Dilantin eeg

A little background. I had an Avm brain bleed in 2007. Embolization and gamma knife radiosurgery obliterated the Avm. Right side paralyzed for a while and speech therapy, but a lot of work and great people at they rehab and I got a lot back. Smaller muscles in fingers and toes not so much and still wear an ankle brace for support. Was on Dilantin just in case for 3 years until my neurologist and I weaned me off.
No seizures. Just ocular migraines. Can't remember if I had them while taking Dilantin.All aura (tingling in right arm and face and zig zag lines in vision). Usually every couple months. Started with tingling, progrssed to zig zag for around 30 minutes Now my aura changed. Still starts with tingling in arm and sometimes the tip of my tongue, but it doesn't go to zig zag lines anymore. Last 2 times produced fear and lasted a week on and off.
Scared me enough that I went to the ER twice in 9 days. They ran all kinds of tests. MRI was stable. Ecg showed trace regurgitation in my heart. Eeg was normal. Ct was normal other than the radiation scar the was stable. Eventually I felt better and they sent me home with lipitor.
Talked to my old neurosurgeon and he suggested keppra (which I was kinda resistant to) so he suggested a repeat Eeg for possible subclinical seizures. I did the Eeg which came back moderately abnormal with slowing in one part. No evidence of seizures though. Neurosurgeon didn't have much to say about the test, but my neurologist suggested keppra after he looked at the test, but ultimately left it up to me. Fast forward 4 months and I'm having the exact same thing aura and been reading about focal awareness seizures and scaring myself.
TLDR; Long story to ask a question. Does anyone have focal aware seizures for days with just sensory feelings?
I am going to call my neurologist tomorrow, but was just looking for any comparable episodes I guess. Thanks for reading.
Edit-a phrase

I (24f) mostly want to walk through this because when my brother (22m) was in his coma I was looking all over for anyone’s personal account of positive outcomes for New Onset Refractory Status Epilepticus/Febrile Infection Related Epilepsy Syndrome (NORSE and FIRES). I didn’t find anything optimistic outside of vague and tiny study statistics, so I want to be a point of contact in case anyone’s looking for the same thing, hope.
My brother has never had a seizure before, but on May 30th, after a week of a flu-like illness, he experienced a tonic seizure, and my mother brought him to the hospital. He began to have more over the course of the next few hours, and over the next few days they only increased in frequency. The doctors treated it aggressively with about 5 anti seizure meds, which ultimately weren’t doing anything. They were hypothesizing meningitis, encephalitis (viral/fungal/bacterial and then autoimmune), West Nile virus, an infectious disease from living next to a water treatment plant, etc. They were fast about putting him on IVIG and steroids but those had no effect. His test results in his spinal fluid/blood/everything kept coming back normal. He entered refractory status epilepticus and the doctors placed him into an intubated medical coma in the ICU.
He ended up on 200mg+ of Versed/midazolam, which, if you know about this benzodiazepine sedative, is fucking ridiculous because its max is 10mg. His seizures kept returning so we placed him in a barbiturate coma which was close to brain death on his EEG. The seizures returned anytime we reduced sedation. He was put on tocilizumab, which helped a little with his epileptic activity, but not enough to wake him up status epilepticus-free. He was then put on Anakinra, which did a lot of heavy lifting, and brought us to the point where he could be partially awake, but still on 20mg of Versed, and a little ketamine.
This part felt blind because the only other considered alternative immunotherapy, Rituximab, is close to chemotherapy levels of brutal on the body, and only helps with autoimmune encephalitis, which wasn’t showing up on tests that he had. Our ICU neurologist contacted a Yale professor friend who specializes in NORSE, and recommended intrathecal dexamethasone (IT DEX).
It worked unbelievably well. My brother was able to wake up fully after 2 months, and he’s recovered well from the toll of a long coma, completely brain damage free. He had memory gaps between the last 5 years, which a neurologist said was interesting because it takes about 5 years for memories to be stored more generally throughout the brain. He has been able to remember a lot just by looking at a visual of it. He’s currently on a shit ton of anti seizure meds, but we’re working on winding those down. Here’s his med list just because it’s crazy:
Depakene - 4000mg a day Phenobarbital - 245mg a day Clobazam - 20mg a day Perampenel - 8mg a day Topamax - 100mg a day Keppra - 3000mg a day Carnitor - 2970mg a day Dilantin - 600mg a day
So honestly I’m less familiar with antiseizure meds, but from everything I’ve heard that’s fucking crazy. Would love to hear if anyone’s had these together before. Luckily it’s being titrated down, and the goal is to have him off the majority in a year or two.
Anyways, this is probably a lot of medical jargon, but I’m just posting this to Reddit just in case anyone ends up going through this rare condition and is looking for someone’s experience in a positive direction.
Tl;dr - NORSE/FIRES case ends very optimistically with experimental immunotherapy. Long road to recovery, but no brain damage or drug resistant epilepsy. Posting because I wasn’t able to find positive outcomes online, so I thought I should share this one if people need it

