I follow the nursing subreddit and was going through some of their older posts about seizures. The one I was reading was specifically titled “how to tell if a patient is faking a seizure.” It was honestly disturbing to read. A ton of nurses on there were claiming they will do things to illicit a pain response out of a patient during a seizure to see if they are faking it. Some things they mentioned were pushing down hard on a nail bed, shooting saline into an eye ball, pinching the inside of the thigh, pinching a nipple, trying to poke a patient in the eye with their own finger, and having the patient slap themselves with their own hand. I literally couldn’t believe what I was reading. As someone who was recently diagnosed is this normal behavior? I recently had a hospital stay where I seized over five minutes and required Ativan. None of the nurses/doctors gave me any info about my seizure when I woke up basically just saying I had one and that was it. I had to go into my chart online to read the nurse notes and that’s when I found out it was over five minutes and required the Ativan and also Vimpat. When I went back to the notes from my previous hospital visit I was disturbed to find they had noted I had a mental health history and believed my seizures were psychogenic in nature. It wasn’t until they saw me have one that they believed me. Now I’m wondering if they were trying these bizarre tests on me while I was seizing and it’s upsetting to think about. Anyone else heard of this or had a bad experience in the ER???

I don't want to scare any of you guys if you are using Accutane right now, it's just a warning for those who might mess up the time they take their meds everyday. And I also want to get it off of my chest since it caused me a great deal of anxiety that I couldn't even talk about my epilepsy as it triggered my fear of seizures. So I am doing this because I have to get over my anxiety and make peace with what happened.

I have sleep epilepsy and I'm on Lamictal, which my doctor decreased it's dosage each year since I was seizure free. We were very close to completely cut it off in a year or so. I was (and still am) on 100mg once a day, at night. Tbh I was careless about it, I got cocky since I was seizure free so instead of taking it everyday at the same hour, I started taking it only before going to bed (mistake 1). Before my first seizure in 6 years, a year back, I used accutane because of my acnes as my derm prescribed for 5 months. It did wonders, I had the prettiest skin. But I was careful to not take both Lamictal and Accutane at the same time since I knew Accutane was a dangerous med in so many ways. But then within less than a year, I started having break outs on my face again and went to see my derm. She said we can use Accutane again as a maintenance dose, once every other day. That one night, I was really sleepy and I was hitting bed, was about to take Lamictal as usual but then I realized I forgot to take my Accutane as well that day, so, as stupid as it sounds, I took both of them on my tongue and swallowed them. At the same, fucking, time (mistake 2). Which I never did before. And that is what ruined my 6 years of streak, having my husband witness a seizure for the first time in his life. It was around 5 am and he even called an ambulance since the poor guy was so scared even though I told him what to do in case of a seizure years ago. It was a rather small seizure, according to his testimony, He said it lasted a minute or so. Back in the days, it lasted 4 minutes or so. And also I didn't pee myself so I can also confirm that it wasn't as big as the ones I had 6 years ago. Later when we talked with my neuro, he said Accutane is a kind of medication that he wants his patiences to stay away. Whelp.

Long story short, never, ever mess with meds and the hour you take them in a day. This happened in September, 2024 and I've been taking Lamictal at the same hour ever since. It's true that I developed a fear of ANY medication other than Lamictal and even rejected taking the most innocent pain killers even though my head ache killed me. I was scared of going to sleep every night, couldn't spell the word "epilepsy" since I wanted to pretend that such thing didn't exist. Now I'm slowly trying to get over these, and I'm not that sad anymore. I'm learning to make peace with my condition. You guys also be careful to combine your epilepsy meds with others, especially if it's a drug such as Accutane. And always listen to your doctors! <3

So, I have been having grand mal seizures since I was either 17 or 18. Sometimes I'll be able to go a couple months without one, or be getting them multiple times a week. My first was very out of the blue, I didn't know anything about seizures at the time either. I was on a cruise ship, where I was the happiest and having the time of my life. I thought it was just a freak random thing because neuros and everything in between couldn't find anything wrong.

And then about a year later, I had another one. Since then, I have been having them very often. I know about, maybe, 7-8 times out of 10 when I'm going to have them.

Sometimes it's completely random too, though. My auras are extremely weird though. I feel like I can't hold onto anything, I will twitch and shake like crazy. I will drop things too really badly. My words don't come out right either so it's hard for me to hold a conversation.

Sometimes this happens just minutes before one, others it will go on for hours and hours before one. I have tried so many seizure meds and they either don't work, and/or give me awful side effects. The only ones that do work for me are benzo medications. And that makes it difficult because I move very often so I have to change doctors a lot, and a lot of doctors will not give those medications out now.

Nothing ever shows up on MRIs or EEGS, pretty much anything. It is ruining my life. I've never been able to drive, so that ruins a lot too. I can't hold jobs long because I have them so often, so they end up firing me. Which I do understand because I imagine it's difficult to have an employee you can't really rely on if they're just dropping to the ground constantly.

