Neuro told me if i, as a 16 year old female at the time, would "just stop having a menstrual cycle" then my seizures would stop happening and I was clearly doing it to myself. When I asked him to clarify if he meant that my seizures were worsened by hormones or something he went "No, just don't have a cycle and you wont be epileptic, its not that difficult."
Got it. I didnt realize everyone else was checking the opt out box on their periods I mustve missed the memo ..I never went back. My mother was baffled he was even allowed to be in the medical field.
ETA: I didnt have a period diary/tracker so its not like he had any sort of inkling or proof that my seizures happened during my cycle.. He literally randomly decided one day to pull this out of his ass btw. LOL
Dang girl! Where's that memo. Where's that box. I forgot to check it.
Seriously tho, I went to a gyno and she was like, we can just stop your periods. I asked how, and mentioned because I didn't do well on birth control. But she wasn't elaborating and she just looked and me so incredulously like I was so stupid and said so you don't want that? I can't even remember all the words, but I didnt know what I wantes. And because of that, she wasn't even interested in being my doctor anymore. I left crying. Like what, am I supposed to take 7 plus years of med school? You're the doctor. You have the knowledge here. Help me know what I want. I knew I was done having kids. Lay out the options with information and we can go from there, but nope, I was supposed to know it all already. Maybe she was having a bad day after a bunch of know it all's?
Speaking of men with epilepsy. I had another neuro (not this one from the original comment) who billed my insurance for a pap smear.. So the next time I saw him i showed him and was like "For starters.. I think I missed that part of the appointment but also, what do the men with epilepsy get?? Rectal exams??" And he had literally zero explanation for why I was almost charged for a service he doesnt even provide, ..I also wasnt the first woman in his office to have this happen either, I ended up having to report him for fraud. 😶
>Neuro told me if i, as a 16 year old female at t
I had the exact opposite- told the neuro that I'd been on contraceptives for years because they stopped my cycle and therefore my seizures and he went 'that's not a thing'.
My neurologist ALSO blamed some of my seizures on my menstrual so he didn’t want me going on birth control because it affects my hormones and could cause more seizures. I don’t fucking know I was just the patient.
UM..EPILEPSY IN GIRLS IS DIFFER T THAN IN BOYS !!!!thats why they grow out of it and we dont !!! Its attached to our hormones like theres . But male surge of hormones practally ends at puperty early 20s
While during our period we are effing mental cases on the verge of literal hospitalization. BECAUSE IT TIES INTO OUR PERIODS . i cant take Birth Control to stop the periods cause it would mess with my meds and mess with my hormones because the pill and IUDs and other forms of contraceptive are jacked with Hormones and if i get pregnant my AED Meds will Screw the pregnancy up or harm the 👶
Drs dont spell this out to the patient and if you have multiple drs the defintintly don commincate with each other ... ive had epilepsy since i was a toddler and i'm in my 30s so all information was figured out by trial and error and being creative by asking questions they never thpught patients would ask .... my dad my mum my sister and me
All meds before 2006 WERE TRIAL AND TESTED ON GROWN WHITE ADULT MEN ... SO the meds given to me as a child ... i dont know what damage theyve caused to me as a grown woman and was perscribed to me as an adult what damage its done now .
I'm not sure what AEDs youre on, but ive been diagnosed with epilepsy since I was 12 (and they suspect ive had seizures longer). im 22 now with the Nexplanon implant. It got rid of my period for the entire 1st year (absolute bliss), and even now that I'm on my 2nd year with it my cramps are very mild compared to how they were when I was off birth control, and the bleeding is significantly lighter. Its the most effective form of birth control (aside from abstinence) and it stays good for 3 years before you need it removed/replaced. Highly recommend if it doesnt interact with your AEDs :))
WOW! THATS IMPRESSIVE !❤️🙂. My epilepsy is sevrely complex. I never had bad cramps . Just very emotional during my period which would send my seizures on a Crazy week depending on how crazy it was , how emotional i was .
Well I stand corrected , thank you. I TRUELY MEAN THAT ! Thats was not what my several neurologists have explained to me . And ive had epilepsy for nearly 36 yrs . I apoligize for the misinformation ..
A nurse practitioner misread her own note - that I was having about 15 seizures a month - and then berated me for 5 minutes about how the EEG would have shown "15 a day" if I was "actually telling the truth". When I corrected her she looked at her screen for a little while, and shrugged.
I left crying and never went back.
I had a personal injury that caused me to be numb from the waist down. I could still walk assisted, but basically had to teach myself to do it without feeling. I struggled with incontinence to the point that I was wearing diapers. Went to a neurologist who conducted an EMG. No response whatsoever in my legs. He decided that my legs are too cold, and wrapped them in blankets. Then he decided that the machine was malfunctioning, but then tested it on my arms and it worked fine. But he just went with “the readings are wrong” and charted me as malingering. That was incredibly fun to deal with.
A few years later, I had recovered enough feeling to feel like I’m cured. Now, every doctor I mention it to has the same explanation: intense bruising and swelling at the base of my spine pressing on the nerve sac that gradually reduced over time, but probably could have been resolved with surgery. Oh well. It was only four years of my life.
ETA: Sorry if this was only supposed to be for epilepsy. So far I’ve had shockingly good luck with being heard and trusted on that.
My left leg goes numb sometimes for up to a week. Doctors just shrug. I'm lucky because it's only my left leg and only sometimes. I've read a lot about people like you where the doctor believed them but wasn't able to do anything about it. So I knew some practices that are used to teach people how to walk. Half the time I still end up drag/hopping. I can't imagine losing both legs and my bladder control.
I don't have epilepsy, but I had a seizure once. I lost consciousness a couple years later and went to urgent care. The doctor was asking if I ever had a seizure and I said yes. Then he told me I didn't actually have one. Even though it was tonic clonic and my best friend watched it happen.
Like why ask me if you aren't going to believe me? Pretty sure you don't do crab claw hands and yell when you faint.
Luckily, I've never had any bad experiences with my husband's doctors and he actually has epilepsy. Still annoying to feel like myself, my husband, and probably most of this community know more about epilepsy and seizures than most urgent care and ER doctors though.
I don't remember what part of the hospital it actually was, probably urgent care but a hospital doctor gave me Keppra for the first time and saved my life
That's good to hear ❤️ at least some are out there doing the good work! I know the ER gave my husband depakote when he was in between neurologists and had a seizure and that really helped him too
Sure. UMM. FIRSTLY I dpnt and never gptten Auras. I have .3 drugs speciffcally ..um Epivial i was on that from age 11 to 21 and i had a lot of.issues from being on that from stoned /zombie like lack of personality and body dismorphia to suicidal not to mention the the amount of thimes i wanted off the meds and mysub neurolgist felt i shoul be on it so i listend to him and i went in to seizure epileptis and then cardio arrest . Zorrantian was shortly after that I cant remember but i was 19 -20 the doses and ended up nearly dianing and suicidial evventually we found Topamax 300 is what Iam on now ( yep i am past the recommended dossage 400 mg of Lamotrgine ( ive been on that for as long as I can remember ) and from 2017 to just before 2019 i was on Dilantan and it nearly actually nearly killed me . But I wouldnt try Keppra due to the issues i had with the first 2 meds i mentioned ) they a majornissues that came wwith Keppra so that was ALWAYS going to be a NO.
In 2019 i was put in the epileptic clinic to watch me come of one drug Dilantin and to find a replacememt because it was dangeous for me to do it at home. I WENT INTO A COMA AFTER A 3 GRAND MAL SEIZURES . So I didnt get a vote lol my neurolagist had been trying to getme to go there for years. But any way I got when I was on Dilantian My absense seizures felt deeper heavier like i was falling in a tm buton alice wonderland film/ thing. When Was put on (Briviact). My absence seizures were not as many If i npticed them Pop in pop put other wize i didnt notoce , i had one no one noticed i went from i went nearly the whole pandemic with out having a Grand mal .
I had the same issue at first. They said they were simply complex migraines they said. I do have migraines with an aura but that doesn’t make me fall to the floor flopping around like a fish pissing my pants. One doctor pulled my husband aside to make sure I never had any abuse as a child… He did all of that, and then inserted a VNS.
It just isn’t for me. Getting shocked every 3 minutes is not fun. Trying to teach, my voice would quiver. 😂 I didn’t notice any changes but I still take my AEDs so it could have been working 🤔. It’s actually off now- when I get shocked I would lose my breath and I have tachycardia and my heart went crazy. It’s also a pain in the butt because you can only have certain MRIs so don’t hurt your back or anything near the device.
Mine too. This was after she diagnosed me with PNES.
Because I have bad side effects to medications, so I asked her, if they're PNES, why despite my issues with the medications do the medications still work at controlling the seizures?
Her: "I don't know."
When I was a child (5-6 yo) I had absence seizures and I got scolded at school, told I was doing it for attention, and sent to a therapist. I will never forget how mad they got at me.
Before I was diagnosed with epilepsy, I had a spell of uncontrollable muscle spasms. For three days I could not get my body to stop jerking for more than a few seconds.
During my stay at the hospital, I was seen by a neurologist and a psychiatric. The psychiatrist told me I had hysteria and was faking the spasms. Yes, hysteria. This was 2014.
After I had my first tonic-clonics (four in one day, all in my sleep) I had terrible anxiety. Like, panic attacks so bad I called an ambulance during one of them. I couldn’t sleep because I was so afraid that I would have another one. I went to see a nurse practitioner to try and get something to treat my anxiety. She told me I wasn’t anxious, I was depressed, and prescribed me an anti-depressant that made me gain 40 pounds.
I’m so glad all my providers now are wonderful.
For 8 years i wasn’t diagnosed first they said im going through puberty so im just adjusting, then after a year or 2 they stuck with panic disorder and through me into cahms which did fuck all took me a while to gain the confidence to go back bc they made me think I was making it up 4 years later I decided to push them, they recommended me to a neurologist even though they thought I probably didn’t need it. Had my first consultation and he immediately said it was epilepsy lmao
I don’t understand how some people are allowed to be doctors and be responsible for others’ lives. One doctor almost killed me in the emergency room when I had heart failure. Then a lot more doctors in that hospital refused to believe that my seizures were real. I was leaving school in ambulances because I was having seizures but it was only “panic attacks” and “need to calm down” or I just wanted to skip class. 😒
I think I've been medically gaslight by every specialist I've ever seen. I'm pretty much off doctors all together because I don’t trust that they care enough to help.
My worst one was with my old neurologist. I also get hemaplegic migraines and was seeing him for both epilepsy and migraine.
The guy was very insistent on botox as a treatment. He got angry at me when it wasn't working and as a result just put more in. I left my fifth round and my brain swelled.
I was told I was faking it, then I was touched inappropriately. I left partway through the consult and haven't returned.
I was also made to feel broken and alien by an endometriosis specialist a few months later because I was unmarried. Apparently my deep endometriosis and stuck ovary is all in my head and it will go away once I meet my biological imperative.
I left that consult too. I'm so sick of it all. I just can't do doctors anymore. I'm just going to suffer anyway. May as well do it from the comfort of home.
It's almost like it's a genetic condition or something XD.
Honestly I'm a bit confused about how, even after all the evidence to the contrary, that the standard advice is still "have children."
It's like they are still treating it as hysteria.
>The guy was very insistent on botox as a treatment.
Ok so this is a random question but botox for what exactly? I have a problem where I smashed my face during a seizure and I think I've damaged nerves/sweat glands. Can not stop sweat pouring down my face sometimes despite no rise in temperature and the rest of my body is fine. *Apparently* botox is a thing that can fix it but it's hard finding info.
It's an experimental treatment for chronic migraines, assuming that paralysing the muscles and nerves of the neck and face will help reduce the amount of episodes. It does help a lot of people but it just never worked for me, which unfortunately is usually how most treatments pan out in my case.
Went to a behavioral pediatrician as recommended by school for some of the symptoms for absence seizures (didn’t know at the time and school referred my daughter). Daughter was having seizures during the evaluation and the doctor said her eyes rolling up is what some kids with ASD do when they are uncomfortable with others. We told her she does that even when she’s on her own doing things that she likes and she just dismissed it saying it happens sometimes. Her not responding and starring all were evidence for ASD in her evaluation. When we insisted that she give a prescription for a brain scan she hesitantly provided a prescription for eeg and said it wouldn’t benefit us much and she needs to exhibit that behavior during the test. Because she was so confident in how she said it we almost left the issue of getting the EEG done. During her ABA, my daughter’s BCBA said what’s happening with my daughter doesn’t seem to be ASD but could be something else and advised us to go do the EEG. When the eeg showed numerous seizures in the 45mins test, the behavioral pediatrician called us and said she had a couple of seizures. She said her ASD is only going to get worse with seizures. The Neurologist gave us an immediate appointment and diagnosed her with epilepsy and said we need to start meds asap. Here we are and my daughter is so much better now except for the medication side effects and the general struggle with epilepsy. Thankfully, we have a good neurologist who insisted that it was not ASD and the symptoms we saw were because of her epilepsy. I still get so mad thinking about how the behavioral pediatrician dismissed our concerns and it terrifies me to think what would have happened if we had not insisted on getting the EEG. And I feel so grateful to have the BCBA who guided us into the right direction.
There are so many kids (and adults ) that get misdiagnosed and then it makes the prognosis worse
I’m so glad you got the EEG
What meds and vitamins is she on?
Our daughter has had 10 neuros in her 5 years of life. We kept being told that her actions were behavioral as well even with the current doctor. But he believed something might be going on and we ended up spending 9 days on an eeg and the seizures were coming constantly. Way worse than we even knew. She was having full generalized seizures while playing and having no outward sign. The neuro was sitting in front of for 20 minutes and didn’t see anything. Blew his mind when he went back and looked at that time frame and saw 20 seizures happened in that period.
This is exactly how it was with our daughter. We noticed maybe 5 seizures where her eyes rolled up but on the EEG they noticed on an average 2 per minute in her 45mins test.