Hello /Epilepsy,
My mom was recently diagnosed with epilepsy. I’m very scared and new to all of this and would love to hear anyone’s advice.
My mom was recently hospitalized after we found her on the floor, unable to stand due to her body going limp every few seconds. There they noted symptoms of opioid overdose and kidney failure, and after running some blood tests, they found she was overdosing on her morphine prescription due to her kidneys not excreting it fast enough.
They then conducted an EEG test to monitor her brain, and they concluded she was having multiple non-convulsive seizures, specifically Absence Seizures (she also may of had clusters of Drop Seizures explaining her state when we found her). Additionally they conducted an MRI scan which thankfully didn’t show signs of a stroke. They diagnosed her with Toxic Metabolic Encephalopathy as well.
After flushing her system with IV fluids she seemed to stabilize. She was definitely herself at one point, laughing and socializing as normal. She was discharged a few days ago and is now on 300mg of Dilantin (phenytoin ER) along with 20mg of Lexapro (escitalopram), which she was already taking before.
However, since being discharged, she has gotten consistently more disoriented and delusional. She has a hard time finding words, often blinking very fast while thinking. She can’t keep track of conversations and often brings up random things, getting frustrated when we don’t understand. Today she couldn’t figure out how to work the TV remote.
At first I thought this was just some residual effects from the seizures and she was recovering, but now I’m not so sure. I’ve been researching Dilantin and found that some of the side effects are delusion and confusion. However, it could also be that Lexapro’s SSRI effect is interacting with Dilantin. Additionally, I’ve read that certain anti-epileptic medications can cause a lot of these symptoms in those suffering from Toxic Metabolic Encephalopathy. I’m also concerned that she doesn’t even need to be on seizure medication, since it was most likely due to the excess morphine in her system. She hasn’t had seizures before this.
So, my questions are:
Has anyone here tried Dilantin, and what were your experiences starting it? Were you delusional, confused, zoning out, etc?
Has anyone here taken an SSRI with Dilantin (or a different kind of anti-epileptic medication) and experienced a similar state of delusion and confusion?
Finally, has anyone here suffered from Toxic Metabolic Encephalopathy due to the introduction of anti-epileptic medication?
Any and all advice is appreciated!

HIS case history he has neurocyteosis pork tapeworm disease from past 20 yrs everything was fine with him jst on anti epilepsy medication with anxiety.. From Aug 2021 he was diagnosed with sciatica right leg confirm in mri spine l4 l5 nerve compression adviced for physiotherapy. He did n getting better but he fell down in home broke his left wrist physiotherapy stops for 4 months in now April 2022 he had a foot drop in his right Leg doctor advice for spine surgery he underwent decompression surgery in June 2022 after surgery physiotherapy continues for a month or so and I saw the progress in his walking he himself went to hospital but after a month he went for 2 surgeries one for fistula ano bcz he had his constipation for years and the other one is for correction in his left wrist misaligned bone fracture which was happened 6 months back..again due to multiple surgeries physiotherapy stops . IN March 2023 after a gap of 6 months physiotherapy continues but now he has swelling in both legs so we went to spine surgeon for review he did whole spine mri which came back normal he told us to that meet your neurologist your spine is ok.. Neurologist suspect something this time conduct ncv,emg test send us to his senior neurologist she conduct again ncv emg test and told me that it's mnd in April 2023 18 months after sciatica issue ,now he cant balance himself without cane or support ,I took him to physiotherapy by holding his one hand ,I met with another neurologist who advice for brain eeg,also his petscan is normal ,blood report is normal has vitamin d deficiency with his anti epilepsy medication he has some muscle wasting not so significant with fisculation in upper left arm n right calf. I want to know should I have to make him do physiotherapy does it help also in 2018 his gastroenterologist which he met bcz of constipation wrote Peripheral neuropathy in future bcz of a drug called Keppra n advice against tht drug but his Neurologist ignore tht thing he is continue on the drug till now ,will try to get away that drug also he takes dilantin ...neurologist which I recently met told me it's hard to Take off the drug but will see after brain eeg .. I m so confused .

After the 2nd "positive" update there, it turns out that the MRI showed swelling in the hippocampus, and most of the doctors and psychologists seemed to doubt the idea that bupropian was the primary cause of the seizures.
She has so far been seizure free since, but it has been a scary ride. She was CONSTANTLY nauseous in the hospital, and they ended up discharging her with dilantin after 5 days in ICU. We had to go right back to emergency the next day because the nausea was so bad she couldn't hold down any food whatsoever and had almost no appetite. She was also not holding down her medication.
After another week in the hospital, she started to be able to manage her nausea by taking Zofran, and started to show a desire to eat again... but then she started developing a rash, and they discovered she's likely allergic to the dilantin.
They switched her medication to Vimpat, and noticed her rash started to go away. She was allowed to go home yesterday and seemed mostly okay so far, until this afternoon. We decided to go to the mall with our 9 month old daughter for a sense of normalcy. She went to Sephora and bought some makeup, because she wanted to cover up her rashes/bruising. We ate at the food court and everything was seeming well, until she said she started to feel really overwhelmed by all the stimulation.
We didn't realize it was good friday before we left and that the mall would be so chaotic (it's a megamall), and unfortunately she started to vomit a huge amount in the car ride home. Like at least 3 cups of fluids came out.
Now she's feeling extremely tired and sick and depressed.
I feel so bad for her. I really hope we can manage her symptoms and really REALLY hope it turns out that she is able to avoid having regular seizures at all, and that it was just a one-off thing, but right now it's feeling like our lives are just turned completely upside down. Every time we start to get a positive outlook, we get smacked in the face. I'm dreading the day when she has another seizure, especially if it's anything close to as bad as the first one was.
And through all of this I am not only her caretaker, but have been pretty much the main caregiver of our 9 month old daughter, and am trying to put on a smile for her. I am terrified.
I feel like I need to see some success stories, of people who had only one seizure incident and managed to stay seizure free since. I know I'm unlikely to find such stories on epilepsy - why would someone hang around this subreddit if epilepsy wasn't an ongoing concern for them?
I don't know how to handle my life right now. The baby is now waking up from her nap and I have to go deal with that..
​
previous posts:
https://www.reddit.com/Epilepsy/comments/1232hs8/wife_had_sudden_status_epilepticus_yesterday/
https://www.reddit.com/Epilepsy/comments/1243j5e/optimistic_update_after_eeg_results_neurologist/

