So happily I’ve been seizure free for 5 years but with all the medication I take I get horrible side effects. So that got me thinking what if I finally get off my meds completely. And I was just wondering what type of things can you expect when going off your meds you’ve been taking for the last 5 years?
I've been in the EMU since 8 am on 4/18 and it is 10:45 pm on the 19th. I'm having to stay awake for the night and I'm so tired and I have 70 electrodes glued to my head. When Big Bang Theory goes off in a few minutes I will watch Bourne Ultimatum again then Knives Out. Currently a man on the floor has been yelling for about an hour solid. He yells the same phrase for about five minutes then changes to something else. Now it's "Get up" and it just changed to "Down." Before that it was "Lisa" and "Get out of the there." My life isn't easy but it could be worse and it is most definitely not boring at this time.
Tomorrow I'll will have my VNS turned off and start having seizures pretty soon for my SPECT study. A nurse will stay in the room ready to inject me with a radioactive tracer and I'll get wheeled down to a scanner that detects gamma radiation and it will find the parts of my brain that are most active during a seizure.
If you have any questions I've got all night. BTW the guy stopped yelling and started barking and grunting.
I failed my 5 hour neuropsychological test sooo bad. My cognitive function is *not good*. I got medicated for ADHD, like my epileptologist said, and it’s been helpful in a lot of ways. I can mostly function at work now, but my memory is still so bad. Like so bad that I apparently can’t really form new memories. I remember big stuff, but I don’t remember what I was talking about 5 minutes ago or the TV show we’ve been binge watching for several days. Husband is like should we put the show on? I say yes but in my head I’m like *what show*. When he puts it on though, I remember the show and what it’s about and who everyone is.
Anyway, the neuro recommended some cognitive whatever therapy and brain exercising games. I’ve been playing a lot of online chess lately, but are there any games or puzzles that are specifically made to regain cognitive function and form new memories?
Neuro says it’s *not* the meds. Which is bullshit, right? Obviously seizures and being at my lifetime concussion limit are part of it, but psh the meds make all of us have goldfish brains, right? Right????
Unrelated bonus bullshit ~lady~ seizure-havers get to deal with: my male neuro said he’d like to switch me to another med because of the brain fog stuff, but I’m too young. I am 36 years old. I was like what why? And he said *because you can get pregnant*. We’re a one and done family, I would die of another pregnancy anyway, I have a 10 year non-hormonal IUD that will be getting replaced until I’m like 60, husband is getting snipped, and if I still somehow got pregnant, I would be out of state same day to get that taken care of. *I will not be having a baby under any circumstances, including if I get pregnant.* Told him that and he was like lol still no.
**TL;DR the title really says it all lol I said too many words here**
Since 2014 my epilepsy and dpdr has turned me from fit to fat. There’s an incredibly massive difference in the way people treat you once you turn drastically fatter than what your past life(before this illness)used to be. Genuinely fuck this shit, sometimes I look at myself in the mirror and want to break it.
I’m 35. I’ve had the same group of friends for 16 years. Ever since I was diagnosed with epilepsy and lost my ability to drive and I went on disability from work, I feel like my friends have distanced themselves from me. I’m a burden because I have to be picked up. It makes me really sad because of how long I’ve been friends with them, and I don’t know how to make new friends since it’s hard for me to get out and do things :(
Hi! I was diagnosed with epilepsy in spring 2024 as a 26F, no family history of epilepsy. After being put on the correct medications that worked for me (keppra 1500mg/lamotrigine 100mg daily) since fall 2024; I’ve been seizure free until yesterday. I had a breakdown seizure in my sleep but was a very different seizure than my previous 5.
I was recently put on fluoxetine 40mg (got to 40mg slowly from 10mg to 20mg then 40mg) for anxiety and mirtazapine 7.5mg as a sleep aid. I had reached out to my neurologist office and they confirmed fluoxetine was safe for me. Since starting these medications about 2 months ago, I starter to have dejavu for the very first time since my last seizure in fall 2024. I just thought i needed to give my body/neurons time to adapt to new medication and I was going to be fine as long as I always took my epilepsy medications which I have NEVER missed a dose since fall 2024.
