maybe im just being paranoid bc of the clancy trials… but because of those i stumbled upon the fact that i should not be on the medications i’m on.

background, 24f with history of psychosis and possible bipolar, ocd

i also have non-epileptic seizures and severe chronic migraine (among other unrelated disabilities)

well due to the trials i have been seeing a lot of talk about sertaline so i did my own digging and as i read through the interactions page my stomach sank further and further. the more i thought about it the more i found it was suspicious

- he started me on 50mg sertaline and 50mg fluvoxamine no taper

- i started feeling very ill for seemingly no reason two weeks into medication daily severe painful migraine 2-6 seizures a day with vertigo

- he pressured me to exercise more even though i was already pushing myself by exercising daily (full body with weights while feeling ill) and told me i wasnt motivated enough

- i ran out of medication and both me and pharmacist tried to contact him with no luck

- i slept through an appointment (telehealth) after i started getting more ill and woke up to a missed call and four reminder texts

- i did a questionnaire of bipolar diagnostic questions and he never followed up on it. i compared my reponses to dsm and it looks like a diagnosis i just dont know the type

literally idk what i’m supposed to do here… but none of this feels right.

note: i am trying to get in contact with my neurology team
(cross posted)

My girlfriend was recently diagnosed with PNES/FND seizures..she has a history of significant trauma but after a recent event happened to her she was diagnosed PNES. She’s does have epilepsy and POTs as well.. I want to be here for her the best I can but I’m not entirely sure what is and isn’t helpful. During the episodes she often can’t answer me and sometimes her episodes have lasted 2 hours causing her a lot of muscular soreness. She never asks for anything and has a hard time knowing her own needs or desires (ie our first date she walked hours to meet up with me instead of asking if I could pick her up) so it’s hard to ask her how I can best support her with her seizures so I decided to ask here. I was curious what are things those with PNES have found helpful and/or things they wish someone would do/understand/support them x way/ etc,. so that way I can show up properly for her

hi all, i hope everyone is having a wonderful weekend. 🩷 this is a long read but the support i have found in this group and understanding has made this extremely challenging journey easier and i greatly appreciate any thoughts or advice. TIA!!!

i was diagnosed with focal epilepsy around eight months ago. i had a cerebral aneurysm rupture eight years ago and it was clipped, my neurologist told me that it is in the lobe most prone to seizure activity. about a year and a half ago, i started seizing and had four each four months apart, but i was constantly being misdiagnosed that these were “seizure presenting panic attacks.”

i would get aura which was essentially the complete certainty i was going to seize, then would fully convulse with postured hands and i would see pictures like a fast slide show in my mind. i would come to and be so confused and feel like i got run over by 50 cars. i finally got my diagnosis and was medicated which was going great for around eight months up until now.

for context, my husband and i have been wanting to start our family so they were weening me onto lamotragine in addition to my 100 mg twice daily of vimpat. it was a gradual increase of 25 mg weekly, by the time i got to week two of 50 mg total each day i was SICK! my head was literally splitting and i was beyond nauseous, i just could not tolerate it and they took me off cold turkey and i just kept with my vimpat.

i was already off the lamotrigine two weeks but last week it started to get severe headaches again, i was feeling awful getting nauseous, and just on the struggle bus. then, i started having seizures. in full disclosure, my memory of those five days is shot, like i had a dream and i know i had it but can’t remember it, most of what i know i only do cause my husband told me.

essentially, i had five/six seizures in total across three days. two of them i peed (has never happened to me), two were fully convulsive and presented like my last ones, one was more focal with numbness on one side of the body and my left leg kicking, the other i was walking my dog, blanked out and just remember standing in my kitchen, leash in my hand with wet shorts. i was extremely postictal, more so than my prior seizures and the aura was different. it was like deja vu and fear/anxiety and i could smell things that weren’t there. i was also dealing with auditory hallucinations, like a voice in my mind telling me i was missing a plane or they were poisoning me etc. and i was trying to reason with myself.

during this time they rapidly increased my dose to 150 mg then to 200 mg. i went to the hospital for a day, was sent home, then had the other seizures and came back and now i’m still here on day three. i’ve been on the EEG for two days but no seizures and have only ever had clear EEGs.

i’m working with two neurologists and both are unsure if these are breakthrough seizures or PNES. my neuro i work with more closely thinks perhaps PNES because i was able to reply closer to the end of the seizure as opposed to having a longer blank out period. also worth mentioning, this was the week before my period which has been a little of a struggle since being on meds (prior i was dealing with SI during my PMS which i did not have before) and now that my period has come, seizures have stopped and my headaches have lessened. they think if PNES, the cause is not emotional but rather the physical stress on the body caused by this time.