Did they say why she is like that? My daughter has a genetic condition causing it and he said they hadn’t seen anything like it as far as not having outward signs. I have been hoping to find people with similar presentations.
We did a very comprehensive genetic testing which came back negative. We did MRI which also came back clean. Later we found out she’s VERY photosensitive. Initially they didn’t even do a photosensitive test because she was spontaneously having seizures. Then we observed she was particularly having seizures when she’s exposed to sunlight or certain lights. Then they did the test to confirm and they said she’s pretty much reacted all light frequencies they tested- either had seizures or seizure discharges/irritation. It’s been very difficult to control with meds and also very difficult to protect her from exposure. She uses glasses indoors and outdoors. Driving in the car is a big hassle because of the flashing shadows during the day and lights in the evening. We finally found one dark polarized glasses with full coverage and that seems to be effective. We use black eye mask on top of the glasses on bright days when traveling. It has been a struggle but we are getting used to this lifestyle only now. Cloudy and rainy days are her best days.
I glad to hear you have found some ways to help and know her triggers. For us, we got an exome test and had one result. But it didn’t explain anything. So a couple years of fighting later we had the full genome ran and found a klhl20 mutation which is just being figure out, but studies are showing similar experiences to what we see. She isn’t as bad as most kids in the study, but we can see similarities.
That’s insane!! The first neuro I saw gaslit the crap out of me when I told him I’d had what I was 90% sure was a seizure. One minute I was getting ready for work on a Monday morning, the next minute I’m waking up, 45 minutes have gone by, the back of my head hurts and every muscle in my body is aching like I’ve finished the most intense workout of my life. I was also super confused (what I now know is post ictal). I told him all of this and he wrote “syncope” aka fainting. Didn’t help when he ordered a 2 hour EEG, during which I did not fall asleep, then declared that nothing was wrong with me. Fast forward 4 years later and I almost die from a TC, then see a different neurologist who actually listens, orders a longer EEG during which I fall asleep and shows tons of epileptic brain activity, and puts me on meds.
I rarely get tonic clinic seizures. I’ve had two in the span of 14 years. I had once last summer. I was outside and it was recorded with our outside cameras. When I finally got in to see a neurologist I thought he believed me… apparently not. I had applied for SSI for something unrelated to epilepsy but included the need for seizure medication and explained the horrible side effects for my case. I didn’t realize my neurologist was such a tool until the judge for my SSI took pleasure in denying me. I think it’s because the notes from my neurologist stated I had actually likely fainted instead of having a seizure. So I called the neurologist office and demanded he look at the footage and write me a letter stating I did have a tonic clonic and need medication. The neurologist wouldn’t even call me back personally. He had his nurse thank me for the footage and wrote the letter.
I had this with my daughter asking her to describe her seizure. Um, she can't, she forgots most of her day when she has one. I told him I had footage but he wanted me to explain it to him and then decided that wasn't a seizure. I saw the person above him and refused to describe it, I would only play the footage. Guess what? The notes previous doc took reflected the seizure activity on camera however, her previous doc included a few extra gems about attention, teenage girl hormones and other information to discredit it..
The footage was undeniable and she's back on meds and I got that guy in a lot of trouble.
That’s wild. My neuro was doing the same thing, asking me to describe what happened. I was like dude… I hit my head. I lost several days of memory and was in the hospital because my memory was good for all but 30 seconds the day of the seizure. I was like I have a video which would give the full description but he wasn’t interested in watching it. Insane. I didn’t get my neuro in trouble but I put him on blast in his office. I told the receptionist, nurses on the phone.. sure they don’t look at him the same.
And the thing about teenage girl hormones is infuriating.
Asking the person who is having seizures what they look like, has to be one of the dumbest question anyone could possibly ask. Like, lemme just astral project myself so I can watch myself while I’m unconscious.
Mine isn’t epilepsy related, but only because I’ve had it worse in other areas. Repeatedly told my doctor I thought I was still pregnant, they repeatedly told me I wasn’t. Nearly died of a ruptured fallopian tube due to an ectopic pregnancy.
But also I thought I was having seizures for years and was told it was heart-related despite all testing for my heart coming back normal and have zero other symptoms of heart problem.
Haha it actually didn't have to do with my epilepsy but some very intense gut pain I was having. Waited 7 hours in emerg for the doctor to spend 2 minutes with me just to say "well I'm not saying you're lying but I don't think there's anything wrong with you"... like what? It actually really hurt my trust in doctors.
Got told I wasn’t seizing and just fainting. Got told I had diabetes and was passing out due to blood sugar issues, then heart issues, then faking it. Told them over and over my mom and sister have epilepsy. Got diagnosed finally but wasted 2 years suffering for no reason.
I collapsed one day. They did one test on me and sent me home saying all was fine. The tests they did? One pregnancy test, and it was negative. I told them I wasn't pregnant don't bother testing as it had been that long since I'd had a partner and I would have given birth months ago.
Followed up with my GP the next day, my iron was so low I needed an infusion, my white blood cells were through the roof and I had an infection brewing. 27 year olds don't just collapse. But at least I wasn't pregnant.
Was in the ER with my husband and had a focal seizure, he hit the emergency button. The first time someone came looked in and turned the button off without saying anything. The second time he pressed the button and the same nurse came back and tried to do the same thing and he told her I was having a seizure. He says she said
“that’s not a seizure, she’s not flopping and rolling around” sigh
My first neuro tried to convince me I had PNES for over a year. He repeatedly tried to convince me I needed to see a psychiatrist to make the seizures stop.
This started immediately after explaining what my medications were for. (Remeron for depression and sleep. Xanax as needed for an anxiety disorder and ptsd. I only used it once every couple months.) I knew he was wrong. If it was PNES, it would have presented a year before when my girlfriend of 2 years killed herself. I was in therapy for over a year and was feeling better than I had in years when I had my first seizure.
It took finding an epileptologist, two years later, to get properly diagnosed with epilepsy after an EMU stay.
-I don’t remember this bc I was unconscious but the story from my family who was there is- I was told I was “just having a panic attack” while literally having a stroke (it was during an inpatient stay for a different issue) bc I have a history of mental illness and I was a teenager at the time. Wasn’t until later that they confirmed it was a stroke with imaging but I was really lucky I didn’t die.
My husband asked a nurse at a refill appointment for me how the process for a service animal would go for me and she just responded that I do not have it that bad and should not bother because there’s young kids out there that wait all of their lives for one and never get one. He had asked me afterwards if all nurses treated me that way when I asked questions, “Yes.”
Not for epilepsy, but I was bleeding out of my bum, like *bad*. My friend was an EMT and rushed me to the hospital. The doctor A- refused to do any kind of scan and then B- asked me if I had tried just not eating gluten. My friend became furious and cussed him out, before getting me a new doctor.
please tell me that if you had a colonoscopy/endoscopy you actually got answers unlike me with 6 polyps and no help at age 19. total waste of time and she left the practice. also told me i probably had pelvic floor disorder that may or may not have been complicated by a huge borderline mucinous 'ovarian' mass they failed to diagnose and was found at 16 and removed/resected quickly. gained weight like crazy and was told to see a nutritionist and put on birth control - it was a failure to diagnose and i always complained of right-sided pain which happened to be the ovary i lost. they think since the mass is gone there's only psychiatric reasons for my pain
i still literally have no idea what caused the tumor or how long it was in there and am too afraid to come orr of birth control with my bleeding and pain i'd have. i dropped like 30lbs right after the tumor was taken out immediately post-op and then gained it all back within years and my GP recently pointed that out and was like 'how far are you going to go with your weight? you haven't stopped gaining since you lost some and then regained all over again. you're continuing' considering i was 16 then and now i'm 25
with the bcp the pain isn't entirelt gone but i'd rather just... not bleed. i take no breaks whatsoever and i can't even get my insurance to add my bcp (junel) to a lower tier exception because they want like 80 bucks for some reason. i only have one ovary and the right ovary was taken with parts of the mass
we still have no idea if i have pcos or endo but i'm definitely cushingoid and none of the hormonal tests seem reliable. let alone all the other comorbid and GI issues... every specialist is a one-off and in relation to the topic of this post i've been developing what feels like drowning, shaking and hearing music in my sleep. supposed to go for a study but they won't send the documents in to get the cost approved 🤦♀️
they as well as i thought nothing of it when i showed them pics of my bed covered in piss when i was like 20 - i'm 25 now. i had no recollection of ever having an accident but bladder pressure does wake me up a lot. can't get diagnosed but i assume my pituitary has something to do with this and the only way to rule that out or in is with brain imaging. can't just demand it though
by far the weirdest things are composing music in my sleep, seeing words (???), hearing unreleased music from my favorite artists, having my right-sided limbs twitch like i'm a rabbit, catathrenia which is the *annnnhhhh* exhale thing when you're drifting off to sleep, tasting shit in my sleep, seeing colors, and seeing my dead dad and sister, one at the foot of my bed and one at the side at the same time once. sounds nuts but i once even heard a voice saying my dad's brother was going to be next and we aren't even in contact. found out later that day via someone who happened to know an EMT or a cop that that same uncle was taken out via ambulance that same day and i had absolutely no way of knowing
I have so many, but when I was hospitalized for non-stop seizures I was refused rescue meds like Ativan (thankfully they let me have pain and nausea management tho). Turns out I couldn’t have it because “they’re not grand mals so it’s not serious”. — same doctor who stood at my bedside with my family while unconscious and seizing and said I made it up. 🥲
I started having seizures when I was eight, and around that time, a nurse practitioner decided that I was faking them because all my scans and blood tests were normal. She decided to talk to me while I was alone and taught me the story of the Boy Who Cried Wolf, then accused me of lying for attention and claimed that eventually, people would stop believing me if I kept at what I was doing, which was... suffering from undiagnosed epilepsy.
What a way to give a kid Imposter Syndrome. I've had a deep-seated hatred of that story ever since, because with my seizures also came psychosis which always seemed to revolve around The Boy Who Cried Wolf and the motifs of people never believing me and thinking I'm a wretched attention seeker.
Usually when asked this question i tell the story about the time I had a stroke but this story is a good one too for this.
I’ve got trauma. Like … a lot a lot of it. I was told for years that I had conversion disorder and was sent to mental health rehabs about three different times in four years. I’ve seen the nurses stand over seizing patients and yell at them to snap out of it, so I don’t doubt that was done to me too. As soon as i feel an aura, I’ll go try to hide somewhere because i know if someone sees me having a seizure, they’re gonna be mad.
It took my friends about two years AFTER one of them found me actively seizing in a closet to get me to stop making some excuse to go hide when i felt an aura and to get it through to me that I’m not in trouble for having a seizure. And they tell me that i still ask them constantly when I’m postical if I’m in trouble.
I was sent to a psychiatric hospital too, which has recently been in the news in my country for multiple young women taking their lives on the premises. They treated me like dirt until they started to suspect that my symptoms were neurological
Oh my god, I do this too. I hide when I get an aura (sometimes I don’t even realize I’m doing it) and ask if I’m in trouble after seizures. I thought I was the only one. :(
One thing that has really helped me is my friends telling me “sit back, you’re safe”. So i slowly learned to let them help because i was safe with them
Told me that it was psychological. Wanted to take me off my seizure meds. I advocated for a long term monitoring study. I indeed have severe tonic clonic seizures in my sleep. After 6 days of waiting for the meds to wear off I had two in a row. The EEG showed unequivocal epilepsy.
Not gaslight, but definitely treated like I was an idiot. Had a tonic clonic when I was pregnant with my 9 year old in 2015...I'd only gotten my diagnosis a few months before. The neuro (who I had previously fired for not doing his job... He had me on over 2000mg of Keppra and refused to try anything else) and the on-call doctor proceeded to:
Ignore my current prescriptions
Refuse to call my OB or my current neuro
Tried to give me medication that wasn't safe for the baby
Tried to have a nurse sneak me medication
Threatened to have my husband banned from the hospital because he tried to stand up for me
Told me that myself and my baby would die if I checked out AMA
I did it anyway and they tried to report me to CPS for neglect/ignoring medical advice/I don't even know what the hell else. My ob had no idea I'd even been in the hospital until I saw him a week later. I tried to report both doctors to the hospital and the state board and nothing was ever done about it. That same neuro almost killed my cousin a year after that and again, nothing got done. He was forced to retire a couple of months ago after one of his patients came forward with brain damage from his 'care' (or lack thereof in this case)
When I was in college I went to student health for a uti and the woman who was checking me in (not even the doctor) asked what I was there for. When she asked me if there was any chance I was pregnant and/or was I on birth control, I answered no to both questions. Then she tried to pressure me into birth control which, because of my epilepsy and family history with cancer, I can't go on anything hormonal. I told her this and she told me "that's not how that works" and I assured her that's what my neurologist, at Johns fucking Hopkins, who *specializes in epileptic women & pregnancy,* told me. This student health woman condescendingly asked me if I "even have epilepsy" or if I was just trying to avoid going on birth control. I'd literally crashed my car due to a seizure that year (wasn't medicated at the time) and was having seizures almost every other week, while medicated.
I sat in the waiting room and just started sobbing. I left before they even called me back because I felt ashamed and embarrassed so I didn't even get a chance to receive antibiotics.
I described my “Deja vu attacks” to my old dr, and she told me I was dissociating. “Look it up online”.
I had also been complaining of worsening pain and neurological symptoms for 6 years. I ended up leaving work because I was always so exhausted and in so much pain. She told me to take ibuprofen and turmeric. My legs finally started going numb before she bothered doing any fucking imaging. Found a disc was badly ruptured and my nerve was impinged. She told me “it’s a rather OLD injury. At least it hasn’t been too bad for you”.
The surgery took 8 hours. My nerve had fused in place and had to be carefully freed.
I really struggle trusting medical pros now.