This seizure was a bit more controlled in the way that I was emotionally aware but couldn’t control my body. My partner was sleeping with me when it happened and was able to aid me very quickly. I was able to come back to consciousness 5-10mins after seizure. I didnt have a raging headache afterwards and didnt have to sleep it off which previous seizure had made me sleep for 7hrs+.
Im very sad that I no longer have a long seizure free streak since my partner & I want to try for a baby at the end of this summer. But also feeling very grateful that I have a good case of epilepsy. I drink moderate alcohol, im a daily stoner, I do edibles, I can enjoy clubs & concerts with no worries about lights, etc… but im bummed that I needed the anxiety medication and sleep aid at this moment of my life and it might be the reason for my breakthrough seizure. Im going to stop the sleep aid for now since my anxiety is controlled and Im sleeping better, but I hope I can stay on fluoxetine since it has helped my anxiety.
Any experience with this anxiety medication or sleep aid?
Hi, I am planning a baby. I am pretty well controlled but I am still very scared that I might have a grand mal while holding my baby and the thought that worries me so much is that I might have a seizure and wake and not recognize my child. I am afraid how would I react. In my post seizure state I do not recognize people for a few minutes and act on autopilot. I am compliant and calm but still very confused. I am so scared not to hurt my baby if I hear him/her crying or just see it in the crib and maybe I would want to pick it up.
Any stories are much appreciated. :)
I wanted to ask this question because of my experience. My son started having absence seizures in 2024. Ended up in the hospital where an EEG confirmed that it was likely epilepsy. We got a pediatric neurologist immediately and he ordered a 24 hour one that confirmed it. We started on Keppra and the seizures kept coming. We accelerated his dosage until he was at 5000mg a day, 2500 in the morning and 2500 at night. This seemed to stop them and we went over a year seizure free.
Until March this year, when I came to get him up for school and found him dead in his bed. No trauma, no other outward signs of what had happened. ER Doc and ME both concluded SUDEP in the absence of any other evidence, just one massive seizure in his sleep and he was gone.
In talking to his doctor after, he said it was a clinical choice made by each doctor to discuss SUDEP which is possible in anyone with Epilepsy according to him. How ever because my son did not check any of the risk factor boxes, he never told us about it. Was that your experience as well, or was it discussed even though it's a remote possibility? Thank you.
hi all. it’s been a week since this happened as i’m still trying to process it all. i had a seizure at work. in front of all my coworkers. i woke up on a stretcher with questions like “what year is it?? and who’s the president??” the whole nine, you know the drill. i’m just so embarrassed about this. this has only been my second seizure that’s happened while i was awake. prior to this year ive only had nocturnal seizures, i had a breakthrough seizure in January after 5 years of not having seizures. now i’m having them when im awake and i have never been more scared
Basically I went to a new neurologist and he was more focused toward the surgery aspect. He put me through a 1 week trial where I went off all medicine, cold turkey, in a hospital, while having a bunch of pads attached to my head, to track for seizure activity. I ended up never seizing the entire time, and I have been seizure free for two years. Now I am going back to my old neurologist, as he deemed me not needing of surgery at all. How long do you have to be seizure free for your neuro to slowly reduce your meds, to an eventual being off of all meds?
I have heard a few people mention this when their EEGs come out normal despite actively seizing during the test.
Has this happened to you?
I feel a bit crazy because my last EMU was 6 months ago and of course the test was normal. I was told I don’t have epilepsy by my epileptologist, but I am consistently getting worse. I’m concerned about how this is affecting my brain. My memory is awful. I had resigned myself to just live with this, but in light of the fact that it is getting worse, I think I might need to push for more testing or whatever.
BLUF: I'm curious as to folks' experience with pediatric epilepsy centers and the varying level of care you might find across Level IV centers.
Context: My 5 yo child had three seizures and epileptic activity on an EEG, most likely focal to tonic-clonic and originating from left temporal region, but the EEG was complex and also showed other type of epileptic activity (per our neurologist, if there hadn't been the classic focal/TC seizures and left temporal activity, a "slam dunk" example of how Childhood Absence Epilepsy presents on EEGs). I'm overseas, but I will travel to a U.S.-based level IV epilepsy center to get a more precise diagnosis. Miami (Nicklaus) or DC area (maybe Children's National or Johns Hopkins) are the most likely destinations due to personal connections, but I could try to travel somewhere else.
