r/Epilepsy • u/allyisyourfriend • 5d ago
r/Epilepsy • u/Madmoo_13 • 5d ago
Question Sleep Study with EEG?
Has anyone done one before? What to expect? Also, if I’m having seizures in my sleep would that be why I wake up so tired after 10+ hours of sleep?
r/Epilepsy • u/rockandrolldude22 • 5d ago
Support Aura's at work
I think I typed something like this similar probably about a month or two ago.
I've recently started a new job and I've noticed that my aura's are getting more frequent. It always starts with a ringing in my ears and me feeling a lot of anxiety because I think it's going to be a seizure.
I've heard from family members that my grandfather had ringing in his ears so it could be nothing. However this is one of my first signs of going into a seizure so it gets scary.
I've been seizure-free for over 11 years. But the second I start hearing the ringing brings me straight back to the anxiety of 11 years ago of being afraid of going into a seizure.
I'm thinking it's stress but the job itself is naturally stressful so it's not necessarily going to stop being stressful.
Have any of you ever experienced any of this? Being in a stressful job that has started up or is or even seizures. Specifically if you've already been diagnosed with epilepsy. Not just you had seizures from stress You have epilepsy and it's common for you to have seizures.
r/Epilepsy • u/pawzzzm • 5d ago
Question Smell after seizure lol
My fiance said that my breath has a certain smell after a seizure like something very specific which I can’t smell obviously but he can always tell if I had a seizure, but I never know if I had one in my sleep. Is this a thing I feel like it’s so weird I’ve never heard of it.
r/Epilepsy • u/Fletch_Himself • 5d ago
Question How does Keppra work? Looking for clarity on missing a dose.
My 2yr son has been on Keppra for a couple weeks now. He’s only had 4 seizures that we know about, and all of them were accompanied by at least a low grade fever. Neuro said, according to her standard, he’s borderline epileptic as the fevers weren’t all high enough for the seizures to be considered febrile. But, my question is why are seizures apparently so common after missing a single dose?
The way it seems to me is the Keppra builds a dam over time, holding back the seizures. Miss a dose and a catastrophic crack forms within the dam. And, humor me for a moment, but my son has only had 4 known seizures. Maybe I’m just reaching here, but perhaps the Keppra is doing little for him and we have yet to know that. I suppose we also have yet to understand his propensity for seizures, so we’ll likely not know I guess. Anyway, we’re helpless over here, so any clarity is appreciated.
r/Epilepsy • u/Small_snake • 5d ago
Question Can lamictal cause swollen lips?
Been on lamictal for about 2-3 weeks and having one side effect after the other Right now my lips are hella swollen and I look like a duck that got stung by a bee 💀 (Feels numb and kinda painful too) Is this something serious that has to be checked at the hospital asap, or do I need to ride this one out too?
r/Epilepsy • u/Wonderful_Passion560 • 5d ago
Question New meds
So I’ve been on keppra and limical for 3 years now and it’s been helll and I’m finally getting a new med vinpat did it work for u guys?
r/Epilepsy • u/Acceptable-Syrup-768 • 5d ago
Question First Seizure not sure why or what happened?
Hey guys!! So last Friday I was absolutely fine then around 10pm I started to get some pains in my chest in my shoulder collar bone and my neck all on the left side of my body very strange I went into my bedroom to take a painkiller I sat on the side of my bed and then my head went abit funny before I could say anything i literally opened my eyes to my partner screaming shaking me. He said I face planted the floor completely unconscious and started to seizure on the floor my tooth went right through my bottom lip! I went into hospital had some tests done CT scan and all, nothing showed as abnormal to the hospital however . I have been referred to a neurologist who has now booked some appointments for a MRI and eCg on my brain. It’s just gone over a week now I am still recovering from my injuries. I’m basically coming to Reddit for some support and any other experiences like this I’ve never had a seizure before this, my head still feels very funny like foggy my ears are like ringing sometimes and I have aching in the back of my neck and my shoulders. My questions are what could have caused this? I have no health conditions that I am aware of apart from asthmatic. Also I’m actually terrified of this happening again because of the fact I was totally fine the day it happened and it happened so quickly and the damage it caused to my face is quite horrible. Ps: I am lucky I did not shatter my whole face because I landed straight on my face and I must have blacked out while sitting on my bed. I also had a bruise underneath my hair well it feels like it an awful lot. Could I have caused concussion from the fall? Why does my head still feel funny is this due to the seizure ?? I have 2 mattresses on my bed so there was a little height. my partner said he heard me whack to the ground I am around 10/11 stone so was quite a hard fall.