I'm just posting this for some advice and to maybe see if anyone else is/has gone through this? Where no doctors can find anything wrong? I've had doctors say I'm fucking faking it before too. Thank you for reading this and I'm sorry for writing a novel. ❤️

Edit: added some paragraphs between this so people could read easier. Very sorry for not thinking of that prior!

I usually have seizures 3-4 times a week but more than once never in the span of a couple of hours. I have searched on Google and seen that I should ring 999 although I don't think the person I live with would want to accompany me (I'm under 18 years of age and would need someone to go with me). So what should I do if it happens? Also i'm not diagnosed with anything!

For context, I was diagnosed with temporal lobe epilepsy and focal seizures about 5 years ago at the age of 22. They present as a numbing sensation spreading through my body, deja vu, sweating, dizziness, nausea and intense dread/terror. Lasting maybe about 30 seconds to a minute, followed by de-realization until it wears off. -Yes I take medication and it helps tremendously. -Yes I’ve been in contact with my neurologist. -My threshold has been thrown off due to the flu and losing a bit of weight, stress is making it worse. -I just want other opinions for those who experience similar issues with stress management.

My anxiety/stress is the biggest trigger and often creates a cycle because of the anticipation and fear of more. I’ve found that singing is one of the best ways to get my brain to stop spiraling. However, I can’t just sing all the time. (especially because I suck)

Any tips to engage both my brain and other senses in a similar way?

Tl;dr Temporal lobe epilepsy with focal seizures. Stress is a big trigger, and it creates a cycle due to fear of more seizures. Medication helps, but my threshold is lower due to stress, weight loss, and the flu. Singing helps me break the cycle by engaging my brain and emotions, but I can’t always do that. Any tips for engaging my brain and senses in a similar way?

So does keppra cause liver damage, kinda curious since I got an ultrasound on my liver at the end of the month.

After my last TC in a taxi a couple of days ago I’m really considering buying some kind of bracelet that provides information about my epilepsy.

I was on a taxi drive while it happened. The driver luckily just switched the destination to the nearest hospital in which I woke up a few minutes later.. they didn’t really know what happened so I guess it wouldn’t be stupid to just write it on a bracelet. Especially because after every TC I need 1-2 hours to get my brain fully working again and explain people around me what’s going on.

What do you guys think? Is anyone maybe already using something like that?

I just switched health care providers bc I got a new job( stupid usa system ) so I had to re established with a new neuro. My previous neuro didn’t do much but refill meds, and manage migraines ( which I no longer have - side effect of ellquis. I have restless leg syndrome, fibromyalgia, endometriosis , pots- So a lot of problems. New dr says get off miraplex ( RLS) and try pregamlin - now on 3 weeks of spiriting miraplex dose at night and taking pregamlin things are not so good. Can’t sleep very well or at all bc my legs and sometimes arms are so angry painful. I believe bc of lack of sleep I have had seizures in my sleep and believe I woke up for one which was the weird most terrifying experience. I have sleep deprivation eeg in a week, the dr did a non sleep deprivation which was normal. I’d never had a normal eeg before, in over 16 years of having them. I had an instance one night where I soaked myself and the bed in urine and woke up gross- I assume I had a grand mal, not witnessed .;So idk I’m ranting and looking for community. Dr said video egg with cold turkey on meds if any more incidents so I wonder he won’t just jump to order video eeg. Please anyone tell me about video eeg and how to prepare

I refuse to shower unless I know someone is sitting by the door. After my last TC I had in the shower got me scared

I feel like I'm going to have a seizure, I feel this way before I'm going to have one I asked for the person who I live with to observe me as I do and I couldn't relax because they kept talking to me and eventually they left saying what I'm experiencing isn't an aura since they knew someone as a child with epilepsy who had grandmal seizures who had auras not like this and I'm making a fool of myself, overreacting and that I don't have any epilepsy (I'm not diagnosed with anything and I haven't had an EEG)

I feel extremely weird right know and feel a really weird melancholia probably because of what I was told but I was just left alone on my bed and I'm scared to get up because I might fall. Really feel like I don't have any support at the moment from the NHS or from my family, friends. Ugh

What they said reminds me of people saying "oh you're not autistic because my nephew loves trains and can't speak, you're neither of those" 😭

Do any of you have the Vagus Nerve Stimulation implant? My doctor is going to set up a consultation for me, and I’m just wondering if it helps prevent seizures or how well it works for individuals who have been diagnosed with JME or who are experiencing absence, myoclonic, or tonic clonic seizures?

I live and work in an isolated part of the world and don’t have regular access to a neurologist or a GP, let alone people who share this affliction.

