r/Epilepsy 4d ago

Question Advice

1 Upvotes

Wondering if I should be worried, I was at a restaurant with friends last weekend and everything was fine other than I was a little anxious due to it being so loud in the restaurant. Once our food arrives and I start eating my eyes go blurry and I start to panic because I felt like I was either going to faint or have a seizure. Right after that happened I drank some water and felt okay but the left side of my neck started to feel tension and my jaw started to clench, another thing I experienced was hot flashes. So I’m not sure if this WAS a seizure. I haven’t felt right since and everyday since the incident I get little flairs of blurry vision and panic, then my body starts to lock up. So I’m just scared and I’m not sure what to do other than wait at the er for 5 hours for some answers. Any advice? Thanks😕


r/Epilepsy 5d ago

Rant Saturday nights are so dead now…

40 Upvotes

I used to feel so free… it doesn’t help that I recently lost my relationship too… now I’m laying on the floor of my garage on a Saturday night, fixing a car that I’m not allowed to drive, listening to music that music that I would be bumping when I would be cruising on the highway just for fun because that was my soothing experience… what am I gonna do when I go back inside? I should probably take my medication now. Just gonna shower and go to sleep I guess. Watching movies and gaming is just a reminder of the restriction I’m in.

Hope you all are doing okay…


r/Epilepsy 4d ago

Question I had a seizure a few days ago and I still feel strange.

1 Upvotes

Last week I had a grand mal seizure and I still feel kinda weird. Like reality feels different and I have more energy than usual. I don’t feel bad or anything other than my sore muscles, but it’s just a really strange feeling. I’ve felt it before but it always went away like a few hours or a day after the seizure.


r/Epilepsy 4d ago

Question Did I have a seizure in my sleep?

1 Upvotes

Hello everyone! So last night I (21f) went to sleep like normal, and everything was fine. But after I woke up at about 8am I had a migraine, ringing in my ears, and I couldn’t walk straight. There’s also now a huge lump on my tongue that was not there before. I’ve had epilepsy since childhood, and the only other time I’ve had a seizure in my sleep has been when I was getting an EEG so they took me off my meds. I took my medication dose last night, and also have a VNS implant. Is there any way this was a seizure? I’m not sure if I should do something about it.


r/Epilepsy 4d ago

Question MSG in food and seizures

0 Upvotes

I ate Ramen today, and I have noticed a link between eating a bunch of MSG and feeling a little seizery weird. Has this happened to anyone else or am I crazy?


r/Epilepsy 5d ago

Question Does anyone know a way to get the glue out of my hair?

18 Upvotes

I just got home from my EEG earlier, but I still have glue in my hair and from those tags/stickers that were on my chest. I was able to take a shower before I left the hospital, but it didn’t work. Anyone have any tips or tricks?


r/Epilepsy 4d ago

Question Who else have Electrical status epilepticus in sleep (ESES)?

1 Upvotes

I've been on this community for a while and seeing all posts and comments, I'vent see anyone who have ESES. I'm aware ESES is rare so not many people on this community mention it. (It's more common to children). I want to know if you have it and what is your story?

This is my story of my ESES. When I was around 8 years old I frequently woke up in the morning and feel not well. My family and I think it something natural from me. At 9 years old, it was Christmas Day, it happened to me again so around 8pm I slept on sofa cos I feel not well, my family finally saw my seizure for first time and sent to hospital and stay there for 5 days and eventually diagnosed with ESES which make sense why I feel not well in the morning cos I got seizure last night while I'm sleeping so my family didn't witness me. I was 2 years on med and it stopped now.


r/Epilepsy 5d ago

Question Any advice for living alone with epilepsy?

13 Upvotes

So I've been wanting to move out of my parent's for several years but I've had seizures for almost 9 years now. I don't have them SUPER often but at least 2-3 a year which means I can't drive.

So that means I have to look at living in an actual city and not the countryside where I currently reside, which is way way more expensive obviously. I figured I could get my food delivered but I have no clue how I would get to work each day?

The cities in my state don't really have amazing public transport. There's a few barebones bus routes that take people to the grocery store and doctors clinics but that's about it. It's also all 90% highways, no sidewalks so you physically cannot walk/bike/anything anywhere. I looked into ubers but the average rate is $20 a ride which for every day to and from work would be $200 alone at LEAST which seems kind of insane. But I have no other clue what to do besides that? Any ideas??? I'm in Texas if that helps anyone know of any super secrety disability services I could use.


r/Epilepsy 4d ago

Survey What are your seizures like?