Been getting these weird panicky aura-things for a few months now and booked a consult with a neurologist for the end of April because I heard that could be an indication of temporal lobe epilepsy.
Well, yesterday at work, while I was running the store, I had a full on tonic-clonic seizure and got rushed to the hostipal and shot full of Dilantin. IVs, EEG, a catheter up my weiner, the whole nine yards. As of today I'm back home and slept in my own bed but I'm physically exhasted from the spasms and trying my hardest not to doom-spiral in my my head over the idea of having seizures/taking zombie meds for the rest of my life.
Any other epileptic RSers here who can offer me some kind words of reassurance?
edit: oh cool i spelled “epilepsy” like a retard. good job idiot.

I'm curious to know what my recent 7-day stay in the hospital would cost if I lived in the US. My hospital stay included:

• Ambulance to the hospital
• 7 nights in hospital, which included everything that you would expect (3 meals a day, round-the-clock nursing, etc.)
• 2 CT scans
• 1 EEG
• 1 MRI
• Consultation with neurosurgery
• Consultation with neurology
• 2 sessions with a physical therapist
• Twice daily doses of levetiracetam, dexamethasone and lamotrigine
• Once daily dose of dilantin

This hospital stay was just step 1 of my diagnosis and treatment. I didn't want to ask for too much, but if anyone wants to provide a more thorough number (or even just prices for these specific items), I would be curious to know it: 3 more MRIs, 1 more CT scan, a craniotomy requiring a 4-night hospital stay, 2 more appointments with neurosurgery, 30 sessions of radiation, consultation with a radiation doctor, consultation with a medical oncologist... and honestly probably more but the last few months have been a blur haha.
I live in Canada, and the only cost that I have incurred is CDN$380 for the ambulance (plus my loved ones have had to pay for parking when going to the hospital). To my American friends I'm honestly sorry for rubbing it in, but I just can't imagine having to deal with financial stress and paying bills on top of what has already been a traumatic time, and I'm curious what that would have looked like.
(Final note: I would request that people not mention or ask about my specific diagnosis. Some basic Googling will probably get you most of the way there, but as I'm sure you can imagine it's a sensitive subject that I don't want to talk about.)

Hi all. I’ll throw out the question right off the bat - have people in this group gotten to a point of mental and physical health similar to that pre-epilepsy?
[Context] About two months ago I had a few seizures (first in 40 years - febrile seizures as a child) landing me with a diagnosis of epilepsy. I am now awaiting an MRI and a sleep-deprived EEG so that my neurologist can better define the cause / extent of my epilepsy. Medication has been rough (Dilantin >> Lamotrigine) leaving me feeling tired and irritable most of the time; there have been good days too.
For those who have had a “later-life” diagnosis of epilepsy, how has your life changed (career, place of residence, family, etc)? After ten weeks I’m finally starting to grasp the significance of this condition and am looking for any sort of positive experience to help boost moral.

My boyfriend had his first seizure December 2022, followed up by another a few hours later in the hospital. His mood/personality had not changed. 2 weeks ago, he had a seizure. The ambulance was called and when my bf was able to speak and move around, he became verbally aggressive to the EMT’s and myself. He started throwing things, stormed around and stayed quite mean. He refused to go to the hospital. The next morning he had 2 more seizures. Once he was able to talk and move around, he again appeared irate, verbally aggressive, and threw things around. His meanness and aggression were directed at myself and the EMT’s. He has never raised his voice, yelled at me, been aggressive, told me to f@@k off or anything.
Yesterday he had a seizure while I was driving. After I pulled over and helped him best I could, I called an ambulance as we were on a very busy highway and I thought if he came to and was like how he had been before, I knew we needed help. After he came to and got out of the car to pee, his verbal aggression was worse than the previous times. He refused the ambulance and stormed off along the highway. I followed on foot and the ambulance drove far behind to help keep traffic away from us. My bf crossed the highway, jumped over medians, went through a field and disappeared. The ambulance had called the police and they showed up, managing to catch up with him. He was very confrontational, verbally aggressive, but finally agreed to get in the ambulance as long as I was no where near him.
His eeg is next week and his first meeting with the neurologist is in 3 weeks. He’s been on Dilantin since the 2nd cluster of seizures. The personality change seems to go away after a few hours and a nap. Is the drastic change in personality a normal seizure reaction? Does that personality change ever become permanent? The person he becomes terrifies me beyond words.

