Given a choice, which way would you go? LITT is less invasive with easier recovery, but Resection has greater success rate. Has anyone had one of these (or both) and was it worth the risks?

I (29F) transitioned from Keppra to Lamictal (200mg per day) quite recently. I got diagnosed with TLE less than two years ago. Unfortunately, Keppra wasn’t a match because it was not successful at controlling my seizures and it made me go completely nuts. I had become a very moody, aggressive and conflictual person.

That being said, my neurologist made me switch to Lamictal. My seizures are now completely controlled and my mood has improved dramatically. A bit too much. I feel very happy most of the time and definitely way more calm compared to how I was before all these treatments. However, I now realise that Lamictal has completely taken away my ability to get angry.

I got married about 2 months ago to my partner and today I went through his phone and I found out that he cheated on me on Friday with a “professional” and without protection. Somehow, I had absolutely no reaction. I know I should get angry but I’m just not. I found this out about 3 hours ago and I’m working as if nothing happened whilst he’s playing video games in the next room. I’m just all peaceful and calm, I couldn’t start an argument with him even if I tried to…

Not sure if Lamictal is a blessing or a curse.

So I just had my first tonic-clonic seizure at work (a casino, so think loud noises, flashing lights, and sometimes a high stress environment.) I spent 3 days on the hospital and after half a dozen tests I was finally diagnosed with mesial temporal sclerosis.

Around 8 years ago I began taking antidepressants for a new onset major depression and generalized anxiety. Around the same time I started experiencing what I thought were bouts of disassociation, which are fairly common with antidepressants. This also coincided with my 3rd and most sever concussion out of 5 in a 7 year span from high school and college sports.

Turns out my disassociation were actually temporal lobe focal seizures that manifested as visual disturbances, momentary loss of memory, depersonalization, a false feeling of movement or "swaying" and just a general "off" feeling. I guess if I had a question to ask, how did anyone else hearing a similar diagnosis feel about it. On one hand I'm relieved to know I wasn't just going crazy, but ever since I've been more anxious that every time I feel off, or zone out and feel that I'm swaying that I'm having a focal seizure. Sorry for the long winded rant, this is all just kind of new to me

I had a eeg march last year, told I'd have an seeg early this year. Emailed the nurse to find out rough dates, and told it won't happen till next year... now im getting a second opinion in interstate through my brothers wife's family.

More deflating than my last seizure. Could be 2 years between. I held off working because the timeline I thought i had. Last few year feel wasted already. Has anyone else gone for a second opinion? And how does did your original neurologist take it?

Sorry, long post ahead. English is not my first language so maybe there'll be spelling mistakes.

I was diagnosed with epilepsy 5 years ago, I started having seizures (no reasons found in my brain) so doctors put me on Lamictal. At first, it was "pretty chill", as I had a seizure once per year (and everytime I had one, they leveled up my dose). But at the end of 2024, when I went freelance, I had three (in October, November and December). Last one I did was after a big panic attack. It came as a big shock to me and now I'm really stressed out about having seizures again. My doc leveled up my dose again, I'm on 300g now.

I have to add I have an anxiety disorder and I don't sleep well. I've been in therapy for years (I'm 28 now) and I quit drinking 4 years ago. For a couple of years, my anxiety was in control, but the panic attacks and bad sleep really did come back in 2023.

So I started seeing a psychiatrist. We tried a lot of "soft" meds to improve my insomnia but it didn't work so I took Valium for a month and it really helped, but as we're aware of the risk of addiction, the psychiatrist told me to only take one when it was really necessary.

He also put me on Sertraline two weeks ago, I don't notice any change for now but I know it's supposed to really "kick in" after three weeks. I started meditating and I do yoga occasionally but sometimes, it's not enough to stop the crippling fear of having seizures.

So I want to know how you're coping, guys. I read several posts about it already but I felt like sharing. Wishing u the very best !

