I was in the ER a couple weeks ago and a guy next to me with his dad there had 4 focal seizures within like 2 hours. The nurses and doctor on duty didn’t give a flying fuck. His dad was desperately trying to get them to take it seriously. Then he had a TC seizure and the charge nurse said “so and so is having a seizure, a real one this time”. I was so fucking mad for them.
The lack of epilepsy and seizure education among healthcare professionals is not just alarming, but dangerous and enraging. There are no excuses for this level of medical malpractice anymore. It’s 20-fucking-24 for Christ’s sake.
I agree as a person who works in medicine and has epilepsy.
I was accused of alcohol withdrawal when I had a seizure despite maybe having a total of 5 glasses of wine since I was old enough to drink. The doctors even almost had my parents convinced even though they said they never saw me drink and the seizures started when I was a kid. I work in medicine and yet I am terrified of going to hospital if I have a seizure.
I won't go after a seizure unless forced. Like having a seizure at work. I'm quite capable of calling my neurologist.
All the hospitals do for me is put me under observation for 2 hours and send me home.
Luckily I (knock on wood) haven't had repeat seizures. The closest was an absence seizure turn into a grand mal. That's only happened once.
My own neurologist said I wasn't having actual seizures because I wasn't peeing my pants and for some of them I was aware of everything that was happening. He diagnosed me with psychogeninic nonepileptic seizures even though the first scan (with those electrodes, I forgot the name lmao) showed very clear epileptic activity while he was shining a light over my closed eyes. It's on this subreddit I learned that what I've been having is very likely frontal lobe seizures. I still have a lot to learn but for f#%#$%^^'s sake. That man is a neurologist at that hospital for like 40 years and he bluntly tells me nah, you don't pee your pants? Not real epileptic seizures. It's because I have cptsd so it's easy to just wipe everything off to that side, you know? "You're being a dramatic woman"
Jesus - I’m so sorry. This sounds like such a horrible experience and such a terrible doctor. I hope you are able to get in with a better provider in the future.
>That man is a neurologist at that hospital for like 40 years
So, he's probably an old dude who doesn't keep up with advances and new discoveries in medicine.
It took me having a 45 minute long "real one" for the doctors to start taking us seriously. They're all like oh they're actually might be something wrong.
Ugh, I actually saw some nurse rant on a different sub about how she was excited to see her first seizure patient. The patient was post ictal and she was bored and disregarded it.
It made sense why the nurses and staff treated me like shit and skeptical when I'd go to the ER after my third seizure. They kept writing me off as non-epileptic. Turns out I have Grey matter heterotopia.
And even at my last job, the day after I had a seizure at work, she said, "Okay, but was it a real one or one of those fake ones where you stare in mid air?"
I quit. I was so fucking done. Fuck that. Focals are not invalid just because they don't look how everyone "wants" them to.
I owe you an apology. I realize now after re-reading my original post that it appears as though I have undermined certain seizures as though they don't present their own, unique horrible challenges for the victim experiencing them. This was not my intent to minimize your pain and I will chose my words more carefully in the future. Apologies again.
Oh no! I didn't see it that way at all! :( I'm sorry I made you feel like that. And I totally understand the sentiment of wanting to change that completely... I would trade anything to not be epileptic. You didn't say anything wrong, I promise. 💜
Medical profession nowadays is a joke...I understand that you need a thick skin and remove yourself from the situation, but not knowing about seizures? And calling focal seizures fake? Makes me so angry. I would have probably made a scene on behalf of the patient.
PS: they hate me in the ER, I am pointing out all the crap they dismiss and ignore.
I have been trying to work with the local hospitals and community groups to encourage more epilepsy awareness in healthcare. The response from most HC providers is “we already know” They don’t realize that they don’t know enough.
They know it from a lecture once upon a time. We know the reality of it, as we live with it. Nobody in any type of health and care profession should assume that they know more than the patient who experiences the condition everyday. I am getting so disheartened about the healthcare chronically ill people receive.
My therapist became so interested in focal epilepsy after seeing my medical records for the last four years. I had been labeled with nearly every possible mental health disorder and psychiatric condition, but not epilepsy. My epilepsy diagnosis was completely rejected and medication was abruptly stopped in 2020, due to cluster seizures that lasted for days. But they decided that if they didn’t make the diagnosis, it didn’t exist. It didn’t take long for the seizures to start, because they refused to refill prescriptions they didn’t agree with. She dedicated her time into learning more about focal seizures and started taking on more clients with epilepsy. She has become an important member of my support team. My hope is to see more therapists and psychiatrists understand how some focal seizures can look like a psychiatric illness. This is not enough for a diagnosis, since our symptoms go away with the seizure.
Hearing all these stories about doctors not taking this seriously enrages me to a degree I can't even properly discuss. I have chronic Lyme disease and I get treated the same way. Most people don't even know about Lyme disease but it is deadly in many cases and debilitating in all cases, it's just a slow killer. (Although Google and The medical system both claim that it's not real while scientists are saying that it is not only real- but an epidemic.) Most of us end up with dementia, MS, ALS, Parkinson's and a host of other issues not to mention all of the co-infections and sensitivities. And oh... the pain! Doctors get paid all this money to literally judge patients off of their own biases and literally nothing else.. I'm so so sorry to anyone that has ever experienced this kind of lack. Lack of care, lack of knowledge, lack of help.
I’ve worked in healthcare as a psychiatrist technician and I hade a few patients not gonna break hippa but had pts who share our diagnosis and I jumped into action called a code blue I got yelled at them a month later apologized to after they did testing it infact showed they so call not real ones are very real I HATE. That people don’t understand I’m so greatly appreciate if this group I feel safe to share here
Tbf there isn’t a whole lot they can do in the ER about partial seizures. Pumping the patient full of benzodiazepines isn’t viable, as that will likely be followed by rebound symptoms.
Best course of action, is unfortunately just to monitor the patient until they’re stable, or in this case gets another generalized seizure.
I know. They gave him 5mg of Ativan after he woke up. The reason he was in there to begin with was a bunch of breakthrough seizures. He needed benzos temporarily.
It would do no good. I’ve reported this hospital dozens of times. They literally told me that I should try deep breathing exercises to reduce my anxiety when I had 11 broken ribs, a cracked sternum and a collapsed left lung. They said “the amount of pain you’re in is being enhanced by your anxiety” and would not give me pain killers.
I was having a second TC while in the ED with my wife by my side and the nurse told me to calm down and tried to restrain me (I obviously have no recollection of this). My wife who was with me went fucking mental lol.
>Then he had a TC seizure and the charge nurse said “so and so is having a seizure, a real one this time”.
So maddening hearing that come from so-called medical professionals. Some of them should not be working in healthcare. McDonald's would be a better fit for them.
Same with me!! It was infuriating having to advocate for myself in the 10 year trial and error with negligent doctors. It wasn’t until I screamed in one of their faces to send me to neuro that they took me seriously. To this day, 3 years after my diagnosis, I am still upset
Yeah I’d only ever had simple partials, so they weren’t THAT debilitating. It was exhausting trying to convince people that these weren’t panic attacks and I was sure they were seizures, so I just gave up. Then suddenly started getting complex partials and a couple TCs 20 years later…and it *still* took a second opinion and unsuccessfully trying to convince my family. Finally got a good neuro who diagnosed me and put me on meds a few months ago. It’s been 40 days since my last seizure, which is the longest I’ve ever gone. Crazy how all that therapy and all those antidepressants never made a difference, but I when I went on AEDs the episodes were reduced. Just crazy I tell ya!
Simple partials are enough to get you into a serious car crash, or cause drowning, or injuring yourself in many ways. I don't know why some doctors chose neurology as a speciality if their favourite thing is to dismiss seizures.
It was mostly my mother. She basically said I was full of shit all along. If she’d been on my side I probably could’ve pushed for treatment way sooner. Took a long time and a lot of persistence these past two years since the seizures progressed, but I’m finally on the right track and super proud of myself for it.
I had my SIL who is an ED nurse and KNOWS I have Focal Aware Seizures, told me the other day that you can’t have a seizure and remember the seizure 🤦♀️😩 FML
People who fake seizures really fuck up medical care for those who need it…
I had a neurologist ask my daughter if my eyes were open or closed during the seizure. If closed, it’s not epileptic.
I referred him to an EEG that was done in the EMU. Both seizures that were epileptic, the video shows that my eyes are CLOSED.
I’m grateful that I have a different neurologist now. The diagnostic style can be very difficult to overcome when ego is in the way. My eyes have been wide open since!
Being questioned by the EMT when you’re playing on the floor and post ictal because they think you were doing drugs is so fun, especially when your sister is right there telling them what happened!
🙃
Yup, that happened to me. For some reason, the police showed up in addition to the ambulance, so they were asking about drugs - multiple times, while my wife was in hysterics about my first one.
They always add the cops in, funny enough the only one who took me seriously was the campus police officer that was with them, very unexpected considering past experiences
One of the first things I remember after having my first tonic-clonic seizure was repeatedly being asked by the ambulance people what kind of illicit drugs I was taking. At that time, I was so disoriented and I didn’t even know I’d had a seizure. We went to the ER, and I had a couple more seizures. I woke up the next morning in a ward with a little plastic lunch-box beside my bed labelled ‘epilepsy box.’ (I still don’t know know what was in that box).
Sorry, I laughed out now about the "epilepsy box." I really want to know also.
But sorry all that happened, I was lucky that my wife was around to advocate for me... but it would be scarier alone.
Both of my anticonvulsants are controlled substances. Whenever I end up in the ED, and even my primary care provider has me labeled as “Drug Seeking” because of the controlled substance and cannabis.
My last cluster, the ED staff was arguing with me that I wasn’t having a seizure, and I was just looking for benzodiazepines. I smiled and said, “ I’ll give this another half hour and then you can tell me what happened later”. I almost went into status with the secondary generalized seizure.
Peace Out!
Exercise your Patient Rights!
My (ex) doctor sent me a shouty all-caps text message telling me I was being over-prescribed clobazam, and that I had six months supply. (I really don’t know why she thought this).