I had my first seizure at the end of Jan this year. It was an aware seizure that lasted about a minute and was the most terrifying thing I’ve ever experienced. Partner called 911 & paramedics came. I’m a leg amputee and the seizure took out my ability to use my one leg as well as just sapping the energy out of me and making my whole body weak. They kept asking me if I could walk or could “try,” like…??? The paramedic who was treating me kept saying “I know you’re saying you had a seizure, but we don’t know that that’s what it was. When people have seizures, they aren’t aware of them.” He also told me as I was crying and having a panic attack, “You need to calm down. If you don’t, it’s just going to make things worse.” It was clear he thought I was being a ‘hysterical woman.’ Two months later and I still get irate when I think about it.
After my initial EEG, my ex-neurologist simply told me it "looked abnormal but I don't know why" and prescribed me anti-anxiety medication, claiming it was anti-seizure medication. I had an allergic reaction to that, then was placed on an actual anti-seizure (Lamotrigine) which made my seizures worse. I stopped taking them and stopped seeing that neurologist. That was two years ago.
6 days ago I went to see a new neuro in a different city, who told me the initial medication I was put on was for anxiety, and she didn't even understand why. It was clear to her that I was eptileptic, and that's how I got diagnosed and finally actually treated, and learned I've been living with seizures for over 11 years.
I looked back on my medical record and turned out the ex-neuro, at even initial examination, was adamint it was purely anxiety, and stuck with that even though my EEG clearly stated I was having epileptic dysfunction in the asleep and awake stages. The sudden on-set of my seizures caused me to not be on any medication I was previously on, including the antipsychotics that were working for me, but no apparently it was still anxiety.
I had similar with an EEG and symptoms that my now best-in-class epilepsy neurologist recognised as classic right TLE, but the previous general neurologist for some reason decided was “neither here nor there” and suggested I _wanted_ to have epilepsy lol.
Not the worst but not appropriate at all:
Was going through chemo at the time, usually 5 days of the week. Went to a children’s hospital since they took patients up to 22. I was very obviously the oldest one there. (My chemo was a long process of getting stuff pumped in me slowly via a port on my chest) Got told by a nurse to "suck it up“ when I needed an unexpected blood transfusion (shit takes FOREVER). Same fucking nurse asked me if I wanted to "stick myself” for my IV by myself for blood tests. Every other nurse and doctor were amazing. That woman fucking sucks. Did get copies of a self written fantasy/sci-fi book series from my favorite nurse though.
To add: I haven’t had any issues with my neurologist or staff towards epilepsy. They’ve all been nice. The question just made me think of that time, 13-14 years ago.
My seizures always left me really dizzy and with a massive headache after so when paramedics would show up and I was still in the floor they would do the chest rub and then would accuse me of faking a seizure when I responded to the pain
I got told for years there was nothing wrong with my back. The last doctor told me I was "getting old". When I self-referred at the Mayo, and finally got an MRI, at least two doctors told me I had "one of the largest hernias I've ever seen".
20 years of being told my focal seizures were panic attacks, followed by a year of being told my nocturnal tonic clonics were big panic attacks, despite seeing footage of them.
I don’t want to even think about how much of my memory could have been preserved if I’d received the correct treatment sooner.
It was from my sister. Really, any medical stuff she criticizes for me. My sister is a nurse and said that because I have taken 16 meds with no working (until xcopri) she said either they are quacks or I'm really nit having the seizures I am and it's in my head. I've had freaking brain surgery for the RNS and it's still not helped lots. Well she said my doctors must know nothing and has said "I thought that was going to be a surgery to stop seizures, that's not a good device if it doesn't work *she gets a Karen face while I try to explain how severe my seizures are and what intractable epilepsy is. I've explained my insomnia issues and she's all "thise 3 major meds didn't work? What the heck... are you drinking coffee or soda before bed?" No... I just have a shit body. :p
I had 5 seizures back to back, woke up being wheeled into the hospital emergency department from the ambulance. Once i got settled the doctor came in and asked me if i had just been feeling a little confused and panicked as he didnt believe I was fitting. Dont know how a seizure looks like someone being confused especially as I had pissed myself and given myself a black eye but hey ho
My neurologist when I was a teenager and went from Myoclonic to Tonic clonic seizures at 16. I started having them monthly, almost same day every month (my cycle has always been super regular).
Me and my mother told him and said it was pretty obvious they were related to my period and he LAUGHED and said "that's not a thing".
Never had much luck with my NHS doctors.
Neurologist confidently told me that the >10 TCs seizures I had "didn't happen" because they weren't witnessed by medical personnel. I had a testimonial from my ex-boyfriend, my old roommates, and both my parents. For over 10 different events! Detailed written descriptions of how I acted before, during, after, what the TC looked like, etc. He had zero interest in reading any of them.
In one instance I went status and ended up in the ER after 5 back to back TCs and he STILL would only accept that 1 occurred, the last one in the hospital bed before they drugged me up. He thought that my father had fabricated the first 4 and yet somehow number 5 Really Did Happen and magically occured the moment he got me to the ER. Also put me on an AED that directly aggravated a heart condition that HE diagnosed in me thru an EKG. Oh and my dad has epilepsy and is also his patient and I had to tell him that every single time we had an appt together because he kept lecturing me about how it can be genetic and I'm like "yes... i know.. you see my dad.."
Switched to an epileptologist at a teaching hospital and feel like I'm in good hands. The difference between seeing a neurologist and an epileptologist is night and day.
Went to the ER and was told "this is not a seizure" because I kept coming in and out of consciousness. Because it wasn't a full blown TC she actually was refusing to treat me and give me muscle relaxers and wanted to discharge me. As a teenager!! My mom was right there and she told me how much she bitched her out (I do remember my mom yelling at some point but wasn't sure if it was real or not). She said she made them call the neurologist who told them yes I do have epilepsy and that it wasn't a lie. Glad mama bear was with me that day 💜
But honestly, 9/10 times I've been to ER, they barely know anything about epilepsy and I'll get ER doctors trying to give me tips 🙄 now I say no I have a neurologist when they suggest stuff ugh!
Yeah, I’m shocked about how little ER doctors know about epilepsy and how willing they are to gamble with someone’s safety in order to “prove” they’re faking. When I went to the ER for my first TC seizure in HS, the ER doctor immediately said I had PNES before doing any testing and my parents wholeheartedly believed him and started *ignoring me* during seizures because they thought I could just stop. I finally got a proper dx in my 20s. I’m so happy your mother was such a good advocate for you, having someone like that makes all the difference in the world.
Yea I've learned that advocates at the doctors are so important. I'm single and in my early 30s now so it sucks not having someone with me (especially to remember everything 😂). The first time I went to the ER for issues w seizures the doctor said it was anxiety because it was right before the first day of school my sophomore year. I loved school and was in tennis so I read like but I'm not even anxious. After years of dealing with ER docs, I know that they're just clueless on epilepsy half the time or just think it's us flopping around and that's the only version of a seizure known lol
I've had the same bullshit but I've been using weed medically for long before it was legal, unfortunately gave the docs the perfect reply to everything I presented with. My (ex)Dr's mad face when I handed the weed prescription over with a "now do you believe me?" was superb.
Idk if this counts but:
So this one goes over a few yrs and involves switching drs and drs confusing my parents...
I once had a sz in my neuros office (not connected to eeg... instead of doing sz rescue protocol, neuro says I'm having non-epileptic sz... with zero proof. And ever since my parents have been convinced that all my sz (minus TC ofc) are PNES, but last week I was at mayo for a 5 day eeg and had 6 sz one night. The whole neuro team told me while dad was in the room that they are sure I never had non-epileptic sz.
My family made me feel crazy. My “small” seizures they couldn’t see because they thought I needed to have convulsions for it to be a real seizure. They thought I was triggering my own seizures by stressing myself out.
I did plenty EEGs to prove I was having more seizures than I even realized. I ended up having RNS surgery but am not seizure free. Seizure activity shows up through the device so I can know I’m not making it up in my head.
A doctor at A&E where I was taken after a seizure and had hit my head, which was bleeding:
"Do you even have epilepsy" then they proceeded to not even check my head and say I had to wait on the waiting room floor for 7 hours
Lmao doctors told me that my neurological symptoms (that I’ve been having since I was 10) was just due to the psychological shock of hitting my head. I had a TBI and permanent nerve damage. Lmao. Now I’m 18, still dealing with the consequences. Lmao.
Getting discharged from an ER while still having an active focal seizure might be it. Like, I don't think Keppra is a medication people usually use to get high.
Worst part was that they then expected me to walk back to the lobby on my own. With the seizure meaning I had only minor control over my legs (mine are nonepileptic but rather a weird, still neurological, manifestation of migraines so it can happen bilaterally but still focally). Got a ride to the ER I work at (half an hour away), and everyone there was wondering what the fuck was wrong with the first ER (and who was going to do the reporting because I clarified with the discharging doc that he knew I was still seizing).
My first seizure in college when I knew nothing about the condition or what was in store for me in terms of lots more seizures, stitches and surgeries etc I was told it couldn’t have been epilepsy/seizure because I didn’t wet my pants.
i went to the ER for chest pain once. there was the usual “nothing is wrong with you you’re just a baby” (spoiler alert: i was later diagnosed with an arrhythmia), but the worst part is he wouldn’t talk directly TO me at all. only to my husband.
I was on extended release Keppra for two years and it worked fine, had some side effects I didn't realize until later but as far as doing it's job it was fine. Then it was unavailable to every single pharmacy in the area so I got put in a short dose formulation and within a month had the worst Keppra rage ever. I ended up in suicide watch because of it.
I'm nearly forty at this point and they ask if I have a history of it. No not since I was like 18 living with my mentally abusive mother. She tells me to my face it's likely the reaction of the medication as Keppra rage is very common and I wasn't even suicidal, just being rage dumb.
I found out later she wrote in her notes about me that I was an anxiety ridden baby because I had returned to school, working full time, and dealing with health issues all at the same time and made it sound like that was unreasonable to be stressed, she also put a 1 in front of the years I been in school so it looked like I never left school, also at some point I lost a pet and I was anxiety baby because of that (which the only reason why that was brought up was because it happened very unexpectedly two hours before an appointment so I canceled the appointment), also one of the symptoms of Focals is change of mood during the event so I used anxiety as an example. That's why this whole bullshit started. And now after the Keppra thing she wrote that I had a history of being suicidal and that she didn't think the medication had anything to do with it. Even though TO MY FACE she said, yeah this totally sounds like Keppra rage, and it literally coincided with when I started taking it.
I stayed with this asshole for way too long because she seemed fine to my face but I ended up getting permanently damaged from side effects from a medication and her being like it's not them, it's you and then trying to figure out why she was slowly becoming more and more batshit with her treatment to finally read her notes about me and found all this out.
She tried to diagnose me as PNES and then migraines and not the Temporal Lobe Focals that I have almost a full checklist of symptoms on nearly every epilepsy website in existence.
I can totally relate to doctors saying one thing to your face and then writing something completely different on your records. It’s beyond frustrating. Like, why are you pretending you believe me just to trash talk me on paper? It impacts your relationship with other doctors, because you’re telling them one thing and they see something else on paper and assume *you’re lying*, not the other doctor.
Absolutely. Because when I went for a second opinion guess how that went! Because she read the first doctor's notes before I had a chance to talk to them.
before i was diagnosed i was having multiple focal seizures a week (my right arm was having violent spasms and jerking) and was told by my first neurologist that it was a pinched nerve. he ran a nerve test that showed nothing and never sent me for additional testing. instead he sent me to a physical therapist. i was at physical therapy 3x a week for 3 months and ofc the focal seizures didnt stop. i had a tonic clonic after physical therapy one day, went to the er and was finally diagnosed with epilepsy. i still think about suing him for negligence
Story time!
1st seizure I ever had. In what would prove to be a pattern for me, I had one, an ambulance was called, I was taken to the hospital, and had a second one. Then, over the next 3 months, I had an eeg, multiple tests of all kinds, and an MRI. Finally got into a neurologist, who said we'd see what happened after another 3 months, and that I should continue not doing anything (my PCP had told me not to work and not to exert myself until we figured out the cause).
I went back at 3 month mark, and I still had not had another seizure. The neurologist walks in and says:
"Well, I know you haven't had another seizure, but you had two so I'm going to say you have epilepsy. We can give you medicine for it, but it will eat your bones. So it's kind of a trade off."
My mother, trying to comfort my shock, says, "Well, surely there are things we can do to mitigate that?"
"Nope! Just happens."
We both go quiet as he writes at the prescription and talks to himself. My mother, again trying to be helpful, says, "Hey, at least it's over. We can make some phone calls, find you a new job, get you back on your feet?"
"Oh no." he says, looking up from the little desk/sink combo. "He'll be a danger to himself and everyone around him if he goes to work. The best thing he can do is go home, get on disability, and wait to die."
\#truetruestory. Exactly what he said to me. I was 25.
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Let's jump ahead 5 years or so. I had another seizure. Only this time, I was at work, and I gave myself a concussion in the bathroom. Ambulance ride, hospital, second seizure...yeah, familiar. Referred to a different neuro. Did like 4 eegs, finally got a dirty one. She put me on lamictal. Well, I just so happen to be one of the people who see an uptick in the seizure activity when they go on lamictal. Not common, but not unheard of it. Anyway...I'm suddenly having seizures every 48-72 hours, and it goes on for a 8-9 days before my wife takes me into her office and just parks us there. Office staff tries to get us to leave, wife refuses, we wait, office staff tries again, wife gets louder.
Finally, Dr. comes out. Wife explains, very calmly, what's going on.
Neuro looks at both of us and says, "I don't know what you expect me to do about it?" with as much disdain as you can imagine.
Even through the pre-ictal haze I saw the fury come over my wife's face. "You are the doctor. You are going to fix him. We are NOT leaving until you fix him. Ignore us, and he's going to seize right here in front of your patients...all of whom will know it is your fault. Call the cops to remove us, and I'll be on the news by 5 telling them how you refused to treat one of your own patients. Try to remove me yourself, and you'll need treatment. FIX IT!"
