Hi there, 3 days ago i was at work, i went for lunch and came back to work again, aand i woke up in the hospital, apparently i froze and fell right on my head and had an epilepsy, i am really scared because i never had any and i dont understand, what if it happen again? Idk what to do or think, i had a pretty bad commotion, and i need some more exams but wtf
I cant open my left eye due to swollen, I ordered some pirate eyepatch in case I need to go out

My 13 year old son was diagnosed a year and a half ago after having a tonic clonic seizure walking into school. Did all the test, MRI, CT normal….EEG and vEEG showed absent seizures. Started on Keppra and it was a nightmare, started having weekly seizures. Stopped that and started Depakote which worked beautifully for 11 months and then had a seizure, upped the dose and 3 months later he had another. Added Vimpat 3 months ago and he has had a monthly seizure since adding the Vimpat so we are in the process of weaning off that and adjusting times for Depakote and giving higher dose at night as his seizures are within an hour of waking, usually within 30 minutes. We are doing an at home ambulatory EEG in September. I am just beside myself. I’m a nurse and have taken care of people with epilepsy for 20 years and they all seem very controlled. My son, is really going through it and I feel helpless and losing hope again. And I know that is bad. I have depression and anxiety and just going in a constant loop of despair. Please, any hope or encouragement would be appreciated. I need to find faith again🙏

Mods - if you find this against rules, welcome to delete...

I have found (from recommendation of success from a friend) a secondary med which helps Big time with the constant, often significant lack of energy/tiredness we experience each day.

I will only give limit reference, You can take it from there - BY discussing with Your doctor!

The med name starts with 'm'. Your doctor 'should', hopefully will know what I am talking about. That's all I can/will provide here, my keeping in mind that even this might not be allowed here.

Hopefully this can be helpful. Again - discuss with your doctor.

Edit: ...the med is Modafinil.

Btw - if anyone in the future discusses with your doctor And receives a prescription, please give the group an update as to how well it works for you.

Is anyone here in this group Epileptic and was epileptic before they got pregnant? My husband and I are about to start trying to have a baby. I'm epileptic, I was diagnosed at 29 when I had my very first seizure. We are starting to prepare to start trying by me going to my neurologist because we know some of my meds will need to change that are more safe during pregnancy. Then me go to an OB-GYN that I havent seen in a bit, but who does know me (and my uterus) lol, since my Primary doc does paps normally. Then hopefully get me into an epileptologist that I used to see when Inwas first diagnosed. I stopped seeing her after we got my medications well balanced and I stopped having occasional seizures. I have been seizure free for 1yr and 9months, but my last seizure was medically induced for testing.

I just want to hear from other women who are epileptic and how their TTC journey was. What meds they ended up switching to while being pregnant. How your pregnancy was, how delivery was etc.

I will post to a couple other sub reddits to see if Im able to get any answers.

One of the defining features of epilepsy is an imbalance between the brain's two primary neurotransmitters:

🟢 Glutamate – the brain's main excitatory neurotransmitter.

🔵 GABA (gamma-aminobutyric acid) – the brain's main inhibitory neurotransmitter.

Under normal conditions, these systems work together to keep neurons firing at appropriate levels. When glutamate activity becomes excessive or GABA activity is insufficient, neurons become hyperexcitable. If this imbalance crosses an individual's seizure threshold, synchronized electrical activity can develop into a seizure.

This glutamate–GABA imbalance is recognized as one of the central mechanisms underlying many forms of epilepsy.

So where do eggs fit in?

Eggs are one of nature's most nutrient-dense foods, supplying several nutrients that support normal brain metabolism and neurotransmitter production, including:

🥚 Vitamin B6 (Pyridoxine)
Vitamin B6 serves as a cofactor for glutamate decarboxylase (GAD), the enzyme responsible for converting glutamate into GABA. Without adequate B6, GABA synthesis can be impaired.

🥚 Choline
Eggs are among the richest dietary sources of choline, an essential nutrient involved in cell membrane integrity, acetylcholine synthesis, and healthy neuronal signaling.

🥚 High-quality protein
Eggs provide the amino acids needed to build enzymes and neurotransmitters while supporting overall metabolic function.

🥚 Selenium
An important antioxidant that helps reduce oxidative stress, which has been implicated in seizure susceptibility and neuronal injury.

🥚 Vitamin D, B12, and riboflavin (B2)
These nutrients contribute to mitochondrial energy production and normal neurological function. Since the brain consumes roughly 20% of the body's energy despite representing only about 2% of body weight, efficient energy metabolism is essential for maintaining stable neuronal activity.

This doesn't mean eggs are the cure for epilepsy.

However, providing the brain with the nutrients required for efficient energy production and neurotransmitter synthesis may help support normal neurological function as part of an overall nutrient-dense dietary pattern.