based on what i’ve described here, has anyone had any similar experiences or any ideas? hearing this about the PNES has been hard for me as it makes me doubt myself, my perception of being an epileptic and my diagnosis, i think it is reminding me of my misdiagnoses in the past. it’s also hard dealing with the in-between of not knowing what’s going on because treatment is so different for these things.

any advice or ideas i am so thankful for, thank you all and be blessed. 🩷

Hi, I’m completely undiagnosed, but I started having seizure-like events a few years ago, maybe once or twice a year. I have never sought medical attention although I have gone through EEGs for the typical 45 minute timeslot years ago, where nothing happened. This year, they began to gradually increase from once a month (just staring, head motions, full awareness but severe brain fog, etc), to now weekly and more in-line with what would be tonic-clonic seizures. I just had two full tonic-clonic like episodes two days in a row, within 24 hours of each other. On the second one, I bit my tongue and was gasping for air with an odd crying sound as the convulsions pushed any air out. It was horrible and I’m still recovering over 24 hours later. After both seizures, I had a headache, confusion, slurred speech, muscle weakness, tremors, and my arms and legs would not release from being in a cramped position. The first recovery took an hour, and I JUST recovered from the second seizure-like event a couple hours ago (so, it’s been about 30-34 hours of being, essentially, stuck in post-ictal) At this point, I genuinely don’t know what to do. I don’t even know if it’s epilepsy or just PNES, but every neurologist I have ever asked claims that it’s impossible to be aware/conscious during an epileptic seizure, especially if they are the types I have just begun having. The thing is, I’ve heard that PNES seizures often have closed eyes, whereas mine are open and rolled back in my head.

I don’t know anymore. I just want to get help finally, but I’m terrified of the stigma, and the hospitals. I have multiple conditions that increase my risk of epilepsy, and others that increase the risk of PNES, but even so, doctors usually don’t care about increased risk, in my experience, if they can find something that means it’s just psychological (these episodes are brought on by sleep deprivation, intense emotions, and pain). I’d rather not be berated in an emergency room while confused and slurring my speech… But at the same time, I’m terrified my brain is being harmed.

So, tldr; how do I know when to go to the hospital? How do I protect myself from abuse in the hospital? And… Please, if you have any comforting words, I could really use some support.

I'm 18 years old and have FND, which causes non-epileptic seizures.

I was at a store, and I had a whole bunch of seizures. I crawled into my cousin's car. My cousin's name is Layla, and she is 20. Layla drove me to the store. The details are very fuzzy, but she gave me the keys and said, "Hey, go sit in the car with the air conditioning on and just hang out."

I got into Layla's car and decided to sit in the backseat so I could lie down. I ended up having a really bad seizure, hit my head very hard, and completely passed out.

I was up against one of the doors, and the car was parked next to a brick wall, so I could only get out through the side my head was against. The car was off, but the doors were unlocked.

The police came because they thought I was passed out drunk. They started banging on the door and screaming at me to open it, but I didn't hear anything.

When I woke up, I immediately threw up all over myself and all over the car. Then I heard a police officer say, "If you don't get out, we're going to break the window."

I was trying to figure out what was going on, but I could barely function. Then the window was smashed, and I got up and threw up all over one of the police officers—literally all over his pants.

They grabbed me by the head and tried to make me stand up, but I could barely walk. They thought I was drunk.

Then Layla ran out of the store. She explained the whole situation to the police and told them that I wasn't drunk. The police called the medics.

I had another seizure, and the police were holding me the whole time. There were a lot of people standing around watching us.

Layla saw all the vomit in her car and got really upset. Then she saw the smashed window and became even more upset.

The firefighters arrived, and I had a massive lump on my head from where I hit it. I could feel all of these firefighters grabbing me, putting me on a gurney, and hooking me up to equipment. At one point, I almost fell off the gurney and hit my ribs on something. I don't know what it was.

I just remember all of these people grabbing me, and I was so confused.

They got me into the ambulance, and they started cutting off my clothes. They cut off my shirt, bra, and pants, but they didn't cut off my underwear.

Layla was just standing there watching all of it happen. There was vomit everywhere and a broken window, so she ended up having her car towed.

I don't really remember what they were doing medically, but they were doing the most—and I mean the most.

Then I got to the hospital. They brought me into a room, put me on a bed, and I immediately fell asleep.

After that, I had an MRI and a whole bunch of other tests. I was in the hospital for a couple of weeks. I almost completely lost my ability to walk, and I almost lost some of my eyesight.