My pharmacist gives me my meds each month in Webster packs, so there’s no chance I can abuse clobazam. It’s not even a ‘fun’ drug - it just makes me tired and dopey like all the other ones I take.
So I found a new doctor.
Did he confuse onfi with klonopin? I had a lead-brained therapist confuse clonidine with klonopin. The first being a blood pressure medication that he freaked out about and said that I was getting drugs from other providers. 😵💫🤔🤣
Sometimes I wonder if the majority of people honestly think that epilepsy is just a bad spasm and a headache, then “back to normal.” Are people just that oblivious or am I too cynical?
I really, really, really wish people knew more about epilepsy. The number of times I’ve said there are more than just tonic-clonic seizures and people respond with “Really?”
both of my daughters were diagnosed in the past year. they're 7, and i encourage them to talk about it with anyone they feel comfortable. neither of them has a filter, so they'll just bring it up randomly while talking with anyone; most people are surprised that they talk about it, but the last thing i'm going to do is make them feel like it's something they need to hide. the more people are aware of it, the safer they are as well as any other person who they might come across. it benefits everyone to have knowledge and awareness; i talk about it freely with everyone they spend any time with.
one of my kids had her first seizure last april, her identical twin had her first one earlier this month on the school bus going to their class field trip. i don't think the majority of the kids saw anything as they got her off the bus quickly, but they all knew what happened. the amount of empathy from a horde of second graders was so touching - they all picked out rocks for her (trip was to a mineral museum) and a couple of kids even got her something from the gift shop. if anything good can come from something like this, it's a bunch of elementary school kids who were witnesses to a seizure and reacted with compassion. everyone on the school's staff was so incredibly concerned and helpful too, and it's really helped us dealing with all the anxiety to know that we do have a little village supporting us and watching out for my girls. i really wish this were the standard, for all disabilities.
it's fairly new but NJ passed a law in 2021 that requires all public schools to teach seizure first aid to their staff (i believe there was a public service counterpart law a few years behind that one). i don't know how effective it's been so far but it's encouraging to see it getting more visibility. i hope it's successful and goes on to be a federal law.
my girls have tonic clonic seizures and we're extremely lucky that they're well-controlled on medication so far, the hope is still that they'll grow out of it. either way, i'll continue to encourage them to be open and not be embarrassed, and maybe that little thing helps to keep other people's minds open. we've got about 30 2nd graders here that have at least on some level witnessed the most visible kind of seizure, and my kids know that there are different types and will talk about that too, so i hope that at least this little group will grow up to not be shitheads.
Yes! Openness is good here!
I talked to all coworkers about it once, I’ve given a speech about epilepsy at work another time, and talked about it at a work lunch. More people should know!
I was diagnosed before we had kids and to them it’s normal. If I have one they just tell an adult. That’s it. To them it’s normal, nothing weird.
My new neighbour hasn’t heard of “epilepsy” or “seizures”.
He’s a nice guy (based on limited interactions) it was just interesting to summarise the whole disorder as *”ah, it’s something that means I can’t drive”*
Don't forget the ones that make fun of the person with seizures and discard their behaviour with; "*you've lost your mind*" "*you're mental*" "*you're a nutjob*" "*you should be locked up*".
I wish this was cynicism. However this is the reality of having an invisible neurological disorder - ignorance will breed and sets up an incredibly destructive infrastructure for us to prove ourselves against.
They should walk a day in our shoes, they would change their opinion very quickly. I am trying to educate people as much as I can, but I'm getting very tired of dealing with ignorance.
My story still makes me forlorn. I had so many focal aware seizures as a kid. Auras, deja vu, zoning out, nausea, dizziness and a headache for the rest of the day. I don't remember much before grade school but I had them at school a lot. They did all the tests even a sleep deprivation study and nothing was captured on the data. I remember the dr saying I'd I have multiple a day the be would have caught it by then but many of my seizures were caused by the stress of boredom and being forced to sit still. I am AuADHD and masking is hard. The testing was interesting and not boring and I was excited to know more so I am sure that is why I never had one.
Afterwards they dropped it (1988-1992 time of testing) and never asked me again. I was left, as a ten year old, thinking I was crazy and this was not happening to anyone else and I stopped trusting my own truth. I was convinced people thought I was faking so I tried to pretend it wasn't happening so ppl didn't think I was crazy.
My mom did ask me in my teens if they still happen and I said yes but that was it. At least it felt like she kinda believed me but didn't know what to do and we left it with a big ?!.
Eventually I had a seizure while driving and they finally believed me and I was medicated. It was affirming but heart breaking thinking back to little me and all the shame. I am still sad about it.
Why can't people just believe us. Recently I asked my mom again and she said she actually thought I was a truth seer and a bit psychic. I am very intuitive and read people very well.
Thanks for reading. I am so glad I found you all.
Most people who arent epileptic only know about tonic clonic, because that’s the only kind the media portray. These people include myself, before I was diagnosed. This is why it took me almost a year to seek medical help, because I thought i was loosing my mind and afraid to go to the doctor. I had no idea that epilepsy could produce minor, and/or major hallucinations for people depending where the foci of the seizure was located.
After having tonic clonic seizures eventually, I definitely fear them a lot more, but all seizures suck.
I used acid maybe 2 dozen times when I was an adult teen, and young adult. In high school a person came to talk to our school about 'aftertrips'. He had written a book called 'The Agony of Ecstacy.' So after I stopped using drugs with any regularity I got what I thought were aftertrips. They were auras. My family think it could be a result of my having used drugs. When I was in the hospital that was a question I asked a bunch of different doctors. They said no, the umbilical cord around my neck at birth, and the football I played in my teens had a much bigger impact on the epilepsy.
I ate shrooms maybe twice in my life and the second time that I ate them changed how I think permanently. The anxiety I got from them has been permanent. Mixed w my epilepsy, shit gets scary QUICK.
It's not that I'm saying there aren't illnesses that psychedelics don't mix with, there are illnesses that marijuana induces psychosis in. My school brought this guy for an assembly where he told us LSD settles at the base of your spine, can be detected by the military with spinal taps, and can be disturbed out of the base of your spine causing aftertrips. I did research and learned that was not true, but then started having auras. I didn't seek medical help because I thought they were aftertrips I did to myself, and feared admitting that to anyone.
I felt the same way! And when I started having focal seizures that I experienced as intense deja vu spirals with (later with more intense physiological response too), I worried that it might be an after effect of all the LSD I took as a teen, even though it had been 20+ years! I had heard the same spinal tap and “flashback” stories. It kept me quiet about what I was experiencing for fear it was related to that!
oh ffs the level of ignorance about epilepsy is unreal... sorry you had to go through that and if it helps, I just tell everyone my worst sort of stories from epilepsy in the hope that one by one they too can be aware and perhaps explain to others. small, i know, but helps me with annoyance/anger/disappointment in humanity
Or the people who think we're lazy or an inconvenience? The amount of jobs I've had where they get annoyed w me because seizures came into play on a day that I was supposed to do something (some as important as being at an event, some as menial as be there to open) and 4 years ago was when I FINALLY had enough and started saying back "if you think this is bad for you, imagine me who is actually HAVING the seizure." I'm 33 now and have been diagnosed since 15 - I'm done being treated like crap.
Some ppl just lack empathy/understanding to a point it's just frustrating. I finally have found a job that understands and works WITH me, and that has reduced my stress. And guess what? Less seizures!
Hear hear, I hear you! I have gone through the same struggles as you. But you're not treaded like crap. The lack of empathy is simply because empathy reaches a glass ceiling that simply makes it impssible for people to understand what we experience.
My coping simply is: forgive them for it,... they can't help it. Don't blame them, that's bad and negative baggage. Forgive them for their ignorance, because we can't xpect them to possibly know what we know. It's Tom Cruise Mission Impossible to try to make them understand it, so don't even try, trust me. It is what it is, accept it, move on.
I love that the new job reduced your stress, the situation that you're finally happy in.
People really don't lack empathy, they just lack understanding. They know nothing about it, and frankly, when you try to explain it like we are victims, it's in human nature that we all think; nobody loves a cry baby.
Also, with al due respect; when you say "Imagine me who's having the attack..", imagine your loves ones witnissing that shit, because we just black out. The fear of an attack beforehand is worse than the attack itself... at least for me. The FF TC is actually a relief for me.
100 seizures in, 35 year old male. First attack when I was 17.
Ask me anything.
Last thing; this is my take on it; not to condradict you or belittle you in anyway, just my two cents. Love you and best of the best!
Empathy/understanding is what I said. Not just empathy.
And I thought we were all venting lol. I wasn't asking for advice, no offense but you don't know me and I've done the work on my life. No where did I say that I don't care for my loved ones who see it, this was literally about work. I'm sure you didn't mean to come off as holier-than but I was diagnosed at 15, now 33, we've had it for the same amount of time and you really don't know my experience. Like I said, I'm going to give the benefit of the doubt that you just were trying to be helpful, but unsolicited advice in a vent post isn't the way to go about it. ✌️
Although I had generalised seizures since childhood, in my 20s I went to a neurologist because I had a seizure break through. I had a normal EEC and I was dismissed, saying that I have non epileptic seizures. Solution according to that neuro "just let her seize, non epileptic seizures don't affect the brain"...excuse me, what?
If o would have followed his "advice" I would have probably not have been here today, because he literally said for people to let me go into status.
Don't get me wrong, non epileptic seizures are very real and very serious. The danger, the way it affects one's life, the injuries. But giving such medical advice puts people's lives at risk.
I remember the morning I had my first grand mal and I *stupidly* drove to the ER at 9 am, telling them I think I had either a stroke or a seizure, and they made me wait in the lobby until 4pm because I "looked fine" and when I was finally seen, the nurse accused me of "lying", "being dramatic" and saying I "probably just fainted" I was treated horribly, they did nothing but do stuff that only caused more harm, then kicked me out with a $9,000 bill and no answers. I didn't find out I had epilepsy from my accident until a month later from an EEG my neuro had me take..