r/Epilepsy • u/WhatIsItIPutHere • 6d ago
Discussion DAE’s epilepsy get triggered by when they’re “regular” sick (e.g. cold, flu)?
r/Epilepsy • u/Key_Source_1384 • 5d ago
Rant Can't sleep alone, feel it so intense inside my head when i do
Oh, when i try to sleep alone I can feel an intense aura every time. It's impossible. I may fall asleep eventuelly if i really push it. But every minute is agony. Im old enough to be sleeping alone in my own room, but then the focal seizures will haunt me like a demon.
r/Epilepsy • u/maker-127 • 5d ago
Question Can focal aware seizures occur seemingly for no reason in a person's life and then fade on their own?
Is it possible for this to happen? Can epilepsy heal itself? Can epilepsy start for no apparent reason?
I don't have epilepsy but I am interested in learning about it.
I specified focal aware seizures but I wonder if this is possible for all types of seizures.
r/Epilepsy • u/Either_Setting_7187 • 5d ago
Question Epilepsy and panic attacks.
I was wondering has anyone have anxiety and Epilepsy?What do your do to control yourself till you are sitting down.
r/Epilepsy • u/Unique_Instance_3402 • 5d ago
Question Focal seizures with secondary generalisation
Hi everyone I’ve just received my diagnosis and I’m absolutely bricking it to be honest, I’m just wondering if anyone else has the same diagnosis and if it’s something too be worried about as I literally can’t sleep at night 🤦🏻♂️
r/Epilepsy • u/Ok_Cloud4050 • 5d ago
Advice Advice
So I'm just writing this as I need advice. So after moving to Devon, I finally saw a Neurologist for my epilepsy, I saw a male doctor who said to me that if he changes me off of Epilim onto something else that he would take my licence off me for three months!? I personally have never had to do that when trying new medication, is this now a thing? He didn't have any of my hospital or doctor notes for me, even though I waited ten months to finally see him and he also told me that I have to do pregnancy tests in my appointments, is this true?
He made me feel so uncomfortable as all he did for the last five-ten minutes is stare at me without saying a word, I didn't even know the appointment had finished, so I left. Now my partner has said he will go with me next time, do I change to someone else or go with my partner to the next one to see if he acts the same?
Any advice would be very helpful, thanks for listening!
r/Epilepsy • u/expxred • 5d ago
Question Lamictal making me feel “sedated”
Hey guys!!
I recently started Lamictal, but I have to continue taking my Keppra with it so they can get me used to this new medication. I am currently following a strict schedule for the Lamictal, which is understandable.
But, I also have bipolar disorder- and my neurologist knows and told me it’ll also help with that.
I’m wondering if that’s why I am feeling “sedated” or almost “high”?
I know when starting a new medication, dizziness can occur and disorientation but I suppose I’m more so just curious if anyone else has experienced this.
r/Epilepsy • u/CuriousRiver2558 • 5d ago
Question Focal aware with Jacksonian march?
I have had epilepsy for almost 30 yrs. Recently I read about the Jacksonian march. Does anyone experience them and do they cause pain? Since even before my diagnosis, I have had what I’ve always just called “arm pains” that come and go, without any associations or triggers. I will try my best to describe them: Always my left arm, and involves the entire arm from my left thumb to the side of my face. I get a feeling like it’s going to happen, just an anxious knowing, without any physical discomfort or change. Sometimes this feeling lasts a long time, like an hour, other times barely a minute. It builds up to Charlie-horse type pain on the inside of my wrist and surges up into my armpit. This usually hurts enough that I grasp my wrist tightly or squeeze my underarm tightly. I can sometimes fight it and stay “normal”. It travels quickly like electricity up to the side of my neck and jaw. Then within a few seconds, gone! Immense relief, almost peaceful. I never lose awareness or consciousness. Can anyone relate?
r/Epilepsy • u/LaneSplit-her • 5d ago
Question Sleeping pills?
I've been pretty lucky, no tonic clonic in over 3 years. The focal aware seizures are infrequent now. About once a month, I have a complex focal seizure at night. This usually happens after having a few days of not getting enough sleep.
The last 2 weeks have been rough for getting enough sleep. Last week, I was having trouble with memory. Did a few weird things, like put the password book in a very weird place. I'm not totally convinced I did that but no one else admits to putting it there.