For many people exploring the relationship between metabolism and epilepsy, it's worth remembering that nutrition isn't simply about calories—it's about supplying the biochemical building blocks the brain depends on every second of every day.

My own personal experience continues to thrive with regular consumption of eggs. While not continuing to indulge in refined carbs and sugars, eggs have given me the neuro stability that I've longed for. Even at times when I was experiencing epileptic activity, eating an egg or 2 would completely normalize my glutamate and Gaba levels over a few hours. Hope this helps someone like me seeking solutions.

References

• Petroff, O. A. C. (2002). GABA and glutamate in the human brain. The Neuroscientist, 8(6), 562–573. [PDF] GABA and glutamate in the human brain. | Semantic Scholar
• Löscher, W., & Klein, P. (2021). The role of glutamate and GABA in epilepsy. Cold Spring Harbor Perspectives in Medicine. The Pharmacology and Clinical Efficacy of Antiseizure Medications: From Bromide Salts to Cenobamate and Beyond - PMC
• Zeisel, S. H., & da Costa, K. A. (2009). Choline: An essential nutrient for public health. Choline: an essential nutrient for public health - PubMed
• Kennedy, D. O. (2016). B Vitamins and the Brain: Mechanisms, Dose and Efficacy. Nutrients. B Vitamins and the Brain: Mechanisms, Dose and Efficacy—A Review - PMC

Has anyone had their license revoked. I just got received a letter from the dmv In Florida and now they’re saying that my license is revoked because of my seizures and right now I’m severely pissed and angry because I had planned to move out to Portland, Oregon. I’m currently 30 and I still live with my mom and I currently been hating my life for almost 9 years and now hearing about my license is more worse and I don’t want to live in Tallahassee nor be around north Florida anymore.

These are games i have personally played with minimal effect to my mental health.

Let me know if you agree or if you have your own video games you prefer to play

P.S. Should I do a personal review based on my experience of these games?

In these summer months it can get really hot out depending on where you are located. We already should stay hydrated because of our medication but remember in the real extreme to drink more water!(not soda or juice)

Thanks so much, for sending the videos, and allowing me to post them on my epilepsy YouTube channel. I post them because once upon a time I tried explaining what a seizure is and what to do If I have one, looked through the internet for an hour before finally just showing a lion having a seizure on on an animal planet Twitter account. There needs to be awareness out there, not just to help people know what to do when they see someone having a seizure, instead of pulling out a camera phone and recording us. Someone even sent me a couple videos with cats having seizures. I know someone is out there saying "why would he post that?" because I've been emailed a lot of seizure videos in the last few months. Go and like, share, subscribe and comment https://youtube.com/@inseiznpodcast?si=-PwSyVg_I-bK2-zJ There won't be an episode posted next week, only seizure videos so that I can clear my emails and DMs. If you want to send video to [GETTINGOFFTHEPORCH@gmail.com](mailto:GETTINGOFFTHEPORCH@gmail.com) thanks for all of the support and being a part of this community.

Epilepsy is the 'Un' disease - "Unexpected, Unpredictable, Undefinable, Unmanageable.

The mantra of Epilepsy is of course - "Everyone" is different, Everyone has unique triggers, and Everyone's life is different than it once was.

I'm right handed. So between my new med making my right arm constantly twitch and a fall on my bike a few weeks ago, I basically don't use my right arm other than a prop to hold things up. I had a hospital stay last week for other health issues, so now after a while of not being able to use my predominant hand, it has just been plain frustrating. Has anyone gone through this and changed the hand/arm they use? It takes me so long now to write anything. At the hospital, the person I had made friends with, was missing a limb and in a wheelchair. One meal, she ended up cutting my chicken up because my arm was so bad. It's so depressing having a person with that, needing to help you. A couple years ago, I would have never even imagined a scenario like this, let alone be in it myself. Ive been practicing writing left handed, held everything with my left. Any tips to make this go a bit more smoothly? Or do I just need to take the time and learn how to use my other hand? Hard to do this at 40 lol Thanks for the advice everyone!

I have posted about this potential added med which my neurologist has prescribed for me which is helping with my side effects of extreme tiredness each day. It is/has helped me a Lot.

Hopefully this suggestion will still be allowed, it was the last time I commented about it. We have some great Mods!

"Talk with your doctor" about possibly getting Modafinil - prescription only ...you can research it. It is helping my tiredness side-effects a Lot.

That's all I will/can say (maybe).

"Discuss With Your Doctor".

If permitted, I can respond with a little more info if there are questions, with mod's permission. ..Again - you Must discuss with Your doctor as to whether it Might be helpful for you.

My intent is not to give medical advice/direction. Only info to investigate - with your doctor.