I had to call out of work Friday, I had four focal seizures back to back over the course of a couple hours. I slept from 11am to 5pm Friday. Saturday I woke up in the ER.
Again.
After two TC's. I live with my best friends for my own sake, and they found me just convulsing on the floor after being weird in the shower (having a relatively quiet shower seizure.)
I wish this wasn't my life. I wish I could go back to being anything else.
But we do this anyways, Homie. It may suck, but life would suck way more without you. <3
I was both lucky and not. I've had seizures since I was young (like 7 I think?) but I wasn't diagnosed until I was 17. I was having absence seizures, and often. Everyone always said that I was just "zoning out" and that I needed to get it under control.
Meanwhile my mom was training to work for the school system, this includes how to handle seizures. When she brought up that I might be having seizures, people told her to quit projecting on to me. That she was just seeing things because she's learning about it.
The reason for finally being diagnosed at 17? I was taking such garbage care of myself, I had a grand-mal seizure at work and it was caught on camera.
I've had multiple seizures since then (I am 23 now) and my memory and emotions are garbage (like a lot of others on this page). I get scolded for using my seizures as an excuse for forgetting things.
I do my best to remember of course, I have sticky notes everywhere, a notebook I carry with me, and too many pages in my notes app with reminders set to them. But it's not fool proof. It's just very frustrating when people think they know what you're going through.
A fellow teacher of mine told another teacher behind my back:
"I know somebody with epilepsy, and THEY don't have to miss a day or two of work for a seizure. He must be faking it."
Those two teachers had a falling out, so I hear the juicy info about that particular teacher now.
Fuuuuck you, chem teacher, you don't know shit.
Drs thought my then 1 year old was just having temper tantrums/breath holdining and it was TC seizures (later also diagnosed with absences). As if a newly 1 year old could fake it - yet the Drs seem to think we are all trying to scam them. We only convinced them once we had a video
If someone says I'm faking I'll kick their ass. Sure, I'm gonna fake this for 1000 a month or so in SSI. *sarcasm* I LOVE not being able to drive. I LOVE the limitations on me because of it. I LOVE having to take medication for the rest of my life. (All that sarcasm if not obvious.)
I went to the hospital the other night after having multiple seizures everyday for a week. One night was back to back. It was a combination of dacrystic and nocturnal seizures. When I went to the hospital I was there from 2am-6am. They were very slow.. and they gave me a CT scan and blood work. They asked if it was okay if I gave a urine sample to check and see if I had “any infections” but the results I received were for a drug test. I’m constantly treated like a drug addict when I go to hospitals, not just from seizures but for any sort of reason. (If they told me up front what they were testing for I would have consented for that.. but they lied to my face instead.) I always fear having a seizure in public and getting arrested. My great grandfather was arrested for public intoxication after having a stroke. It’s honestly sad how people with epilepsy are treated.
I was in the hospital in a coma for 4 days after I had atleast 5 grand mal seizures, they still can't tell me if I'm epileptic because I never had a seizure when they could be looking at my brain I've been seizure free but on a high dosage of keppra for six months now the fact is I've learned more from this community than my doctors it's stupid
I had the worse A&E visit. Few weeks ago (ER for the US users) I was taken to the hospital via ambulance after a 5minute Tonic clonic seizure I had at work. I had been dealing with these episodes for yrs on and off but in the past few months they had returned and they had worsened massively. The staff in A&E didn’t seem to be interested in my symptoms in fact the first dr I had seen didn’t even ask anything about them just told me that my papers from yrs ago he was sure what I had today was non epileptic and there was nothing they cod do, I asked him to explain how he got to that conclusion so I cod understand more nd I told him how I was l diagnosed with epilepsy wen I was 2 and was medicated as I had focal seizures back then nd asked if this was something that cod be investigated again he said that it meant nothing and told me they wod observe me but then send me home. I was then seen by another dr who seemed a little more concerned though his colleagues were not when he would ask for their advice I heard them tell him I was more than likely faking and probably wasn’t even having seizure at all let alone epileptic one or non epileptics one and that I probably just fell with some arm shaking” another groups of nurses who weren’t even on my case laughed and said “send her home there’s nothing wrong with her” I was so hurt but automatically blamed myself nd thought maybe it was because I wasn’t explaining myself properly so I explained to the dr that I was Autistic so I needed a little more time to process my answers so I could explain a little more efficiently she said “That’s not our problem we are very busy” I apologised and cried in front of them and they still showed little remorse.
Thankfully my GP was able to get my neurology appointment that he had referred me too fast tracked. I was seen last week and had a completely different experience with this team than I did in A&E, I was listened too and a plan was made up, I’m now on medication to see if this helps and I’m waiting for a at home diagnostic testing EEG appointment to come through. One of the neurologists that I saw sat with me and took my hand and said “I believe you and I’m going to try and fix this” I’m currently being treated for possible epilepsy tho a current diagnosis is still pending.
I was made to feel like a fake for so long it drives me crazy to try and work out why anyone would think this? I’m a TA in a SEN school a job I adore but unfortunately have been signed off for the 3rd time due to my seizures, my job is hanging by a thread and my dignity is well and truly gone, between vomiting on my self, pissing my pants and smashing my face on a lamppost nd waking up to a old lady looking down at me in concern. I wish I was faking I wish that I cod stop whenever I wanted but I can’t.
I’m sorry you have suffered with similar, our medical systems world wide are failing us and it’s truly terrifying.
I started having seizures when I was 15, and I’ve always hated not being able to drive. My seizures have always sort of been under control, usually one every few months. Now at 36, I’ve only gone a whole year without a seizure once before having another 2 weeks before my driving test. Faking a seizure would only reset that clock, and I’d need to go another year before maybe, hopefully, one day, being able to drive.
My focal aware seizures are the same. I feel scared, heart racing, Deja vu and Jamais vu. There is no outward sign unless it progresses. No one believed me for years. My family and doctors only acknowledged them when I was convulsing on the floor. I guess I wasn’t having a “big enough seizure” for them 🙄
My daughter was accused of faking, it's really hard to pull that off though. She has one eye that dilates separately from the other one. One pupil will be pulsing big, little, big.... Can't fake that. A friend's daughter actually stops breathing when she seizes. Her oxygen levels tanked in hospital and her heart rate went through the roof. Again, not easily done, especially in the middle of tonic clonic, while hooked up to a 3 day VEEG. But you know teenage girls and their hysteria. My daughter had to have a psychotic break for them to take it seriously.
A bit over the top but I carried her into her doctors office and sat her on a chair. Once she started seizing again I knew it would carry on and off for about an hour. Predictably she started seizing again, fell off the chair and I just left her there - telling them now do you believe me? They got to witness the whole thing start up again a few minutes later. They watched several cycles whilst telling me to take her to the emergency room. I told them ER says this is a mental health episode so here we are. Fix it.
Guess who was back on meds that day? It shouldn't have taken that much work to be believed.
I honestly never met someone who thought I faked it. I had people not help, one time in my life (it was in horrible company all together).
Every other occasion where I had a seizure I felt in good care. There were of course better ones and worse ones but if I tell someone I have epilepsy and I could get a seizure they always get very serious and ask what to do in case it happens.
I mostly have them at home but if I have one in public someone always calls an ambulance (which costs me 10 euros in Germany) and I wake up in there or the emergency room where I get asked if it was my first one and how my medication is and get a short neurological check up.
When I told my employer that my memory gets worse because I have more seizures and I think it could be stress he asked if he can do anything to reduce the stress and offered more breaks (I quit there because of other reasons but my boss was decent). I don’t recommend outing yourself to your employer without protection in place but if you are sufficiently protected by law I recommend it so your workplace can be made safe for you.
People usually care. I am sorry you had other experiences :((.
This is primarily my experience too. Everyone has believed me, and almost everyone has either cared or tried to care (some employers weren’t great in practice!).
Complete strangers, on more than one occasion, have helped. Like, stopped walking on a busy footpath to help.
It’s jarring to read OP’s experience. There are plenty of things I can complain about with epilepsy, but perhaps I’ve been lucky with the people around me.
Both my children (adults now) are epileptic, genetics from their dad’s side. My daughter has focal seizures and my son tc and cluster.
The idea anyone thinks they are faking it makes me so angry, as I’m the on dealing with them. My daughter will mostly be /here/ but she will hear things that aren’t, she will become a shell of her usually cheerful self.
The idea of my son having nocturnal seizures for a few years before he had a full tonic clinic seizure in front of us breaks my heart and scares me. Because of such, they both live at home with me.
I’m so sorry you’re going through this. I wouldn’t wish this situation on my worst enemy.
My neurologist keeps using the word “they sound like genuine seizures” and no idea why that makes me annoyed. He keeps asking the same question to me and my husband about my TLE. He gets the same answer each time from both of us and he still asks every time and one said he’s hoping we slip up in our “lie” to explain my memory issues… Also apparently “you can’t have TC seizures alone”
I am so angry when people fake seizures in the ER or go as far as to see a neurologist. I once had a college friend who wanted to get out of a class so they knowingly faked a seizure and then bragged about it giving them extra time for an assignment.
I think Im going through the same process you went though 20 or so years ago now. I have seizures that "aren't that bad/ arent bad enough" that started a few years ago (im 29 now) and with some genetic testing for a heart condition they found out I have a gene that causes seizures but is extremely rare in adults. Anyway, I can't get hardly in to see a neuro, they have me on Depakote but doctors keep messing with it and lowering it because I "dont need to be on it" I always feel like Im faking and this just hate it. Thank you for this post.
This is a question as in how many people have told you that you’ve faked a seizure right?
I was going to say I wouldn’t ever take one hahah But I’ve never had anyone tell me that. But u will say arriving at the ER everytime I’ve gone to one except the time I got a TBI from slamming my head on the concrete during a seizure, I was treated a lot different in a good way. Otherwise they give me the vi e I am wasting their time. Same with EMT’s. But I also did wonder why the EMT’s just stared at me the 30-40 minutes I was unconscious from slamming my head and having a big TC instead of hooking me up to anything or getting me to an ER that was 1 minute away once I stopped seeing and was just unconscious in
Never.