My (31F) mother,(52F) had seizures from the time I was 9 till I was about 20 off and on. Before these seizures came, she went years with terrible migraines. My mom also used methamphetamine quite a bit through the years, and it always got worse when she was clean. In her recovery I learned she started around 13, and dabbled in it in the late 80s and through the 90s but more as a weekend or holiday type drug. Her first few tears were short, normal seizures. When I was 16 she had a seizure that would just not stop. I had to call my neighbor to ask her to take care of me, and prepare to say goodbye because it shouldn’t last more than a few minutes. I remember clearly being told to tell the Dr what drug she uses, and I didn’t even know she used anything outside of marijuana, which dr would not hear. Which I suddenly realize they put narcan in her nose and it didn’t work.. They were prepared for her to be in a medical coma or die which did happen for 3 days (medical or natural idk but I’m pretty sure it was medical induced) when they gave her “Dilantin” & she came out of it. My worry is she’s never had an EEG that shows anything, and I’m starting to notice some side effects that I’m not familiar with as she’s gotten older. Should I do something? If she sees a Dr they don’t really do anything at all so she quit going (there isn’t anything to do other than take meds but she don’t have the seizures) … she’s been clean for 4 years now and it’s like she’s just spiraling.
Symptoms: -very childlike, started like a young adult, turned into a new adult, a teenager and now she seems very like a small child, maybe 8-9 years old with behavior, comprehension, -very addicted to her phone if she gets on it, like a trance she can NOT get out of -will spend hours in a store getting nothing. -will take hours upon hours to take a shower and do hair or makeup -will take hours to pack a small bag -very impulsive with money -very moody and extreme highs and lows -gets very bad stomach aches -wakes up, sits up and sleeps while sitting up -gets up at night and falls/hurts herself -rash all over her body especially in the Sun -hair falls out, it’s very thin
She also does not use any drugs other than marijuana, she has been ripped away from all of that and she acts different anyway now.
She takes a pill to help her not go to the bathroom so much, clonipin as needed and meloxicam
I worry her brain was damaged. Could it be? And was it a seizure you think?

I have had two incidents of multiple Tonic-Clonic Seizures (February and November of 2022). Both times I spent 4+ days in the ICU / PCU. Both times were overnight or in the morning. (42 y/o M). Currently, after my 2nd TCS, my wife called 911. (She had the kids at a friends house during the one in February as I had a league tennis match the next day). When the November one happened, the Paramedics came and I was able to answer their questions and knew where I was, etc. Then as I was getting myself together to go to the ER with my wife on my own, I had another TCS in the bathroom. The Paramedics came again and took me to the same hospital as in February. Both times I was unconscious and was intubated for about 48 hrs in Feb and 60+ in Nov. I don’t remember anything about these starting. I DO NOT REMEMBER ANY OF THIS, BUT I DO REMEMBER COMING OUT OF BEING SEDATED.
I am unable to drive. Currently I am now taking 4g of Keppra, 360mg of Dilantin, 400mg of Lacosamide and 20 mg of Clobazam each day with “emergency” Klonopin.
I have some memory issues. I feel like stress is a trigger for me. I work as a Civil Defense Attorney and was either in trial (Feb) or on Standby for another (November).
I have been working again since 1/3/23. I feel like I have to take a fistful of pills multiple times per day.
I like my work, but am open to other options. Not sure why I am posting this, but also don’t want to put any more stress on my family (2 kids at 8 and 10 y/o).
Any thoughts or advice are appreciated.
Thanks in advance.
(Final note: I had a brain tumor resection in July of 2008 and Chemotherapy afterwards. My neurologists have opined that it is largely related to the “cavity” from where the tumor was removed. This was confirmed again in December 2022 by an epilepsy specialist neurologist, who believes that activity is occurring in the cavity and may not all be true seizures. The upsetting part is that during my February stay in the ICU,they never did an EEG)

I had a follow up with my Neuro today after doing a 3 day EEG at home. I have tried them twice before but took them off early, I just couldn't make it work with kids and commitments. I am at a place now where I can do some things for me so I decided to have it done again. My Dr said it was substantially worse than the others. He asked what my thoughts were about surgery, resection or VNS. I was so surprised by the question (he's been really weird about even confirming my seizures at times) that I told him I would have to think about it. A lot. I have been reading about both tonight and of course I'm scared of the thought of either. I take 500mg of Dilantin and he upped my Lamotrigine today from 200mg to 250. I would love to hear from anyone who has had any procedure for their epilepsy! I have mostly simple partial and have only had 3 grand mal seizures about 3 years ago, all within the same day. I have had simple partials my entire life. I did not start treating them until the grand mals. Hope to hear your stories :)

Nov 2021 I came home to find my husband (27) on the floor of our bedroom. By the time the ambulance arrived he had gone into Status.
He was put into coma for 3 days where he was woken a couple times and would seize right away. (All Grand Mals) He was sent home with Keppra 2000mg and Dilantin400mg a week later.
He had another grand mal seizure January 18. Brought him to the hospital, keppra levels came back low. They topped him up and sent him home.
Between this time he got weaned off keppra because it was seriously affecting his mood. Started 10mg clobazam
May 4 he had 2 grand mals 2 min long with about 30 mon recovery between. Dilantin levels were way way below therapeutic. Again they topped him up and sent him home. Raised his dose from 400mg to 600mg and 10mg clobazam
May 17 at 10 pm he had a grand mal and recovered fine. Went to bed.
May 18 6am had another grand mal. Then had another one 2.5 hours later. By the time ambulance arrived he’d had a 3rd and 4th one.
They then told me he had more seizures in the ambulance and another one when he got to the hospital.
So far all of his tests have come back clear. Even EEG. The doctors seem stumped. He was perfectly healthy, no family history, no head trauma etc.
Does anyone else have a similar story?