I am having dissociative episodes which last for a long time followed by Grand mal seizures, hypoxia and alll that wonderful stuff that comes with it . I am on 400mg of lamictal a day and would really like to get off these meds and live a happy life. My mind and emotions are a mess, with each seizure I feel cognitive decline, I hold it together and don’t make a fuss. Is there anything I could do to make this better? Any suggestions on different medications or lifestyle choices?

Also thank you, just found this sub and reading through old posts has been inciteful, it’s nice to see social media used for something good, I am genuinely appreciative

Does anyone else notice that your focal/ partial seizures are set off by sensory stimulation. It was really bad in the winter the hot and cold and even certain smells. It seems to set off my head twitch seizures. I feel like I’m going crazy because I feel like people look at me like I’m making it up.

Hello fellow epileptic brits. I'm currently able to claim 78 quid on pip but are my parents able to claim a council tax reduction? It's already extortionate and we're struggling to get by. Especially with trains costing an arm and a leg.

I know I can get blue badge and a bus pass. What else are we able to do to make life easier?

Hello!!

Question please..

I get why baths are a no-no, but why do I see comments about showering alone with noone home?

I'm sorry if I'm being dense but is it more than a shower drain can get clogged/pushed down if you fall in the tub which can fill with water? So a shower stall works?

Just always been curious and wonder if there is more I should know.

Thanks!!!!

I picked up my meds today at CVS and paid $50. I was stunned.

I used to pay under $10. I take Keppra and Topamax generic for both.

Luckily this is for a 90 day supply but wow. My insurance hasn’t changed has anyone else had this happen?

I’ll get right to my questions:

1: just what the title says. Are those actually effective for you?

2: if not, what other kinds of flashing lights do trigger seizures for you?

————————————

That’s really what I want to know. No need to read further, but here’s some background info on why I’m trying to figure this out:

My first neurologist made a tentative diagnosis of Juvenile Myoclonic Epilepsy. I literally screamed when I googled myoclonic seizure right after that appointment because I finally had an explanation for the bizarre and painful body jerks I’d had since I was 14. The diagnosis fits like a GLOVE except that nothing has ever showed up on my EEGs.

He left the practice right after that and couple of neurologists afterward diagnosed me with PNES. I WANTED that to be true. Anti-anxiety / depressants / therapy did nothing. In the end PNES doesn’t make sense to me. I have never had conscious bilateral shaking and definitely no shaking at all on EEG. I’m not too worried because I have a few friends who had to get EEG specialists review theirs to find subtle focal seated.

My family are the ones who insisted that I must be photosensitive. I had no idea because I get so confused / unaware during these spells (focal aware seizures?). They could see the pattern though and it has made so much sense since then. I’m a software developer and have so much trouble with this while working.

The flashing lights during EEGs have never triggered anything though. My brother in law showed me a video while on EEG that made my eyes shake and fall / lose muscle tone. I was conscious the whole time.

For me, it seems to be any blinking with a SHARP CONTRAST. Choppy website rendering, stage lighting at theater performances, odd things like ceiling fans, and, yes, stereotypical flashing lights during movies/video games. Just not the ones in the hospital. They seem to have a kind of “fluid” transition between the blinking.

Am I way off on this? Has anyone else dealt with this experience?

Anyone else feel this way when they wake up from a seizure? (Specifically clonic-tonic, that’s what I have.) I will be in-and-out of sleep, tossing and turning, unable to actually wake up, think, or talk, kinda like sleep paralysis I think except I can move, I just don’t really have control over the movement because I’m too unaware. I didn’t get this until last year and it was scary the first time.

My son 7, in February was on vacation and he spiked a fever. Out of the blue, his head tilted back, eyes rolled, and he started turning blue. In the moment it feels like a lifetime but I believe he was only out for a small time. He came back and then it took him a few minutes to function again.

We went to the ER, they did a slew of tests - CT, blood, chest x-ray, EKG and everything came back okay except he had flu A and coronavirus.

I thought this would be a one time thing because he was sick.

Yesterday, same issue. He seemed okay in the morning, was on the couch in the afternoon and had a 102 fever - his head flipped back and he became unresponsive. His face started turning blue. Body was still.

We took him to the ER. He has pneumonia. The first EKG was a little off the second was fine. The neurologist wants to do an EEG on his brain. I want to get a full workup this time.

Witnessing this is absolutely terrifying as a parent.

In between bouts of sickness he has been fine.

Has anybody had a similar experience and can share advice? He may be too old for Frebrille seizures. Thank you in advance.

I've never had a seizure with convulsions. For that matter, I couldn't even tell you what my seizure activity looks like. The EEG a few days ago showing "strong seizure activity" was a surprise to everyone.