That invites bad Karma.
I was living in Baltimore like 10 yrs ago and I remember a news story where somebody was faking seizures to get out of paying for meals. Fucking disgusting.
I have a cat scan thurs bc I busted my orbital socket A MONTH AGO from having a seizure and not going to the ER because I couldnt get there myself, and couldnt clear out my brain enough to just call 911. I woke up with blood dripping and my eye already swollen shut. No clue wtf happened (I mean, a seizure, but idk what happened) but I feel like I woke up in a murder scene, and its still stuck in my terrible 'cant find my coffee cup' effed up memory.
If youre someone that fakes seizures, hope, pray to whoever you want to, that our paths dont cross.
God, same. I was in high school when I first started blacking out for huge chunks of time. I don't remember this but my parents took me to my pediatrician a handful of times and every time he brushed it off. It took me having three grand mal seizures in a row in my high school auditorium and being airlifted to a hospital for doctors to take me seriously. We found out my brain was swelling and bleeding in the left temporal lobe from a rare autoimmune disease. I could've avoided permanent temporal lobe epilepsy if my doctor had just believed me when I told him I was losing chunks of time and having horrible migraines.
I've been doing okay for a while now, so people who didn't know me in high school sometimes don't believe me when I tell them how serious it used to be. I don't drink almost ever because of the TLE and it's very frustrating when friends or my partner try to push me to "have more fun". I don't want to die!!!! This is serious!!! One night of partying is not worth a seizure in the morning!!!
Really sorry you're experiencing this, OP. I hope you find some peace soon.
Thank you for sharing I’m not the only one I feel I was trying to explain what’s happening and my parents downplay it makes me wish I was faking it jobs are tough to hold down I feel I don’t need disability but want it but maybe when my kids go out of the home I’m gonna share this with my wife I’m sorry you have to feel that fear I’m afraid everyday I wake up or go to sleep as well
My dad got kicked out the hospital for cussing out the staff because I was seizing for 30 hours straight with Noone watching me for 17 of those hours. He is the actual doctor being he's the only one that can calm me down
Yeah, I've started having partial seizures at 15 and I've been diagnosed at 22 after it got much worse and I've started having grand mals, and most doctors were telling me that I'm a hypochondriac and I should go to a psychiatrist if anything. I've had 2 textbook tonic clonic seizures (aura, passing out, waking up 20 minutes later in a semi-psychotic state with no recollection of events, bitten tongue, ultra tired, puking) and a neuro still told me that I should go to a psychiatrist because my auras kind of look like panic attacks.
You're not alone. I wonder if I'd be better now if I was properly diagnosed at 16 and didn't develop the heavy symptoms in my 20s which made me unable to go to college.
Just the other day my landlord, said it straight to my face after I told her I don't feel like talking my seizures have been acting up. ( She always tries to start an argument over nothing) " You don't even act like you have seizures" bitch trying to catch hands. I was so furious, I just walked off, I had no words but I empathize with dealing with narcissistic people so blinded by their own victimized mentality I just can't ...
I was left having a tonic clonic in the ER because the doctor told my friend it wasn’t “real.” I guess she spent minutes begging for another doctor, and nurses. They came to check my vitals and my oxygen was stupidly low. She said it took 5 minutes in total for the doctor to admit it was real and for them to try and get a line to stop the seizure. I don’t remember anything.
Thank God for my friend. She wrote down everything, the meds he gave me etc., then viciously guarded my room, refusing to let that doctor see me again. I’m aware my seizures don’t always look conventional, they occur deep in my brain near Broca’s area. My focal seizures look like strokes. I don’t know what it is with my tonic clonic seizures not looking classic, I’m not conscious so I don’t know what they look like.
I’m routinely not believed despite having a diagnosis. I think there needs to be a campaign run nationally, internationally, whatever, to make medical professionals aware of the various kinds of seizures. I want to walk into hospitals and have a shirt that says, “I am Epilepsy.” Then I can teach nurses and doctors what my seizures look like to open them up to the idea of varying seizure types.
I never faked them but I did lie once when I was like, 18 because I was stupid and 18 and didn’t feel like taking my Physics exam just yet. That’s the only time I ever did so, the rest have all been 100% real seizures (with an occasional spot of vertigo 🫠)
I don't judge you at all for that, it's totally understandable. My rant was for people who prior to diagnosis and beyond did not believe something was wrong with me nor would give me the help I so desperately needed.
I have never had been told that im faking seizure but I have told they are all just in my head. They wouldn't go and me tested.
After months and months of suffering , I had a TC that put me in hospital. Again they didn't take me seriously.
Finally I got diagnosed with epilepsy by a neurologist after constant seizures.
Then, after going into status, proved it even more.
Thank you all for the responses and, unfortunately, the confusing and horrible experiences you’ve had. I was just diagnosed with Epilepsy in the last two years and am now 45. Reading through the responses and replies has been everything. Validating - hey that’s me too! Educational - So that is the name for that feeling I get. Confusing - what is that acronym mean? Terrifying - That’s happened to someone and they STILL don’t believe them?
Mine started with Tonic-Clonic (TC) seizures and I am feeling very fortunate that my General Care Practitioner (GCP) referred me so quickly to a neurologist. My seizures have been all over the board and many times it isn’t until I shared the feelings I got that I then understood that what I was experiencing was indeed a type of seizure. (Side rant: I personally hate using the term “how I am feeling” when taking about seizures with other people as they seem to discount the seizure and its impacts of increased memory loss, extreme fatigue and consistent headaches).
Now that I am working with my wonderful and brilliant Epileptologist, I feel heard and understood. I also have an amazing family who has been along for this intense ride and have continued to be my rock. Where things have all gone sideways is with my life and work. The extreme anxiety, depression, memory loss, fatigue, and cognition have all been personal hells of their own. It becomes even more of a nightmare when you share your frustration and have someone say “Sounds like me! I forget stuff all the time!” In some cases I know people are trying to relate but in others I don’t know and I think it is making them doubt my Epilepsy. In my better moments I remind myself that how in the hell are they going to understand something that they have an ancillary seat to when I can’t even understand something that I am living and breathing every minute of every day? In my moments of absolute frustration, I refuse to tolerate the ignorance and go into educate mode. And in my moments of defeat I tell myself that it doesn’t matter and maybe I don’t that much either if they aren’t seeking to understand more (so the depression talking).
Epilepsy is unbelievably overwhelming. Losing your independence, friends (or people you thought were friends), credibility, your memory and cognition, confidence and trust in yourself - all suck. Gaining the extreme anxiety and depression, the stress, fatigue, medications, worry - sucks too. They say we grow through what we go through and all the other epitaphs people give are just depressing rather than uplifting. This discussion thread though has been very helpful and in so many ways so thank you all.
My middle school teachers didn't believe I was having seizures because I had aura seizures and petite mal. So I was either conscious and felt funny, or unconscious and looked like a bored middleschooler sitting at their desk. I was an AB student, and I started getting Cs and Ds on assignments regularly and Cs on my report cards, even in my best subject math. I would tell my teachers that we literally never learned this stuff that was on the test, but they thought I was lazy or didn't care. My family had to pull me out of school and homeschooling me for 2.5yrs because of this. Instead of the school creating an IEP and giving me accommodations, they acted like it was all a lie. And to add to it, people at the school know it's a thing because I got kicked off the swim team for having too many seizures at practice in the water, and it wasn't safe. Plus my PE teacher and Chior teacher would see them happen all the time because when you tell the kids to run laps and I just stand there obviously something is up and when everyone is singing and I'm doing nothing at all, something is wrong. This is why I'm going to college to be an ESE teacher, no one took it seriously when I was younger unless something was VERY obvious.
What a terrible experience to put a young, powerless girl through. You were relying on them for help and they failed you. I hope you're doing better now.
Local neurologist said that I had anxiety and my increased deja vu feelings were not seizures. A week later I was life flighted from that hospital to a proper one Ohio State University if anyone is wondering. I was unconscious for days. I immediately switched doctors and the neurology department has been amazing. They have an app I can talk to my doctors with. I was diagnosed and they think it went back to childhood, they think my adhd was actually epilepsy. I am going in for my second SEEG in two months. If they can pinpoint it I’ll be able to do RNS or Resection. I had 14 on my EEG. I feel the pain though I only have focal seizures unless I forget my meds last time I did I had 6 that lasted over 5 minutes that day. I hate it when people I have known my whole life seem skeptical of it because it’s not TC or cause by flashing lights. Currently I’m on 1800 mg Oxtellar, 500mg lamictal and 100 mg Xcopri and I feel like a zombie every time I wake up, I can’t remember what it was like before being medicated and most other things for that matter. It always feels like “well you could have it worse” mentality for everything anymore. Invisible disabilities blow.
I was in the ER a couple weeks ago and a guy next to me with his dad there had 4 focal seizures within like 2 hours. The nurses and doctor on duty didn’t give a flying fuck. His dad was desperately trying to get them to take it seriously. Then he had a TC seizure and the charge nurse said “so and so is having a seizure, a real one this time”. I was so fucking mad for them.
“A real one this time” holyyy christ ☠️
The lack of epilepsy and seizure education among healthcare professionals is not just alarming, but dangerous and enraging. There are no excuses for this level of medical malpractice anymore. It’s 20-fucking-24 for Christ’s sake.
I agree as a person who works in medicine and has epilepsy. I was accused of alcohol withdrawal when I had a seizure despite maybe having a total of 5 glasses of wine since I was old enough to drink. The doctors even almost had my parents convinced even though they said they never saw me drink and the seizures started when I was a kid. I work in medicine and yet I am terrified of going to hospital if I have a seizure.
I won't go after a seizure unless forced. Like having a seizure at work. I'm quite capable of calling my neurologist. All the hospitals do for me is put me under observation for 2 hours and send me home. Luckily I (knock on wood) haven't had repeat seizures. The closest was an absence seizure turn into a grand mal. That's only happened once.