Time To Wean off Keppra
Hey everyone So the story goes like this. I was taking tamiflu since I had influenza A, was on it for about 5 days then went out drinking (took it the morning of but not the night) when I was in college (21 at the time) I was still sick when I went out drinking and only got a few hours of sleep. The next day I went to work and don’t remember any of it. I had a seizure at work then another one when I was at the hospital maybe an hour later (couldn’t tell ya the time). Since my mom has/ had (no meds and been off Dilantin for 17 years) epilepsy the doctor wanted to run a eeg. They ran the eeg and I had activity at night so they put me on keppra 1000mg 2x a day. It has been almost 3 years and I have been fine and seizure free but I remember prior I had more energy and felt sharper. My parents want to take me off since I’ve never had a seizure before and they figure it has been long enough on the meds.
I don’t really blame them for wanting to take me off since I was 21 and had my first seizure after a few hours of sleep and on tamiflu with the flu and had been drinking/ clubbing the night before. Do you all think that it was just the perfect storm for a seizure? I will talk to a few different neuros soon but am just wondering some opinions on the story. Thank you.

I have TLE and went through 5 meds to get it under control (Lamictal, Keppra, Dilantin, Carbatrol, and Klonopin.) Everything was great for 4-5 years and I stopped taking my meds completely. Another 5 years went by and I still didn't have any seizures.
During that last 5 year period, I was a heavy marijuana user and I would use it throughout the day. About 8-9 months ago I started getting really bad anxiety whenever I smoked even a little. I would get extremely pervasive negative thoughts that I would fixate on. It would almost drive me into a panic attack. I would convince myself that I was dying of cancer or some other horrible thing. I would try to "microdose" and only take a very small amount but even then I would get anxiety.
So about 8 months ago I quit using Marijuana complete, cold turkey. It wasn't difficult at all and I had minor withdrawal effects. A few months later I started having auras at night every few weeks and I had a grand mal about 2 weeks ago.
I had my Neurologist appointment today and she suggested (among a myriad of other possible things) that the Marijuana may have been preventing my seizures while I was off of medication. I'm going to be doing an MRI and EEG in the next few weeks.
​

• Has anyone else had any similar experiences with Marijuana?
• Has anyone had an experience like this where they were a long-term user and then had to stop because it caused anxiety? Were you ever able to find a strain that didn't cause anxiety? Edibles? I've tried CBD flower and while it doesn't give me anxiety it doesn't really do anything.
• Even though my Neuro said it was highly unlikely because of my history and previous MRI (12 years ago), I am just terrified of what they are going to find on the MRI. I don't really have a reason to be afraid but I just can't get it out of my head.

Male/33/160lbs/doesn’t smoke. Sooooo I’m going to try and break this down simple and can always answer more but if anyone can help or give advice I would be so thankful. 2006 (I was 17) got my first seizure. Luckily I was able to stumble to my dad’s room while pretty much unconscious he watched me have tonic clonic seizure lasting 40 minutes (yes 40 minutes). He called 911 they took me to the hospital and I had 6 more. One of which I had DURING an EEG. The hospital neurologist said it was epilepsy and put me on trileptal a month later same thing happened. He then added keppra to the mix. A month later I went into status epilepticus. I stopped seeing that doctor and went to NYU/Columbia university and saw Dr. Karceski. He looked at the EEG and said it’s not a seizure it’s a “silent migraine” he put me on amitriptyline. A month later same thing. I get them every month roughly for ONE DAY that day I can have 1 all the way up to 10. It then takes a week till I can feel “normal”. After doing the amitriptyline for a year with no help I saw a Lyme disease specialist. He said it was due to Lyme’s Disease granted I had it when I was 12 months old (first person in NJ to ever get Lyme they actually flew Mayo Clinic) he put me on doxycycline. I was on that for a year to once again no prevail. Mind you every time I see a new doctor I get off everything so whether I am on any medicine or not it has yet to have any effect. I then went to Morristown Neuroscience Center. He looked at the same eeg and said it’s not a seizure or a migraine it’s a sleep disorder. He put me on clomipramine. Long story short a year and no results. Then went to UPenn and she said it’s epilepsy and put me on lamictal. Kept upping the dose till 600mg a day and zero results. Pretty much gave up and my life is pretty much in fear. I’ve been on Dilantin, depakote, trileptal, keppra, lamictal, gabapentin, klonopin, diazepam, I’m sure I’m missing a few. I have tons of videos of recording of my episodes. They can be different all the time. They time of month they start always begins in my sleep then I will get them the rest of the day. I can’t eat for a week after either. I can have tonic clonic all the way to standing up walking in another room because I feel them coming have it while still standing then come back to where I was and speak jibberish. Regardless of the severity of the episode the after effects are always just as bad where I literally am on a different planet for a week. I’ve gotten mri’s mra’s catscans 7 day eeg’s. No doctor can agree on what they see and no doctor can find anything to help. 16 years later over 800 seizures and I feel I just need to give up I just don’t get why they don’t care. If anyone had been in my situation and found a solution please share. I have many videos of me having and episode but I will post the most recent at the moment it will be in the first comment. I will add more if requested. Please help!

