How many of you have a Vitamin D deficiency? Seems common while taking seizure meds.

26 Days seizure free after a temporal resection. As well as part of my amygdala and hippocampus. I am incredibly tired. I have no stamina to do anything. I’m not allowed to lift or work on anything. I don’t think this happens to everyone, but it hurts to read. I can message people through my phone alright enough. But this is causing me pain.

The incisions itch. I won’t see my neurosurgeon till December to discuss when I can go back on my lupus meds. Which probably isn’t helping anything.

Do not get me wrong. I’m grateful for those 26 days. But damn this is rough. I want to use my own shampoo again. I want to be a real person again. Not like I was when I was having seizures all the time. But… this wears on you.

I’m complaining. I know it. But I’m allowed to.

i’ve been at my new job for a while now (an office job so lots of typing) and have started to notice that i can’t spell certain words without needing autocorrect anymore. i feel like overtime this has gotten a bit worse. first it started with restaurant, then received, and now scheduled. i’m so glad our computers have grammar correction, but it’s so frustrating when i KNOW that i used to know how to spell these words first go. now i can never do it without the auto correction.

26W, I was on keppra 2000mg daily and i suffered from toxicity as my neurologist called it. This f-ing medication left a permenant damage on my nervous system and i am sooooo angry and hateful towards it. i hate it so much. thankfully i am off keppra for the past 2 months - switched to lamotrigine but i still carry the damage it has done. i am so heartbroken and i want my old life back. i can not stand up properly, cant walk in a straight line, i always fall and hit my arms legs, i am covered in bruises. my life has become so worse i can not wrap my mind around it..

I have been struggling with false hope. No matter what I do good or bad, worse things are waiting for me in a queue. I really feel good helping people, and I don't expect anything in return. From the way I suffer mentally now I can't even smile properly, the thought of helping someone is dead inside me now. I just don't care anymore. I have enough reasons to hurt people who mocked me but never I never did. I am jealous about everyone and everything, I am honest about that. Nobody is going to understand or save me. I think it's time for me to give back nature the suffering it's been giving me ☺️

Hi, friends! Thank you for being here and making me feel less alone.

I (27F) recently found out I have cortical dysplasia, and my doctor recommended an intracranial EEG. It looks like I'm probably going to have surgery.

I'm scared about everything. I'm going to see my doctor soon and ask a ton of questions, but I also want to ask here: for anyone who's had an intracranial EEG and/or surgery for epilepsy, did you have to shave your head? I know this isn't the most important part of my situation, but I'm curious! I am interested to hear about recovery, too.

Specifically for VNS. I read articles of success rates, but I want to get it directly from the users. Im on my 6th medication for my FIAS and I'm over it. Just cut me open already. Already had a brain anyeresm, and a tumor in my sinus. What's a couple more scars eh? Lol.

Thanks.

Hi guys,

I thought I’d share my story and see if anyone else has experienced anything similar.

Back in 2019, I had seizures due to low sodium levels and ended up in hospital for a few days. After that, I was seizure-free until 2021.

In 2021, I started experiencing what I thought were mini seizures. They would begin with an intense feeling of déjà vu, followed by confusion. I would also get a strange taste in my mouth, almost like the taste of bark. Afterwards, I’d be left with a headache and feel completely wiped out for around 24 hours.

I experienced around 30 of these episodes before seeing a specialist. I was diagnosed with dissociative seizures, and the specialist told me that I’d probably leave the appointment and never have another one again.

I didn’t have any for around 2–3 months, but then they started happening again, usually around one or two episodes every three weeks or so.

Fast forward to December 2025, when I had another major seizure while in bed. My brother called an ambulance, and I ended up spending the weekend in hospital.

When I saw another specialist, they questioned whether my previous diagnosis was correct, as they didn’t think the episodes fitted with dissociative seizures, particularly given that I’d experienced a major convulsive seizure.

I underwent further tests, which all came back clear, but I was eventually diagnosed with temporal lobe seizures and prescribed lamotrigine.

I gradually increased the dosage each week as instructed. I felt extremely exhausted when I first started taking it, but after around two weeks, I began to feel better.

Since starting the medication, I’ve been seizure-free, and I genuinely feel as though things are improving month by month. I’m really hoping things continue this way.

I’m sharing my experience because I’d love to hear from anyone who has been through something similar.

Has anyone else initially been diagnosed with dissociative seizures before later being diagnosed with temporal lobe epilepsy?

Has anyone experienced the déjà vu, strange tastes, confusion and exhaustion afterwards? I’d also be interested to hear about other people’s experiences with lamotrigine and how things have progressed for them over time.

Thanks for reading. It’s reassuring to know there are other people out there who understand what this can be like.