Which brings me to my question: My husband told me what happened last night: he woke up to find my shoulders very tense and bunched up. He said it sounded like I was breathing in in short bursts but he couldn't hear me breathing out. Thinking I was having a nightmare, he started rubbing my shoulders (which I vaguely remember). He says after about 15-20 seconds, I shuttered a bit and then everything relaxed.

He mentioned that's not the first time that's happened but it doesn't happen often.

Was that a seizure? Am I having seizures at night and that's why I didn't know? Does the brain always have seizure activity even between full blown seizures?

Ever since I was around ten years old, I have had these episodes where I'll remember snippets of dreams over and over again until I get a big enough trigger which will induce a rising feeling in my stomach followed by thirty seconds of nearly passing out, a flood of vivid dream memories, and overall feeling of weirdness. After the event, I cannot remember what memory or dream snippet caused the episode nor can I remember what I was remembering or thinking during the episode (other than repeating to myself "you are going to be okay").

I usually have a cluster of these episodes throughout one day (3-4) and know immediately when I wake up that I will be having a day of these episodes. I know because I'll get small, weird dream memory triggers, which then build up into the episode. Today, they were particularly strong, so I called my PCP, which referred me to an on-call clinician who said to go to the ER.

I am having someone else drive me to the ER soon, but I don't know if there will be an on-call neurologist that will be there to perform an EEG. I've read this is one of the best tests to diagnose seizures, but I could be wrong.

Additionally, these episodes seem to be triggered by a combination of a bad night of sleep and a period of heightened stress/anxiety. They occur very infrequently (months between clusters), so I am worried it will be hard to diagnose/distinguish between epileptic and non-epileptic seizures, assuming it is a seizure.

I assume I should follow up with a neurologist, but I guarantee the appointments will be far in the future. I appreciate any insight you all can provide. Thank you!

Is epilive 500 safe doc told me to never miss them suggested me to take twice daily but I only take one time at night (I only get seizure when I sleep and bite my tongue 🥲)

Ladies and gentlemen, I had brain surgery on Wednesday at 10:00 a.m. and I was able to come home Friday evening because I'm healthy enough. I'm super happy about this. My brain is definitely still healing, I have trouble when I'm speaking sentences sometimes, so bear with me, LOL. As of right now I cannot remember the names of everything however, they have a spot about where my temple is on my left side of my head and it goes all the way down and around to the front of my left ear. And then they got inside they took a piece out and then put everything back together, and I was in surgery for about four or five hours. And then recovery for quite a few hours. And then once I came up, I was feeling pretty well and in a good mood. Thursday, I was exhausted and just slow, but on Friday, I woke up feeling great. And I started the day off slow, but as it went on, I was talking to the doctors and told him I felt great and I was acting really well, so they let me go home Friday evening. And I'm still feeling good around here. Don't get me wrong, I'm feeling crazy. I get confused really easily because things aren't back to normal yet, so I just end up asking my wife or my kids, and they just tell me what to do. By the way, best fucking family ever. One last thing I have never been more scared about getting something done in my life but now that it is done I've never been happier. I will be able to get my driver's license back. I'll be able to get my life back like I'm still 30 years old before my epilepsy started. And I pray to God everybody here is with me. I will pray for every single person on this subreddit. Not just us even people I see on a different post. But we are all going to become better one day and it's fucking awesome. I love you guys so much and one day we're all going to be healthy😭😁😭😁😁😁😁

P.S. you don't need to leave a comment of you don't want to, but if you do bear with me, I'm laying down and about to pass out so I won't see anything until tomorrow. But I love you, and you're going to get better.

Dear Community,

I am 25 years old and struggling with severe visual distortions. My perception is unstable—objects like my heater seem to warp, grow and shrink simultaneously, and stationary things appear to move from left to right. Faces morph, doors and walls seem to shift closer or move sideways, and I also experience depersonalization and derealization. Additionally, I suffer from Jamais-vu, where familiar things suddenly feel strange and unfamiliar.

I’m wondering if this could be classic Alice in Wonderland Syndrome (AIWS)? About nine years ago, I had a drug-induced psychosis with similar symptoms. Additionally, my vision is distorted in a way that when I focus on an object, my entire visual field blurs or warps. My spatial awareness and visual imagination are also impaired—everything feels distorted.

This all started a year ago after experiencing several panic attacks, excessive gaming, consuming a lot of energy drinks, and vaping. Could there be a connection? Doctors have suggested a possible psychosis, but I don’t hear voices or have delusions—just these intense visual disturbances. I've tried five different medications, none of which have helped at all.

Out of desperation, I illegally obtained Clonazepam, which surprisingly alleviates all my symptoms—but I know that’s not a long-term solution. My EEG and MRI showed no abnormalities, which makes this even more frustrating. I have an appointment with my neurologist tomorrow, hoping to finally get some clarity and a proper diagnosis.

I’m becoming increasingly suicidal because of this. I don’t understand why something like this had to happen to me.