Sooooo I’m going to try and break this down simple and can always answer more but if anyone can help or give advice I would be so thankful. 2006 (I was 17) got my first seizure. Luckily I was able to stumble to my dad’s room while pretty much unconscious he watched me have tonic clonic seizure lasting 40 minutes (yes 40 minutes). He called 911 they took me to the hospital and I had 6 more. One of which I had DURING an EEG. The hospital neurologist said it was epilepsy and put me on trileptal a month later same thing happened. He then added keppra to the mix. A month later I went into status epilepticus. I stopped seeing that doctor and went to NYU/Columbia university and saw Dr. Karceski. He looked at the EEG and said it’s not a seizure it’s a “silent migraine” he put me on amitriptyline. A month later same thing. I get them every month roughly for ONE DAY that day I can have 1 all the way up to 10. It then takes a week till I can feel “normal”. After doing the amitriptyline for a year with no help I saw a Lyme disease specialist. He said it was due to Lyme’s Disease granted I had it when I was 12 months old (first person in NJ to ever get Lyme they actually flew Mayo Clinic) he put me on doxycycline. I was on that for a year to once again no prevail. Mind you every time I see a new doctor I get off everything so whether I am on any medicine or not it has yet to have any effect. I then went to Morristown Neuroscience Center. He looked at the same eeg and said it’s not a seizure or a migraine it’s a sleep disorder. He put me on clomipramine. Long story short a year and no results. Then went to UPenn and she said it’s epilepsy and put me on lamictal. Kept upping the dose till 600mg a day and zero results. Pretty much gave up and my life is pretty much in fear. I’ve been on Dilantin, depakote, trileptal, keppra, lamictal, gabapentin, klonopin, diazepam, I’m sure I’m missing a few. I have tons of videos of recording of my episodes. They can be different all the time. They time of month they start always begins in my sleep then I will get them the rest of the day. I can’t eat for a week after either. I can have tonic clonic all the way to standing up walking in another room because I feel them coming have it while still standing then come back to where I was and speak jibberish. Regardless of the severity of the episode the after effects are always just as bad where I literally am on a different planet for a week. I’ve gotten mri’s mra’s catscans 7 day eeg’s. No doctor can agree on what they see and no doctor can find anything to help. 16 years later over 800 seizures and I feel I just need to give up I just don’t get why they don’t care. If anyone had been in my situation and found a solution please share. I have many videos of me having and episode but I will post the most recent at the moment it will be in the first comment. I will add more if requested. Please help!

Hello fellow epileptics. Yesterday, my neurologist told me he thinks I may be a good candidate for brain surgery, and this frightens me. Does anyone here have experience with this that would be willing to share any thoughts, feelings, stories? Any experience with epilepsy centers -- particularly in Indianapolis, Chicago, Portland, Los Angeles, or Hawaii?
Below, I'm just gonna lay everything out in case it can answer any questions someone may have ahead of time, or if you just feel like reading a stranger's story, I suppose. TL;DR version: The onset of my epilepsy was as an adult ~8.5 years ago, and my medication dosage has been continuously increased for years while I continue to have absence seizures. The other day I had a very unique very BAD one, for me (I know many people have worse regularly). Docs are concerned meds may never be able to fully stop all my seizures, and I'm almost "maxed out" on the dosages at this point.
So my background, if interested: I'm 32, and I discovered that I have epilepsy at age 23 when I suddenly had an unexpected convulsion grand mal seizure while driving up a dark windy mountain road. Happened a couple more times until I was able to see a neurologist only a day or two later, and immediately put on Dilantin. I have not had a convulsion since. The neurologist weaned me off Dilantin (said it's an old school drug that will stop seizures ASAP but not a good one to stay on overall) and on to Lamotrigine, which kept it all under control for a while until I started having absence seizures (blank stares, smacking my lips, disoriented kind of thing). My doc upped my Lamotrigine dosage to the "max" (300mg 2x/day), then after this kept happening, added a tiny dose of Keppra (Levetiracetam) on top. I still take this dosage of Lamotrigine-- it has not changed since. I moved to a different state, and in 2016 got a new neurologist who scoffed and said my small Keppra dose was for children and basically pointless; upped that dosage to I think 250mg 2x/day. That neurologist retired in 2018 or so; then I went to the guy who took over his office, who told me he thought I'd be a good candidate for brain surgery.. on my first appointment. I was not into this idea, and decided to try a new neurologist. Second opinions are always good. I'm happy with the new dude and still go there. Sucks switching doctors a bunch though.
So through the last 6 years or so, my dosage of Keppra has kept getting increased as I keep having these absence seizures. I have had a handful of EEGs, including ambulatory, and a couple MRIs - results always come back saying I have like little sparks going off in my brain that we need to get under control. I've been on 750mg 2x/day Keppra for a couple years, and keep having seizures, and kept putting off getting my blood drawn (I hate needles and just idiotically procrastinate). Until..... this past New Year's Day. I had the worst seizure I've ever had, not including the initial pre-medicated convulsions in 2013. Eyes rolled back in my head, arms tensed up, clenched jaw, went on much longer, just ugly stuff that traumatized my boyfriend who legit thought I was dying while witnessing it. The next night, I had a more typical absence seizure that was very brief. Soooo he freaked out.. we've lived together for years and he's seen me have these other seizures like dozens of times, but nothing like that bad one. I got my blood test the next morning. My neuro office called me and said the Lamotrigine levels are fine, but Keppra is hella low. I got an appointment yesterday and started taking 1000mg Keppra 2x/day. He wants to up me to 1500mg 2x/day, but will start with this for a couple weeks at least. He told me that HOPEFULLY that will get me seizure-free, but if that's not the case, then that's the max I should take of Keppra and he thinks I should go to an epilepsy center to get evaluated for brain surgery. Ah, so it has come back around to this. I'm absolutely willing to go to a specialty epilepsy center and get whatever additional tests, and be evaluated, but honestly I'm unsure if I would actually go through with brain surgery because frankly that's straight up terrifying. I am open to listening and considering it, though. But I need to do a lot of research and talk to a lot of people. "Wouldn't it be wonderful to be seizure-free and unmedicated for the rest of your life?"
Side note about location... I currently live very close to Chicago, but in Indiana, and my doctor initially was talking about how fantastic their epilepsy center is. I would expect it to be one of the best in the country, naturally. Then we realized since I'm currently on Medicaid I can't go out of state, and would have to go down to Indianapolis. He said they're very good, but clearly is not as impressed compared to Chicago. I dislike this; I want the best if this were to actually happen. Is this brain surgery even covered by insurance though?? And really I'm trying to leave this state ASAP anyways, so I don't think I'd get surgery in Indy either way. Portland, OR? Any experiences there? That's where I plan to move. I'm originally from CA and have family there, so I'm also more comfortable with treatment in Los Angeles which typically has the best specialists for everything in the world. Queen's on Oahu is a great hospital, and Hawaii could be an option, but I'm pretty sure I'd never choose to get any surgery in Hawaii. This is all VERY theoretical at this point though, and becoming abstract to some extent... I'm just feeling really overwhelmed right now.
One last bit of maybe relevant info.... I have been drinking way too much for way too long. After this bad seizure on 1/1, I realized I have to take this much more seriously and cut way back rather than being in pseudo-denial. Sometimes it's hard to accept my own reality and setbacks, even after 8+ years. So I'm hoping that drinking responsibly combined with this higher dose of Keppra will just keep me safe on its own and I don't even have to choose between having seizures the rest of my life vs brain surgery. Fingers crossed, knock on wood. I also drive, which I know is totally not okay....... but I'm a bartender so how tf am I supposed to get to work and back at night in a frozen suburb with no decent public transit?
Whew, thank you so much if you decided to read and/or respond to any of this!!! I'm not sure what to expect. It's very difficult for me to talk about, so I mostly keep it on the DL. <3
(P.S. I've been reading this sub for a while, but created a new account to make anything epilepsy-related private from the rest of my reddit life. Hope that's cool.)