Hey yall!! Curious! What surgery type did you have if you only have 2-3 episodes a month? Sometimes more when anxious or stressed..? 🤔

So Ive been on Lamictal for years [300mg 2xs a day] works great. Only downside is my breakthroughs are absence partial so my neurologist wanted to try to add a second one on. We tried Zonisamide. First 100 mg at night only then I upped it to 200 mg at night. It started giving me bad side effects of both dehydration AND migraines. No matter how much water I drank I was still dehydrated and I couldnt seem to get rid of the constant migraines. [One of which lasted ALL DAY] Saw him again and he switched me to Oxcarbazepine 150mg 2xs a day. Next two nights I weaned myself off the Zonisamide and then started the new one. Its been 2 weeks. Im happy to be migraine free HOWEVER this one seems to be dulling my seizures instead of stopping them. I'm now having frequent nocturnal seizures. Its almost as if this medication didnt unplug the issue but instead changed the channel. You might be wondering 'If theyre happening while Im asleep how do I know this?' Well if you know the feeling you get after a seizure, that's me waking up three different days thus far; severe brain fog, extreme exhaustion, feeling like I bit my tongue and the sensation of having trying to consume aluminum foil. It's unmistakable and extremely inconvenient.

I'm calling my neuro this morning to get a sooner appointment. Wondering if the next step is trying a 3rd medication or a vagus nerve stimulator.

This is an automated weekly post.

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Let the community know how you are doing. Any fears and if you need resources.

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[Seizure Diary] (https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary)

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[Epilepsy and Wellbeing] (https://www.epilepsy.org.uk/info/wellbeing)

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[Epilepsy Foundation] (https://www.epilepsy.com/)

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[Epilepsy Action] (https://www.epilepsy.org.uk/)

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[Crisis Support] (https://www.reddit.com/r/Anxiety/wiki/ineedhelp?utm_source=reddit&utm_medium=usertext&utm_name=Epilepsy&utm_content=t5_2s1h9)

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[First Aid for Seizures] (https://www.epilepsy.com/living-epilepsy/seizure-first-aid-and-safety/first-aid-seizures-stay-safe-side)

Hi, I’m curious if there are women here who also find it risky to get pregnant on epilepsy medication and have done/are considering surrogate motherhood (another woman carrying your and your partner’s baby). Anyone who wants to share pros and cons? Experiences? Thanks 🥰

I recently in the last week or so have noticed that throughout the day i have these really bad bursts of like..my hands shaking.

It’s not a shaking, per se. Though i guess it is.

But like sometimes when i type on my phone I can’t grip the phone right. Or when i’m using my laptop it like curls into itself a little bit. And i can’t really type as smoothly. And then it just flat out shakes like i’m cold

It’s really weird. I know it’s something i’ll bring up to my neuro but i just wanted to know if anyone’s experienced that, or can describe it better than me lol.

Oh i’m taking 200mg Lamictal 2x a day.

Hello! I’ve been taking a cocktail of lamotrigine and zonisamide for almost 20 years. I had my first seizure when I was 16. For the entire time, I’ve been seizure free. Unfortunately, I’ve become paranoid recently about having a breakthrough seizure.

I was searching through the forums and saw that some people were building a tolerance to lamotrigine. I’ve never had my dose adjusted (150mg twice a day.) Is tolerance a really big problem with this drug and AEDs in general? Should I expect that the efficacy will wear off? Thank you.

I Still Have So Much Ahead In This Journey But The Good News Is I’m Happy Doing Better And Getting Back To Normal

I don’t know how to face this. My cat and protector, Amicus, will be crossing that bridge tomorrow. It’s crushing because he was never not next to me back when I was having four TCs a day. I thought I was going to die. I’d wake and he would be there, right beside me. Sometimes I’d wake and he’d be there on my chest. Now I’m here next to him in his final moments, the end of his history, and I have no idea how to face this. I hate that so many of us have felt this pain. I think that people suffering from the illness we all do develop a special kind of appreciation, love, and empathy for the people that love us through it all. It breaks me that he’ll be remembered longer than he’s lived. I’m sorry if I seem like I’m farming for sympathy but I don’t have anyone to talk to about this. I figured y’all would understand.

Rest in peace my protector, my shield against the night, my sweet, sweet baby boy. I’ll see you there.

My 16 mo son has seizures and hearing loss as a result of meningitis back in August. He had been Seizure free for a few months then started having episodes in December that kept increasing in intensity and frequency. We've been working with a neurologist and tweaking meds (Keppra, Trileptal, and now Onfi). They helped somewhat but have not stopped episodes completely. This morning he woke up and basically couldn't walk, stand, or even crawl so we brought him to the Emergency Department. That improved throughout the day to the point I'd say he's back close to baseline, although his balance is still not great.

Now they're talking about epileptic spasms instead of seizures and what I'm reading is freaking me out. I thought maybe since it was spasm vs Seizure maybe it wasn't as bad but there's so much about delays and regressions in development.