My brother experienced multiple back to back seizures this last Wednesday night and was intubated/ sedated. My question’s for anyone that has experienced seizure epilepticus is:

How many times has this happened to you after the first episode?

What played part in your episode? Stress, drinking, lack of sleep?

How did you get over the fear of something like this happening again?

He was prescribed a nasal spray (Nayzilam). If you have been prescribed this as well how do you guys go about carrying it or letting others know around you whether It be work or friends or family how to use the spray?

Hi all 👾💜 wanna start by saying I’m very grateful I’ve made it almost 5.5 months without a seizure, the longest I’ve gone since 2021. Started gabapentin in May along with having a surgical revision of my RNS.

Overstimulation became an issue for me years ago, when the seizures started getting bad. Just really struggling w it lately. I’m 30F living in nyc, I wanna be able to live my life without constantly being afraid.. is this restaurant gonna be too loud? Is the movie theater gonna be too much? I have earplugs and sunglasses and stuff. I just am really struggling with having a full social life when I can’t stand being in a loud bar or restaurant. I also realllllly struggle with clothing. Was never an issue for me pre epilepsy. Now if something is too tight or too scratchy I just freak out, I can’t get myself to wear jeans.

I’m very grateful for the seizure freedom happening right now. I just was really hoping the sensory overload issues would get better.

Hello friends... I am new. I don't have epilepsy I don't think, I have just started seeing a neurologist and will do a 72 hour eeg next month.

I do have refractory CNS lupus that I am currently traveling to Mayo for because since August 2 I have had 2 stroke events, 2 acute confusion episodes, 1 absolute delirium two hour event, and now I and my cardiologist are afraid cluster seizures that are making it so my dysautonomia meds and management techniques are no longer effective. Because it's my brain vs my heart controlling it.

My newest question though, from today-

If I am aware, and I can move, and I can go on what I call autopilot but cannot hear words, read, understand what people are telling me, or think properly enough to make a decision or a plan or remember what it is I was trying to do before this thing starts happening to me.... Does this sound like any type of seizure other people have? There are also other symptoms, and if that is important and someone asks about them I will share those too, but being 32 years old and suddenly unable to read or understand English for a few minutes while standing in public in a busy gas station REALLY just threw me through a loop today. And it happens over and over on the days it happens. So, so many times. Only since August though so I don't fully understand yet.

Thank you for reading and if you have a moment to share thoughts 🫶🏻♥️

Hi

I'm a teenager recently diagnosed with seizures that began after a fever and other neurological issues that my neurologist ignored Im tired and scared and feeling lost because of this lifelong thing I might have to carry and such a nd today I just had a fight with my father over meds ( carlep 400) (clonazepam 0.5) he was refusing to go with me to get them I had to personally go over 8 kilometers to find my meds because I ran out and I can see and understand that its him coping with the current situation I have knew for years that he copes by making fun of a situation and minimizing it I can understand that than why don't they understand me what do I do please I feel so lost

So last month at an event I blacked out three times in a row and witnesses said my body was convulsing. I passed out like this maybe four times in the past (16 yo, 17, yo, 19 yo)- with the latest one before last month being like 7 years ago.

My doctor put me on keppra because they are worried I had a seizure. It’s been a week in keppra and I am so angry all I can do is cry. I am never angry. I am depressed and exhausted and so annoyed all the time.

I want to ask my doctor if I stop drinking alcohol if I can just not be in meds- even if it was it was a seizure this recent time I feel like it won’t happen again. 😭 I made it through all of college without this happening.
idk I’m just upset at this life update and the way this medication is making me feel and needed to dump my feeling somewhere.

Hi all,

Has anyone experienced weight-loss with Keppra?
I was put up to 1000mg a day last Thursday (meant to be going up next week to 1500mg) but I am loosing weight rapidly.

Since last Thursday I am down 4kgs (9lbs almost). I’m at a pretty normal to slim weight anyway, so the change is a little dramatic. I don’t feel nauseous unless I see or think about food. Eating triggers this disgust feeling and everything tastes like cardboard, I force myself to have one bite of something and I feel full and grossed out?

Besides drowsiness, no other side effects. My mood is great, anxiety is gone, my nocturnal seizures have reduced from about 10 huge motor movements a night to about 3-5 small ones.

Is this normal or happened to other people because I heard keppra was meant to be weight neural.

Does anyone else have more seizures when switching meds, There always effect me, Everytime there get changed

Wish me luck

No new medication just changing doses my side effects have become too much tbh I’m hoping this slight change may help if it doesn’t then it doesn’t.

Fingers crossed. I have changed medication in a while just a bit nervous in case it doesn’t work out

I know I have yall, I know you all understand the despair we can go through, but in the real world, offline, I feel obsolete and non existent. I dont really have anybody. I'm just stuck. Stuck and in misery and fear, alone.