So back in 2015 I was diagnosed with generalized epilepsy without status epilepticus and I fought the diagnosis for years because every medication I tried gave me terrible adverse reactions.
Keppra? Caused major anxiety attacks and mood swings so bad I'd wake up in the middle of the night and go into a blind panic
Lamictal? Physically allergic to it
Dilantin? Went toxic in my blood after 5 days and caused some permanent damage in my facial muscles, lost my ability to smile.
Topamax almost caused liver failure and with that I gave up on everything except klonopin in 2018. I started to notice some issues while at my new design job so I had a regular eeg done and an MRI done both came up normal, but my new neurologist decided to go deeper.
So after a 48 hour eeg, they finally saw it. 23 spikes in 2 days with 4 major spikes that happened both while awake and asleep. I was devastated but I had to accept the diagnosis after seeing the results. So I put in for ADA accommodations so that my work would understand if I need to leave for tests or have an issue with medication and I'm glad I did.
The doctor decided to try Briviact once a day before bed because when I was taking klonopin with Keppra the combination was OK enough to deal with the anxiety. The first morning I woke up after taking Briviact I found myself in a state of mania. I was wandering around the room full of misplaced energy, I called my boss to call off and sounded like a mad man over the phone. I took my klonopin not long after I got up and crashed hard 3 hours later.
After a few days it seemed like I was mellowing out but in fact I was getting worse. One week in I was at work and got extremely frustrated over something trivial, I smashed my mouse and got up walked the room with my heart racing, I pulled out my knife and wanted to cut my hand but I stopped myself, I stopped the impulse. My boss witnessed it all and told me to take the rest of the week off. No one has called to check up on me since.
I called the doctor and he told me to stop Briviact immediately and by doing so the aggression and mood issues have gone away but I've felt sick all week and if I'm not fired, will be working from home until after the doctor puts me through a new MRI and a week's stay at the hospital. I feel embarrassed and scared, I just want to find something that works for me without killing me.

I was diagnosed with epilepsy about 6.5 years ago. I was originally put on Dilantin which didn’t stop the seizures; (grand mal) they were still happening, roughly, every three months and just caused extreme weight loss. After a week long stay in the EEG monitoring unit I was put on lamotrigine and clobazam. These medications worked. They worked great. I still felt like myself, I was optimistic, outgoing, wanted to go out and do things. Then after about 4 years I started to have, what me and my epileptologist believe are focal seizures. Mild but still happening. We upped my doses of medications and that worked for a little while. But these focal seizures kept happening. I slowly got more frustrated and defeated because it just kept creeping back in and screwing up my “normal life”. I have become a very introverted, anxious, forgetful, tired version of myself. Then after 5 years on the meds I had a grand mal. This was incredibly defeating and I was willing to do anything to stop it from happening again. Once the lamotrigine and clobazam stopped working as well as they had been we introduced new medications. I can’t even remember which ones. I believe they were more to treat the anxiety but also may have been helpful with seizure activity. Those weren’t successful. I just started taking keppra about 3 weeks ago and I have noticed some very annoying side effects. Nothing too severe yet. I’m only taking 500mg a day for now. I’m feeling uncoordinated, a little off balance at times, my short term memory is completely shot and I’m exhausted all the time.
Anyways, if the keppra works to keep my seizures at bay, I don’t know if I am willing to deal with the side effects long term. I know there’s a chance they subside or at least become less annoying the longer I’ve been on it. But I was doing some thinking and kind of trying to make a timeline.
I noticed that the focal seizures kind of lined up with when I started to take my my birth control. I’m taking norethindrone which has no estrogen in it because it’s what was recommended. I was, more or less, wondering if maybe the keppra isn’t right for me if, instead of trying another new medication, I could suggest going back down to just the lamotrigine and clobazam without the birth control pills and see if that makes a difference?
I know professional medical advice may not be a strong suit for a lot of people on this subreddit but I know a lot of you are dealing with similar problems.
I don’t really know what I was getting at with this post but I needed to get some of it out. I suppose I was looking for advice. I’m curious if a medication that was working for years could start working again with the right dose and without medications that may interact. I have a PET scan coming up and I’m booked to go back for another EEG. I’m hopeful for more answers but also prepared to not get any.

