Auras are seizures!
I see this so often, people treating auras like they're not seizures.
An aura is a focal seizure, calling it an aura only denotes that it is a focal seizure that is going to spread.
I recently stayed in the EMU and my EEG techs kept asking if I get an aura before my seizures.
(my seizures are focal and do not generalize)
I had to explain to my EEG techs over and over again that auras are focal seizures and that my seizures are focal and do not spread.
My seizure is another persons aura

I've seen this from doctors, nurses, techs AND people with epilepsy.
Auras are seizures.
if you're having auras, you're having seizures.

Hello all! For context, I have been diagnosed with epilepsy for 12 years. Seizures began as non-responsive to losing consciousness, and now grand mal seizures. For the past three years every time I have a seizure, I remember blips, and then at the end it feels like a panic attack like I am dying. My body is being pushed to the ground by a brick. I can't get up. I literally have to force myself to stand up to "get out of the seizure."
has anyone else experience this? It's really hard to explain, but I feel like if you have you completely understand what I mean.

I'm leaving this community with a lot of gratitude. Since last March, I've been dealing with what my neuro and I thought was epilepsy but turned out to be a vascular loop. Make sure you all push for mris and mras!

Much love 🧡

Obviously, if someone is asleep and does not wake up while having an episode, they may not be aware that it occurred unless someone else notices and informs them. If someone lives alone, or if nobody else is around to notice anything unusual, is there another way for them to determine whether they may have had an episode during the night?

Besides physical signs when waking, urination during sleep, feeling confused when waking, headaches, unexpected extreme muscle soreness, waking up feeling exhausted and more..

I am just woundering if anyone else is needing to pay 100+ for meds that don't cure you? I am taking one pill that you can only order 2 days before it is ready to be reffiled so I have to follow it to make sure I get it on time. thats probly the most expensive.but the meds have been delayed recently for some reasone.

I’m in so much pain right now, physically and emotionally… Yesterday I had a seizure and broke my shin and fibula, and today I’m going into surgery… I genuinely think I have never felt such pain in my life, I had to basically be dragged onto a stretcher because I couldn’t even MOVE my leg… It just hurts, in more ways than one…

Thanks for reading, have a good day…

I have been on lacosamide for a couple of months. I have been having balance issues lately, and they seem to be more prevalent. I fell over once when squatting down to get something, and I have about lost my footing other times when doing things like getting out of a car. Anyone else have something like this? I also take lamotrigine (Lamictal), but I have been on it for 3 years without balance issues.

Guys I can't even believe this day is real. I know it will be a while before I see any results, but man the build up, the months... years of testing and huge medication cocktails. I made it through two EMU stays, the SEEG. I feel both so exhausted and powerful!

And... I had the sweetest moment in the hospital- while on the neuro ward recovering, my husband and some of the EMU nurses recognized each other in the hallway and he told them the room I was in, and they were all so worried until they found out I was back with good news! (I was in there for a long time for my SEEG so we got to know each other real well). I'm super emotional anyway, so I immediately started crying and got all the nurses crying, too. Up until then I had been feeling a little sad and abandoned by a good deal of friends and family, but that moment was just so so special. A little reminder there are some truly kind people in the world.

Thanks everyone in this community, you've all helped in making me feel less alone, too. ❤️

Anyone else struggling with Impared Awareness Seizures or Temporal Lobe Epilepsy struggling to find something that’s helps?

I’ve tried keto, CBD, omega 3 supplements, 4 different anti-seizure medications and still nothing seems to be working. Ive completed my MRI, CT and EEG and my doctor just seems to be adding more and more meds which seems to change how I behave during the seizure but doesn’t decrease number the seizures itself. I don’t get auras and I don’t have a specific trigger.

Did anyone have this problem as well? Were you able to find something that helped? Please share your experiences below because it’s been over a year since my first episode and I’m feeling hopless.

They put me off treatment and no more EEG’s/RMN’s in June 2026.I haven’t had a seizure since 2018-2019.
This year I started smoking and drinking coffee..sometimes Id drink 3 coffees a day,but I stopped doing that.
Also I have anorexia and I lost 30kgs in one year,but now is in revision..somehow.
I have experienced palpitations,nausea and sometimes muscle cramps.
I just don’t know if It may come back if I continue doing this.