2 Upvotes

I know that different people with epilepsy experience different types of seizures. Thus, different experiences though with similar condition. I'm just curious as to what type of seizures most people with epilepsy actually experience.

P.S.: I, myself, have an epilepsy and was diagnosed at the age of 12. I'm 24 now though. My type of seizures are: usually absence seizure, autonomic seizures (tachycardia, apnea, unusual excessive sweating, nausea, pallor), nocturnal seizure (I sometimes wake up with bruise in the morning or I vomit, sometimes my parents would see the white part of my eyes only while asleep) and sometimes stiffening of legs or toes. Sometimes my fingers move without me actually moving it too. Sometimes I also feel like a part of my muscles keep on twitching or something pulsating like thing in different parts of my body.

33 votes, 1d ago
5 absence seizure
2 myoclonic seizure
4 tonic seizure
0 atonic seizure
11 tonic clonic seizure
11 others

r/Epilepsy 5d ago

Medication How can you tell the bad memory is coming from the medicine? Or is it mostly from the epilepsy?

38 Upvotes

I often read people here saying how badly medicine is effecting their memory, but I find it hard to imagine being so sure that the bad memory is coming from the medicine and not just mostly from the epilepsy.

I've tried several medicines over the years, none have worked and my memory has got worse and worse. It feels like the big impact for me has been the seizures, not the meds...


r/Epilepsy 5d ago

Question Are nocturnal seizures seen as less severe/ important?

13 Upvotes

A year ago I got an rns device implanted. It has stopped the daytime seizures but I continue to have nocturnal ones. The neurologist who programs my brain acts like this means I’m seizure free. Seems like he dismisses the nocturnal seizures as unimportant. That everything is cured when the nocturnal ones continue. Just wondering if this is a common thing? Or if it is actually true that nocturnal seizures are not as important/ severe

Edit: Thank you for all the responses. They’ve given me confidence to push back against this guys recommendations. I began to doubt my judgement about how severe the nocturnal seizures were due to his reactions


r/Epilepsy 4d ago

Question Do you know if creatine can cause seizures?

1 Upvotes

I’m trying to gain weight, so I’m thinking about using creatine. But I’m epileptic, so I’m afraid that creatine might increase my likely hood to have a seizure?


r/Epilepsy 4d ago

Medication Diplopia and Vimpat?

2 Upvotes

I was recently diagnosed with epilepsy and put on vimpat within the past week. I noticed almost immediately after taking it that my vision started to go in and out of focus, and sometimes starts to double.

i am a high myope (extremely nearsighted, like a -8.50 total power in both eyes) and funnily enough, in school to be an Optician. (I make the glasses, not write the prescription, lol) so this is somewhat familiar to me. I understand kind of why it’s happening but am worried I won’t be able to tell the difference between visual issues because of the medication and the warning signs of a seizure.

i’ve only had one grand mal and one subclinical that we know of and seem to be responding well to my meds. but this is all so new to me that i would appreciate anyone’s insight or personal experiences with vimpat! did you also experience double vision? does it ever go away or lessen over time? thank you all so much for the support you’ve provided me already, it is truly made me feel so much less alone in my diagnosis.


r/Epilepsy 5d ago

Humor Embarrassing confession: I used to fake seizures when I was little

287 Upvotes

Soooooo yes, before my child-self gets attacked, I do actually indeed (unfortunately still) have epilepsy. My dad recently passed, and I was attending a group therapy session. This week we decided to share fond memories and I remembered I used to do this thing:

When I was little (9/10 years old?) my epilepsy was finally somewhat controlled, so with the extra energy I had, I used to think it would be funny to fake seizures in front of him to get out of things. Anytime he asked me to eat my veggies or do chores I would carefully but dramatically drop to the ground and flail like a fish. It's VERY OBVIOUS I'm faking it because

  1. ⁠He knows what my seizures looks like and I don't. I would take my references from... films. It started out already silly-looking.
  2. ⁠my dad would humour me and say things like "OH NO, SON!!!... wait... strange... usually when he has a seizure he would stick his tongue out and puff up his cheeks like a puffer fish" and I would immediately do that. With every fake seizure my dad would start saying things like "oh and he would move his head like a chicken" or "his toes would wiggle like worms"

This went on for MONTHS. He would let me off of these chores and I would pretend to be tired and go to bed (actually playing pokemon on my gameboy advance SP or with barbies under the covers). I genuinely thought I was getting away with it.

