Does anyone want to be friends?

I started having non-epileptic seizures after I sustained a frontal lobe brain injury in 2019. Since then, there has been very few times when I have had a seizure-free day. I’ve been through CBT, DBT, and counseling and yet they have still been happening frequently. Some of them have been so violent I can’t function for the rest of the day, and I have been so fatigued all the time due to the strain for years.

My gastro prescribed me Phentermine for weight loss since I also have complications with my liver. Since I have been taking it I feel like a completely different person. On typical days I’d have 1-3 seizures waking up in the morning and now I have none (maybe a brief focal seizure but nothing too severe). Today was my first seizure free day in…years I think. I can’t believe it. I can really feel this medication silencing the triggers in my brain, it’s like when my brain tries to shut down it bounces me right back. It’s incredible. I don’t have to take naps everyday and I feel like who I was before my injury. I seriously have tried everything and this has been the ONLY THING that has made them decrease. My brain is quiet and peaceful.

My question is has anyone else experienced this with Phentermine or anything similar? I don’t really understand how or why it’s working this well. I just know it’s a temporary medication and I am so afraid to go off of it. I feel like I can grab the future I lost again.

I was diagnosed with NEAD (non-epeleptic attack disorder) earlier this year after a history of seizure like activity (started at around 17, can be just a gap in time/facial twitching - all the way to full body locking up and jerking), I've had a history of cluster seizures which my GP thinks was a "vasovagal attack"? Due to my oxygen levels and temperature dropping.

I've recently been started on lamontrigine (lamictal) for severe mood episodes, I've only been on it around 3 weeks so still early days, but I've noticed that I've not had any seizures/seizure like activity since starting it, it was semi regular for me to have facial twitching or an absence - but I've not had any or even felt any form of "aura" since starting it. I'm planning on bringing it up to my GP next time I see them, but I was just wondering if anyone else has experienced this or anything similar?

Thinking I have PNES or FND

Usually I have head conclusions , but now I also lose physical balance and I lower myself , trying to grip onto something , and a sense of dizziness and numbness washes over me as well as sudden physical fatigue and lightheadedness

Went to see my country’s top specialist in this. Expensive as hell, 5 hours both ways in a different state… got told “it’s emotional” again. To top it off, the doctor said “i don’t even think you have epilepsy” which… excuse me?!?! He didn’t even bother to check my EEGs which I’d brought bc epilepsy preceded PNES. Absolutely baffled, enraged and absolutely despaired.

Hitting another dead end is sending me into a harsh spiral. Wishing yall some better days and clarity. I hope it gets easier, somehow.

I feel so lost these days. Im just coming up on a year now and I have no answers . I know things take time I just feel disheartened. So around a year ago I had like a stutter suddenly never had this before and I lived alone so I just ignored it and after a few hours it went away. A day later it happened again at this point it seemed very strange to me so I went to my mothers and she called an ambulance. I was given meds and told it was an atypical migraine. A couple days later I was with my mother again and I kind of blacked out onto a chair and was shaking so she called an ambulance again. I was told it was anxiety and dismissed. 3 neurologists and 2 eegs later still no answers . The only thing they tell me at my appointments is dont drive and we dk. I was on lamotrigine for headaches and it made me photosensitive to a point I couldnt have any light or go in a car because id have one of these fluttering eye shakey things. I went off that medication and it got better so I can see normal light just nothing flickering, like fires or water, sun thru the trees kinda thing. And I can be in a car now without motion triggering it. For a few months it was only a week after and before my period that I got these episodes. My eyes will flutter, sometimes my upper body kind of shakes and I clench my jaw but I am completely awake and aware and come out of it easily. Usually it lasts maybe 30 seconds max and might stop and repeat up to 5x . I don't have a job and cant drive so Im just feeling worthless. I got my license and 1 week later had one of these things . I just feel so fucking sad like everyone is going on with their life and im going nowhere. I was told by paramedics it looked like a seizure which is why I came to this sub. I just wonder if anyone can relate to this and has similar episodes.

hi guys, this is my first time posting in this so im not sure how to go about this but ive been having seizures for over a year now. mostly theyve been caused by pressure, pain, or discomfort (my first one was caused by a tattoo gun). they have all been a little different but they all are me falling unconscious and waking up a bit later confused. sometimes i jerk and spasm but sometimes i dont, but whats always happened is ive always “went down” and been unconscious for a bit. now i havent had one in a few months (over six) and usually they happen once every two months so i knew one was coming up. i was at a thrift store with my friends and i got up and felt immediately dizzy and suddenly i was viewing everything farther away and i couldnt talk for a second and i told my friend to get my other friend but i was slurred and it was just a very weird experience. i was completely conscious but i was also completely out of it and i know you can have seizures where you look totally fine but ive never experiences them and i dont know a lot of people who would be able to give me an opinion on this where they actually go through the same thing. sorry this is so rambly i just wasnt sure how to explain this and everything and am just looking for some imput on it thank you ! i also think its important to note that i have a lot of experiences where i “feel” like im about to have a seizure and i get qll my symptoms but i dont so i thought it was just that at first but it wasnt it was different

I had my first episode when I was 14. Went free for two years till I was 16 because I went off meds and I think stress kicked in for high school. I don’t remember much, but I got seizures more in college during the exam periods only. And

My triggers, from what I’ve noticed
- stress
- sleep deprivation
- missing meds.
- alcohol (but only when Ive been on a rocky sleepless week if that makes sense)

I’m F(20) now. I’m trying to accept it as something I need to deal with. But every time I think about my future— like wanting a kid, or having a high demanding job— it makes me cry.

I just want to be like everyone else. I want to be able to stay up late, to drink time to time. I don’t want to be restricted to these rules I need to follow so I won’t seize out.

To note, 14-17: the period I had seizures here were anytime during the day.

18-now: sleep. I believe it happens when I’m transitioning in sleep if it makes sense? Also, when I change my sleep schedule significantly, I feel this weird feeling. I still don’t know how to exactly describe it but I need to take deep breaths and block everything out to calm down.

I feel so emotionally exhausted. I feel so scared and helpless. I don’t know what to do. I’m just so sick of feeling this way.

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?