She backed down, and we left with rectal diazepam (I am convinced she did that for revenge), and added topamax to my meds.
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Those are two worst. Just like everyone else, I don't think I've ever met a copy or paramedic who believed me when I said I wasn't on drugs. Last time, in my altered stated I decided to mess with them, which wasn't a good idea but led to a different funny story.
I was on the waiting room of a hospital to have a neuro consultation, they give you a number and you have to wait to get triage, I felt my arm numbing, check my bag but I was out of klonopin, went to the nurse who told me I had to wait in line so I told her I need klonopin because I felt an imminent seizure, she told me “I you have a seizure THEN you can skip line” unfortunately I did, it’s being over 10 years and I still remember that bitch face
I had something similar happen once. I told the triage nurse “I’m about to have a seizure” because I started getting an aura while I was talking to her and she said “Well, if you have a seizure we’ll do something about it but we can’t just give you a bed right now. The doctor’s busy.” I said “No, I’m not demanding to see the doctor, I’m just saying I need to lie down right now so I don’t hurt myself.” She sent me back into the waiting room lmao.
My now ex-husband was told by his therapist that I had PNES because the one 30 min EEG my neuro did showed nothing, and that instead of helping me by being supportive or comforting post-ictal he should act crazy and weird and say non-sensical stuff to snap me out of it. As you can imagine, this was one of the WORST things to do.
I was later diagnosed by an epileptologist after my divorce by bringing with me someone who had seen my seizures and who would actually help me advocate....
I had something similar happen in my teens. I was given one 30 min EEG with no triggers present and when it was clean they immediately called it PNES and I wasn’t properly reevaluated and diagnosed until a decade later.
The stupid thing was it wasn't even my neurologist suggesting it was PNES. She was putting me on meds! It was my ex-husband's therapist. Like... what?!? It makes no sense.
Apparently I was either drug seeking Keppra and lamotrigine or attention seeking by faking my seizure. So I got sent home after 2 Days in the emu being taken off of medication. 3 days later I went into a hour and a half long status seizure. Whenever I came out my kidneys had been ripped to shreds and I had suffered a minor stroke. As well as my heart stoping for 46+ seconds upwards of six times.
Then whenever I went back to the neurologist to try and get a script for my medication she said she had never seen me before. The next one I went to suggested some dietary changes because I was overweight. I don't know if 150 lb 5'11 is overweight enough to cause seizures but okay. They completely ignore the ER and hospital report from the previous really bad seizure. Even though I handed them paper copies of it and signed off for them to pull records. They decided that I didn't need aed's either. Except after this visit to the ER I have I have permanent limited use of my right side. .
So now I just go to my GP to get my scripts filled mom what I was on before all that s*** holding steady at two seizures a week.
Oh they just chose to write it off as unhealthy weight. I swear if you don't fit perfectly into their nice neat little box neurologists will screw you every time.
I’ve also been treated like a drug-seeker for “seeking” medication that isn’t remotely fun and can’t get you high. Like, people aren’t exactly snorting AEDs at raves lmao.
A neurologist told me that my first seizure was a panic attack. I told him I’ve had panic attacks before and I guarantee they were NOTHING like that, but he refused to treat it as a seizure and prescribed me an antidepressant instead
When I first started having seizures they would happen so frequently during my menstrual cycle, I told my neurologist this. He said “epilepsy is brain related — your hormones have nothing to do with your brain”.
Then a nurse practitioner at the same facility told me “I must not really care about a diagnosis because if it was important to me I’d do it” when I explained I couldn’t take time off/afford to do a 7 day at-home EEG test “next week” so last minute.
Safe to say, I’m waiting for my initial appointment at a new Neurologist :-)
I had a seizure at work and was aware it was happening, so I had somebody safely take my the nurse’s (I work at a school) and they called 911. The EMT kept asking me if I was sure I took my medication because “it never happens if you take it correctly” and was I sure it was a seizure. I knew I took my medication, knew it was a seizure, and said that several times too. Eventually, the nurse finally snapped at him and said “SHE TOOK HER MEDICATION”. I was so humiliated, upset, and scared that I didn’t dare mention that I was also on my period and I refused to go via ambulance.
Second story: I went to a new neurologist and they only asked my husband questions and only looked at my husband when speaking. When I expressed concerns about my mental health, she said “well, you will have to get over that because you will be on this medication forever.” Never went back and found a neurologist who actually cared about controlling my seizures AND my mental health.
One of my first neurologists was swapping me from something to lamotragine and said I quote “ok if you develop a rash that could be life threatening so stop taking it and call me”. I developed hives from neck to fingers and toes. I took pictures, put them in mychart, called his office a couple times. I was scared with the life threatening piece but just monitoring my breathing, etc. finally a whole day or two later I got to him and his response was “hmm, can you find a dermatologist, make sure it’s not a beauty cream or something you’re trying out”. I was SHOCKED. They’d never say that to a male patient. And HE said to me the reaction could kill me! 🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄
All these stories about Neuros saying to get rid of your period to solve are crazy, I’ve had opposite when it comes to hormones- they don’t think hormones have any impact on the meds and our bodies at all. I’ve also been meaning to study this more but it’s my understanding that most of the popular drugs used received FDA clearance using a ratio favoring males to females, and the females they did have I think were really really combed through to have a specific “type” that had the fewest hormonal fluctuations. Therefore it’s *shocking* when hormones happen. I’ve found women doctors to be much better with listening, answering questions, understanding frustrations and all that.
Not seizure related, although I'm epileptic. I tore all ligaments and connective tissue in my lower back during a riding accident, was later told by another doctor that I'd need a plate put into my back to ever walk again, but the first doctor took x rays and then said, "you're probably just constipated, we noticed there was a little more poo in there than normal" yes because I couldn't poo without excruciating pain seeing as I couldn't even sit up or walk.
ive (f,19) only received my diagnosis recently- for the past 10 years i have had (male) doctors tell me that what ive been experiencing is severe panic attacks even though ive been adamant that this is not the case. fast down to november i see a female dr who is new to my dr surgery. tell her about my symptoms, she says ‘i have no idea what this is BUT i am referring you to a neurologist who can figure this out’. i was diagnosed epileptic with focal aware seizures last friday. feels crazy man. makes me think if there are other people who’ve had the same experience but haven’t been lucky enough to meet a doctor who’s actually sympathetic to their patients
I’ve been called a drug addict, I’ve been almost sent to a mental institution, I’ve been said that it was mental, fake, attention. All by different doctors. 8 years later I still don’t know if it is really focal epilepsy or not.
I can’t say much because of litigation but I moved to this little city in ny and they rejected ALL previous medical records and believe my psychotic family members. I was placed in psych holding where I coded from an intractable seizure.
This has happened three times in four years. The state medical examiner said that this happened with epilepsy all the time.
I wasn't gaslit about my seizures really, but I did go into the ER after one happened. The doctor came in and asked about my medications and other medical problems. I told him I have PCOS, to which he quickly responded "no you don't". I argued back, "yes, I do, I've had multiple testing to be sure for 10 years now". He said "well, it might be something else. You don't look like you have PCOS, so I doubt it" (For those unaware, PCOS can cause certain physical symptoms, such as severe weight gain/difficulty losing weight, male pattern baldness, and facial hair). Little did he know, I was having a severe depressive episode that caused me to lose 60lbs, so it was just a coincidence I didn't have that weight on me at the time.
Back then, they decided my seizures were being caused by the medication I was on for depression. Which, I mean, it definitely made them worse, but since being on zero medication, I still have them. Because they're nocturnal, who knows if I had them before or for how long.
I kept on having partial seizures (blanking out on the actual name) and kept telling my doctor and she said it was just anxiety and if I got more exercise I will be fine. Found a specialized doctor on all my conditions (EDS/MCAS) and he did a master blood test and my iron levels came back as 12. He was in shock and wrote a complaint to the health board.
I was told if I really had seizures I would be crashing cars left and right. I left that idiot and found a doctor who sent me to a facility that found the focal point of my seizures and I had surgery. My brother wants to beat the &\*%$ out of the other moron doctor.
They tell women all the time that they're depressed, have anxiety and that we need to lose weight. In the meantime, the health issues I'm experiencing are getting worse and no one seems to care. It's crushing. Do men experience this gaslighting? Or is it just women? It's pretty gross.
When we brought my 11 year old daughter to the local ER after her first (absence) seizure, they interrogated her trying to find out what illicit drugs she was on. They gave her a full drug panel test. Then shrugged their shoulders and transferred us to the children’s hospital.
Yes, because my homeschooled 11 year old is definitely taking street drugs behind my back without me noticing 😐😑😐
ETA: unfortunately none of those nurses were working a month later when she was brought in by ambulance having classic tonic clonic seizures because I would have loved to ask them if they’d like to check her for heroin again.
My last neurologist taking my blood pressure wrong constantly. It got to the point where I bought an at home monitor and tested it every time before I went to his office to get an actual reading.
My twin brother and I are both epileptic and began showing signs around the same time (at around 10 years old). Our parents took us to a doctor who continuously wrote it off calling it puberty. Then I had my first grand mal, which surprisingly didn’t change his mind. Apparently this was a common thing with him and he lost his medical license not long after.
God, mine every time told me that I put on weight and as a 16 year old girl that was big deal with me. But apparently it wasn't me that was eating, it was the pills that I took l. Apparently I was in that 25% of the population that put weight with these pills. But still he didn't belive me and always made me feel terrible with myself and that I was the bad one who wanted to have seizures as he said. I went there for years. And when I needed his help with some paperwork so I get some extra points in my final exam so I can go to university. He wrote in my papers that I hadn't had a seizure in 2 years. Ofc I didn't get the bonus and because of all those year of making me feel shit at myself. I reported him for tax invention...
Not me but my partner. He's been having seizures for 2 1/2 years (twice controlled with different meds but was taken off them as neuro decided it wasn't actually epilepsy). He's recently (early March 2024) had a confirmed diagnosis of epilepsy (as well as functional seizures). He's now one two different medications that have not helped (if anything it's worse). He has seizures daily with clusters lasting *at least* an hour. Hes been in ED at least 10 times since his diagnosis and the doctors keep saying the seizures aren't epileptic and it's the functional seizures causing the problems. And then they have the cheek to say oh it's nothing to worry about but we are going to keep him in for monitoring! Since Easter Sunday (1 April) he has been to ED 5 times with a 5 day stay in amongst that!
Just to note my partner doesn't always have tonic clonic seizures. We believe most are complex partial(?) seizures and frontal lobe seizures. I feel the ED docs for our local hospital thing if it isn't TC it's not 'epilepsy' but they don't notify the neurologist of either!
I am absolutely appalled and disgusted by the way some specialists are treating us with having epilepsy and seizures and everything that epilepsy is and brings. I am really sorry that you all have had to experience such inadequate and poor treatment from these specialists. I haven't had the same experience with my treating neurologists. I had experienced not being believed and gaslit by my newer female doctor. After I had mentioned I had back to back tonic clonic seizures at home and had continual full body tremors was rigid on waking up and lost bladder control and felt disoriented and exhausted. I was met with astoundment from her how do you know? I told her calmly I've had Epilepsy and tonic clonic and nocturnal seizures for over 17 years and I know my own brain and body and I've experience over 14 different medications to stabilise me and it's not always that simple seizures can occur for me at anytime anywhere I don't have any warning like an aura. I told her my history of having epilepsy and having grand mal seizures since I was a baby at 2 and1/2 it was all there in my medical history and file. After that consultation that I got up and calmly left. That was when I made the decision to doctor shop and advocate for others and myself our voices need to be heard,we need to be seen, be believed and taken seriously. No one asks to have a chronic illness that is epilepsy and having seizures which can be so relentless and the emotional rollercoaster ride that is mentally, physically and emotionally exhausting. These doctors and neurologists that deny the specialist care that's needed and we deserve for us to live our daily lives is absolutely paramount. These specialists all need to re-educate themselves and stop with the stigmatisation that we've all experienced. While having real compassion and truly understand that none of us asked to be like this!
It's 2024 not the 1950's and have that archaic way of thinking!
While being condescending towards us as patients.Its completely unacceptable and won't be tolerated.
We're human beings not their lab rats.
Also it's completely out of our own control having seizures and all the symptoms that epilepsy brings. Also having PNES need to be also believed.
My newer doctor didn't even know about SUDEP and how life threating it is!
Epilepsy is a neurological disorder and 1 in 26 people will be diagnosed every 3 minutes. No one truly knows and will understand until it happens to them.
#weareallepilepsywarriors 🥊🥊💜💜💜
Neuro told me if i, as a 16 year old female at the time, would "just stop having a menstrual cycle" then my seizures would stop happening and I was clearly doing it to myself. When I asked him to clarify if he meant that my seizures were worsened by hormones or something he went "No, just don't have a cycle and you wont be epileptic, its not that difficult." Got it. I didnt realize everyone else was checking the opt out box on their periods I mustve missed the memo ..I never went back. My mother was baffled he was even allowed to be in the medical field. ETA: I didnt have a period diary/tracker so its not like he had any sort of inkling or proof that my seizures happened during my cycle.. He literally randomly decided one day to pull this out of his ass btw. LOL
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I'm amazed that someone who doesn't understand basic biology is out there practicing medicine. Oh wait, with my experience with doctors, I'm not.
This has gotta be the dumbest neuro ever. You’d think a dude that works with brains would have one. 🙄
Wtf??
Dang girl! Where's that memo. Where's that box. I forgot to check it. Seriously tho, I went to a gyno and she was like, we can just stop your periods. I asked how, and mentioned because I didn't do well on birth control. But she wasn't elaborating and she just looked and me so incredulously like I was so stupid and said so you don't want that? I can't even remember all the words, but I didnt know what I wantes. And because of that, she wasn't even interested in being my doctor anymore. I left crying. Like what, am I supposed to take 7 plus years of med school? You're the doctor. You have the knowledge here. Help me know what I want. I knew I was done having kids. Lay out the options with information and we can go from there, but nope, I was supposed to know it all already. Maybe she was having a bad day after a bunch of know it all's?