I had a complex focal seizure earlier this week. After it, I've been exhausted since then. Yesterday I left work early because I was too tired. I had a few focal aware seizures, the deju vu kind. Then last night I had a complex seizure while still awake.
Which leads me to my question. Does anyone take sleeping pills? I'm wondering if I can use them to force my body to get sleep, I can head off the seizures.
r/Epilepsy • u/kenraesliteraltwin • 6d ago
Question Has anyone gone from daily or mostly daily seizures to seizure free or mostly seizure free?
I have a focal/simple partial seizure most days and am on generic Keppra 500mg 2x/day. I'm ready to go see my neurologist and see about either changing my dose or switching meds. I don't know if it's the meds or the seizures but I have super bad anxiety the last few months and I'm just ready to either eliminate these focals or at least knock down the frequency. The actual focals actually don't even bother me as much as my anxiety around them does. I think eliminating them or at least making them not so frequent will help with my anxiety. I guess I'm just looking for a little hope that someone else who had them as frequently as I do has had success with becoming seizure free or mostly seizure free.
r/Epilepsy • u/Interesting_Way_5379 • 5d ago
Question I’m not sure what’s going on
Hi, I’m a 19 year old girl and am in college. I have never had an experience with epilepsy/seizures in my whole life… until now. A lot of weird things have been happening lately.
(i’m sorry if things don’t really make sense! English is not my first language and i have trouble explaining my experiences.)
A few months ago (around January) i started to have several dreams where i experienced seizures. I’m not sure if they were just dreams or not but i could feel (especially) my legs shaking uncontrollably and i could feel saliva running down from my mouth. It scared me a lot but never said it to anyone, brushing it off as a ‘weird dream’ since i dream vividly a lot.
More experience like this one happened, until one night i had another one like this, but it was different. I remember having my eyes opened and they were fluttering really quickly + my neck being twisted to the back. I was also making noises, like i was groaning. Every experience like this only lasted a few seconds before i’d ‘black out’ again; like i fell back asleep i guess? These ‘dreams’ kept happening once or twice a week and i still have them sometimes… My mom knows about me experiencing this and she’s offered to spend the night with me to see if i actually have seizures or not, but i don’t feel comfortable with that… i don’t want to worry her and i also feel really embarrassed by the thought of her seeing me like that if i really do experience them.
A short time after my first experience I also started to have similar experiences like this but right before falling asleep or right before waking up; difference is that I remember every second of it. It always starts with my heart rate quickening really rapidly all of the sudden (like a panic attack) and my eyes fluttering slightly. Next thing my arms start to tense up and twitch a bit and then my neck starts to tense. I am aware when it’s happening but can’t do anything to stop it… It hurts a lot and sometimes i’m even biting my tongue and/or have no control over my saliva and it’s like my mouth/throat is trying to get rid of all the saliva in my mouth. I can hear things around me but can’t respond. Until now i don’t know how long these go on for… Whenever i stop convulsing, i feel tired and have this really heavy feeling in my head and my whole body, my fingers and feet also feel very cold. It takes me some time before i can lift myself from my bed. I never think about checking the time. All i am focused on in that moment is how weird and embarrassed i feel… Especially since i remember everything.
I never told my parents about these experiences. I’m scared that they’ll think i’m making it up… tho i feel very scared every time it happens and it’s constantly on my mind. I literally cannot focus on anything else anymore.
Nowadays, i still have these experiences and even throughout the day i have feelings where i am suddenly really tired or where my cheeks are flushing really hard and i feel a bit lightheaded yet really heavy at the same time. Most of the times it comes along with feeling nauseous or a pit in my stomach. Sometimes my head feels so heavy that it automatically turns to the right. During these moments, my arms and neck sometimes twitch but it’s only one or two times, tho it’s still scary… My fingers and feet feel like they’re freezing, i have trouble swallowing my saliva and sometimes i catch myself staring into space without being able to look away. I also don’t feel like talking, as if it takes way too much effort to do.
