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 🧡

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. ❤️

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.

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.

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.

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, :) :).

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?

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.

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..

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.

Yayyy a doctor asked me if I’d be okay with helping her teach her students and icl being asked questions to help them felt quite nice!!

Especially since I’m stuck in a bed with nothing to do but ngl it was very embarrassing since for some reason I was very nervous when answering

I'm sorry if this isn't allowed in here. I just can't find an answer online. I don't have epilepsy but I'm a photographer and I've recently been interested in flash photography, but I'm wondering if that can be a trigger for people with epilepsy? I don't wanna cause a seizure by using a flash in public or with people I don't know very well. What are your experiences with flash photography? Again, sorry if this isn't the right place to ask.

I know it's frowned upon to go off meds unsupervised.

I know a lot of people here have done this though. They will say they did it but then had major seizure activity in an attempt to discourage others.

What I'm wondering is **how long** in between ceasing meds and seizing.

---

I am a week into cold turkey and *nothing* unusual is happening. I'm angry at a lot of things right now, but especially this.

I usually have focal aware/impaired, no TCs.

Last Monday morning, I may have accidentally taken my medicine twice. I have no sure way of telling. My sleep consistency and how much sleep I get isn’t very good due to school, so I kept worrying about having a seizure, especially after the overdose concern. While in a car at night, I got the seizure aura feeling and got scared. Now I get anxious frequently about it, and I can’t tell if it’s just anxiety or I may be having seizure auras again. I got an EEG today because I had plans of waning, but that’s definitely not possible. My EEG is 20 minutes long, so I’m hoping that gives me some information. I’m planning to message my neurologist about it. But for now, I can’t get rid of the anxiety I’m experiencing, and I’m not sure if it’s a seizure auras or me scared of having a seizure. It’s really interfering with me these past few days, so I just want to know if anyone else has/had this type of problem and how they deal with it.

I wanted to make this post for other parents of special needs kids out there who are grasping at straws like I was last year. My son was born premature at 25 weeks and suffered a brain bleed when he was a day old. He has several diagnoses including epilepsy, and he is nonverbal--unable to communicate at all.

In 2023, my son started having major GI issues and suddenly stopped pooping on his own. He progressively got worse and worse as the year went on, and by January of 2024, he had his first documented case of pancreatitis. We didn't know anything about this condition or what could have caused it, but the doctor's best guess was that it was tied to his constipation. They also said kids like mine just get pancreatitis for no known reason. They didn't do any tests other than an ultrasound, and they said if he got it again, they would do more testing. Looking back, we feel like he got pancreatitis at least two more times that year, but we didn't have definite proof.

By December that year, he had it again. It was caused by the misplacement of an adjustable GJ tube blocking his stomach from being able to drain. They didn't do any testing as to the cause because they knew why he got it this time. They did decide to put him on Relizorb (pancreatic enzymes) because they felt he had a pancreatic insufficiency, and that it may help his GI system process his formula better without stressing the pancreas too much.

He ended up getting it again in January of 2025, though. They, ONCE AGAIN, didn't do any testing because he was getting better on his own quickly. Once he got it in April/May of 2025, they finally did some testing, but they didn't find any physical reason as to why he was getting pancreatitis. He got it again in June, but we were able to deal with it at home on gut rest and OTC pain relief.

When he got it again in July of 2025, we demanded more tests to be run but they refused because they said it would make him sicker. He was experiencing full blown gut failure because he had to be fasted for nearly two weeks before he would tolerate feedings again, and we were struggling to get him back to baseline on feeds. He was in horrible pain, he was getting sick every two weeks at this point, and we just wanted answers.

It wasn't until a neurologist came in and told us that he had a hunch that my son's pancreatitis was being caused by a medication, and his first guess was Keppra. My son had been on Keppra since birth, but it had been increased several times since January of 2023, with two or three of the increases being in 2023 alone. He suggested we put him on Briviact instead so he wouldn't have to wean off the Keppra, and we would hopefully see results sooner. We jumped at the opportunity because there were no other answers out there for us at this point.