I'm going to admit right up front that when compared with the range of experiences presented here and elsewhere, my experience with seizures is like a walk in the park. I know that I'm lucky. But I also feel utterly alone. I have told my story to a lot of healthcare professionals in the past couple of weeks, but they see me as a "case".
I am a public school teacher on summer break. A couple of weeks ago my wife went off on some errands during the middle of the day and the last thing I can remember is standing by my desk trying to decide what to do with myself.
Hours later I was struggling to rouse myself from a "nap" on the sofa. I had odd dreams tumbling in my brain: a broken egg by the back door, and something to do with the woods behind the house. When I finally got to my feet I realized I was overwhelmingly tired, sore, confused, and missing my glasses. I staggered down to the back door and found a broken egg on the mat (why???). I cleaned up the mess and then my wife came home.
Some background: almost 40 years earlier, while in college, I experienced a couple of “grand mal” seizures. I had an EEG that was only slightly off, and CT scans that were entirely normal. Some years later an MRI uncovered a pituitary adenoma which was removed surgically, but no one could say if it had anything to do with the seizures. I took Dilantin and many years later switched to Tegretol. EEGs continued to be slightly off, but I never had another seizure. I drove, but I gave up my dream of flying airplanes.
Some 20 years ago I moved and found a new neurologist who thought I should quit the meds. I quit driving for six months and weaned off the Tegretol. Everything has been fine since then, but I've kept my awareness that consciousness is never guaranteed.
But back to the Here and Now: as my wife walked in the house, all I could say was, “Something weird happened. I think I had a seizure.” All the muscles in my body, and particularly my jaw, were exhausted, sore and weak. I had cracked a rib. My glasses were missing. The sense of confusion and exhaustion were utterly familiar from the seizures I had 40 years ago. My wife observed that my clothes were dirty, then she said, “let’s go to the ER."
I was in the ER for about 12 hours. EKG, CT scans and x-rays ruled out truly scary things like strokes and cardiac events (pushing 60 here and there are lots of ways a person my age can just drop dead). Blood tests were normal across the board, except for an elevated CK level (no surprise). An EEG was also normal, although they didn’t have me hyperventilate because of COVID concerns.
I was discharged and told to make an appointment to see the neurology resident, which I have set up for about three weeks from now. They put me on a starting dose of Keppra, and told me not to drive. I’m feeling a little adrift at the moment and most of the things on my summer “to do” list involve physical exertion (like stacking 4 cords of firewood), which a cracked rib turns into pure torture.
The Keppra isn’t too upsetting, but I think it makes me fuzzy. I've read about Keppra rage, but the only thing that makes me a little mad is when my wife asks me what I’m making for dinner and all I can think is, “I’m not hungry.” I used to love to cook but now I'm never hungry. I’m having some trouble remembering what happens every day and although it’s almost two weeks since the event, I still feel like it happened a couple of days ago. My thinking feels fuzzy and I’m worried about going back to teaching precalculus in a few weeks.
One of the things that constantly bothers me is the loss of my memory around the event (that *didn't* happen forty years ago). I never did find my glasses and if I did wander into the woods for some reason I can’t help wondering what I was doing there. I don’t generally wander into the woods for no reason, but it looks like I did that day and then something provoked a seizure. If it weren’t for my experience with seizures I might have come to the conclusion that I was abducted by aliens! It’s the weirdest damned thing.
What do you do to help piece together your missing hours?
Anyhoo.. I don't expect to find the answers here. I just thought it would be fun to share the story and see if it resonates with anyone. Thanks for reading :)

Hey,
My father aged 51 have had epilepsy since he was in the 9th grade. The nature of epilepsy is such that he ALWAYA gets them in the morning and no body have actually seen the symptoms of when the episode actuallu starts. So we are not sure what kind of epilepsy that is. He get a seizures once after every 2-3 months. He was previously taking dilantin to control it and was seizure free for the past 8 to 10 years untill last year. He had slowly stopped taking his medication, dilantin, after slowly reducing the dose.
He got covid and a certain antibiotic triggered his epilepsy again and he got the seizures twice within a span of 4 hours which had never happened before. We live in a third world country so dilantin is pretty hard to get here. After his epilepsy comeback, doctor gave him Levetiracetam 1000 mg per day. It was workinh fine for the past 5 months untill last week he got a sezure again. He is soon getting an EEG test done and also an appointment with his neurologist is also due. The problem is that my dad is under extreme stress now. He was happy after being seizure free for so many years and it has started happening again. He sleeps for about 4-5 hours and sometimes get 1,2 hours of extra sleep above that. He believes its the new med thats being a problem now.
I want to ask the community hear, what kind of tests etc can help us diagnose it better and also if someone has gone through the same? Can he be seizure free again?