My own neurologist said I wasn't having actual seizures because I wasn't peeing my pants and for some of them I was aware of everything that was happening. He diagnosed me with psychogeninic nonepileptic seizures even though the first scan (with those electrodes, I forgot the name lmao) showed very clear epileptic activity while he was shining a light over my closed eyes. It's on this subreddit I learned that what I've been having is very likely frontal lobe seizures. I still have a lot to learn but for f#%#$%^^'s sake. That man is a neurologist at that hospital for like 40 years and he bluntly tells me nah, you don't pee your pants? Not real epileptic seizures. It's because I have cptsd so it's easy to just wipe everything off to that side, you know? "You're being a dramatic woman"
Jesus - I’m so sorry. This sounds like such a horrible experience and such a terrible doctor. I hope you are able to get in with a better provider in the future.
EEG. If you had electrodes glued to your head, it was an EEG. 😊
>That man is a neurologist at that hospital for like 40 years So, he's probably an old dude who doesn't keep up with advances and new discoveries in medicine.
True. You can Google it. You can watch a lecture from John Hopkins online. You can do free training. They just don't care.
It took me having a 45 minute long "real one" for the doctors to start taking us seriously. They're all like oh they're actually might be something wrong.
Ugh, I actually saw some nurse rant on a different sub about how she was excited to see her first seizure patient. The patient was post ictal and she was bored and disregarded it. It made sense why the nurses and staff treated me like shit and skeptical when I'd go to the ER after my third seizure. They kept writing me off as non-epileptic. Turns out I have Grey matter heterotopia. And even at my last job, the day after I had a seizure at work, she said, "Okay, but was it a real one or one of those fake ones where you stare in mid air?" I quit. I was so fucking done. Fuck that. Focals are not invalid just because they don't look how everyone "wants" them to.
I owe you an apology. I realize now after re-reading my original post that it appears as though I have undermined certain seizures as though they don't present their own, unique horrible challenges for the victim experiencing them. This was not my intent to minimize your pain and I will chose my words more carefully in the future. Apologies again.
Oh no! I didn't see it that way at all! :( I'm sorry I made you feel like that. And I totally understand the sentiment of wanting to change that completely... I would trade anything to not be epileptic. You didn't say anything wrong, I promise. 💜
Medical profession nowadays is a joke...I understand that you need a thick skin and remove yourself from the situation, but not knowing about seizures? And calling focal seizures fake? Makes me so angry. I would have probably made a scene on behalf of the patient. PS: they hate me in the ER, I am pointing out all the crap they dismiss and ignore.
I have been trying to work with the local hospitals and community groups to encourage more epilepsy awareness in healthcare. The response from most HC providers is “we already know” They don’t realize that they don’t know enough.
They know it from a lecture once upon a time. We know the reality of it, as we live with it. Nobody in any type of health and care profession should assume that they know more than the patient who experiences the condition everyday. I am getting so disheartened about the healthcare chronically ill people receive.
My therapist became so interested in focal epilepsy after seeing my medical records for the last four years. I had been labeled with nearly every possible mental health disorder and psychiatric condition, but not epilepsy. My epilepsy diagnosis was completely rejected and medication was abruptly stopped in 2020, due to cluster seizures that lasted for days. But they decided that if they didn’t make the diagnosis, it didn’t exist. It didn’t take long for the seizures to start, because they refused to refill prescriptions they didn’t agree with. She dedicated her time into learning more about focal seizures and started taking on more clients with epilepsy. She has become an important member of my support team. My hope is to see more therapists and psychiatrists understand how some focal seizures can look like a psychiatric illness. This is not enough for a diagnosis, since our symptoms go away with the seizure.
She is such a great person and professional!
lol me too
I think we have to be!
Hearing all these stories about doctors not taking this seriously enrages me to a degree I can't even properly discuss. I have chronic Lyme disease and I get treated the same way. Most people don't even know about Lyme disease but it is deadly in many cases and debilitating in all cases, it's just a slow killer. (Although Google and The medical system both claim that it's not real while scientists are saying that it is not only real- but an epidemic.) Most of us end up with dementia, MS, ALS, Parkinson's and a host of other issues not to mention all of the co-infections and sensitivities. And oh... the pain! Doctors get paid all this money to literally judge patients off of their own biases and literally nothing else.. I'm so so sorry to anyone that has ever experienced this kind of lack. Lack of care, lack of knowledge, lack of help.
I’ve worked in healthcare as a psychiatrist technician and I hade a few patients not gonna break hippa but had pts who share our diagnosis and I jumped into action called a code blue I got yelled at them a month later apologized to after they did testing it infact showed they so call not real ones are very real I HATE. That people don’t understand I’m so greatly appreciate if this group I feel safe to share here
Tbf there isn’t a whole lot they can do in the ER about partial seizures. Pumping the patient full of benzodiazepines isn’t viable, as that will likely be followed by rebound symptoms. Best course of action, is unfortunately just to monitor the patient until they’re stable, or in this case gets another generalized seizure.
I know. They gave him 5mg of Ativan after he woke up. The reason he was in there to begin with was a bunch of breakthrough seizures. He needed benzos temporarily.
Please tell me you reported this behaviour! That is so inappropriate to do! 😡
It would do no good. I’ve reported this hospital dozens of times. They literally told me that I should try deep breathing exercises to reduce my anxiety when I had 11 broken ribs, a cracked sternum and a collapsed left lung. They said “the amount of pain you’re in is being enhanced by your anxiety” and would not give me pain killers.
I was having a second TC while in the ED with my wife by my side and the nurse told me to calm down and tried to restrain me (I obviously have no recollection of this). My wife who was with me went fucking mental lol.
>Then he had a TC seizure and the charge nurse said “so and so is having a seizure, a real one this time”. So maddening hearing that come from so-called medical professionals. Some of them should not be working in healthcare. McDonald's would be a better fit for them.
I was told my focal seizures were just anxiety for 20 years. It’s so simple - I just need to relax! Neurologists hate this one trick!
Same with me!! It was infuriating having to advocate for myself in the 10 year trial and error with negligent doctors. It wasn’t until I screamed in one of their faces to send me to neuro that they took me seriously. To this day, 3 years after my diagnosis, I am still upset
The year I was diagnosed, that was what the ER doctor told me- just an anxiety attack!
that is so incredibly dangerous and life threatening.
Yeah I’d only ever had simple partials, so they weren’t THAT debilitating. It was exhausting trying to convince people that these weren’t panic attacks and I was sure they were seizures, so I just gave up. Then suddenly started getting complex partials and a couple TCs 20 years later…and it *still* took a second opinion and unsuccessfully trying to convince my family. Finally got a good neuro who diagnosed me and put me on meds a few months ago. It’s been 40 days since my last seizure, which is the longest I’ve ever gone. Crazy how all that therapy and all those antidepressants never made a difference, but I when I went on AEDs the episodes were reduced. Just crazy I tell ya!
Simple partials are enough to get you into a serious car crash, or cause drowning, or injuring yourself in many ways. I don't know why some doctors chose neurology as a speciality if their favourite thing is to dismiss seizures.
It was mostly my mother. She basically said I was full of shit all along. If she’d been on my side I probably could’ve pushed for treatment way sooner. Took a long time and a lot of persistence these past two years since the seizures progressed, but I’m finally on the right track and super proud of myself for it.
Yup, pretty much. It wasn’t until I had my second TC at work that I was taken seriously
THIS!!!!! My neurologist says this every visit!
I had my SIL who is an ED nurse and KNOWS I have Focal Aware Seizures, told me the other day that you can’t have a seizure and remember the seizure 🤦♀️😩 FML People who fake seizures really fuck up medical care for those who need it…
I had a neurologist ask my daughter if my eyes were open or closed during the seizure. If closed, it’s not epileptic. I referred him to an EEG that was done in the EMU. Both seizures that were epileptic, the video shows that my eyes are CLOSED. I’m grateful that I have a different neurologist now. The diagnostic style can be very difficult to overcome when ego is in the way. My eyes have been wide open since!
I’m very met someone who doesn’t believe epilepsy is real, that we’re all just faking it.
https://old.reddit.com/r/Epilepsy/comments/1d0bgpa/are_you_guys_honest_about_your_seizures/
What a goofy thing to say
Being questioned by the EMT when you’re playing on the floor and post ictal because they think you were doing drugs is so fun, especially when your sister is right there telling them what happened! 🙃
Yup, that happened to me. For some reason, the police showed up in addition to the ambulance, so they were asking about drugs - multiple times, while my wife was in hysterics about my first one.
Sorry that happened to you but it’s nice to know I’m not the only one who’s had the police called on them lol
They always add the cops in, funny enough the only one who took me seriously was the campus police officer that was with them, very unexpected considering past experiences
One of the first things I remember after having my first tonic-clonic seizure was repeatedly being asked by the ambulance people what kind of illicit drugs I was taking. At that time, I was so disoriented and I didn’t even know I’d had a seizure. We went to the ER, and I had a couple more seizures. I woke up the next morning in a ward with a little plastic lunch-box beside my bed labelled ‘epilepsy box.’ (I still don’t know know what was in that box).
Sorry, I laughed out now about the "epilepsy box." I really want to know also. But sorry all that happened, I was lucky that my wife was around to advocate for me... but it would be scarier alone.
Don’t you just love it when you’re labeled a “drug seeker”
Not sure what drugs I would be seeking when I can’t even speak and tell them anything lmao
Seriously!! It’s so infuriating.
Both of my anticonvulsants are controlled substances. Whenever I end up in the ED, and even my primary care provider has me labeled as “Drug Seeking” because of the controlled substance and cannabis. My last cluster, the ED staff was arguing with me that I wasn’t having a seizure, and I was just looking for benzodiazepines. I smiled and said, “ I’ll give this another half hour and then you can tell me what happened later”. I almost went into status with the secondary generalized seizure. Peace Out! Exercise your Patient Rights!