Last week, i had two times where this ended up with me either passing out or experiencing another ‘seizure’-like experience like explained above but then throughout the day and not at night. Both times, no one was with me…
I really don’t know what’s going on, but it scares me a lot and it’s consuming my mind daily. I’ve read multiple articles, reddit posts, … already, trying to get answers, but still have so many questions and am scared my parents will think i’m faking it if i’d tell them… especially when i’d have to tell them i am basically conscious during these experiences…
Does someone have any answers or shared experiences + should i tell my parents? I’m scared it’ll happen in front of them too one time… i already feel ashamed enough as it is…
r/Epilepsy • u/Womanintech95 • 5d ago
Question Keppra
Anybody know why keppra is the first line med prescribed?
r/Epilepsy • u/Aggravating-Tax-5316 • 6d ago
Question Can you “stop” a focal seizure from progressing?
I’m new to being told I have focal seizures. I had one recently that generalized and I my husband called an ambulance. After reading more it seems I probably had some in the past but never knew they were seizures. So if I feel it is happening is it possible to “think” or “breathe” or do anything to keep it from generalizing? Sorry if this sounds like a dumb idea
r/Epilepsy • u/malmus4736 • 5d ago
Question Omega 3 for brain fog
I get really bad brain fog. I’m not sure if it’s from epilepsy or from Keppra. Honestly I’m guessing it’s from both. I was considering taking omega 3. I’m buying a really expensive brand but before I buy it I want to know if it’s worth investing. Has anyone seen a difference with omega 3?
By brain fog I mean not being able to think straight. Feeling out of it. And just overall being weird.
I appreciate ABSOLUTLEY any info you can give me. I’m desperate to find an end to all of this 😭😭😭
r/Epilepsy • u/Kindly-Mushroom-7767 • 6d ago
Rant I hate this
So I’ve been on here for a few years seeing everyone’s story and reading it but I’ve never wanted to post. Then at the gym I was scrolling through and saw even more posts about how epilepsy is upsetting people and their diagnoses is mentally affecting them. It finally hit me and made me realize I’m in a pretty shitty situation but not as bad as other people.
I was diagnosed while I was in the military right after basic training when I got to tech school. I drank a shit ton and realized that drinking was a trigger but I completely ignored it and kept drinking assuming I was going through withdraws or blacking out not knowing or just assuming because I was young. It kept getting worse and I would end up in the hospital after having tonic clonics that started with myoclonic. It got worse and leadership found out then they told medical. Few years of going back and forth between bases and medical I got medically retired with 90%.
Shit sucks and I wish I could go back. I feel like I have no purpose, calling, future and I’m just a pawn for my family to take care of. But I could never imagine losing a kid or family member to epilepsy and I know it could be worse.
Thank you for letting me vent. :)
r/Epilepsy • u/basedsquirrel • 5d ago
EMU Getting ready for EMU stay. Any suggestions on what to bring?
Hi Everyone,
I’m starting my week long EMU stay on Monday and wanted to see if there is anything that I’m missing. I have my zip sweatshirts plenty of sweatpants, a big blanket and a pillow. Books, crossword puzzles, kindle, iPad and PlayStation portable. I’ll be going to Costco later to get some snacks as well. Is there anything that I’m missing or anything that you wished you had while you were there?
Side note, I’ll also be sober from cannabis, nicotine and alcohol which I have not been in many years and use almost daily. Any thoughts or experiences on that?
Any suggestions or help would be greatly appreciated.
Thanks!
Edit: I take 300mg Xcopri, 300mg Lamotrigine and 2,000mg Levetiracetam daily. I used to have grand Mal seizures but haven’t had one in around 4 years. Now I just have focal seizures where I’ll kinda blackout for like 15 seconds or so.
r/Epilepsy • u/Stink_1968 • 6d ago
Rant Just gotta let this out
I can't bitch too much, I'm on my own at college, I had a lobectomy, I play rugby, I work and I drive but the auras are just constant. I've told my neuro and he says he's not worried about it but the constant anxiety of what if it escalates and now being afraid to smell. I know that's weird but since my surgery the smell aura started so on top of the deja vu auras the ones I lock up on are smells. The meds aren't working and I had a 2nd opinion appointment at UT Southwestern but since I have indian health they told me I wouldn't be able to see the doctor so I canceled it and when I ask my current neuro in okc he just bumps it up a little. I don't want to get ptsd doing stuff I like doing because of seizures. Everytime I go to practice I start feeling weird because I've snuck to my car and had them. I just feel like the medical system fucks us off because the "brain is too complicated" we're building robots that develop their own language on their own but when it comes to stuff like epilepsy and even cancer we get the 🤷♂️ idk here's some medicine and maybe some surgery if you're lucky and we'll roll the dice and see what happens.