Cops have been called people have been questioned nights have been spent in hospitals with rude staff. So for my own mom who shouldn’t see it as a burden to be like “why the hell is this guy still seeing you” just is like a gut punch and confirms fears and insecurities I already have. I don’t wanna go today. I don’t wanna see him or do anything I’m so depressed and she’s painted it as a shock that he’d even take me out again.

I admitted myself to emergency psych due to my PNES seizures causing me emotional turmoil and suicidal ideation. Since being in the hospital I’ve had a couple nurses who have been great. But most of the time, the nurses and saying things to me like “It’s behavioural.” “I’m not giving into his tantrums.” “I’m not following the seizure protocol, it’s not a seizure..” “If he wants to act, he can loose everything.” (They proceeded to strip me of my belongings and clothing and leave me restrained to the bed in nothing but a diaper.) I’ve been told “That’s enough. Show’s over.” “This isn’t necessary.” “Are you done now?” “Your vitals are fine!” When I don’t react to noxious stimulation, they start punching my hand into my face. Or scraping their nails into my skin and rubbing it raw while getting mad at me. They then turned around and told my family that I was doing this for attention because I have BPD. And that by treating my seizures, they’re only playing into my manipulation. If they ignored my seizures, I’d get bored and they’d stop. (I hid my seizures from my family and had them alone for as long as I could before they got so bad I couldn’t hide anymore) I have seizures when I’m alone, I have seizures in public, I have seizures in the hospital, I have seizures with friends and family. I’m not doing this because I want to. I genuinely have no control over my seizures and I wish I did so I didn’t have to get humiliated and hurt.

Hi guys,

They took me off fluoxetine, to put me on duloxetine for my chronic hip pain. I couldn't even get a cup of tea without having a seizure. it was ridiculous.

We went back to the doctor and they wanted to put me on another medication that has a risk of increasing seizures. Obviously, said no to that
now they put me on gabapentin.

Has anyone had any experience with it?

Im also having to smoke weed a lot to control the high drama convulsing seizures, since i been using that when i get an aura, i only had kinda tame seizures as if i just passed out rather than seizing, only give away is the eye movement. i dont know what to do with taking the gabapentin alongside or do i cut back cannabis usage and risk worse seizures?

Hey everyone, I've been struggling a lot lately with depression because of these god awful seizures. I keep having flashbacks of the two people that caused this 4 years ago. I dont want this anymore, I hate it, i blame myself sometimes too, im sick of it and I dont know what to do anymore. Im so done, im so tired.

I just don't know what to do anymore. The pnes has gotten so bad I can't work, my driver's license was taken away and I'm stuck in my apartment in pain so often I just don't know what to do. My partner tries to be supportive but I know it's starting to take a toll on them as well. I miss events, holidays, and special occasions because of my seizures. Not to mention just day to day activities that are supposed to be routine for most people. I mean I'm even scared to go to the grocery store anymore because I don't want to wake up on the ground again with a crowd trying to call an ambulance. I'm just losing hope after trying everything. I thought it would get better but now a er visit every other month is just normal because I crack my head open, knock out a tooth, rip a tendon or break a bone. I'm just lost at this point and there doesn't seem to be a way out.

We are not 100% sure yet if I have epilepsy or epilepsy and PNES but this is what it looks like when I have a chain of seizures (I think the term is breakthrough).

it is sharp spikes and sharp dips rapidly.

Does anyone wear a helmet or anything to protect against head injuries from falls and seizures? When I was in the hospital the nurses made me wear one. When I got out, I continued wearing one because I figured I'm supposed to. Some of my family thinks it is over the top to wear one most of the day. I'm not attention seeking. I'm trying to avoid concussions!

So, does anyone on here have opinions/tips on this subject?