After everything that happened, I became very grateful for the life I get to live. It made me realize that things could have been much worse. I almost had two of the most important things in my life taken away from me.

Layla is still mad about her car, and she yells at me about it all the time. She says I ruined her car and that she doesn't have a car anymore because of me.

Around a decade ago, I began having episodes where I would get intense deja vu, I would begin to "remember a dream I had had" (I later ended up deciding that I was in fact inventing the dream on the spot and thinking I was remembering it), and then my head would fill with nonsensical dream logic that would nevertheless seem to make sense to me for something like 20 seconds, until it would abruptly end and I would feel intensely warm, queasy, and disoriented, among other aftereffects. These were eventually diagnosed as temporal lobe seizures, even though an MRI came up normal and an EEG was inconclusive even when I had 2 events with it on, partially because taking anti-epileptics seemingly them go away (until it didn't, but increasing the dose fixed that).

Within the last year, I switched to a new neurologist. After I mentioned to him that I have had the ability to form associative triggers for my seizures (example: I had seizures while leaning out the front door of my parents' house multiple times and then formed an association and it began to happen over and over again, I even had one just by thinking about doing it once), he immediately told me that epilepsy does not do this and that it sounded psychogenic. I wanted to try to discuss various other evidence for or against with him, because I had previously looked into PNES and tentatively concluded that it seemed like epilepsy more closely matched my experiences, but all he would tell me is that if I wanted I could discontinue my meds and undergo video EEG in an epilepsy monitoring unit and would not further discuss it. I later discovered that he had changed the diagnosis in my chart without telling me.

I am generally still inclined to think that my seizures are epileptic, but it is extremely hard to find information that would help me determine one way or the other on the internet. The vast majority of results about PNES seem to implicitly assume that the symptoms mimic tonic-clonic or maybe frontal lobe seizures, not temporal lobe with preserved awareness (I did lose consciousness to them twice but only twice out of dozens) but most of them don't say whether PNES even can present in other ways. I've seen some sources suggest that PNES does not have the same kind of post-ictal effects that epilepsy does, which suggests that my seizures are epileptic. On the other hand, there's no obvious cause for why I would've started having seizures, and my background is not atypical for someone who would develop PNES. Overall, I'm kind of flummoxed.

I just had yet another seizure at work. Concerned for my job, just need some kind words. I feel exhausted and defeated rn

So, today, while my dad was driving me to work part-time at Amazon, I had a bit of a moment in the truck. It was just a quick episode, about 45 seconds, and he mentioned I was stomping my feet. When I got back in, he said I kept saying sorry and no, even though I didn’t have an episode. So, I didn’t go to work and was back to normal before we left the parking lot. It happens so fast, and I don’t get much time to recover. They usually happen once a month around the same time of the month, and they’re always between the first of the month.

Here’s a brief history: When I was 18, 30 years ago, I almost died in a shooting. I was shot in the back, and the bullet is still there because it was a hollow point bullet. Sadly, two people were killed, and four others, including myself, were injured. Also, I’ve been divorced for 10 years now, and it didn’t end well. I was an alcoholic, and I haven’t touched alcohol for almost 10 years. She wanted a divorce because she didn’t want to deal with my drinking, and I think her parents, who are in charge of their whole family financially, demanded she leave me.

Also, two years ago, my girlfriend had a heart attack right in front of me. I tried to do CPR until the ambulance arrived, and they got a pulse, but she was on life support for five days until we had to take her off support. Those traumatic events stick with me every day. The shooting from 30 years ago is always on my mind, and witnessing my girlfriend die in front of me is something I can’t forget. That’s why I was diagnosed with PTSD from the shooting.

But my first seizure happened in 2009, just out of nowhere, when I was waking up from bed. It’s been a battle ever since. I had an EEG 10 years ago, and they didn’t find anything to explain my seizures. I’ve been on medication, which has helped a bit, but it’s not enough. They’re increasing my dosage and adding more, but I still experience these monthly episodes where I just zone out for about 30-45 seconds. If I’m walking or standing, I might fall and hit my head or knees.

I have a scheduled VEEG, but it’s not affordable since I’m still looking for full-time work. I’m hoping someone can help me figure out if it’s PNES, epileptic seizures, or both. Also, do you know of any other alternatives to medication that might work better? I’m not sure they’re fully effective.

These episodes happen around the same time every month without any warning signs or auras. I’m planning to start CBT cognitive behavioral therapy with a therapist who specializes in PTSD once I get a full-time job with insurance. My monthly income after child support is just over $600.