Anyone else have any advice or questions to ask? We saw the neurologist briefly in the ED and are now admitted for an overnight EEG so we should be seeing them again in the morning. He is already in speech and OT from the meningitis, just not sure what specifically to do with this new information.

This morning I felt like I was seeing things like in high resolution, like more vivid and colorful, but I thought it was due to me having a minor panic attack and trying to take some valium (also because my friends told me I at one point put my eyes backwards, and moved them in a creepy way, usually do it on migraines but well). After I went home I sleep because I was with friends all night long, but after I woke up I became to feel really strange and became to feel dizzy, couldn’t walk and one point I couldn’t move, also like passed out, like closed my eyes and couldn’t move, every now and then regained consciousness, more or less(still had my eyes closed, couldn’t open them and it was for like seconds. It lasted more that an hour and even if it passed really much (4h) I still feel strange. Do I have to be worried?

Just wondering I'm planning a tour from Canada to family in Indiana but I'm in the process of getting passport etc. Am I even allowed to travel with epilepsy diagnosis?

I'n recently epileptic, age 40ish I've had four drop seizures, zero warning, no aura - nothing, just down I go - kablamo

Has epilepsy affected you when parenting? I'm thinking that I'd be afraid to hold baby (no children as of yet), if I drop... The baby drops... And not being able to carry a baby is a pretty huge problem when a parent.

Bath baby: concerning too, probably many other things I haven't thought of just yet ..

Is this something anyone else has had to deal with/has considered?

My best friend’s husband (he’s also my friend, they’re like family) Had a veeg and it showed an epileptogenic lesion on the left side and no seizures. They had him take seizure medication during the veeg. His wife said he may need an mri but other mris didn’t show any lesion so maybe an mri with contrast will show it. He said he spaces out and doesn’t remember what he just said, but doesn’t have the seizures where he has uncontrolled jerking. Would this be considered silent seizures? Sorry if that’s the incorrect. They’re hoping to win his disability case with these results. What are the chances of winning with these type of seizures? Why wouldn’t a veeg for two weeks pick up seizure activity?

Why does a veeg show a lesion but mris don’t? It’s confusing to me and I’d like to understand it better. Do any of you experience this? I’d like to better understand so I can give them as much support as possible

Hello my friends, I’ll keep it simple.

Military is off the table. Law enforcement off the table. Truck driving is off the table. Local on the road driving is off the table. Air traffic control is off the table. Flying planes is off the table. Etc….

Everything I love but yet, I have a license and can drive. No seizures in a long time. We’re talking YEARS! I can’t do any job I love that will actually PAY me and but yet, it’s not enough to get disability while having a disability. Do the government want epilepsy people poor and to die? 🤣 I have to laugh because it’s so sad for us. I know it’s other jobs but they don’t even call back and if they do it’s low pay.

We should all get a disability check if our own country don’t want us to work for them lol

💜I am not responsible for misspelled words and grammar💜

Hello community! I am epileptic and take my meds for it (400mg Topamax, and a benzodiazepine for rescue/shakes usually depending on severity 5-10mg Valium). Today I’d like to advocate for a lesser discussed and extremely effective epilepsy treatment, marijuana. I do not like to feel super high. I don’t do drugs or drink. That being said, when I feel the shakes coming on, I take a few vape puffs of my favorite strain, White Widow, and I go lay down in a dark room and take some baby sips of water, if I can find my remote YouTube 432hz at 4 volume and I feel better almost immediately. The shakes wear off, the seizurous symptoms go away, and I even start to feel a little hungry and thirsty! ( I recommend keeping some light healthy snack like an applesauce and spoon and a non heavy water bottle easy to reach in the dark by your bed) if tv light triggers you, try playing it on your phone and covering it with blanket. If you’re interested in trying marijuana as an epilepsy treatment, my personal experience and preference has found White Widow works best due to it being a hybrid, it containing CBD and CBN, and it tasting mild and delicious and earthy with a light and lovely subtle high. I generally take 2-6 puffs then wait. This is usually quite sufficient. I recommend starting with 2 unless symptoms are very severe. One side effect listed on leafy is dizziness but it has never personally made me feel dizzy at at all. Below are some examples of strains I have personally tried that work well to stop seizures, sometimes I combine with a benzodiazepine but most always I do not. I do take my topamax every day. My Current Favorites:

1. Dime Berry White Genetics: blueberry white widow Type: Indica Taste: Berry pine mint Effects: euphoric talkative hungry source:dime industries
2. Dank Cereal Milk Type: Hybrid Flavors: sweet vanilla berry source:weedmaps