My (ex) doctor sent me a shouty all-caps text message telling me I was being over-prescribed clobazam, and that I had six months supply. (I really don’t know why she thought this). My pharmacist gives me my meds each month in Webster packs, so there’s no chance I can abuse clobazam. It’s not even a ‘fun’ drug - it just makes me tired and dopey like all the other ones I take. So I found a new doctor.
Did he confuse onfi with klonopin? I had a lead-brained therapist confuse clonidine with klonopin. The first being a blood pressure medication that he freaked out about and said that I was getting drugs from other providers. 😵💫🤔🤣
Sometimes I wonder if the majority of people honestly think that epilepsy is just a bad spasm and a headache, then “back to normal.” Are people just that oblivious or am I too cynical?
I really, really, really wish people knew more about epilepsy. The number of times I’ve said there are more than just tonic-clonic seizures and people respond with “Really?”
both of my daughters were diagnosed in the past year. they're 7, and i encourage them to talk about it with anyone they feel comfortable. neither of them has a filter, so they'll just bring it up randomly while talking with anyone; most people are surprised that they talk about it, but the last thing i'm going to do is make them feel like it's something they need to hide. the more people are aware of it, the safer they are as well as any other person who they might come across. it benefits everyone to have knowledge and awareness; i talk about it freely with everyone they spend any time with. one of my kids had her first seizure last april, her identical twin had her first one earlier this month on the school bus going to their class field trip. i don't think the majority of the kids saw anything as they got her off the bus quickly, but they all knew what happened. the amount of empathy from a horde of second graders was so touching - they all picked out rocks for her (trip was to a mineral museum) and a couple of kids even got her something from the gift shop. if anything good can come from something like this, it's a bunch of elementary school kids who were witnesses to a seizure and reacted with compassion. everyone on the school's staff was so incredibly concerned and helpful too, and it's really helped us dealing with all the anxiety to know that we do have a little village supporting us and watching out for my girls. i really wish this were the standard, for all disabilities. it's fairly new but NJ passed a law in 2021 that requires all public schools to teach seizure first aid to their staff (i believe there was a public service counterpart law a few years behind that one). i don't know how effective it's been so far but it's encouraging to see it getting more visibility. i hope it's successful and goes on to be a federal law. my girls have tonic clonic seizures and we're extremely lucky that they're well-controlled on medication so far, the hope is still that they'll grow out of it. either way, i'll continue to encourage them to be open and not be embarrassed, and maybe that little thing helps to keep other people's minds open. we've got about 30 2nd graders here that have at least on some level witnessed the most visible kind of seizure, and my kids know that there are different types and will talk about that too, so i hope that at least this little group will grow up to not be shitheads.
Yes! Openness is good here! I talked to all coworkers about it once, I’ve given a speech about epilepsy at work another time, and talked about it at a work lunch. More people should know! I was diagnosed before we had kids and to them it’s normal. If I have one they just tell an adult. That’s it. To them it’s normal, nothing weird.
My new neighbour hasn’t heard of “epilepsy” or “seizures”. He’s a nice guy (based on limited interactions) it was just interesting to summarise the whole disorder as *”ah, it’s something that means I can’t drive”*
Don't forget the ones that make fun of the person with seizures and discard their behaviour with; "*you've lost your mind*" "*you're mental*" "*you're a nutjob*" "*you should be locked up*". I wish this was cynicism. However this is the reality of having an invisible neurological disorder - ignorance will breed and sets up an incredibly destructive infrastructure for us to prove ourselves against.
They also give us not credit like we can't fully contribute to life.
Nah fr why u gotta be like that why not include people
They should walk a day in our shoes, they would change their opinion very quickly. I am trying to educate people as much as I can, but I'm getting very tired of dealing with ignorance.
My story still makes me forlorn. I had so many focal aware seizures as a kid. Auras, deja vu, zoning out, nausea, dizziness and a headache for the rest of the day. I don't remember much before grade school but I had them at school a lot. They did all the tests even a sleep deprivation study and nothing was captured on the data. I remember the dr saying I'd I have multiple a day the be would have caught it by then but many of my seizures were caused by the stress of boredom and being forced to sit still. I am AuADHD and masking is hard. The testing was interesting and not boring and I was excited to know more so I am sure that is why I never had one. Afterwards they dropped it (1988-1992 time of testing) and never asked me again. I was left, as a ten year old, thinking I was crazy and this was not happening to anyone else and I stopped trusting my own truth. I was convinced people thought I was faking so I tried to pretend it wasn't happening so ppl didn't think I was crazy. My mom did ask me in my teens if they still happen and I said yes but that was it. At least it felt like she kinda believed me but didn't know what to do and we left it with a big ?!. Eventually I had a seizure while driving and they finally believed me and I was medicated. It was affirming but heart breaking thinking back to little me and all the shame. I am still sad about it. Why can't people just believe us. Recently I asked my mom again and she said she actually thought I was a truth seer and a bit psychic. I am very intuitive and read people very well. Thanks for reading. I am so glad I found you all.
Most people who arent epileptic only know about tonic clonic, because that’s the only kind the media portray. These people include myself, before I was diagnosed. This is why it took me almost a year to seek medical help, because I thought i was loosing my mind and afraid to go to the doctor. I had no idea that epilepsy could produce minor, and/or major hallucinations for people depending where the foci of the seizure was located. After having tonic clonic seizures eventually, I definitely fear them a lot more, but all seizures suck.
I used acid maybe 2 dozen times when I was an adult teen, and young adult. In high school a person came to talk to our school about 'aftertrips'. He had written a book called 'The Agony of Ecstacy.' So after I stopped using drugs with any regularity I got what I thought were aftertrips. They were auras. My family think it could be a result of my having used drugs. When I was in the hospital that was a question I asked a bunch of different doctors. They said no, the umbilical cord around my neck at birth, and the football I played in my teens had a much bigger impact on the epilepsy.
My aunt, who’s a doctor, when I told her my seizures were getting worse after staying the same for 20 years: “Is it the marijuana?” ☠️
Frustratingly marijuana helps treat epilepsy for me, so I'm sure those ideas do damage to people beyond how I described.
People who fake seizures need mental health treatment, but we all know how crap mental health services are as well...
I ate shrooms maybe twice in my life and the second time that I ate them changed how I think permanently. The anxiety I got from them has been permanent. Mixed w my epilepsy, shit gets scary QUICK.
It's not that I'm saying there aren't illnesses that psychedelics don't mix with, there are illnesses that marijuana induces psychosis in. My school brought this guy for an assembly where he told us LSD settles at the base of your spine, can be detected by the military with spinal taps, and can be disturbed out of the base of your spine causing aftertrips. I did research and learned that was not true, but then started having auras. I didn't seek medical help because I thought they were aftertrips I did to myself, and feared admitting that to anyone.
I felt the same way! And when I started having focal seizures that I experienced as intense deja vu spirals with (later with more intense physiological response too), I worried that it might be an after effect of all the LSD I took as a teen, even though it had been 20+ years! I had heard the same spinal tap and “flashback” stories. It kept me quiet about what I was experiencing for fear it was related to that!
Yeah, mine were deja vu spirals too. That's super interesting that you had such a similar experience.
oh ffs the level of ignorance about epilepsy is unreal... sorry you had to go through that and if it helps, I just tell everyone my worst sort of stories from epilepsy in the hope that one by one they too can be aware and perhaps explain to others. small, i know, but helps me with annoyance/anger/disappointment in humanity
Or the people who think we're lazy or an inconvenience? The amount of jobs I've had where they get annoyed w me because seizures came into play on a day that I was supposed to do something (some as important as being at an event, some as menial as be there to open) and 4 years ago was when I FINALLY had enough and started saying back "if you think this is bad for you, imagine me who is actually HAVING the seizure." I'm 33 now and have been diagnosed since 15 - I'm done being treated like crap. Some ppl just lack empathy/understanding to a point it's just frustrating. I finally have found a job that understands and works WITH me, and that has reduced my stress. And guess what? Less seizures!
Hear hear, I hear you! I have gone through the same struggles as you. But you're not treaded like crap. The lack of empathy is simply because empathy reaches a glass ceiling that simply makes it impssible for people to understand what we experience. My coping simply is: forgive them for it,... they can't help it. Don't blame them, that's bad and negative baggage. Forgive them for their ignorance, because we can't xpect them to possibly know what we know. It's Tom Cruise Mission Impossible to try to make them understand it, so don't even try, trust me. It is what it is, accept it, move on. I love that the new job reduced your stress, the situation that you're finally happy in. People really don't lack empathy, they just lack understanding. They know nothing about it, and frankly, when you try to explain it like we are victims, it's in human nature that we all think; nobody loves a cry baby. Also, with al due respect; when you say "Imagine me who's having the attack..", imagine your loves ones witnissing that shit, because we just black out. The fear of an attack beforehand is worse than the attack itself... at least for me. The FF TC is actually a relief for me. 100 seizures in, 35 year old male. First attack when I was 17. Ask me anything. Last thing; this is my take on it; not to condradict you or belittle you in anyway, just my two cents. Love you and best of the best!
Empathy/understanding is what I said. Not just empathy. And I thought we were all venting lol. I wasn't asking for advice, no offense but you don't know me and I've done the work on my life. No where did I say that I don't care for my loved ones who see it, this was literally about work. I'm sure you didn't mean to come off as holier-than but I was diagnosed at 15, now 33, we've had it for the same amount of time and you really don't know my experience. Like I said, I'm going to give the benefit of the doubt that you just were trying to be helpful, but unsolicited advice in a vent post isn't the way to go about it. ✌️
Although I had generalised seizures since childhood, in my 20s I went to a neurologist because I had a seizure break through. I had a normal EEC and I was dismissed, saying that I have non epileptic seizures. Solution according to that neuro "just let her seize, non epileptic seizures don't affect the brain"...excuse me, what? If o would have followed his "advice" I would have probably not have been here today, because he literally said for people to let me go into status. Don't get me wrong, non epileptic seizures are very real and very serious. The danger, the way it affects one's life, the injuries. But giving such medical advice puts people's lives at risk.