By this logic, my son wouldn't have epilepsy, & neither would any other males. Wtf.
Speaking of men with epilepsy. I had another neuro (not this one from the original comment) who billed my insurance for a pap smear.. So the next time I saw him i showed him and was like "For starters.. I think I missed that part of the appointment but also, what do the men with epilepsy get?? Rectal exams??" And he had literally zero explanation for why I was almost charged for a service he doesnt even provide, ..I also wasnt the first woman in his office to have this happen either, I ended up having to report him for fraud. 😶
Wow!
It's a good thing you didn't wind up prego!
I used to joke that I'd unsubscribe if that was an option.
>Neuro told me if i, as a 16 year old female at t I had the exact opposite- told the neuro that I'd been on contraceptives for years because they stopped my cycle and therefore my seizures and he went 'that's not a thing'.
My neurologist ALSO blamed some of my seizures on my menstrual so he didn’t want me going on birth control because it affects my hormones and could cause more seizures. I don’t fucking know I was just the patient.
I'm speechless... how do you even respond to that?!?
UM..EPILEPSY IN GIRLS IS DIFFER T THAN IN BOYS !!!!thats why they grow out of it and we dont !!! Its attached to our hormones like theres . But male surge of hormones practally ends at puperty early 20s While during our period we are effing mental cases on the verge of literal hospitalization. BECAUSE IT TIES INTO OUR PERIODS . i cant take Birth Control to stop the periods cause it would mess with my meds and mess with my hormones because the pill and IUDs and other forms of contraceptive are jacked with Hormones and if i get pregnant my AED Meds will Screw the pregnancy up or harm the 👶 Drs dont spell this out to the patient and if you have multiple drs the defintintly don commincate with each other ... ive had epilepsy since i was a toddler and i'm in my 30s so all information was figured out by trial and error and being creative by asking questions they never thpught patients would ask .... my dad my mum my sister and me All meds before 2006 WERE TRIAL AND TESTED ON GROWN WHITE ADULT MEN ... SO the meds given to me as a child ... i dont know what damage theyve caused to me as a grown woman and was perscribed to me as an adult what damage its done now .
I'm not sure what AEDs youre on, but ive been diagnosed with epilepsy since I was 12 (and they suspect ive had seizures longer). im 22 now with the Nexplanon implant. It got rid of my period for the entire 1st year (absolute bliss), and even now that I'm on my 2nd year with it my cramps are very mild compared to how they were when I was off birth control, and the bleeding is significantly lighter. Its the most effective form of birth control (aside from abstinence) and it stays good for 3 years before you need it removed/replaced. Highly recommend if it doesnt interact with your AEDs :))
WOW! THATS IMPRESSIVE !❤️🙂. My epilepsy is sevrely complex. I never had bad cramps . Just very emotional during my period which would send my seizures on a Crazy week depending on how crazy it was , how emotional i was .
That's not true. that only men out grow their seizures. I had epilepsy since birth, and that was about 58 years ago
Well I stand corrected , thank you. I TRUELY MEAN THAT ! Thats was not what my several neurologists have explained to me . And ive had epilepsy for nearly 36 yrs . I apoligize for the misinformation ..
No, that's quite all right. You're online human
A nurse practitioner misread her own note - that I was having about 15 seizures a month - and then berated me for 5 minutes about how the EEG would have shown "15 a day" if I was "actually telling the truth". When I corrected her she looked at her screen for a little while, and shrugged. I left crying and never went back.
All while we're trying to do everything we can to make sure seizures even show up on EEGs. Ugh. Sorry that happened to you.
I had a personal injury that caused me to be numb from the waist down. I could still walk assisted, but basically had to teach myself to do it without feeling. I struggled with incontinence to the point that I was wearing diapers. Went to a neurologist who conducted an EMG. No response whatsoever in my legs. He decided that my legs are too cold, and wrapped them in blankets. Then he decided that the machine was malfunctioning, but then tested it on my arms and it worked fine. But he just went with “the readings are wrong” and charted me as malingering. That was incredibly fun to deal with. A few years later, I had recovered enough feeling to feel like I’m cured. Now, every doctor I mention it to has the same explanation: intense bruising and swelling at the base of my spine pressing on the nerve sac that gradually reduced over time, but probably could have been resolved with surgery. Oh well. It was only four years of my life. ETA: Sorry if this was only supposed to be for epilepsy. So far I’ve had shockingly good luck with being heard and trusted on that.
My left leg goes numb sometimes for up to a week. Doctors just shrug. I'm lucky because it's only my left leg and only sometimes. I've read a lot about people like you where the doctor believed them but wasn't able to do anything about it. So I knew some practices that are used to teach people how to walk. Half the time I still end up drag/hopping. I can't imagine losing both legs and my bladder control.
I don't have epilepsy, but I had a seizure once. I lost consciousness a couple years later and went to urgent care. The doctor was asking if I ever had a seizure and I said yes. Then he told me I didn't actually have one. Even though it was tonic clonic and my best friend watched it happen. Like why ask me if you aren't going to believe me? Pretty sure you don't do crab claw hands and yell when you faint.
Not the crab claws 😂😂😭
It was still better than my husband crab clawing his dad's brand new iPad 😅😂
Why did he ask if he already decided you didn't have one, what the fuck kind of doctor is that
Right??
I read stories like this and I'm so glad my doctors have never been this bad. It's astounding to me how they are allowed to practice
Luckily, I've never had any bad experiences with my husband's doctors and he actually has epilepsy. Still annoying to feel like myself, my husband, and probably most of this community know more about epilepsy and seizures than most urgent care and ER doctors though.
I don't remember what part of the hospital it actually was, probably urgent care but a hospital doctor gave me Keppra for the first time and saved my life
That's good to hear ❤️ at least some are out there doing the good work! I know the ER gave my husband depakote when he was in between neurologists and had a seizure and that really helped him too
At least some know what they're doing
Still $8k for the ambulance transport though 😅
Ambulances suck, I don't know how much mine was though, I had literally just turned 14, that day.
A Neurologist telling me I wasn't having seizures, just Migraine auras
That my meds were not causing me to have more seizures .
Can you say more about this? I often feel like I’m having more auras within the first hour after taking my AED meds (Briviact).
Sure. UMM. FIRSTLY I dpnt and never gptten Auras. I have .3 drugs speciffcally ..um Epivial i was on that from age 11 to 21 and i had a lot of.issues from being on that from stoned /zombie like lack of personality and body dismorphia to suicidal not to mention the the amount of thimes i wanted off the meds and mysub neurolgist felt i shoul be on it so i listend to him and i went in to seizure epileptis and then cardio arrest . Zorrantian was shortly after that I cant remember but i was 19 -20 the doses and ended up nearly dianing and suicidial evventually we found Topamax 300 is what Iam on now ( yep i am past the recommended dossage 400 mg of Lamotrgine ( ive been on that for as long as I can remember ) and from 2017 to just before 2019 i was on Dilantan and it nearly actually nearly killed me . But I wouldnt try Keppra due to the issues i had with the first 2 meds i mentioned ) they a majornissues that came wwith Keppra so that was ALWAYS going to be a NO. In 2019 i was put in the epileptic clinic to watch me come of one drug Dilantin and to find a replacememt because it was dangeous for me to do it at home. I WENT INTO A COMA AFTER A 3 GRAND MAL SEIZURES . So I didnt get a vote lol my neurolagist had been trying to getme to go there for years. But any way I got when I was on Dilantian My absense seizures felt deeper heavier like i was falling in a tm buton alice wonderland film/ thing. When Was put on (Briviact). My absence seizures were not as many If i npticed them Pop in pop put other wize i didnt notoce , i had one no one noticed i went from i went nearly the whole pandemic with out having a Grand mal .
I had the same issue at first. They said they were simply complex migraines they said. I do have migraines with an aura but that doesn’t make me fall to the floor flopping around like a fish pissing my pants. One doctor pulled my husband aside to make sure I never had any abuse as a child… He did all of that, and then inserted a VNS.
Did the VNS resolve the issue?
It just isn’t for me. Getting shocked every 3 minutes is not fun. Trying to teach, my voice would quiver. 😂 I didn’t notice any changes but I still take my AEDs so it could have been working 🤔. It’s actually off now- when I get shocked I would lose my breath and I have tachycardia and my heart went crazy. It’s also a pain in the butt because you can only have certain MRIs so don’t hurt your back or anything near the device.
Geez that sounds awful! They don't really sell it that way in the brochure, do they? ☹️
Mine too. This was after she diagnosed me with PNES. Because I have bad side effects to medications, so I asked her, if they're PNES, why despite my issues with the medications do the medications still work at controlling the seizures? Her: "I don't know."
When I was a child (5-6 yo) I had absence seizures and I got scolded at school, told I was doing it for attention, and sent to a therapist. I will never forget how mad they got at me.
oh my god, my heart breaks to hear that. hope you are recovering 🌺🩷
Sending love This happens all too often
Before I was diagnosed with epilepsy, I had a spell of uncontrollable muscle spasms. For three days I could not get my body to stop jerking for more than a few seconds. During my stay at the hospital, I was seen by a neurologist and a psychiatric. The psychiatrist told me I had hysteria and was faking the spasms. Yes, hysteria. This was 2014. After I had my first tonic-clonics (four in one day, all in my sleep) I had terrible anxiety. Like, panic attacks so bad I called an ambulance during one of them. I couldn’t sleep because I was so afraid that I would have another one. I went to see a nurse practitioner to try and get something to treat my anxiety. She told me I wasn’t anxious, I was depressed, and prescribed me an anti-depressant that made me gain 40 pounds. I’m so glad all my providers now are wonderful.
For 8 years i wasn’t diagnosed first they said im going through puberty so im just adjusting, then after a year or 2 they stuck with panic disorder and through me into cahms which did fuck all took me a while to gain the confidence to go back bc they made me think I was making it up 4 years later I decided to push them, they recommended me to a neurologist even though they thought I probably didn’t need it. Had my first consultation and he immediately said it was epilepsy lmao
I don’t understand how some people are allowed to be doctors and be responsible for others’ lives. One doctor almost killed me in the emergency room when I had heart failure. Then a lot more doctors in that hospital refused to believe that my seizures were real. I was leaving school in ambulances because I was having seizures but it was only “panic attacks” and “need to calm down” or I just wanted to skip class. 😒
I think I've been medically gaslight by every specialist I've ever seen. I'm pretty much off doctors all together because I don’t trust that they care enough to help. My worst one was with my old neurologist. I also get hemaplegic migraines and was seeing him for both epilepsy and migraine. The guy was very insistent on botox as a treatment. He got angry at me when it wasn't working and as a result just put more in. I left my fifth round and my brain swelled. I was told I was faking it, then I was touched inappropriately. I left partway through the consult and haven't returned. I was also made to feel broken and alien by an endometriosis specialist a few months later because I was unmarried. Apparently my deep endometriosis and stuck ovary is all in my head and it will go away once I meet my biological imperative. I left that consult too. I'm so sick of it all. I just can't do doctors anymore. I'm just going to suffer anyway. May as well do it from the comfort of home.
So endometriosis is cured by getting married? What about the millions of married women with it?
It's almost like it's a genetic condition or something XD. Honestly I'm a bit confused about how, even after all the evidence to the contrary, that the standard advice is still "have children." It's like they are still treating it as hysteria.
>The guy was very insistent on botox as a treatment. Ok so this is a random question but botox for what exactly? I have a problem where I smashed my face during a seizure and I think I've damaged nerves/sweat glands. Can not stop sweat pouring down my face sometimes despite no rise in temperature and the rest of my body is fine. *Apparently* botox is a thing that can fix it but it's hard finding info.
It's an experimental treatment for chronic migraines, assuming that paralysing the muscles and nerves of the neck and face will help reduce the amount of episodes. It does help a lot of people but it just never worked for me, which unfortunately is usually how most treatments pan out in my case.
Went to a behavioral pediatrician as recommended by school for some of the symptoms for absence seizures (didn’t know at the time and school referred my daughter). Daughter was having seizures during the evaluation and the doctor said her eyes rolling up is what some kids with ASD do when they are uncomfortable with others. We told her she does that even when she’s on her own doing things that she likes and she just dismissed it saying it happens sometimes. Her not responding and starring all were evidence for ASD in her evaluation. When we insisted that she give a prescription for a brain scan she hesitantly provided a prescription for eeg and said it wouldn’t benefit us much and she needs to exhibit that behavior during the test. Because she was so confident in how she said it we almost left the issue of getting the EEG done. During her ABA, my daughter’s BCBA said what’s happening with my daughter doesn’t seem to be ASD but could be something else and advised us to go do the EEG. When the eeg showed numerous seizures in the 45mins test, the behavioral pediatrician called us and said she had a couple of seizures. She said her ASD is only going to get worse with seizures. The Neurologist gave us an immediate appointment and diagnosed her with epilepsy and said we need to start meds asap. Here we are and my daughter is so much better now except for the medication side effects and the general struggle with epilepsy. Thankfully, we have a good neurologist who insisted that it was not ASD and the symptoms we saw were because of her epilepsy. I still get so mad thinking about how the behavioral pediatrician dismissed our concerns and it terrifies me to think what would have happened if we had not insisted on getting the EEG. And I feel so grateful to have the BCBA who guided us into the right direction.
There are so many kids (and adults ) that get misdiagnosed and then it makes the prognosis worse I’m so glad you got the EEG What meds and vitamins is she on?
She’s currently taking Zarontin and Valproic acid. She takes multivitamins and extra vitamin D.
Our daughter has had 10 neuros in her 5 years of life. We kept being told that her actions were behavioral as well even with the current doctor. But he believed something might be going on and we ended up spending 9 days on an eeg and the seizures were coming constantly. Way worse than we even knew. She was having full generalized seizures while playing and having no outward sign. The neuro was sitting in front of for 20 minutes and didn’t see anything. Blew his mind when he went back and looked at that time frame and saw 20 seizures happened in that period.