There are lots of suggestions online but always best to speak with someone with personal experience and or professional or try for yourself with meds on hand as everyone is different! But marijuana, topamax, benzodiazepines, and angels have saved me from daily seizures. And awesome medical treatment in general. Let me know if you have any questions! I’ll be praying for all of your good health! 🙏💚💜please feel free to reach out to me for some love and support or with any questions at any time! and if there’s anyone out there doing testing/clinical trials/anyone working in neurology/students, sign me up please lol I’d be happy to help! Same to any growers who need product testers or like shops you know anyone who has questions about how different strains have effected my system symptoms I’d be happy to be of service! Let’s cure epilepsy together! I know it can be done, let’s do this! Peace 🕊️

Anyone else feels dismissed and let down by the medical system? My daughter is 13 months old, diagnosed with epilepsy at 11 months old following clusters of grand mals 2 days apart. Prior to those events, I raised concerns with a neurologist, pediatrician and 2 General Doctors (paediatricians in Australia are hard to get into, months of wait lists and very expensive). Also had a few ER visits, all of this as early as 1 month old. She was having sudden uncontrollable head drops and staring events. She also had 4 other events where she was unresponsive, her eyes rolled back, mouth open and tongue out and went stiff, this started at 1 month old. Hard to get all of them on video because all the events excerpt the grand mals are short, maybe 5-10 seconds long. Everyone always said “don’t know” and refused to call them seizures or anything else neurological.

Now, after starting Keppra in December, we noticed she has been having jaw and back twitches/jerks, that we and she cannot stop. Sometimes she also has what it looks like shivers all over and they happen in a cluster as well. She has these when she’s tired or in hot weather, just like she used to with the other seizures/events. I raised concerns with her neurologist and even sought after a 2nd opinion because these are new. Is it part of her epilepsy or could it be a side effect or the medication? Again they both “don’t know”, and “it would be rare”.

They’re baffled because genetic test came back normal, EEG came back normal and MRI was pretty much normal, except a small patchy white matter in her parietal lobe but they don’t think is anything serious. They keep saying “don’t know” to everything, and that she’s a kid and sometimes kids do weird things and perhaps we’re worrying too much.

She had a hematoma at birth, and needed oxygen after birth, which I recently began thinking about, what if this could be one of the potential causes? Brought it up with both neurologists. Same answer “it would be rare since she’s growing and developing fine”. She’s growing well, hitting all milestones early on even to this day, which is why no one seems to understand what is going on. I’m grateful she’s well but I also feel dismissed, and using the she’s “developing well” for a reason to dismiss us doesn’t seem right to me. While some don’t, many people with epilepsy develop normally and their intelligence is not affected, some of the most famous historical inventors, musicians and writers had epilepsy, so I don’t understand that level of reasoning from anyone in the medical field?

Looking for any advice, or for anyone with a similar experience: brain MRI found 1.7cm arachnoid cyst posterior fossa area. I have been having neuro issues for the past 7 months; started out of no where. From what I read online, a cyst under 3 cm is considered small, and they usually do not grow or cause issues. Is it likely this is causing my symptoms? Even though it’s considered “small,” it is still something in my brain that shouldn’t be there and could be pressing on nerves. Thank you

Sorry in advance for the long post, just want to be detailed. I'm a 22 year old that since hitting my head on a fire hydrant about 2.5 years ago while skating (did not wear a helmet) have been experiencing episodes of weird symptoms. 

One such symptom is feeling extremely intense emotions. It's almost like I’m on Molly, I can't stop smiling and am happy beyond belief. However, sometimes it goes the other way and I can't stop crying, have intense dejaVu, and am terrified. 

Besides these mood related symptoms, I have severe cognitive decline. I stare off into space, I can’t make decisions, and I can’t remember certain memories. My imagination and ability to picture things in my head is also far more intense. I even talk at a different octave when having episodes. These episodes last extremely long, sometimes multiple hours. 

I took an MRI and the note from the neurologist was that "there is a 3 x 5 mm small area of cortex that is herniated into an arachnoid granulation in the posterior left temporal lobe. There is no surrounding signal abnormality”. I also took an EEG and they found no signs of epilepsy but it was before my episodes started to become far worse and now happen almost daily. The only thing that has helped me so far is taking 4 doses of CBD extract every day, but I still have these episodes happen often despite that. 