Questions: Do those with more experience have any advice as to how much the center matters once you're at a level IV? I noticed some places have a 7T MRI -- does that make a difference? Any other considerations? Any places or doctors who specialize in left temporal lobe focal seizures?
Thanks so much -- I've already learned so much just reading posts in this community over the last few weeks.
Basically I was diagnosed with epilepsy a couple years ago but the doctors couldn’t figure out what triggers them so they just put me on kepra and sent me off. Today I was doing a timed assignment at home and I got a little jolt. This is common for me when I forget to take my meds or I’m about to have an episode soon. I noticed it but I thought I need to finish this assignment I only had a couple hours left. Turns out I had a seizure about 10 mins later, I fell off my chair, smashed my head against a wall and started bleeding everywhere. My mother had to administer lorazepam after 5 mins of continuous convulsing. At this point I still had no continuous I was moving on auto pilot but very disoriented. I was told that I stood up tried to turn off my computer, failed, then told her to get out of my room cause I was working. I was later brought o the hospital and got blood work and everything done. Lesson learned DONT SKIP YOUR MEDS
After my first seizure, they operated on my shoulder. Everyone keeps thinking my recovery was painful - but it wasn't. I probably only felt like 10% of the pain. I can't use opioids, so recovery was just heat and ice packs. I barely felt the pain during recovery. Now, I don't notice physical pain right away. It's like a switch was flipped with that first seizure.
Can you relate to something like that? Like a switch was just flipped for you?
he would constantly insinuate i was lying about auras to get out of school, make me feel like shit for something entirely out of my control that i've been dealing with since i was EIGHT.
i try to talk to my mom about it, she says she can't control my father. he tells me he wishes he had a healthy kid and that he's just being "hopeful". well i'm so fucking sorry to break the news to you that i'm not healthy. i don't know what he wants from me. i can't snap my fingers and be normal.
he only cares when i'm on the floor unconscious violently jerking. even then, after a while he stops caring. he told me that he thinks my NEUROLOGIST is "taking the easy way out" by diagnosing me with epilepsy after TEN YEARS of seizures. i'm so fucking annoyed.
Hello! I just want to clarify that I haven’t gotten diagnosed yet, so it’s very possible I’m not having seizures. However, the reason why I’m posting this here is because my symptoms align almost perfectly. So please, I’m aware that I’m not diagnosed, and I’m in no way diagnosing myself! I’m just a person on the internet who needs help. A few months ago, I started randomly collapsing on the ground and being unable to move a single part of my body. All I could do was move my eyes and my tongue. Then, once I was able to get up again, I walked around like nothing’s ever happened. I was never worried during those episodes, in fact, I was quite calm. This is because the same thing has happened to me before. It started in 2024 for a few months, went away, then returned in mid-2025. So, I just assumed the same thing will happen and waited until it went away again. I initially thought they were drop-attacks, but the episodes started to escalate. At first, I was unable to move my entire body except my eyes. But then, as time went on, more and more symptoms started to appear. I started twitching, drooling, my mouth opening involuntarily, moving my jaw to the left, my eyes rolling up, blinking uncontrollably, choking on saliva, biting tip of tongue/side of mouth, walking but being unable to stop, legs paralyzing after episodes, extreme confusion, horrible migraines, certain parts of my head feels like it’s bleeding but no external wounds found, and having double-vision (seeing two of the same thing). Sometimes I would even lose consciousness, but it only happened once. I’m usually fully aware during these episodes. All these symptoms could be caused by epilepsy, but it could also could be another condition. Also, I have mysteriously started getting extremely sensitive to flashing lights. For example, I was once talking to my siblings with the lights closed in our shared bedroom (we were about to go to bed but I had to tell them something), and when my little sister opened the lights, I collapsed right then and there. And it’s not just that, I was doomscrolling until I came across a video with flashing lights, I also collapsed on the spot. I do have to admit that it might also be photosensitivity and not epilepsy, but i‘m still very worried. Since this is obviously very concerning, I spoke to my parents