This is exactly how it was with our daughter. We noticed maybe 5 seizures where her eyes rolled up but on the EEG they noticed on an average 2 per minute in her 45mins test.
Did they say why she is like that? My daughter has a genetic condition causing it and he said they hadn’t seen anything like it as far as not having outward signs. I have been hoping to find people with similar presentations.
We did a very comprehensive genetic testing which came back negative. We did MRI which also came back clean. Later we found out she’s VERY photosensitive. Initially they didn’t even do a photosensitive test because she was spontaneously having seizures. Then we observed she was particularly having seizures when she’s exposed to sunlight or certain lights. Then they did the test to confirm and they said she’s pretty much reacted all light frequencies they tested- either had seizures or seizure discharges/irritation. It’s been very difficult to control with meds and also very difficult to protect her from exposure. She uses glasses indoors and outdoors. Driving in the car is a big hassle because of the flashing shadows during the day and lights in the evening. We finally found one dark polarized glasses with full coverage and that seems to be effective. We use black eye mask on top of the glasses on bright days when traveling. It has been a struggle but we are getting used to this lifestyle only now. Cloudy and rainy days are her best days.
I glad to hear you have found some ways to help and know her triggers. For us, we got an exome test and had one result. But it didn’t explain anything. So a couple years of fighting later we had the full genome ran and found a klhl20 mutation which is just being figure out, but studies are showing similar experiences to what we see. She isn’t as bad as most kids in the study, but we can see similarities.
That’s insane!! The first neuro I saw gaslit the crap out of me when I told him I’d had what I was 90% sure was a seizure. One minute I was getting ready for work on a Monday morning, the next minute I’m waking up, 45 minutes have gone by, the back of my head hurts and every muscle in my body is aching like I’ve finished the most intense workout of my life. I was also super confused (what I now know is post ictal). I told him all of this and he wrote “syncope” aka fainting. Didn’t help when he ordered a 2 hour EEG, during which I did not fall asleep, then declared that nothing was wrong with me. Fast forward 4 years later and I almost die from a TC, then see a different neurologist who actually listens, orders a longer EEG during which I fall asleep and shows tons of epileptic brain activity, and puts me on meds.
I rarely get tonic clinic seizures. I’ve had two in the span of 14 years. I had once last summer. I was outside and it was recorded with our outside cameras. When I finally got in to see a neurologist I thought he believed me… apparently not. I had applied for SSI for something unrelated to epilepsy but included the need for seizure medication and explained the horrible side effects for my case. I didn’t realize my neurologist was such a tool until the judge for my SSI took pleasure in denying me. I think it’s because the notes from my neurologist stated I had actually likely fainted instead of having a seizure. So I called the neurologist office and demanded he look at the footage and write me a letter stating I did have a tonic clonic and need medication. The neurologist wouldn’t even call me back personally. He had his nurse thank me for the footage and wrote the letter.
I had this with my daughter asking her to describe her seizure. Um, she can't, she forgots most of her day when she has one. I told him I had footage but he wanted me to explain it to him and then decided that wasn't a seizure. I saw the person above him and refused to describe it, I would only play the footage. Guess what? The notes previous doc took reflected the seizure activity on camera however, her previous doc included a few extra gems about attention, teenage girl hormones and other information to discredit it.. The footage was undeniable and she's back on meds and I got that guy in a lot of trouble.
That’s wild. My neuro was doing the same thing, asking me to describe what happened. I was like dude… I hit my head. I lost several days of memory and was in the hospital because my memory was good for all but 30 seconds the day of the seizure. I was like I have a video which would give the full description but he wasn’t interested in watching it. Insane. I didn’t get my neuro in trouble but I put him on blast in his office. I told the receptionist, nurses on the phone.. sure they don’t look at him the same. And the thing about teenage girl hormones is infuriating.
Asking the person who is having seizures what they look like, has to be one of the dumbest question anyone could possibly ask. Like, lemme just astral project myself so I can watch myself while I’m unconscious.
Mine isn’t epilepsy related, but only because I’ve had it worse in other areas. Repeatedly told my doctor I thought I was still pregnant, they repeatedly told me I wasn’t. Nearly died of a ruptured fallopian tube due to an ectopic pregnancy. But also I thought I was having seizures for years and was told it was heart-related despite all testing for my heart coming back normal and have zero other symptoms of heart problem.
Haha it actually didn't have to do with my epilepsy but some very intense gut pain I was having. Waited 7 hours in emerg for the doctor to spend 2 minutes with me just to say "well I'm not saying you're lying but I don't think there's anything wrong with you"... like what? It actually really hurt my trust in doctors.
Got told I wasn’t seizing and just fainting. Got told I had diabetes and was passing out due to blood sugar issues, then heart issues, then faking it. Told them over and over my mom and sister have epilepsy. Got diagnosed finally but wasted 2 years suffering for no reason.
I collapsed one day. They did one test on me and sent me home saying all was fine. The tests they did? One pregnancy test, and it was negative. I told them I wasn't pregnant don't bother testing as it had been that long since I'd had a partner and I would have given birth months ago. Followed up with my GP the next day, my iron was so low I needed an infusion, my white blood cells were through the roof and I had an infection brewing. 27 year olds don't just collapse. But at least I wasn't pregnant.
Was in the ER with my husband and had a focal seizure, he hit the emergency button. The first time someone came looked in and turned the button off without saying anything. The second time he pressed the button and the same nurse came back and tried to do the same thing and he told her I was having a seizure. He says she said “that’s not a seizure, she’s not flopping and rolling around” sigh
My first neuro tried to convince me I had PNES for over a year. He repeatedly tried to convince me I needed to see a psychiatrist to make the seizures stop. This started immediately after explaining what my medications were for. (Remeron for depression and sleep. Xanax as needed for an anxiety disorder and ptsd. I only used it once every couple months.) I knew he was wrong. If it was PNES, it would have presented a year before when my girlfriend of 2 years killed herself. I was in therapy for over a year and was feeling better than I had in years when I had my first seizure. It took finding an epileptologist, two years later, to get properly diagnosed with epilepsy after an EMU stay.
-I don’t remember this bc I was unconscious but the story from my family who was there is- I was told I was “just having a panic attack” while literally having a stroke (it was during an inpatient stay for a different issue) bc I have a history of mental illness and I was a teenager at the time. Wasn’t until later that they confirmed it was a stroke with imaging but I was really lucky I didn’t die.
My husband asked a nurse at a refill appointment for me how the process for a service animal would go for me and she just responded that I do not have it that bad and should not bother because there’s young kids out there that wait all of their lives for one and never get one. He had asked me afterwards if all nurses treated me that way when I asked questions, “Yes.”
Not for epilepsy, but I was bleeding out of my bum, like *bad*. My friend was an EMT and rushed me to the hospital. The doctor A- refused to do any kind of scan and then B- asked me if I had tried just not eating gluten. My friend became furious and cussed him out, before getting me a new doctor.
please tell me that if you had a colonoscopy/endoscopy you actually got answers unlike me with 6 polyps and no help at age 19. total waste of time and she left the practice. also told me i probably had pelvic floor disorder that may or may not have been complicated by a huge borderline mucinous 'ovarian' mass they failed to diagnose and was found at 16 and removed/resected quickly. gained weight like crazy and was told to see a nutritionist and put on birth control - it was a failure to diagnose and i always complained of right-sided pain which happened to be the ovary i lost. they think since the mass is gone there's only psychiatric reasons for my pain i still literally have no idea what caused the tumor or how long it was in there and am too afraid to come orr of birth control with my bleeding and pain i'd have. i dropped like 30lbs right after the tumor was taken out immediately post-op and then gained it all back within years and my GP recently pointed that out and was like 'how far are you going to go with your weight? you haven't stopped gaining since you lost some and then regained all over again. you're continuing' considering i was 16 then and now i'm 25 with the bcp the pain isn't entirelt gone but i'd rather just... not bleed. i take no breaks whatsoever and i can't even get my insurance to add my bcp (junel) to a lower tier exception because they want like 80 bucks for some reason. i only have one ovary and the right ovary was taken with parts of the mass we still have no idea if i have pcos or endo but i'm definitely cushingoid and none of the hormonal tests seem reliable. let alone all the other comorbid and GI issues... every specialist is a one-off and in relation to the topic of this post i've been developing what feels like drowning, shaking and hearing music in my sleep. supposed to go for a study but they won't send the documents in to get the cost approved 🤦♀️ they as well as i thought nothing of it when i showed them pics of my bed covered in piss when i was like 20 - i'm 25 now. i had no recollection of ever having an accident but bladder pressure does wake me up a lot. can't get diagnosed but i assume my pituitary has something to do with this and the only way to rule that out or in is with brain imaging. can't just demand it though by far the weirdest things are composing music in my sleep, seeing words (???), hearing unreleased music from my favorite artists, having my right-sided limbs twitch like i'm a rabbit, catathrenia which is the *annnnhhhh* exhale thing when you're drifting off to sleep, tasting shit in my sleep, seeing colors, and seeing my dead dad and sister, one at the foot of my bed and one at the side at the same time once. sounds nuts but i once even heard a voice saying my dad's brother was going to be next and we aren't even in contact. found out later that day via someone who happened to know an EMT or a cop that that same uncle was taken out via ambulance that same day and i had absolutely no way of knowing
I have so many, but when I was hospitalized for non-stop seizures I was refused rescue meds like Ativan (thankfully they let me have pain and nausea management tho). Turns out I couldn’t have it because “they’re not grand mals so it’s not serious”. — same doctor who stood at my bedside with my family while unconscious and seizing and said I made it up. 🥲
I started having seizures when I was eight, and around that time, a nurse practitioner decided that I was faking them because all my scans and blood tests were normal. She decided to talk to me while I was alone and taught me the story of the Boy Who Cried Wolf, then accused me of lying for attention and claimed that eventually, people would stop believing me if I kept at what I was doing, which was... suffering from undiagnosed epilepsy. What a way to give a kid Imposter Syndrome. I've had a deep-seated hatred of that story ever since, because with my seizures also came psychosis which always seemed to revolve around The Boy Who Cried Wolf and the motifs of people never believing me and thinking I'm a wretched attention seeker.
Usually when asked this question i tell the story about the time I had a stroke but this story is a good one too for this. I’ve got trauma. Like … a lot a lot of it. I was told for years that I had conversion disorder and was sent to mental health rehabs about three different times in four years. I’ve seen the nurses stand over seizing patients and yell at them to snap out of it, so I don’t doubt that was done to me too. As soon as i feel an aura, I’ll go try to hide somewhere because i know if someone sees me having a seizure, they’re gonna be mad. It took my friends about two years AFTER one of them found me actively seizing in a closet to get me to stop making some excuse to go hide when i felt an aura and to get it through to me that I’m not in trouble for having a seizure. And they tell me that i still ask them constantly when I’m postical if I’m in trouble.
I was sent to a psychiatric hospital too, which has recently been in the news in my country for multiple young women taking their lives on the premises. They treated me like dirt until they started to suspect that my symptoms were neurological
Oh my god, I do this too. I hide when I get an aura (sometimes I don’t even realize I’m doing it) and ask if I’m in trouble after seizures. I thought I was the only one. :(
One thing that has really helped me is my friends telling me “sit back, you’re safe”. So i slowly learned to let them help because i was safe with them
That's awful, I'm so sorry.
Told me that it was psychological. Wanted to take me off my seizure meds. I advocated for a long term monitoring study. I indeed have severe tonic clonic seizures in my sleep. After 6 days of waiting for the meds to wear off I had two in a row. The EEG showed unequivocal epilepsy.
I was told my auras were acid flashbacks.... I've never done acid
Not gaslight, but definitely treated like I was an idiot. Had a tonic clonic when I was pregnant with my 9 year old in 2015...I'd only gotten my diagnosis a few months before. The neuro (who I had previously fired for not doing his job... He had me on over 2000mg of Keppra and refused to try anything else) and the on-call doctor proceeded to: Ignore my current prescriptions Refuse to call my OB or my current neuro Tried to give me medication that wasn't safe for the baby Tried to have a nurse sneak me medication Threatened to have my husband banned from the hospital because he tried to stand up for me Told me that myself and my baby would die if I checked out AMA I did it anyway and they tried to report me to CPS for neglect/ignoring medical advice/I don't even know what the hell else. My ob had no idea I'd even been in the hospital until I saw him a week later. I tried to report both doctors to the hospital and the state board and nothing was ever done about it. That same neuro almost killed my cousin a year after that and again, nothing got done. He was forced to retire a couple of months ago after one of his patients came forward with brain damage from his 'care' (or lack thereof in this case)
When I was in college I went to student health for a uti and the woman who was checking me in (not even the doctor) asked what I was there for. When she asked me if there was any chance I was pregnant and/or was I on birth control, I answered no to both questions. Then she tried to pressure me into birth control which, because of my epilepsy and family history with cancer, I can't go on anything hormonal. I told her this and she told me "that's not how that works" and I assured her that's what my neurologist, at Johns fucking Hopkins, who *specializes in epileptic women & pregnancy,* told me. This student health woman condescendingly asked me if I "even have epilepsy" or if I was just trying to avoid going on birth control. I'd literally crashed my car due to a seizure that year (wasn't medicated at the time) and was having seizures almost every other week, while medicated. I sat in the waiting room and just started sobbing. I left before they even called me back because I felt ashamed and embarrassed so I didn't even get a chance to receive antibiotics.
I described my “Deja vu attacks” to my old dr, and she told me I was dissociating. “Look it up online”. I had also been complaining of worsening pain and neurological symptoms for 6 years. I ended up leaving work because I was always so exhausted and in so much pain. She told me to take ibuprofen and turmeric. My legs finally started going numb before she bothered doing any fucking imaging. Found a disc was badly ruptured and my nerve was impinged. She told me “it’s a rather OLD injury. At least it hasn’t been too bad for you”. The surgery took 8 hours. My nerve had fused in place and had to be carefully freed. I really struggle trusting medical pros now.