My most recent episode I started uncontrollably convulsing throughout my entire body (while still being conscious). This lasted for about 5-7 minutes before I fell asleep. I was extremely sore when I woke up from the intense movements. 

My neurologist said he doubts it is epilepsy because my “episodes are longer than a usual seizure” and that “convulsive movements throughout the body without losing consciousness is not consistent with epileptic seizure”. 

I have been reading about TLE and it seems to match up with my symptoms though pretty accurately especially since my fall affected my temporal lobe. What do you guys think? Feeling frustrated because these episodes are getting worse and have come across no answers.

Attention all members. For those in the US, you’ve heard a lot about the treasury and social security over the last few days. Some of you that see this post think this is political, I assure you it is not..

You have all paid into this system:

Social Security was enacted in 1935, under a democratic administration.

You have all had protections under the ADA.  The ADA was enacted under a republican administration in 1990.

Now I am asking you to reach out to your local, state, and federal representatives.

I know I’m asking a lot. But the price of democracy is high. It always has been. And it’s a price I’m willing to pay. And if I’m the only one, then so be it. But I’m willing to bet I’m not.

Below are several links to help.  Our group has 50k members, thats 50k voices.  

Let your voices be heard.

https://5calls.org/issue/elon-musk-opm-gsa-takeover/

Call your senators. Call your state’s attorney general. Demand they take action NOW! 

Here’s a link to your attorney general: 

www.usa.gov/state-attorn... 

Link to contact your senators:

https://www.senate.gov/senators/senators-contact.htm

What does everyone else do to help symptoms like body chills, running rose, coughing…. With epilepsy/medication I’ve read online that there’s really no cold medications that don’t put you at risk! I’ve been taking Advil liquid gel… but it’s not easing a lot.

Also side note: I’m on keppra and having acid reflux a lot, anyone else ?

When I (f25) was first diagnosed at 19 years old, yes it changed my world but not as bad as it seems to be now!?!? … I am seizing way more (weekly) as in back then I could go a month or two (probably more I can’t remember) … now I have horrible memory loss.. I forget things within minutes … but I can remember other things from forever ago.. it’s weird. Has anyone else’s experience with epilepsy been like this?

I have family members begging and pleading for me not to get the surgery/implant and it’s scaring me. I feel like I’m begging gaslit, because something that I was excited about has all of a sudden turned into a fear because of skeptic family members. Do you have one? Does it work? I’ve been non-responsive to meds for 16 years and I am ready for the change. Is there anything I really need to prepare for so I don’t have to deal with “I-told -you-so”s? I know about the voice, the buzz… now I’m just looking for that final reminder that this actually works for people, I guess. Thank you 💜

My seizures have become more frequent (was once/twice a year to almost monthly now) I had to sell my car about a year ago due to not having the money to continue fixing it as I had put more into it then what it was actually worth. And obviously now if I did have a car I couldn’t drive it.

Due to not having a car, and my seizures getting worse I had to move back home. Mentally I feel stuck and like a boulder is over my head 24/7. I do have quite a few friends, and have a decent job. My main issue is I can’t just go to the store, or drive to the town over for food I’m craving, go to my neurologist appointments alone or drive to a park for my dog to socialize more. I’m just a server now, but my dream job is to be a vet tech. I don’t have any vets close enough for me to walk to/from like my current job is.

I miss being able to just leave. Go somewhere without someone with me. Maybe it’s selfish or a non issue but I hate being stuck at home until someone makes plans with me. I hate asking others to do things as obviously they’d have to drive and I feel awful for it. Epilepsy has ripped my freedom away and I feel so isolated.

I've been seizure free for a year and I recently started working out and I feel weird after I work out, not auras but just off. What do I do? I want to work out but I'm so scared to trigger a seizure from just working out

Hello. I'm writing this because I'm a little nervous about asking for an updated MRI, and want to know if anyone's experienced something similar. I'm wondering if anyone has had a loss of self after multiple episodes.

My seizures were often three to five minutes long, and I'd have one after the other in a single day. I haven't had these in a while, but I don't feel whole anymore. I don't feel as intensely as I used to. I know I love those close to me, but I struggle to feel it. I'm not depressed. I know what depression feels like and this isn't it.

Along with not feeling like myself, I can't recall words. I can't follow simple directions. I can barely speak sometimes, I have to vaguely gesture or type what I need. Writing is easy some days, and other days it's barely legible. Is this brain damage? Something else entirely? If anyone has a similar experience or an article about this subject, It'd be greatly appreciated. Thank you.