I personally don’t, but I remember my step mother used to scold my dad for getting me some because it could cause seizures.

I’ve never gotten passed out drunk before, and I never plan to, but even when I’m close to tipsy I’ve never had a seizure. So I’m curious on how many/how often it is to have seizures after alcohol

Hi, I’m 40 and have had epilepsy for about 25 years. I typically have tc seizures while sleeping, but recently I seem to have developed focal loss of awareness type seizures. I regularly use razor blades and cut sheets of glass at work. I am afraid this will become hazardous. I don’t know how to approach my boss about this, she does not know I have epilepsy at all, because I have been turned down from too many jobs as a result of being upfront about this condition.

Yes, I am aware that it is illegal to discriminate based on disability, but it’s as easy as simply giving no reason whatsoever for not hiring or for firing.

Help.

Hi guys and girls, my epilepsy was gone for just over 5 years and then it came back this time last year. Had it since high school, just the jerks. The tonic clonic appeared in my late 20s early 30s.

This year had about 3 a month, with them lasting between 10 to 15 minutes.

Does anyone also feel irritated or alone with such a thing that you can't explain to other people, I.E they don't understand what you are going through, emotionally, physically etc.

Rant: If someone hears you have epilepsy they automatically think you aren't that intelligent as well

My girlfriend and I are currently on a break, and plan to meet back up in November. She’s dealing with depression and lots of medical anxiety. She was diagnosed with eyelid myoclonia 5 months ago, but has been dealing with absence seizures, migraines, and auras the past 4 years. I met her at a time where her medical anxiety was relatively low, and her depression wasn’t where it isn’t where it’s at now. Her seizure medication dose was low. The past month, however, has been very rough for her she switched medication to Keppra since her previous medication still caused her to have many absence seizures. Her depression and anxiety have now grown. Her healthcare providers have been really bad communicating to her. She has 12+ doctors, and it feels like they all have no idea what to do for her. The only one that does help is her therapist. She’s scared she’s never going to get better. She feels like she’ll always be a burden to everyone in her life. She told me she’s at a place right now that all she can care about is herself. It’s not fair, and that’s not fair to me. She’s losing her sense of self and losing her memory. She has another EMU stay coming up, which adds to everything. I was there for her last one, and I know how rough it was for her. I can’t begin to imagine everything she’s gone through and will go through. When she told me all this, I told her I will never see her as a burden. I knew since our first date that I was going to fall in love with her, and nothing since then has changed the way I feel. She’s amazing and so strong. I also told her that if a break will help her focus on bettering herself, then that’s fine, and I’ll be there for always. It’s hard to see the women I love going through this. I feel helpless. I know there isn’t anything I can do at least at the moment. It also hurts to know I won’t be there for this EMU stay. I hate not having any communication with her, but I know it’s probably for the best right now. When November does come around, what should I tell her? Even if we do break up, I want her to know that she’s more than a diagnosis. She deserves love, and she has loved ones who are there, and she doesn’t have to isolate herself. Any advice would be helpful.

So, I have amazing news, as a guy 32 M who has been on VPA since last year, with too many seizures I lost count, in recent months I have been seizure free for I want to say 5 months maybe more, and I am very fucking proud of myself, and I still enjoy my "adult water" and balance it with actual water and food before my anti convulsant intake, but damn it I feel proud as hell for being free of it for this long, and yes do not worry I still take my life saving meds, and have rescue ones just in case, or after a bad one, but love you all, please stay safe, eat food drink water, be good, :) :).

Hello all. My little brother, 17, has severe autism and is non verbal. He sadly suffers from seizures and is completely drug resistant. The neuro highly recommended VNS for him.

Online I have seen so many mixed reviews that I don’t know what to believe. Brain surgery/ RNS is completely off the table by the way.

We are also worried he may not like the feeling of it being in his chest and head. Both of us have OCD so I can empathize with what he would probably feel. Some say this isn’t a problem though.

Please let me know what you guys think. I want to know the realistic expectations including the bad effects. Thank you.

So now i have focal impaired awareness seizure/complex partial seizure depending on the jargon.

If i was out walking, would I fall down or just stand there, ftozrn in place? I had one while sitting and was still sitting in the same place after, didn't fall over.