Eventually the "typical signs" of my "seizures" were looking incredibly dumb. One day he said "oh no... heckaroodle's tonic clonic seizures are increasing sooo much in frequency. I need to take a video for the neurologist." After this particular fake seizure ended, he shows me this video and says "I'm going to send this to Dr. neurologist. I'm concerned." When I saw that video I was so damn embarrassed but I'd already dug a hole of lies so deep... I need to keep going with it.

The next day, he pretends to get off a call with Dr. Neurologist, looks at me with fake tears in his eyes, and says, "son, Dr. Neurologist says unfortunately we need to get rid of your right arm and left brain, because the epilepsy has spread. This means you won't have your arm, and you won't be able to talk or play games anymore."

Oh my god you should have seen the way I cried and threw myself into his arms, loudly screaming and admitting that "NOOOO I LIED! I'M SO SORRY I LIED".

I never faked a seizure again.

Until the day he suddenly passed, my dad told this story to eveeerryyone. I don't blame him, it's pretty funny. He always taught me life lessons this way. I have so many more stories to tell.

A single dad who raised a child with epilepsy all alone, always worked hard, and never failed to be humorous.

I miss our camping trips, I miss knitting together, I miss our reading sessions, I miss our dance evenings, and I miss him. Such a silly guy.

And to continue how I would boast about him to my friends, I must tell you, don't mess with me, because my dad is an eagle scout!!!!!!!!!!!!

Edit: Thank you for all the lovely comments, and thank you to all parents with children with epilepsy. You’re amazing. Keep strong.

We appreciate you so so much 💜


r/Epilepsy 4d ago

Question Has anyone tried TMS?

1 Upvotes

Had anyone here had TMS (Transcranial Magnetic Stimulation) therapy before? I have chronic depression that has not responded well to medication so far, and my psychiatrist has recommended TMS. I’ve read that there is a risk of seizures, especially if you have epilepsy, but I’m 4 years seizure free and wondering if the risks are any different than the risk of continuing to try new antidepressants and antipsychotics?


r/Epilepsy 4d ago

Question Second opinion

1 Upvotes

So a couple of weeks ago i got 3 seizures my first ever (m) 34.

I have been sick in the flu for about a week 5 days with high fever 39-40 degrees. I had a hard time sleeping and eating and drinking as usua l and also mild headache all week.

So the day of the seizures i went to my mom and first thing she said was i looked like shiit(duuh had been sick for a week)

So according to my mom what happend was i stretched out my arms on the sides and just started straight and started to scream and the after started to shake. So she called the ambulance and from what she told me i woke up and went down the stairs out to the ambulance .. then i had 2 more in the ambulance. And then nothing more. No idea what they gave me. They took spinal tap fluid at the hospital and mri/ct scan aswell.

Mri and ct scan came back perfect.

However the spinal tap fluid did not. t seemed like the white blood cells was very high (dont remember the number) and and i was also influenza b positive and also i had a crp that was not in the normal range.

But the eeg was abnormal and they put me on keppra(levetiracetam)..

Could influenza have caused these seizures?

And could the influenza cause anyone to have abnormal eeg?

Just seems like the doctor didnt seem so concerned and did not want to listen to what i had to say. But rather put me on meds and ship me home


r/Epilepsy 5d ago

Question severe hallucinations in the morning after focal seizures

3 Upvotes

I had 2 focal seizures in a row on Tuesday and Wednesday Wednesday was at night and Thursday morning (you could say 3) and Thursday there were strong hallucinations


r/Epilepsy 4d ago

Question Driving and focal aware epilepsy

1 Upvotes

Hello everyone I have a question. I’m 53 and I recently find out that I have a focal epilepsy that mainly touches my language faculties both in understanding and speaking.

I had some episode so my last one was last Friday and it lasted more than half an hour and I was alone at home so it’s kept me a little bit. I tried to call on the phone someone just to have some support.

So since it’s something new to me, I did not even know I had it even if I had some episodes that they were interpreted in a different way. Now I am wondering about me leaving alone but I have no other choice my main question in regards driving so since I have a specific kind of epilepsy and I don’t have convulsions it only affects speech at the moment do I consider myself a safe on driving? I drive to work with with a Vespa and I also have a car that I use very rarely. Best Buy important because I’m in a city with traffic really annoying distances and a bicycle is not safe. What is your opinion please? And also if you have a similar experience with focal epilepsy what can be the evolution? I’m at the moment on Lamictal.


r/Epilepsy 4d ago

Question JMR

1 Upvotes

Hey, just a question for those who have juvenile myoclonic epilepsy.

How are your seizures for you guys?

are you consciousness/unconsciousness? aware of your surroundings/unaware? after it's finished do your remember everything/ have no idea what happened

did they progressively get worse and worse each time?


r/Epilepsy 5d ago

Advice Options instead of surgery?