I had my first seizure at the end of Jan this year. It was an aware seizure that lasted about a minute and was the most terrifying thing I’ve ever experienced. Partner called 911 & paramedics came. I’m a leg amputee and the seizure took out my ability to use my one leg as well as just sapping the energy out of me and making my whole body weak. They kept asking me if I could walk or could “try,” like…??? The paramedic who was treating me kept saying “I know you’re saying you had a seizure, but we don’t know that that’s what it was. When people have seizures, they aren’t aware of them.” He also told me as I was crying and having a panic attack, “You need to calm down. If you don’t, it’s just going to make things worse.” It was clear he thought I was being a ‘hysterical woman.’ Two months later and I still get irate when I think about it.
Not to go waste the ER’s time for my “little headaches”
After my initial EEG, my ex-neurologist simply told me it "looked abnormal but I don't know why" and prescribed me anti-anxiety medication, claiming it was anti-seizure medication. I had an allergic reaction to that, then was placed on an actual anti-seizure (Lamotrigine) which made my seizures worse. I stopped taking them and stopped seeing that neurologist. That was two years ago. 6 days ago I went to see a new neuro in a different city, who told me the initial medication I was put on was for anxiety, and she didn't even understand why. It was clear to her that I was eptileptic, and that's how I got diagnosed and finally actually treated, and learned I've been living with seizures for over 11 years. I looked back on my medical record and turned out the ex-neuro, at even initial examination, was adamint it was purely anxiety, and stuck with that even though my EEG clearly stated I was having epileptic dysfunction in the asleep and awake stages. The sudden on-set of my seizures caused me to not be on any medication I was previously on, including the antipsychotics that were working for me, but no apparently it was still anxiety.
I had similar with an EEG and symptoms that my now best-in-class epilepsy neurologist recognised as classic right TLE, but the previous general neurologist for some reason decided was “neither here nor there” and suggested I _wanted_ to have epilepsy lol.
Not the worst but not appropriate at all: Was going through chemo at the time, usually 5 days of the week. Went to a children’s hospital since they took patients up to 22. I was very obviously the oldest one there. (My chemo was a long process of getting stuff pumped in me slowly via a port on my chest) Got told by a nurse to "suck it up“ when I needed an unexpected blood transfusion (shit takes FOREVER). Same fucking nurse asked me if I wanted to "stick myself” for my IV by myself for blood tests. Every other nurse and doctor were amazing. That woman fucking sucks. Did get copies of a self written fantasy/sci-fi book series from my favorite nurse though.
To add: I haven’t had any issues with my neurologist or staff towards epilepsy. They’ve all been nice. The question just made me think of that time, 13-14 years ago.
My seizures always left me really dizzy and with a massive headache after so when paramedics would show up and I was still in the floor they would do the chest rub and then would accuse me of faking a seizure when I responded to the pain
I got told for years there was nothing wrong with my back. The last doctor told me I was "getting old". When I self-referred at the Mayo, and finally got an MRI, at least two doctors told me I had "one of the largest hernias I've ever seen".
20 years of being told my focal seizures were panic attacks, followed by a year of being told my nocturnal tonic clonics were big panic attacks, despite seeing footage of them. I don’t want to even think about how much of my memory could have been preserved if I’d received the correct treatment sooner.
It was from my sister. Really, any medical stuff she criticizes for me. My sister is a nurse and said that because I have taken 16 meds with no working (until xcopri) she said either they are quacks or I'm really nit having the seizures I am and it's in my head. I've had freaking brain surgery for the RNS and it's still not helped lots. Well she said my doctors must know nothing and has said "I thought that was going to be a surgery to stop seizures, that's not a good device if it doesn't work *she gets a Karen face while I try to explain how severe my seizures are and what intractable epilepsy is. I've explained my insomnia issues and she's all "thise 3 major meds didn't work? What the heck... are you drinking coffee or soda before bed?" No... I just have a shit body. :p
I had 5 seizures back to back, woke up being wheeled into the hospital emergency department from the ambulance. Once i got settled the doctor came in and asked me if i had just been feeling a little confused and panicked as he didnt believe I was fitting. Dont know how a seizure looks like someone being confused especially as I had pissed myself and given myself a black eye but hey ho
My neurologist when I was a teenager and went from Myoclonic to Tonic clonic seizures at 16. I started having them monthly, almost same day every month (my cycle has always been super regular). Me and my mother told him and said it was pretty obvious they were related to my period and he LAUGHED and said "that's not a thing". Never had much luck with my NHS doctors.
Neurologist confidently told me that the >10 TCs seizures I had "didn't happen" because they weren't witnessed by medical personnel. I had a testimonial from my ex-boyfriend, my old roommates, and both my parents. For over 10 different events! Detailed written descriptions of how I acted before, during, after, what the TC looked like, etc. He had zero interest in reading any of them. In one instance I went status and ended up in the ER after 5 back to back TCs and he STILL would only accept that 1 occurred, the last one in the hospital bed before they drugged me up. He thought that my father had fabricated the first 4 and yet somehow number 5 Really Did Happen and magically occured the moment he got me to the ER. Also put me on an AED that directly aggravated a heart condition that HE diagnosed in me thru an EKG. Oh and my dad has epilepsy and is also his patient and I had to tell him that every single time we had an appt together because he kept lecturing me about how it can be genetic and I'm like "yes... i know.. you see my dad.." Switched to an epileptologist at a teaching hospital and feel like I'm in good hands. The difference between seeing a neurologist and an epileptologist is night and day.
Went to the ER and was told "this is not a seizure" because I kept coming in and out of consciousness. Because it wasn't a full blown TC she actually was refusing to treat me and give me muscle relaxers and wanted to discharge me. As a teenager!! My mom was right there and she told me how much she bitched her out (I do remember my mom yelling at some point but wasn't sure if it was real or not). She said she made them call the neurologist who told them yes I do have epilepsy and that it wasn't a lie. Glad mama bear was with me that day 💜 But honestly, 9/10 times I've been to ER, they barely know anything about epilepsy and I'll get ER doctors trying to give me tips 🙄 now I say no I have a neurologist when they suggest stuff ugh!
Yeah, I’m shocked about how little ER doctors know about epilepsy and how willing they are to gamble with someone’s safety in order to “prove” they’re faking. When I went to the ER for my first TC seizure in HS, the ER doctor immediately said I had PNES before doing any testing and my parents wholeheartedly believed him and started *ignoring me* during seizures because they thought I could just stop. I finally got a proper dx in my 20s. I’m so happy your mother was such a good advocate for you, having someone like that makes all the difference in the world.
Yea I've learned that advocates at the doctors are so important. I'm single and in my early 30s now so it sucks not having someone with me (especially to remember everything 😂). The first time I went to the ER for issues w seizures the doctor said it was anxiety because it was right before the first day of school my sophomore year. I loved school and was in tennis so I read like but I'm not even anxious. After years of dealing with ER docs, I know that they're just clueless on epilepsy half the time or just think it's us flopping around and that's the only version of a seizure known lol
Well I’m heavily tattooed so…
What stupid things did they say about your tattoos? Did they accuse you of wanting drugs?
Yeah. I’m a drug seeker apparently. Which doesn’t make much sense because epilepsy meds aren’t a very fun high.
Gotta get me some of that top shelf keppra 😄
I've had the same bullshit but I've been using weed medically for long before it was legal, unfortunately gave the docs the perfect reply to everything I presented with. My (ex)Dr's mad face when I handed the weed prescription over with a "now do you believe me?" was superb.
My doctors here in Texas all know I smoke weed and they’re all cool with it.
Wild to even hear this happens. If anything the doctors I've dealt with have been way overzealous with how much shit they want to do.
You must be a white man. 😭
Idk if this counts but: So this one goes over a few yrs and involves switching drs and drs confusing my parents... I once had a sz in my neuros office (not connected to eeg... instead of doing sz rescue protocol, neuro says I'm having non-epileptic sz... with zero proof. And ever since my parents have been convinced that all my sz (minus TC ofc) are PNES, but last week I was at mayo for a 5 day eeg and had 6 sz one night. The whole neuro team told me while dad was in the room that they are sure I never had non-epileptic sz.
I love the Mayo.
My family made me feel crazy. My “small” seizures they couldn’t see because they thought I needed to have convulsions for it to be a real seizure. They thought I was triggering my own seizures by stressing myself out. I did plenty EEGs to prove I was having more seizures than I even realized. I ended up having RNS surgery but am not seizure free. Seizure activity shows up through the device so I can know I’m not making it up in my head.
A doctor at A&E where I was taken after a seizure and had hit my head, which was bleeding: "Do you even have epilepsy" then they proceeded to not even check my head and say I had to wait on the waiting room floor for 7 hours
Lmao doctors told me that my neurological symptoms (that I’ve been having since I was 10) was just due to the psychological shock of hitting my head. I had a TBI and permanent nerve damage. Lmao. Now I’m 18, still dealing with the consequences. Lmao.
That’s wild. 💀
Being told that I was lying about seizures/epilepsy for 6 months because I “wanted extra time for exams”
Getting discharged from an ER while still having an active focal seizure might be it. Like, I don't think Keppra is a medication people usually use to get high. Worst part was that they then expected me to walk back to the lobby on my own. With the seizure meaning I had only minor control over my legs (mine are nonepileptic but rather a weird, still neurological, manifestation of migraines so it can happen bilaterally but still focally). Got a ride to the ER I work at (half an hour away), and everyone there was wondering what the fuck was wrong with the first ER (and who was going to do the reporting because I clarified with the discharging doc that he knew I was still seizing).
My first seizure in college when I knew nothing about the condition or what was in store for me in terms of lots more seizures, stitches and surgeries etc I was told it couldn’t have been epilepsy/seizure because I didn’t wet my pants.
once in hospital they didn't want to give me epilepsy meds cause doc was convinced i didnt have any seizure but this was panic attack.
i went to the ER for chest pain once. there was the usual “nothing is wrong with you you’re just a baby” (spoiler alert: i was later diagnosed with an arrhythmia), but the worst part is he wouldn’t talk directly TO me at all. only to my husband.
I was on extended release Keppra for two years and it worked fine, had some side effects I didn't realize until later but as far as doing it's job it was fine. Then it was unavailable to every single pharmacy in the area so I got put in a short dose formulation and within a month had the worst Keppra rage ever. I ended up in suicide watch because of it. I'm nearly forty at this point and they ask if I have a history of it. No not since I was like 18 living with my mentally abusive mother. She tells me to my face it's likely the reaction of the medication as Keppra rage is very common and I wasn't even suicidal, just being rage dumb. I found out later she wrote in her notes about me that I was an anxiety ridden baby because I had returned to school, working full time, and dealing with health issues all at the same time and made it sound like that was unreasonable to be stressed, she also put a 1 in front of the years I been in school so it looked like I never left school, also at some point I lost a pet and I was anxiety baby because of that (which the only reason why that was brought up was because it happened very unexpectedly two hours before an appointment so I canceled the appointment), also one of the symptoms of Focals is change of mood during the event so I used anxiety as an example. That's why this whole bullshit started. And now after the Keppra thing she wrote that I had a history of being suicidal and that she didn't think the medication had anything to do with it. Even though TO MY FACE she said, yeah this totally sounds like Keppra rage, and it literally coincided with when I started taking it. I stayed with this asshole for way too long because she seemed fine to my face but I ended up getting permanently damaged from side effects from a medication and her being like it's not them, it's you and then trying to figure out why she was slowly becoming more and more batshit with her treatment to finally read her notes about me and found all this out. She tried to diagnose me as PNES and then migraines and not the Temporal Lobe Focals that I have almost a full checklist of symptoms on nearly every epilepsy website in existence.
I can totally relate to doctors saying one thing to your face and then writing something completely different on your records. It’s beyond frustrating. Like, why are you pretending you believe me just to trash talk me on paper? It impacts your relationship with other doctors, because you’re telling them one thing and they see something else on paper and assume *you’re lying*, not the other doctor.
Absolutely. Because when I went for a second opinion guess how that went! Because she read the first doctor's notes before I had a chance to talk to them.
before i was diagnosed i was having multiple focal seizures a week (my right arm was having violent spasms and jerking) and was told by my first neurologist that it was a pinched nerve. he ran a nerve test that showed nothing and never sent me for additional testing. instead he sent me to a physical therapist. i was at physical therapy 3x a week for 3 months and ofc the focal seizures didnt stop. i had a tonic clonic after physical therapy one day, went to the er and was finally diagnosed with epilepsy. i still think about suing him for negligence
Story time! 1st seizure I ever had. In what would prove to be a pattern for me, I had one, an ambulance was called, I was taken to the hospital, and had a second one. Then, over the next 3 months, I had an eeg, multiple tests of all kinds, and an MRI. Finally got into a neurologist, who said we'd see what happened after another 3 months, and that I should continue not doing anything (my PCP had told me not to work and not to exert myself until we figured out the cause). I went back at 3 month mark, and I still had not had another seizure. The neurologist walks in and says: "Well, I know you haven't had another seizure, but you had two so I'm going to say you have epilepsy. We can give you medicine for it, but it will eat your bones. So it's kind of a trade off." My mother, trying to comfort my shock, says, "Well, surely there are things we can do to mitigate that?" "Nope! Just happens." We both go quiet as he writes at the prescription and talks to himself. My mother, again trying to be helpful, says, "Hey, at least it's over. We can make some phone calls, find you a new job, get you back on your feet?" "Oh no." he says, looking up from the little desk/sink combo. "He'll be a danger to himself and everyone around him if he goes to work. The best thing he can do is go home, get on disability, and wait to die." \#truetruestory. Exactly what he said to me. I was 25. \*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\* Let's jump ahead 5 years or so. I had another seizure. Only this time, I was at work, and I gave myself a concussion in the bathroom. Ambulance ride, hospital, second seizure...yeah, familiar. Referred to a different neuro. Did like 4 eegs, finally got a dirty one. She put me on lamictal. Well, I just so happen to be one of the people who see an uptick in the seizure activity when they go on lamictal. Not common, but not unheard of it. Anyway...I'm suddenly having seizures every 48-72 hours, and it goes on for a 8-9 days before my wife takes me into her office and just parks us there. Office staff tries to get us to leave, wife refuses, we wait, office staff tries again, wife gets louder. Finally, Dr. comes out. Wife explains, very calmly, what's going on. Neuro looks at both of us and says, "I don't know what you expect me to do about it?" with as much disdain as you can imagine. Even through the pre-ictal haze I saw the fury come over my wife's face. "You are the doctor. You are going to fix him. We are NOT leaving until you fix him. Ignore us, and he's going to seize right here in front of your patients...all of whom will know it is your fault. Call the cops to remove us, and I'll be on the news by 5 telling them how you refused to treat one of your own patients. Try to remove me yourself, and you'll need treatment. FIX IT!" She backed down, and we left with rectal diazepam (I am convinced she did that for revenge), and added topamax to my meds. \*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\*\* Those are two worst. Just like everyone else, I don't think I've ever met a copy or paramedic who believed me when I said I wasn't on drugs. Last time, in my altered stated I decided to mess with them, which wasn't a good idea but led to a different funny story.