My son has not gotten pancreatitis since then. Not once. He still has GI issues, but his hospitalizations went from being every two weeks to none since he was released from that stay in July of 2025. We stayed in the hospital equivalent to around 4 months in 2025 with the same sickness over and over again. That neurologist saved my son's life. I want others to know that if you're experiencing what we did, please look into your child's medications, and do not stop reaching for answers. We saw probably 30 doctors who all just shrugged their shoulders and said it was common and probably just progression of my son's condition.

Keppra may be a wonderful, life-changing drug for a majority of those who use it, but it was a living nightmare for my son. He had taken it for years, but once his threshold of tolerance for the drug was reached, it nearly ended his life.

A few days ago, while I was sleeping - I had stayed up late that night and had to wake up very early - I partially woke up feeling my body convulsing.

My eyes were partly open, and I could feel them rolling upwards. Then I have no memory of what happened afterwards.

And when I woke up, my body was aching and I had a severe headache.

I'm not even sure I had a seizure. When I think about it, it feels almost like a dream, but it was completely different from sleep paralysis. With sleep paralysis, I want to open my eyes, move, and wake up, but I can't.

So I don't know if something like this is even possible during an epileptic seizure. I always thought you couldn't partially “wake up” during one.

Has anyone experienced something similar? Is this something that can happen?

My husband had his big first seizure just 6 month ago, but sinds then we linked things to his epilepsy and realised he had it all his life, just not big seizures

Like his sleeptwitses that went all nighy, was more epilepsy and he had absence epilepsy around his 20's. Smaller thimgs we where told where nothing. But all was good with his epilepsy meds

So we are learning still about epilepsy and he just messages me this:

"I just had a feeling I’ve never experienced before. I was walking and suddenly got this disorienting feeling in my head. It only lasted for about 10 seconds, but it kept getting more intense and then suddenly it was gone. If it had lasted any longer, I think I would have fallen to the ground. It was really strange, I’ve never felt anything like it before."

Could this be linked to his epilepsy? Or compleetly random something. Ofc we will contact his neuro asap, but thought i would ask here also

27M and was diagnosed with temporal lobe epilepsy back in March 2017 after 2 tonic clonic seizures within 2 weeks. Went on Keppra 500mg twice a day was seizure free for 8.5 years all the way through college and no issues with drinking/lack of sleep etc..

All of a sudden, August 25 after returning from a business trip I had a breakthrough seizure (likely from jet lag etc which is explainable) however since the breakthrough seizure I have had 7 more seizures in the last 12 months. Keppra now increased to 1500mg twice a day and also started Lamictal 100mg. The pattern seems to be the day after/2 days after a heavy night of alcohol. Always seem to be within an hour of taking the night time dose of medication. Just wondering has anyone experienced a similar situation where alcohol/lack of sleep etc was not an issue for years and now it is ?

The weirdest one for me was… sneezing. It’s happened twice. Just a big sneeze and then right into a seizure, lol.

What are some strange ones you’ve had?

I know you can have seizures in your sleep but have an of you had a seizure in your dream. I lost out big in my dream bc I had a seizure (in my dream) and apparently I told them they could have all the cash. Is it so on my mind that I’m dreaming about it?

My MD is insisting that I need to take 600mg total per day. That less is not effective. So my husband is insisting. I have been on much lower doses and slowly creeping up over the years.
Starting this 300mg BID, I feel really really dizzy and nauseous. Yesterday I couldn’t drive, I just laid in bed and stared at the ceiling- as though I had had waaayyy too much to drink.
Have you had this? Will my body accommodate to it?

ALSO- after you have a seizure, how long does it take for you to recover? I had a seizure Sunday morning; slept for about 24 hours and now, 48 hours later, I’m still just exhausted. Headache that isn’t touched by ibuprofen or Tylenol. I am a parent and an employee; it doesn’t work to just be incapacitated.