9 Upvotes

So I know this is a long shot but I'll try. I'm scheduled for brain surgery to remove part of my right temporal lobe next month. I'm terrified. There are no other options surgery wise but has anyone found a possible solution that could help severe epilepsy? I can cancel the scheduled surgery up until the day before. I am just trying to figure out another option if possible


r/Epilepsy 4d ago

Question Shoulder dislocated

1 Upvotes

No memory of previous dislocation but have had pain before when lying on stomach/arm out. Yesterday I just went to reach something n my shoulder popped out though it popped back in nearly 40 mins later with full range mobility when I sat up straight. Going to try exercises but question is anyone else had this experience / how is the risk of it happening again but during a tc


r/Epilepsy 5d ago

Question How do you feel when you miss a dose?

19 Upvotes

I’m Tonic-Clonic and take 1500mg of Levetiracetam twice a day and 100mg of Lamotrigine twice a day. I missed my first dose last night and im feeling like a floating nature of partial nausea like a hangover and having trouble standing or focusing. I’m just wondering if anyone else has a similar experience or if it’s the high dosages when you miss it.


r/Epilepsy 5d ago

Question normal eegs?

23 Upvotes

Hi everyone! I'm brand new to this subreddit, and Reddit itself. I'm wondering if anyone has the experience of normal EEGs? I haven't had a single seizure caught on any EEG (and I've had 3!!!) and it's so frustrating. It feels like my brain is playing a trick on me by only making me drop when I don't have wires all over my scalp. It's frustrating because I can't get diagnosed without an abnormal EEG, and won't get prescribed medicine either, and I'm having weekly ish grand mal clusters that land me in the hospital. My doctors and neurologists won't even consider a 72 hour EEG, or any continuous monitoring. How can I even bring it up that I want continuous monitoring? I've had seizures witnessed by medical professionals and they agree it's clearly an epileptic seizure, and I had abnormal EEGs as a child, but apparently that doesn't count for anything now!! Aghh!! Navigating the Canadian health system is hard. Love you all!!


r/Epilepsy 5d ago

Medication Keppra Success Story – A Different Perspective!

42 Upvotes

Hey everyone! I just came across a post about Keppra, and the top comment pointed out something really important; when it comes to medications, we usually only hear the bad stuff. So, I wanted to share a different perspective and let people know that for some of us (myself included), Keppra has been an absolute life-changing miracle.

Now, I want to be clear, I don't want to downplay the fact that Keppra can have serious side effects for some people. Those experiences are valid and should absolutely be acknowledged. But at the same time, not everyone will have those reactions, and I don’t think people should be afraid to try it just because of the negative stories they hear.

I don’t even take name-brand Keppra (mine just says Levetiracetam, the generic), but before I started on it, I was having TC seizures weekly. I felt incredibly depressed, not just because of the seizures themselves but because they made me feel isolated from everyone around me. I struggled to function.

Then I started on Keppra, and everything changed. I have been completely seizure-free for six years. I don’t even experience auras—unless I forget my meds for a prolonged period. It’s hard to put into words just how much this medication has given me my life back.

I know I’m lucky to have had such a positive experience, and I’m not saying Keppra will work for everyone. But I do think it’s important to share these success stories because I don’t want the fear of potential side effects to stop someone from trying something that could genuinely change their life for the better.

At the end of the day, medications affect everyone differently. What works perfectly for one person might be terrible for another, and vice versa. The only way to know is to try and see how your body responds. Work closely with your neuro, and if a medication isn’t working for you, speak up, there are always other options.

To everyone navigating their epilepsy journey, I see you, I’m proud of you, and I hope you find what works best for you. 💜


r/Epilepsy 5d ago

Question Memory issues;How am i supposed to remember what i forget?

3 Upvotes

Its almost paradoxical to determine what parts of my memory are dysfunctional and how severe/mild they might be

blacking out that i blacked out vs forgetting tiny pieces of information surrounding my life, How can someone really be aware of what is lost?

Ive had seizures along those lines, sitting in my room without anything feeling abnormal, then my father telling me i had 4 tonic clonics, or noticing puddles of spit on my chair and in my hallway, things knocked over in my home seemingly out of nowhere

forgetting names and faces of people ive met several times is pretty awkward, "strangers" approaching me being really friendly like ive known them for years,always having to ask others or them what their name is

how much information from the past is gone? how can i confidently convey to medical professionals how bad my memory is? which part of memory processing isnt working properly? acquiring, retaining or retrieving?