about it. I kid you not, they brushed it off and said I was fine. I told them every possible symptom that I’ve been experiencing and they said it was “normal”. It took them weeks until they finally gave in and sent me to the hospital. The doctor was very also very concerned, so he did the standard procedure of giving me a blood test. He told my parents that this is not normal or something they should ignore, but obviously they didn’t listen. A few weeks later, my blood tests came back. It in fact was completely, utterly, undeniably normal. I started questioning if what I was experiencing was even real. My parents said it would go away on its own, so I decided to put that to the test. March 9th was when I got my results back. And because my parents said it would go away on its own, then surely it would go away after a month, right? April 9th. April 9th is the day I’ll ask them for another appointment. An entire month. There was no sign of it ever stopping. In fact, it got worse. I had, and still do 12 or more episodes daily (I counted lol). Every day, episode after episode, I would keep telling myself that i’ll prove my parents wrong. However, things didn’t go so smoothly. My mother told me that I was just like every other girl. She told me that I was fake collapsing for attention, that I need to control myself when my head jerks(usually happens before an episode), especially in public because she’s “embarrassed” to be near me when that happens. She told me that if I don’t control myself at school, everyone’s going to start fake rumors about me and everyone's going to make fun of me behind my back. She told me that one day, when she kicks the bucket, everyone is going to be so relieved that they don’t have to take care of her anymore. And if I don’t stop “fake collapsing” now, the same thing will happen to me. Essentially saying that nobody will care about her own daughter after she’s gone. This is only a fragment of the things she told me. I was supposed to tell her yesterday. I was supposed to tell her that she was wrong and it didn’t ago away. But I couldn’t do it. I was too scared. I need your help, please. I can’t keep suffering anymore. If you have any questions, feel free to ask and I’ll try my best to answer. Thank you
Wondering what people's experience with Clobazam besides the first 2 week adjustment period I read about.
Currently in the hospital trying to induce a seizure for the last few days which of course is the only place it doesnt happen lol
All my seizures are excerised induced, but even with now completely off keppra leaving me only with my lamictal still nothing. So they are reducing lamictal temporarily for tomorrow. They've had me doing the stationary bike for 30mins at 130 to 140 rpm.
That leaves me with my question about Clobazam, any extreme difficulties with grogginess and being slow ect ? Ill be on 20mg evening.
Old:
400mg lamictal x 2 (AM / PM)
1500mg keppra AM
2000MG keppra PM
To be new:
400mg lamictal x 2 (AM / PM)
20mg Clobazam PM
Thanks in advanced !
I had my first seizure after 3 years last week. I was in the shower and had a pretty nasty fall according to my bruises. The back of my left thigh is essentially one ginormous purple blob (don’t know how to upload a photo or I would).
Any advice on healing a bruise that large?
I have moments when i wish i ve never been born at all, existing is not living. I m sick of everything, my mental health is tired, i m tired of this life. I m afraid, every single day is a battle for me. Epilepsy destroyed everything in my life, dreams, hopes, happiness, peace. I wanna hear your story if you re dealing with this disease. Wish you health and a life full of joy.🤍🥺
My 6-month-old had three episodes on Friday where she'd be eating her puree, then completely zone out. She'd turn her head to the side and wouldn't respond to her name. Then, she'd snap out of it and be totally normal again. That freaked me out, so I took her to the hospital. We stayed overnight, and they told us to try and film an episode and also to try a firm touch to her shoulder to see if she'd react. When it happened again, she didn't react to my touch, and I couldn't get my phone out in time to film it. So, we were sent home for three days to try and catch one on camera. This morning, it happened again, just as I was already on my phone about to take a picture, so I managed to film it! These zoning-out episodes are happening multiple times a day. She's also suddenly been having eye issues in the last week, going cross-eyed multiple times a day. I don't know if the two things are related, but they both started suddenly, and I can't help but think something's going on. I'm really worried we might get brushed off at our follow-up appointment tomorrow, and I don't want something to be missed if it's an absence seizure. Is there anything else I can do?