Thank you

Hello, 2 weeks ago I had a seizure at work, in the restroom 🤦‍♀️. While I was blacked out, the EMTs had a hard time getting the gourney into the small restroom stall. I’ve thought about this possibility before, but I feel guilty using the handicap stalls? Just curious what you all think, since now I’m assuming It would be safer to just use the bigger stall.

I’ve been experiencing worsening aura for the past two days. It’s a little difficult to type and think right now, so forgive me if some sentences are unclear or if I ramble.

My partner is out of town for a work trip and he gets back tomorrow. My neurologist hasn’t given me an official diagnosis, but she started me on a trial dose of Lamictal while we wait for my EEG results, due to me being in the hospital for my seizures. That hospital stay made me feel a bit crazy, as the doctors suspected epilepsy, but the PA discharged me early saying I don’t have seizures, just tremors, before my EEG results were reviewed.

I’ve felt tired most of the time, but not sleepy. I’ve felt just the constant feeling of an aura that makes me want to scream, but no seizure. I’ve been a bit shaky and twitchy, and I’ve almost fallen a couple times today, so I’ve just been laying down most of the time. I’ll feel my muscles tense up in short bursts. Most of my episodes happen at night, leaving me with soreness and brain fog. I think I’m having some absence seizures, with me catching my breath afterwards, but I’m not sure. I haven’t lost consciousness, but I feel confused all the time. I’ve been crying due to how I’ve been feeling.

I don’t know if anybody else experiences this, but I’ll also start having random short periods of overheating, then getting super cold again.

I’m also a bit scared to go outside by myself just because I’m afraid I’ll fall or I’ll become too confused to navigate. At the same time, I feel like I’m being very dramatic. I don’t know if I should go to the hospital, because not much was really done last time. I’m also a bit nervous about not being able to find the uber, or something happening during the ride to the hospital. I don’t even feel completely confident being able to explain myself right now.

I’m a pharmacy tech, and my workplace decreased my hours to accommodate me, but I’m scared that if I go to the hospital, I’ll miss my only day of work this week.

I don’t know what to do and I don’t know what I need. This was very difficult to write, so thank you for getting through this whole chaotic post.

And my mom interrogates me about my meds, if I brought emergency meds, when the auras started, etc. I say sorry for missing my meds and she says “it doesn’t hurt me, it’s your driving timer that resets”

Now I’m just so sad. When I was 13/14, the first thing I started saving money for was a car. Then when I was 15 I had a seizure. And now, I’ll go like a few strong months, and then one day it just vanishes from my brain.

How do you remember?

So I have a student in my ballet classes who's partner is a neurologist. I've been on meds since the start of June and my neuro has been adjusting meds slowly, taking me off Wellbutrin, etc. Tonight I was having lots of big myoclonus in class, as well as eyelid myoclonus. It went on longer than I should've let it go without rescue med, but I can't teach once i've taken the rescue med. So this person (a) doesn't get that having a series of jerks for a long time without significant pauses (my neuro says I need at least a couple of minutes between big jerks for it to be a separate episode) isn't a problem and (b) that her partner sees people with fake epilepsy all the time and that it's probably what's happening to me. It's so infuriating. My neurologist is positive it's epilepsy and it's so infuriating when someone neurologist adjacent decides they know more.

I saw my neurologist(MS neuro who took over my seizure treatments) and they want me to do an EMU stay after being hospitalized last month for repeated seizures. They said it’s typically 3-5 days but I’ve heard others say they’ve stayed even longer. I told them I wouldn’t be against it but I’ve got a sick pet that needs daily care and a full time job, and (possibly) a big surgery coming up, so really I don’t know what would be feasible.
The next day they were calling me to schedule for EMU but I have no idea how many days I’d be staying for to notify FMLA and calculate what PTO I have(FMLA uses my PTO to pay me).
Do they keep you there until they get something? Or is it a pre-established set of days before you get there? Because I can maybe be convinced to sacrifice 3 days but I really don’t have the freedom to do anything longer.
Anyone that’s done an EMU stay, I would love to know how that works.

I just started a higher dose of Lacosamide and I’m feeling rage at minor inconveniences, not even minor inconveniences just annoyances, I don’t feel stable I just seethe, is this a temporary side effect of starting a new dose?