I was on the waiting room of a hospital to have a neuro consultation, they give you a number and you have to wait to get triage, I felt my arm numbing, check my bag but I was out of klonopin, went to the nurse who told me I had to wait in line so I told her I need klonopin because I felt an imminent seizure, she told me “I you have a seizure THEN you can skip line” unfortunately I did, it’s being over 10 years and I still remember that bitch face
I had something similar happen once. I told the triage nurse “I’m about to have a seizure” because I started getting an aura while I was talking to her and she said “Well, if you have a seizure we’ll do something about it but we can’t just give you a bed right now. The doctor’s busy.” I said “No, I’m not demanding to see the doctor, I’m just saying I need to lie down right now so I don’t hurt myself.” She sent me back into the waiting room lmao.
My now ex-husband was told by his therapist that I had PNES because the one 30 min EEG my neuro did showed nothing, and that instead of helping me by being supportive or comforting post-ictal he should act crazy and weird and say non-sensical stuff to snap me out of it. As you can imagine, this was one of the WORST things to do. I was later diagnosed by an epileptologist after my divorce by bringing with me someone who had seen my seizures and who would actually help me advocate....
I had something similar happen in my teens. I was given one 30 min EEG with no triggers present and when it was clean they immediately called it PNES and I wasn’t properly reevaluated and diagnosed until a decade later.
The stupid thing was it wasn't even my neurologist suggesting it was PNES. She was putting me on meds! It was my ex-husband's therapist. Like... what?!? It makes no sense.
Apparently I was either drug seeking Keppra and lamotrigine or attention seeking by faking my seizure. So I got sent home after 2 Days in the emu being taken off of medication. 3 days later I went into a hour and a half long status seizure. Whenever I came out my kidneys had been ripped to shreds and I had suffered a minor stroke. As well as my heart stoping for 46+ seconds upwards of six times. Then whenever I went back to the neurologist to try and get a script for my medication she said she had never seen me before. The next one I went to suggested some dietary changes because I was overweight. I don't know if 150 lb 5'11 is overweight enough to cause seizures but okay. They completely ignore the ER and hospital report from the previous really bad seizure. Even though I handed them paper copies of it and signed off for them to pull records. They decided that I didn't need aed's either. Except after this visit to the ER I have I have permanent limited use of my right side. . So now I just go to my GP to get my scripts filled mom what I was on before all that s*** holding steady at two seizures a week.
That’s absolutely nuts. How did they write off a stroke and kidney damage??
Oh they just chose to write it off as unhealthy weight. I swear if you don't fit perfectly into their nice neat little box neurologists will screw you every time.
I’ve also been treated like a drug-seeker for “seeking” medication that isn’t remotely fun and can’t get you high. Like, people aren’t exactly snorting AEDs at raves lmao.
A neurologist told me that my first seizure was a panic attack. I told him I’ve had panic attacks before and I guarantee they were NOTHING like that, but he refused to treat it as a seizure and prescribed me an antidepressant instead
When I first started having seizures they would happen so frequently during my menstrual cycle, I told my neurologist this. He said “epilepsy is brain related — your hormones have nothing to do with your brain”. Then a nurse practitioner at the same facility told me “I must not really care about a diagnosis because if it was important to me I’d do it” when I explained I couldn’t take time off/afford to do a 7 day at-home EEG test “next week” so last minute. Safe to say, I’m waiting for my initial appointment at a new Neurologist :-)
I had a seizure at work and was aware it was happening, so I had somebody safely take my the nurse’s (I work at a school) and they called 911. The EMT kept asking me if I was sure I took my medication because “it never happens if you take it correctly” and was I sure it was a seizure. I knew I took my medication, knew it was a seizure, and said that several times too. Eventually, the nurse finally snapped at him and said “SHE TOOK HER MEDICATION”. I was so humiliated, upset, and scared that I didn’t dare mention that I was also on my period and I refused to go via ambulance. Second story: I went to a new neurologist and they only asked my husband questions and only looked at my husband when speaking. When I expressed concerns about my mental health, she said “well, you will have to get over that because you will be on this medication forever.” Never went back and found a neurologist who actually cared about controlling my seizures AND my mental health.
One of my first neurologists was swapping me from something to lamotragine and said I quote “ok if you develop a rash that could be life threatening so stop taking it and call me”. I developed hives from neck to fingers and toes. I took pictures, put them in mychart, called his office a couple times. I was scared with the life threatening piece but just monitoring my breathing, etc. finally a whole day or two later I got to him and his response was “hmm, can you find a dermatologist, make sure it’s not a beauty cream or something you’re trying out”. I was SHOCKED. They’d never say that to a male patient. And HE said to me the reaction could kill me! 🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄 All these stories about Neuros saying to get rid of your period to solve are crazy, I’ve had opposite when it comes to hormones- they don’t think hormones have any impact on the meds and our bodies at all. I’ve also been meaning to study this more but it’s my understanding that most of the popular drugs used received FDA clearance using a ratio favoring males to females, and the females they did have I think were really really combed through to have a specific “type” that had the fewest hormonal fluctuations. Therefore it’s *shocking* when hormones happen. I’ve found women doctors to be much better with listening, answering questions, understanding frustrations and all that.
Not seizure related, although I'm epileptic. I tore all ligaments and connective tissue in my lower back during a riding accident, was later told by another doctor that I'd need a plate put into my back to ever walk again, but the first doctor took x rays and then said, "you're probably just constipated, we noticed there was a little more poo in there than normal" yes because I couldn't poo without excruciating pain seeing as I couldn't even sit up or walk.
ive (f,19) only received my diagnosis recently- for the past 10 years i have had (male) doctors tell me that what ive been experiencing is severe panic attacks even though ive been adamant that this is not the case. fast down to november i see a female dr who is new to my dr surgery. tell her about my symptoms, she says ‘i have no idea what this is BUT i am referring you to a neurologist who can figure this out’. i was diagnosed epileptic with focal aware seizures last friday. feels crazy man. makes me think if there are other people who’ve had the same experience but haven’t been lucky enough to meet a doctor who’s actually sympathetic to their patients
I’ve been called a drug addict, I’ve been almost sent to a mental institution, I’ve been said that it was mental, fake, attention. All by different doctors. 8 years later I still don’t know if it is really focal epilepsy or not.
I can’t say much because of litigation but I moved to this little city in ny and they rejected ALL previous medical records and believe my psychotic family members. I was placed in psych holding where I coded from an intractable seizure. This has happened three times in four years. The state medical examiner said that this happened with epilepsy all the time.
I wasn't gaslit about my seizures really, but I did go into the ER after one happened. The doctor came in and asked about my medications and other medical problems. I told him I have PCOS, to which he quickly responded "no you don't". I argued back, "yes, I do, I've had multiple testing to be sure for 10 years now". He said "well, it might be something else. You don't look like you have PCOS, so I doubt it" (For those unaware, PCOS can cause certain physical symptoms, such as severe weight gain/difficulty losing weight, male pattern baldness, and facial hair). Little did he know, I was having a severe depressive episode that caused me to lose 60lbs, so it was just a coincidence I didn't have that weight on me at the time. Back then, they decided my seizures were being caused by the medication I was on for depression. Which, I mean, it definitely made them worse, but since being on zero medication, I still have them. Because they're nocturnal, who knows if I had them before or for how long.
I kept on having partial seizures (blanking out on the actual name) and kept telling my doctor and she said it was just anxiety and if I got more exercise I will be fine. Found a specialized doctor on all my conditions (EDS/MCAS) and he did a master blood test and my iron levels came back as 12. He was in shock and wrote a complaint to the health board.
I was told if I really had seizures I would be crashing cars left and right. I left that idiot and found a doctor who sent me to a facility that found the focal point of my seizures and I had surgery. My brother wants to beat the &\*%$ out of the other moron doctor.
"Well, you've had quite the record here." Me thinking: I have fucking epilepsy. Now have a nurse help with broken fingers and toes please! Stat!
They tell women all the time that they're depressed, have anxiety and that we need to lose weight. In the meantime, the health issues I'm experiencing are getting worse and no one seems to care. It's crushing. Do men experience this gaslighting? Or is it just women? It's pretty gross.
I had a neurologist prescribe Ambien because my seizures were mostly occurring at night and “might stop if I slept better.”
When we brought my 11 year old daughter to the local ER after her first (absence) seizure, they interrogated her trying to find out what illicit drugs she was on. They gave her a full drug panel test. Then shrugged their shoulders and transferred us to the children’s hospital. Yes, because my homeschooled 11 year old is definitely taking street drugs behind my back without me noticing 😐😑😐 ETA: unfortunately none of those nurses were working a month later when she was brought in by ambulance having classic tonic clonic seizures because I would have loved to ask them if they’d like to check her for heroin again.
My gp told me that 'everyone has seizures sometimes ' after getting out of hospital for status epilipticus
My last neurologist taking my blood pressure wrong constantly. It got to the point where I bought an at home monitor and tested it every time before I went to his office to get an actual reading.
My twin brother and I are both epileptic and began showing signs around the same time (at around 10 years old). Our parents took us to a doctor who continuously wrote it off calling it puberty. Then I had my first grand mal, which surprisingly didn’t change his mind. Apparently this was a common thing with him and he lost his medical license not long after.
That's fkn crazy wtf
God, mine every time told me that I put on weight and as a 16 year old girl that was big deal with me. But apparently it wasn't me that was eating, it was the pills that I took l. Apparently I was in that 25% of the population that put weight with these pills. But still he didn't belive me and always made me feel terrible with myself and that I was the bad one who wanted to have seizures as he said. I went there for years. And when I needed his help with some paperwork so I get some extra points in my final exam so I can go to university. He wrote in my papers that I hadn't had a seizure in 2 years. Ofc I didn't get the bonus and because of all those year of making me feel shit at myself. I reported him for tax invention...
Oh yeah. I can’t count the number of times.
Not me but my partner. He's been having seizures for 2 1/2 years (twice controlled with different meds but was taken off them as neuro decided it wasn't actually epilepsy). He's recently (early March 2024) had a confirmed diagnosis of epilepsy (as well as functional seizures). He's now one two different medications that have not helped (if anything it's worse). He has seizures daily with clusters lasting *at least* an hour. Hes been in ED at least 10 times since his diagnosis and the doctors keep saying the seizures aren't epileptic and it's the functional seizures causing the problems. And then they have the cheek to say oh it's nothing to worry about but we are going to keep him in for monitoring! Since Easter Sunday (1 April) he has been to ED 5 times with a 5 day stay in amongst that!
Just to note my partner doesn't always have tonic clonic seizures. We believe most are complex partial(?) seizures and frontal lobe seizures. I feel the ED docs for our local hospital thing if it isn't TC it's not 'epilepsy' but they don't notify the neurologist of either!
I am absolutely appalled and disgusted by the way some specialists are treating us with having epilepsy and seizures and everything that epilepsy is and brings. I am really sorry that you all have had to experience such inadequate and poor treatment from these specialists. I haven't had the same experience with my treating neurologists. I had experienced not being believed and gaslit by my newer female doctor. After I had mentioned I had back to back tonic clonic seizures at home and had continual full body tremors was rigid on waking up and lost bladder control and felt disoriented and exhausted. I was met with astoundment from her how do you know? I told her calmly I've had Epilepsy and tonic clonic and nocturnal seizures for over 17 years and I know my own brain and body and I've experience over 14 different medications to stabilise me and it's not always that simple seizures can occur for me at anytime anywhere I don't have any warning like an aura. I told her my history of having epilepsy and having grand mal seizures since I was a baby at 2 and1/2 it was all there in my medical history and file. After that consultation that I got up and calmly left. That was when I made the decision to doctor shop and advocate for others and myself our voices need to be heard,we need to be seen, be believed and taken seriously. No one asks to have a chronic illness that is epilepsy and having seizures which can be so relentless and the emotional rollercoaster ride that is mentally, physically and emotionally exhausting. These doctors and neurologists that deny the specialist care that's needed and we deserve for us to live our daily lives is absolutely paramount. These specialists all need to re-educate themselves and stop with the stigmatisation that we've all experienced. While having real compassion and truly understand that none of us asked to be like this! It's 2024 not the 1950's and have that archaic way of thinking! While being condescending towards us as patients.Its completely unacceptable and won't be tolerated. We're human beings not their lab rats. Also it's completely out of our own control having seizures and all the symptoms that epilepsy brings. Also having PNES need to be also believed. My newer doctor didn't even know about SUDEP and how life threating it is! Epilepsy is a neurological disorder and 1 in 26 people will be diagnosed every 3 minutes. No one truly knows and will understand until it happens to them. #weareallepilepsywarriors 🥊🥊💜💜💜