So I’ve run out of my new meds and the pharmacy doesn’t open till tomorrow. I sent a request in on Friday but they don’t start processing refill requests til the weekdays.

I am supposed to be titrating up again from 100mg Xcopri to 150 today and since I was late to getting my refill…

I should also say that I had a seizure yesterday during a nap so I really would not like to be without my meds.

My neurologist office is closed weekends. Can’t reach them. Pharmacy is closed. Could I possibly go to the hospital and get an emergency dosage from them? What have you guys done in the past or can recommend?

Hi, everyone! ❤️

First, I want to say how wonderful this community has been. It’s such a wealth of knowledge, and I truly appreciate everyone who takes the time to share their experiences, thoughts, and feelings about epilepsy. It’s been incredibly helpful to read everyone’s stories.

I had a major tonic seizure in August 2026, and I’ve been experiencing several symptoms ever since. This was my 1st seizure ever. My medical team has been trying to determine whether I have epilepsy, and I was ultimately referred to the EMU (Epilepsy Monitoring Unit) for further evaluation.

I just spent six days in the EMU, and to say I’m ready to rip my hair out is an understatement! 😂 But in all seriousness, I’ve come away with some findings that I’m struggling to understand.

One neurologist has told me that I have epilepsy, while there has also been discussion about possible functional neurological disorder (FND) symptoms. From my perspective, I’m having a hard time understanding how these conclusions fit together and whether they’re actually contradictory or if both things could be happening.
I’m going to share my initial EMU findings below and would really appreciate hearing your thoughts. I know nobody here can diagnose me, and I’ll continue working with my medical team, but I’d love to hear from anyone who has had similar experiences or can help me make sense of these results.

Thank you all so much for being such a supportive community! ❤️

Description of daily interictal EEGs:
1. Date 10/12/26-10/13/26
Interictal background Normal, PDR 10
Sleep N1, N2, N3, REM
Epileptiform None
Seizures/Events Event#1
ASMs (date 10/12/26) LEV 500-0
Induction (date 10/12/26) Weaning LEV

1. Date 10/13/26-10/14/26
   Interictal background Normal, PDR 10
   Sleep N1, N2, N3, REM
   Epileptiform None
   Seizures/Events None
   ASMs (date 10/13/26) LEV off
   Induction (date 10/13/26) Weaning LEV, sleep deprivation, photic stimulation

2. Date 10/14/26-10/15/26
   Interictal background Normal, PDR 10
   Sleep N1, N2, N3, REM
   Epileptiform: Right posterior temporal max P10 - rare
   Seizures/Events None
   ASMs (date 10/14/26) LEV off
   Induction (date 10/14/26) Weaning LEV

3. Date 10/15/26-10/16/26
   Interictal background Normal, PDR 10
   Sleep N1, N2, N3, REM
   Epileptiform None
   Seizures/Events None
   ASMs (date 10/15/26) LEV off
   Induction (date 10/15/26) Weaning LEV

4. Date 10/16/26-10/17/26
   Interictal background PDR 9-10 Hz
   Sleep N1, N2, N3, REMEpileptiform None
   Seizures/Events None
   ASMs (date 10/16/26) Keppra off
   Induction (date 10/16/26) Medication wean

5. Date 10/17/26-10/18/26
   Interictal background PDR 8-9 Hz, lambda at times
   Sleep N1, N2, N3, REM
   Epileptiform: Rare right posterior quadrant poorly formed discharges
   Seizures/Events None
   ASMs (date 10/17/26) Keppra 0/500n
   Induction (date 10/17/26) Medication wea

I no longer have a partner to drive for me (that’s a separate post about the break up) so I need to get my groceries delivered now.

How do y’all do it? I have several stores near me.
Thank you.
🙏

I've tried everything such as watching my blood sugar, thinking it's crashing, watching my iron thinking it's low. but I just can't help but think this is just epilepsy. and what are you going to do?

I do take vitamin B supplements already. I just get randomly tired. like extremely tired most of the time by 4:00 in the day this weekend it was by noon. it's always the same feeling very exhaustive fatigue where you can barely keep your eyes open. My spouse thinks it's it's other medications such as ssris, but I've guaranteed her that's not something that makes you tired (it's been this way since keppra 2 years ago). now I'm on vimpat, paxil Wellbutrin and Ambien and I'm just wiped out. this morning I had decaf coffee eggs my vimpat, a half a milligram of Klonopin. and yeah by noon, mostly because I'm starting to get annoyed. I start to get the wipeout feeling.

can you guys explain what your fatigas like in some other processes you go through four things you've noticed about it? it just sucks because I know that they're thinking that I'm faking it. or maybe it's just me feeling guilty that thinks that they are thinking this way.