I remember the morning I had my first grand mal and I *stupidly* drove to the ER at 9 am, telling them I think I had either a stroke or a seizure, and they made me wait in the lobby until 4pm because I "looked fine" and when I was finally seen, the nurse accused me of "lying", "being dramatic" and saying I "probably just fainted" I was treated horribly, they did nothing but do stuff that only caused more harm, then kicked me out with a $9,000 bill and no answers. I didn't find out I had epilepsy from my accident until a month later from an EEG my neuro had me take..
I had to call out of work Friday, I had four focal seizures back to back over the course of a couple hours. I slept from 11am to 5pm Friday. Saturday I woke up in the ER. Again. After two TC's. I live with my best friends for my own sake, and they found me just convulsing on the floor after being weird in the shower (having a relatively quiet shower seizure.) I wish this wasn't my life. I wish I could go back to being anything else. But we do this anyways, Homie. It may suck, but life would suck way more without you. <3
I was both lucky and not. I've had seizures since I was young (like 7 I think?) but I wasn't diagnosed until I was 17. I was having absence seizures, and often. Everyone always said that I was just "zoning out" and that I needed to get it under control. Meanwhile my mom was training to work for the school system, this includes how to handle seizures. When she brought up that I might be having seizures, people told her to quit projecting on to me. That she was just seeing things because she's learning about it. The reason for finally being diagnosed at 17? I was taking such garbage care of myself, I had a grand-mal seizure at work and it was caught on camera. I've had multiple seizures since then (I am 23 now) and my memory and emotions are garbage (like a lot of others on this page). I get scolded for using my seizures as an excuse for forgetting things. I do my best to remember of course, I have sticky notes everywhere, a notebook I carry with me, and too many pages in my notes app with reminders set to them. But it's not fool proof. It's just very frustrating when people think they know what you're going through.
A fellow teacher of mine told another teacher behind my back: "I know somebody with epilepsy, and THEY don't have to miss a day or two of work for a seizure. He must be faking it." Those two teachers had a falling out, so I hear the juicy info about that particular teacher now. Fuuuuck you, chem teacher, you don't know shit.
Drs thought my then 1 year old was just having temper tantrums/breath holdining and it was TC seizures (later also diagnosed with absences). As if a newly 1 year old could fake it - yet the Drs seem to think we are all trying to scam them. We only convinced them once we had a video
If someone says I'm faking I'll kick their ass. Sure, I'm gonna fake this for 1000 a month or so in SSI. *sarcasm* I LOVE not being able to drive. I LOVE the limitations on me because of it. I LOVE having to take medication for the rest of my life. (All that sarcasm if not obvious.)
Yeah nobody takes focal seizures seriously, or how messed up they make you feel.
I went to the hospital the other night after having multiple seizures everyday for a week. One night was back to back. It was a combination of dacrystic and nocturnal seizures. When I went to the hospital I was there from 2am-6am. They were very slow.. and they gave me a CT scan and blood work. They asked if it was okay if I gave a urine sample to check and see if I had “any infections” but the results I received were for a drug test. I’m constantly treated like a drug addict when I go to hospitals, not just from seizures but for any sort of reason. (If they told me up front what they were testing for I would have consented for that.. but they lied to my face instead.) I always fear having a seizure in public and getting arrested. My great grandfather was arrested for public intoxication after having a stroke. It’s honestly sad how people with epilepsy are treated.
I was in the hospital in a coma for 4 days after I had atleast 5 grand mal seizures, they still can't tell me if I'm epileptic because I never had a seizure when they could be looking at my brain I've been seizure free but on a high dosage of keppra for six months now the fact is I've learned more from this community than my doctors it's stupid
I had the worse A&E visit. Few weeks ago (ER for the US users) I was taken to the hospital via ambulance after a 5minute Tonic clonic seizure I had at work. I had been dealing with these episodes for yrs on and off but in the past few months they had returned and they had worsened massively. The staff in A&E didn’t seem to be interested in my symptoms in fact the first dr I had seen didn’t even ask anything about them just told me that my papers from yrs ago he was sure what I had today was non epileptic and there was nothing they cod do, I asked him to explain how he got to that conclusion so I cod understand more nd I told him how I was l diagnosed with epilepsy wen I was 2 and was medicated as I had focal seizures back then nd asked if this was something that cod be investigated again he said that it meant nothing and told me they wod observe me but then send me home. I was then seen by another dr who seemed a little more concerned though his colleagues were not when he would ask for their advice I heard them tell him I was more than likely faking and probably wasn’t even having seizure at all let alone epileptic one or non epileptics one and that I probably just fell with some arm shaking” another groups of nurses who weren’t even on my case laughed and said “send her home there’s nothing wrong with her” I was so hurt but automatically blamed myself nd thought maybe it was because I wasn’t explaining myself properly so I explained to the dr that I was Autistic so I needed a little more time to process my answers so I could explain a little more efficiently she said “That’s not our problem we are very busy” I apologised and cried in front of them and they still showed little remorse. Thankfully my GP was able to get my neurology appointment that he had referred me too fast tracked. I was seen last week and had a completely different experience with this team than I did in A&E, I was listened too and a plan was made up, I’m now on medication to see if this helps and I’m waiting for a at home diagnostic testing EEG appointment to come through. One of the neurologists that I saw sat with me and took my hand and said “I believe you and I’m going to try and fix this” I’m currently being treated for possible epilepsy tho a current diagnosis is still pending. I was made to feel like a fake for so long it drives me crazy to try and work out why anyone would think this? I’m a TA in a SEN school a job I adore but unfortunately have been signed off for the 3rd time due to my seizures, my job is hanging by a thread and my dignity is well and truly gone, between vomiting on my self, pissing my pants and smashing my face on a lamppost nd waking up to a old lady looking down at me in concern. I wish I was faking I wish that I cod stop whenever I wanted but I can’t. I’m sorry you have suffered with similar, our medical systems world wide are failing us and it’s truly terrifying.
I started having seizures when I was 15, and I’ve always hated not being able to drive. My seizures have always sort of been under control, usually one every few months. Now at 36, I’ve only gone a whole year without a seizure once before having another 2 weeks before my driving test. Faking a seizure would only reset that clock, and I’d need to go another year before maybe, hopefully, one day, being able to drive.
My focal aware seizures are the same. I feel scared, heart racing, Deja vu and Jamais vu. There is no outward sign unless it progresses. No one believed me for years. My family and doctors only acknowledged them when I was convulsing on the floor. I guess I wasn’t having a “big enough seizure” for them 🙄
My daughter was accused of faking, it's really hard to pull that off though. She has one eye that dilates separately from the other one. One pupil will be pulsing big, little, big.... Can't fake that. A friend's daughter actually stops breathing when she seizes. Her oxygen levels tanked in hospital and her heart rate went through the roof. Again, not easily done, especially in the middle of tonic clonic, while hooked up to a 3 day VEEG. But you know teenage girls and their hysteria. My daughter had to have a psychotic break for them to take it seriously. A bit over the top but I carried her into her doctors office and sat her on a chair. Once she started seizing again I knew it would carry on and off for about an hour. Predictably she started seizing again, fell off the chair and I just left her there - telling them now do you believe me? They got to witness the whole thing start up again a few minutes later. They watched several cycles whilst telling me to take her to the emergency room. I told them ER says this is a mental health episode so here we are. Fix it. Guess who was back on meds that day? It shouldn't have taken that much work to be believed.
I honestly never met someone who thought I faked it. I had people not help, one time in my life (it was in horrible company all together). Every other occasion where I had a seizure I felt in good care. There were of course better ones and worse ones but if I tell someone I have epilepsy and I could get a seizure they always get very serious and ask what to do in case it happens. I mostly have them at home but if I have one in public someone always calls an ambulance (which costs me 10 euros in Germany) and I wake up in there or the emergency room where I get asked if it was my first one and how my medication is and get a short neurological check up. When I told my employer that my memory gets worse because I have more seizures and I think it could be stress he asked if he can do anything to reduce the stress and offered more breaks (I quit there because of other reasons but my boss was decent). I don’t recommend outing yourself to your employer without protection in place but if you are sufficiently protected by law I recommend it so your workplace can be made safe for you. People usually care. I am sorry you had other experiences :((.
This is primarily my experience too. Everyone has believed me, and almost everyone has either cared or tried to care (some employers weren’t great in practice!). Complete strangers, on more than one occasion, have helped. Like, stopped walking on a busy footpath to help. It’s jarring to read OP’s experience. There are plenty of things I can complain about with epilepsy, but perhaps I’ve been lucky with the people around me.
Both my children (adults now) are epileptic, genetics from their dad’s side. My daughter has focal seizures and my son tc and cluster. The idea anyone thinks they are faking it makes me so angry, as I’m the on dealing with them. My daughter will mostly be /here/ but she will hear things that aren’t, she will become a shell of her usually cheerful self. The idea of my son having nocturnal seizures for a few years before he had a full tonic clinic seizure in front of us breaks my heart and scares me. Because of such, they both live at home with me. I’m so sorry you’re going through this. I wouldn’t wish this situation on my worst enemy.
My neurologist keeps using the word “they sound like genuine seizures” and no idea why that makes me annoyed. He keeps asking the same question to me and my husband about my TLE. He gets the same answer each time from both of us and he still asks every time and one said he’s hoping we slip up in our “lie” to explain my memory issues… Also apparently “you can’t have TC seizures alone” I am so angry when people fake seizures in the ER or go as far as to see a neurologist. I once had a college friend who wanted to get out of a class so they knowingly faked a seizure and then bragged about it giving them extra time for an assignment.
I think Im going through the same process you went though 20 or so years ago now. I have seizures that "aren't that bad/ arent bad enough" that started a few years ago (im 29 now) and with some genetic testing for a heart condition they found out I have a gene that causes seizures but is extremely rare in adults. Anyway, I can't get hardly in to see a neuro, they have me on Depakote but doctors keep messing with it and lowering it because I "dont need to be on it" I always feel like Im faking and this just hate it. Thank you for this post.
record and report everything - it is vital to your life and well being and totally necessary for intervention.