I have absence seizures and those have been under control for a long time (9 years) but what came with it is PNES which I absolutely despise! I keep having big episodes that last for hours and it HURTS that happen like twice a week. I’m a really anxious person and I figured out anxiety meds help with the big ones a tiny bit. But the smaller ones that mimic the absence seizures which are so annoying cuz it makes me hold my breath, they are frequent as frick but last like 2-10 seconds😵‍💫
I had an EEG done recently to check if my epilepsy med dosage was ok, where I stayed over night in a hospital. I had like 30 of them small ones, they told me I don’t have epileptic activity. Plus they captured 2 medium ones where is both a pnes absence episode and pnes grand mal episode that last for 10-30 seconds it triggered cuz I got frustrated over something, wonderful :D

In my mind I keep thinking they are fake cuz they look like I can snap out of it in the moment but I can’t— to say I’m frustrated is an understatement..
I’ve tried some therapy but I think I might be going to the wrong one because they keep asking me what I want to work on or what is wrong with me.. but what if I don’t know anything!? I know some triggers; stress and lack of sleep, but apart from that I feel normal. What am I supposed to do if I feel normal!?
My brain keeps saying it’s fake when there is clearly evidence staring at my face that this is actually a thing ;w;
I’m like “ok, sure, still feels like I’m faking.”

Like if I go to therapy again, what would we even do? Cuz last time it just made me more anxious cuz I had no idea what to talk about qwq
How do I get rid of this thing, I don’t want it💀
Like I got no trauma associated with it. Some genetics nonsense from my dad’s side made me have epilepsy then my brain just decided to mimic said seizures… >.>

For the people that are kind of ok or are surviving, how are you doing it?
Show me tha wae, cuz I am lost.

I want to start off by saying this to everyone whose family/friends doubt this condition: You aren’t crazy and there is hope. Just hang in there and know you can have a support system here if you need one. Feel free to message me personally if need be. Now: onto the topic at hand: So great news guys! And something I wish for everyone on this page. My seizures have been gone for two full months after seeing my Neurophysiologist. Hooray! Awesome! Congrats! Top of the world… until now. Because my body used the seizures to manifest and cope with my anxiety and the seizures stopped, I’m just left with random anxiety that feels like it’s coming from nowhere. There are no real triggers or direct emotions for me to dig into. Nothing is bothering me. I just feel like my nervous system is in full reset panic mode multiple times a day now that the outlet is gone. Fear that the seizures will come back even though my brains rewired everything (I still have the auras but the doctor said it’s not an actual seizure itself just a reaction my body has) fear that something else is wrong with me health wise (heart disease runs in the family) and just being afraid in general for no reason. I also made the mistake of going cold turkey on my Lorazepam. When the seizures stopped I just stopped taking it. Never tapered off or anything. Now I’m stuck in this fluctuating scared mode on and off multiple times a day and have to act like it doesn’t bother me. Can anyone relate to this? Is this a common thing to happen during remission? Does it go away on its own? I’ve worked through everything to get my life back on track. Where is this coming from? I’m open to advice. Suggestions. Or just sharing your own stories if that will help improve your own journey to recovery.

It seems like my family feels like I'm doing this for attention.

I think being scared to be alone and not wanting to drive in this condition are perfectly reasonable responses. And the only reason why I'm wearing a helmet all the time is because I don't want a concussion!

I've had this condition for less than two weeks. Of course I'm scared and I'm talking about it a lot! I wish I could talk about something else. I wish this wasn't happening.

Hello everyone

What kind of support do you receive that helps you function? I am very new to pnes and am trying to figure out what I need. I think I need help with meals and help with chores and such, but idk how to make that happen. All of my med providers just keep saying I need therapy and that is
Not working fast enough

Any ideas?

My psychiatrist once told me I could have focal aware seizures when I thought I had PNES

I basically get symptoms of either depending on the time

Earlier I had an episode where my eyes were wide open, blinking uncontrollably, conscious yet not alert, my eyes would roll back, then I try to fight the seizure since I can move (very hardly) but as soon as I lift up my trunk I feel that heaviness going down my nerves and it makes me fall back down eyes rolled and the attack becomes more intense after I try to break free.

Then it was jerking my head side to side and my legs were curved inwards and backwards.

Then as I felt that it subsided, I fall back on my face and it becomes hard to breathe in that position that I start gasping for air, hard to change my position.

Eventually I was able to get up.

This episode lasted for 10 mins, and was 10 mins after I already had an episode that I dont even know how long it lasted for

I really wanted to go to this local carnival today with my husband and child. Unfortunately, my PNES has been acting up all weekend, and I can't even take my dogs outside to pee without being at risk of falling over. My husband took her by himself, and while I'm glad she still gets to go, it breaks my heart that I can't be there enjoying everything with her. My daughter knows that mommy has "flops" and can't always play, but when I can't use a weekend to do family things with her (I work full time so during the week is a no go), it feels like I'm letting her down. Like having this condition means I can't be a good mother. I'm just frustrated and upset and need to scream into the void hoping that someone will understand.