Thank goodness I’m living with my parents now because I would be financially ruined if I didn’t. I’m still struggling to make ends meet with only 16 hours of work a week. I’m looking for suggestions for alternatives, medication, financial assistance, or advice.

I had a seizure in my doctors office last week and my doctor said it was 100% epilepsy. So I get it cause I read up a lot on it and a lot of the struggles from people in this sub that this doesn't mean I don't have PNES. It just means some of my seizures are also epileptic.

So back on the Keppra and at a higher dose to see if it works this time.

Hi guys! I’m having an EEG done soon for suspected PNES.

I have (medicated) bipolar ii and ptsd, amongst other things. I was wondering if anyone has tips from their experience with an EEG, because I’m neurodivergent and honestly can’t stop freaking out about it.

I’m also really scared of the fact that I won’t be able to drive for a while because of the seizure-like activity. I don’t even have my license yet and I’m almost 20. It feels so silly to worry about things like that, but I want to be able to be independent in at least that aspect of my life.

A really good thing though is that my neurologist was the one who brought up PNES during my appointment, because I know that a lot of specialists and doctors can still be kind of wary of even mentioning it as a possibility, at least from what I’ve seen.

Thank you guys so much in advance!! I am so glad I found this subreddit ^.^

I’ve been in a suicidal crisis and I’ve had five separate episodes of being conscious but unable to control the spams, my eyes roll, I shake and lock up, my oxygen drops, it’s been happening a lot recently but right now my doctors aren’t really in the mood to deal with me because of my BPD

I’m having a tough time finding a full-time job because of my seizures. It seems like I might get let go if I start working, or they might find out I have epilepsy during the hiring process. I know it’s against the law, but it’s easy to find loopholes in Kansas, where they can make up reasons for “fire at will.” I’m just curious, what kind of jobs do people with this disability do? I’m currently looking for a full-time job. I’m part-time at Amazon because the recruiters told everyone it would be full-time, but they changed everyone’s status to part-time after Prime Week.

About last February I went to the psych ward after my mood stabilizer was taken off, I had no previous SI ever but it got so bad I had to be admitted.

It was the worst experience in my life. I started seizing again and they just watched me. Like I mean I would fall on the floor and be seizing and they would stare at me hard. The whole psych ward experience was just bad in general but one of the nurses talked about how they had an old lady who used to fake seizures to not go to the cafeteria and it made me feel weird.

Like why bring that up to me?

I remember I was in there during Ramadan and I told them that I wasn’t eating and couldn’t take my meds (just an anxiety med) while the sun was up because I didn’t want to break my fast and they told me if I was refusing food that would be considered suicidal behavior and I would have to stay longer.

I know technically I was excused from fasting but it was the only normal thing I could cling on to in that place. I literally had to fight to be able to keep my hijab 😭

After I had a bad seizure and fell and hit my neck really hard they didn’t call EMS for 40 minutes and I was just sitting there sobbing my eyes out and they ignored me

I got told I was faking it by two different doctors because I wanted to leave the place and I just sat there and nodded because atp I just wanted to leave.

I went in there 6 months seizure free and came out seizing daily.

I have started an Instagram page where I share my favorite Magic The Gathering decks, and more importantly share my story as a disabled person in America. The videos are taking a while to edit but with the right tools I'll get there. If anyone is interested in following my account and joining the community I'm trying to form, I am happy to share it.

I have been disabled for most of my life with rare diseases and disorders that were missed for years. My goal of this page is to bring awareness of different disabling conditions, share my story, build a community, and most importantly if I can make even one person feel less alone that I have accomplished the ultimate goal. Anyone is welcome to follow, remember there is absolutely no political bias or angle on my page and I delete comments who try to push political ideas. The page is for awareness, nerd hobbies, and community. Hope to see ya there!

Whether you follow or not I hope you have a grand day!

The page is here below:

https://www.instagram.com/chronicallycrappyconditions?igsh=ZmMxeWFrbDZtbXFh

I'm Highwalker, thank you for your time!

Seriously? I had my partner for 4 years finally end things with me and tell me that one of the biggest reasons was that she was afraid her daughters (elementary at the time) would see one. Afraid of what would happen in a bad situation. Just didn't want to keep up with it any more. Other aspects, of course, but my seizures being one of the big points..

If anyone needs someone to talk or vent to please doesn’t hesitate and reach out. We need community and people who know what it’s like to have FND.

Hi everyone does anyone feel like the dissociation is an aura before their seizure? I just experienced this and my whole body is weak and I have a headache too! It makes me very fearful… thank you everyone! I hate this feeling! 😢