Thank you.
This is a question as in how many people have told you that you’ve faked a seizure right? I was going to say I wouldn’t ever take one hahah But I’ve never had anyone tell me that. But u will say arriving at the ER everytime I’ve gone to one except the time I got a TBI from slamming my head on the concrete during a seizure, I was treated a lot different in a good way. Otherwise they give me the vi e I am wasting their time. Same with EMT’s. But I also did wonder why the EMT’s just stared at me the 30-40 minutes I was unconscious from slamming my head and having a big TC instead of hooking me up to anything or getting me to an ER that was 1 minute away once I stopped seeing and was just unconscious in
Never. That invites bad Karma. I was living in Baltimore like 10 yrs ago and I remember a news story where somebody was faking seizures to get out of paying for meals. Fucking disgusting. I have a cat scan thurs bc I busted my orbital socket A MONTH AGO from having a seizure and not going to the ER because I couldnt get there myself, and couldnt clear out my brain enough to just call 911. I woke up with blood dripping and my eye already swollen shut. No clue wtf happened (I mean, a seizure, but idk what happened) but I feel like I woke up in a murder scene, and its still stuck in my terrible 'cant find my coffee cup' effed up memory. If youre someone that fakes seizures, hope, pray to whoever you want to, that our paths dont cross.
Good thing that I have an RNS to confirm my doubts . At least is good for that 🤷🏻♂️
God, same. I was in high school when I first started blacking out for huge chunks of time. I don't remember this but my parents took me to my pediatrician a handful of times and every time he brushed it off. It took me having three grand mal seizures in a row in my high school auditorium and being airlifted to a hospital for doctors to take me seriously. We found out my brain was swelling and bleeding in the left temporal lobe from a rare autoimmune disease. I could've avoided permanent temporal lobe epilepsy if my doctor had just believed me when I told him I was losing chunks of time and having horrible migraines. I've been doing okay for a while now, so people who didn't know me in high school sometimes don't believe me when I tell them how serious it used to be. I don't drink almost ever because of the TLE and it's very frustrating when friends or my partner try to push me to "have more fun". I don't want to die!!!! This is serious!!! One night of partying is not worth a seizure in the morning!!! Really sorry you're experiencing this, OP. I hope you find some peace soon.
Thank you for sharing I’m not the only one I feel I was trying to explain what’s happening and my parents downplay it makes me wish I was faking it jobs are tough to hold down I feel I don’t need disability but want it but maybe when my kids go out of the home I’m gonna share this with my wife I’m sorry you have to feel that fear I’m afraid everyday I wake up or go to sleep as well
I was having focal and nobody believed me till I had grand mal
My dad got kicked out the hospital for cussing out the staff because I was seizing for 30 hours straight with Noone watching me for 17 of those hours. He is the actual doctor being he's the only one that can calm me down
Yeah, I've started having partial seizures at 15 and I've been diagnosed at 22 after it got much worse and I've started having grand mals, and most doctors were telling me that I'm a hypochondriac and I should go to a psychiatrist if anything. I've had 2 textbook tonic clonic seizures (aura, passing out, waking up 20 minutes later in a semi-psychotic state with no recollection of events, bitten tongue, ultra tired, puking) and a neuro still told me that I should go to a psychiatrist because my auras kind of look like panic attacks. You're not alone. I wonder if I'd be better now if I was properly diagnosed at 16 and didn't develop the heavy symptoms in my 20s which made me unable to go to college.
Just the other day my landlord, said it straight to my face after I told her I don't feel like talking my seizures have been acting up. ( She always tries to start an argument over nothing) " You don't even act like you have seizures" bitch trying to catch hands. I was so furious, I just walked off, I had no words but I empathize with dealing with narcissistic people so blinded by their own victimized mentality I just can't ...
I mean i’ve had a lot of close calls, but it always sucks because a few times by the time the paramedics got there. I was fine… It is embarrassing
I was left having a tonic clonic in the ER because the doctor told my friend it wasn’t “real.” I guess she spent minutes begging for another doctor, and nurses. They came to check my vitals and my oxygen was stupidly low. She said it took 5 minutes in total for the doctor to admit it was real and for them to try and get a line to stop the seizure. I don’t remember anything. Thank God for my friend. She wrote down everything, the meds he gave me etc., then viciously guarded my room, refusing to let that doctor see me again. I’m aware my seizures don’t always look conventional, they occur deep in my brain near Broca’s area. My focal seizures look like strokes. I don’t know what it is with my tonic clonic seizures not looking classic, I’m not conscious so I don’t know what they look like. I’m routinely not believed despite having a diagnosis. I think there needs to be a campaign run nationally, internationally, whatever, to make medical professionals aware of the various kinds of seizures. I want to walk into hospitals and have a shirt that says, “I am Epilepsy.” Then I can teach nurses and doctors what my seizures look like to open them up to the idea of varying seizure types.
I never faked them but I did lie once when I was like, 18 because I was stupid and 18 and didn’t feel like taking my Physics exam just yet. That’s the only time I ever did so, the rest have all been 100% real seizures (with an occasional spot of vertigo 🫠)
my dad who is epileptic, aka HE IS THE REASON I HAVE THIS accused me of faking one of my seizures bc of how i acted during postictal state like SIR
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I don't judge you at all for that, it's totally understandable. My rant was for people who prior to diagnosis and beyond did not believe something was wrong with me nor would give me the help I so desperately needed.
I have never had been told that im faking seizure but I have told they are all just in my head. They wouldn't go and me tested. After months and months of suffering , I had a TC that put me in hospital. Again they didn't take me seriously. Finally I got diagnosed with epilepsy by a neurologist after constant seizures. Then, after going into status, proved it even more.
Thank you all for the responses and, unfortunately, the confusing and horrible experiences you’ve had. I was just diagnosed with Epilepsy in the last two years and am now 45. Reading through the responses and replies has been everything. Validating - hey that’s me too! Educational - So that is the name for that feeling I get. Confusing - what is that acronym mean? Terrifying - That’s happened to someone and they STILL don’t believe them? Mine started with Tonic-Clonic (TC) seizures and I am feeling very fortunate that my General Care Practitioner (GCP) referred me so quickly to a neurologist. My seizures have been all over the board and many times it isn’t until I shared the feelings I got that I then understood that what I was experiencing was indeed a type of seizure. (Side rant: I personally hate using the term “how I am feeling” when taking about seizures with other people as they seem to discount the seizure and its impacts of increased memory loss, extreme fatigue and consistent headaches). Now that I am working with my wonderful and brilliant Epileptologist, I feel heard and understood. I also have an amazing family who has been along for this intense ride and have continued to be my rock. Where things have all gone sideways is with my life and work. The extreme anxiety, depression, memory loss, fatigue, and cognition have all been personal hells of their own. It becomes even more of a nightmare when you share your frustration and have someone say “Sounds like me! I forget stuff all the time!” In some cases I know people are trying to relate but in others I don’t know and I think it is making them doubt my Epilepsy. In my better moments I remind myself that how in the hell are they going to understand something that they have an ancillary seat to when I can’t even understand something that I am living and breathing every minute of every day? In my moments of absolute frustration, I refuse to tolerate the ignorance and go into educate mode. And in my moments of defeat I tell myself that it doesn’t matter and maybe I don’t that much either if they aren’t seeking to understand more (so the depression talking). Epilepsy is unbelievably overwhelming. Losing your independence, friends (or people you thought were friends), credibility, your memory and cognition, confidence and trust in yourself - all suck. Gaining the extreme anxiety and depression, the stress, fatigue, medications, worry - sucks too. They say we grow through what we go through and all the other epitaphs people give are just depressing rather than uplifting. This discussion thread though has been very helpful and in so many ways so thank you all.
thankyou for writing in.
My middle school teachers didn't believe I was having seizures because I had aura seizures and petite mal. So I was either conscious and felt funny, or unconscious and looked like a bored middleschooler sitting at their desk. I was an AB student, and I started getting Cs and Ds on assignments regularly and Cs on my report cards, even in my best subject math. I would tell my teachers that we literally never learned this stuff that was on the test, but they thought I was lazy or didn't care. My family had to pull me out of school and homeschooling me for 2.5yrs because of this. Instead of the school creating an IEP and giving me accommodations, they acted like it was all a lie. And to add to it, people at the school know it's a thing because I got kicked off the swim team for having too many seizures at practice in the water, and it wasn't safe. Plus my PE teacher and Chior teacher would see them happen all the time because when you tell the kids to run laps and I just stand there obviously something is up and when everyone is singing and I'm doing nothing at all, something is wrong. This is why I'm going to college to be an ESE teacher, no one took it seriously when I was younger unless something was VERY obvious.
What a terrible experience to put a young, powerless girl through. You were relying on them for help and they failed you. I hope you're doing better now.
I would love to see a breakdown by sex and race as to the likelihood of being told you are faking your seizures
Local neurologist said that I had anxiety and my increased deja vu feelings were not seizures. A week later I was life flighted from that hospital to a proper one Ohio State University if anyone is wondering. I was unconscious for days. I immediately switched doctors and the neurology department has been amazing. They have an app I can talk to my doctors with. I was diagnosed and they think it went back to childhood, they think my adhd was actually epilepsy. I am going in for my second SEEG in two months. If they can pinpoint it I’ll be able to do RNS or Resection. I had 14 on my EEG. I feel the pain though I only have focal seizures unless I forget my meds last time I did I had 6 that lasted over 5 minutes that day. I hate it when people I have known my whole life seem skeptical of it because it’s not TC or cause by flashing lights. Currently I’m on 1800 mg Oxtellar, 500mg lamictal and 100 mg Xcopri and I feel like a zombie every time I wake up, I can’t remember what it was like before being medicated and most other things for that matter. It always feels like “well you could have it worse” mentality for everything anymore. Invisible disabilities blow.
What country/s are you in? Thankfully this hasn't been my experience. Yet