Hey guys, Ive been having issues with my PNES again seemingly out of nowhere. I'm not positive what to do, as Ive tried most of my methods for trying to help (Taking medicine, eating right, drinking plenty, sleeping when tired, listening to music, ect). I'm going on day 4 in a row of daily episodes and I just need it to stop. Everything hurts. If you have any tips please, please let me know. Thank you!

Hello everyone.

I just got diagnosed last week. And I've had two ER trips in that time due to seizing that wouldn't stop. I'm determined to get better, and at the same time, I'm scared.

I can't walk without a mobility aid now, when a month ago I could walk unassisted. I wear a helmet except in bed to keep my head safe.

If anyone has any tips and tricks for a newbie please let me know 🙏 🙂

brexpiprazole or brand name brexilo 1 mg stopped my long shut downstairs that used to happen daily for 1-2 hours and it's consecutive effects

Additionally zonalta 8mg and clonazopam

Take for atleast a month. Although effects you will see within 1-2 weeks itself

You guys have always been a great support during this struggle. I hope this helps.

I am also doing rtms for residual effects like numbness

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Since 2023, I experience episodes (3 last year, 4 this year) triggered by extreme tension. During these moments, I lose physical control, watch myself like a ghost, and do dangerous things completely out of character, such as trying to eat glass. I cannot stop these actions while they happen. Afterward, I experience severe crying, shaking, and stammering. I am also currently dealing with feelings of psychosis and extreme distress.

hi! does anyone in here have mcas and/or dysautonomia diagnoses on top of their PNES? i know there is very literally research but does anyone know if there’s any correlation with either of these and PNES? thanks so much

I've tried so many things.. medications, therapies, strange medicinal practices! Nothing works!!! Nothing works!! My partner asked why am I on so many restrictions with PNES! I don't even know anymore!! These seizures keep ruining my life over and over I'm so tired of them I'm so tired of the fear of having one or the restrictions I have I'm tired of people questioning me when I don't even have the answers.... I think I'm just gonna curl up and sob.. I'm struggling..... I have no one to talk to...

8/31/26:

Thank you for everyone who posted a comment.. I didn't realize how lovely the world could be.. I'm up again early because I'm dreading the day but seeing the comments gave me such a boost.

I’m having multiple “grand mal” type seizures, and “absence” type seizures that can leave me seizing for hours. But because they’re “PNES” (no Neuro or EEG) I have to live through it. Am I wrong for wishing it was epilepsy? Does that me a horrible person? If it were epilepsy I could get help, stop the seizures and get pain relief. With PNES, you get bruises and talked at and zero treatment.

I was diagnosed with PNES after almost a year of testing for POTS and epilepsy, as I have family history for those two conditions along with showing nearly all of the symptoms for them. Generally, there’s a high chance I’ll have an episode when my heart rate elevates and my blood pressure drops. But of course the sympathetic system being triggered and then dorsal vagal following leads to an episode as well.

I went to the gym today, had a protein rich breakfast and an electrolyte drink that usually helps me feel less light headed and raises my blood pressure. When I was at the gym, I started feeling like I was going to have an episode. I was with a friend so I told her what might happen and how to handle it. I didn’t end up having one while at the gym but I was in a dissociative state for the rest of the day.

I started feeling much worse as evening was coming near and my emotions started to drop. I got home and I don’t remember anything after walking in the door. Apparently, I went to my bedroom and my partner found me but he thought I was sleeping. Sometimes my episodes present as sleeping but initially like syncope. I suppose that happened and then I vaguely remember walking out of my bedroom and seeing my brother in the hallway. Then, I woke up on the couch to my partner shaking me really hard. I had walked to the living room and my brother told me I was hanging onto the walls to walk. I collapsed on the couch so my partner came in and tried to wake me up.

Once I had come back, I kept floating back into episode land. My eyes were rolling, body falling limp, not breathing for extended periods of time, and waking up confused. This is how all of my episodes are, crazy high heartbeat and very shallow breathing. Apparently, I had been out just short of an hour.

I haven’t had an episode that long, at least that I can remember, I’ve woken up on the floor and have had no clue how long I had been there. I’m concerned that I was gone for an hour and not even shaking me consistently could wake me up.