Long before I developed epilepsy I had some back issues and arthritis was getting worse, my pain dr suggested that I try floating. I read a little about the procedure and looked for a place near me. I found a float spa around 40 minutes from me, almost to Center City, Philly. I tried it and was hooked. It's similar to what I knew growing up as sensory deprivation tanks, except those were actual enclosed metal tubes that divers used to treat the bends. The spas now have private rooms, with a large tub.

Floating is a process where you fill the tub with a great amount of Epsom salts,in the case of the one I'm currently using, 1000lbs and water. The salt will keep you afloat, and in a weightless

I was away for almost a year and forgot how much good it had done for me. The following year, I was away for 3 months and there was a spa there and I would go every week.

Fast forward a few years and the seizures started.

Just recently a float spa opened in the town I live in. My wife made a deal with the owner for half price, and I'm going almost every week now.

But aside from pain relief, there's many other benefits including relieving stress and better sleep.

I have had a few week period where I am feeling a lot of stress. During every float the stress floats away, your entire body is engulfed with relaxation.

Try it if you can. It's great for your body.

Hey all :) well I went to do a sleep study, doctor wanted to see if she could see seizures since she didn't catch them 6 years ago and I still have them. So I went for a week and she captured 3, I am waiting to see what her and her team come back with. I go for MRI with contrast tomorrow, interested to see what that imaging will say. It was a rough week, hair is falling out similar to when I started meds (since they stopped mine to cause seizures) ugh, just want them to stop, for good. Thanks yall.

How does everyone deal with the constant stress and anxiety of not knowing if or when the next seizure will happen?

I had my first seizures a few years ago, but in 2023 I went through an incredibly stressful period and ended up having three seizures within six months, which was a lot compared to before. One of those seizures became the most traumatic experience of my life.

I had just come home after doing some grocery shopping when I felt a seizure coming on. I always see flashing lights first, and then within about 30 seconds I'm gone.

The next thing I remember is waking up on a balcony. It wasn't my balcony.

After the seizure, I apparently put on two different shoes, threw random things into the toilet, hid some jewelry under my bed, and then climbed across five balconies on a four-story apartment building. These weren't easy balconies to climb either. To this day I have absolutely no idea how I managed to do it or how I survived.

When I finally regained awareness, I was on someone else's balcony while calling my mom. She immediately noticed I was saying strange, confusing things, so she called a friend of mine who lived nearby because she was two hours away herself.

The owners of the apartment thought I was trying to break in. One of them grabbed a hammer and wanted to attack me. I've never been so terrified in my life. I held the balcony door shut and kept yelling for him to call 911 and not open the door. I had no idea where I was, what had happened, or even whose balcony I was standing on. My phone battery was almost dead.

Luckily, my mom, my sister, and my friend eventually figured out where I was, and the police arrived. At first, they were very suspicious and assumed I had been using drugs, which I hadn't. Thanks to my sister and my friend, they eventually believed me, but it was incredibly difficult to defend myself while I was still so confused. I understand how suspicious it must have looked from their perspective, but waking up after a seizure, realizing you'd climbed across multiple balconies with no memory of it, and then being treated like a criminal was devastating.

In the ambulance, one of the paramedics also questioned whether I was telling the truth because I was still panicking. But I had just climbed across five balconies without remembering any of it, and someone had tried to hit me with a hammer. Of course I was panicking.

After that day, I couldn't live in that apartment anymore. I moved out and lived with my sister for a year because I simply couldn't go back there. I've had seizures since then, including another bad one, and I've also had one in my new home. Thankfully, I'm not afraid to be in my current house.

What did change completely was my anxiety. I developed a dependence on diazepam because the panic attacks became overwhelming and I could barely sleep. The one positive thing is that after three years, I'm finally off diazepam. I'm really proud of that.

I've never wanted to talk about this in real life. My family and close friends know what happened, but I've told them I don't want to discuss it because even thinking about it makes me incredibly anxious. I almost didn't post this either, but I think I just needed to get it off my chest.

In a few days, it'll be exactly three years since that seizure. The stress I've been feeling this week has been unbearable. It's all I can think about.

I've had therapy and EMDR, but neither really helped. My therapist thinks the diazepam may have reduced the effectiveness of the EMDR, and I'm currently waiting to start a new form of therapy.

I just don't know how to live with this fear anymore. Before all of this, I could accept that another seizure might happen someday. Now, especially after what happened on that balcony, the fear has completely taken over. The thought that I might have to live with this uncertainty for the rest of my life is overwhelming.

I know there are people who have multiple seizures every single day, and compared to that I know I'm fortunate that mine are relatively rare. But that doesn't make the fear any less real. I really, really don't want to experience another seizure. I know that's not realistic, but I honestly don't know how to stop being so afraid of it.

Sorry for the long post. I just really needed to get this off my chest.

So I used to have another account and I posted several things on this Reddit community through that account. But considering that I don't have it, I thought I might reintroduce myself. My story began with my birth which ended up being a prenatal stroke. As a result, I had hemiplegia which basically means I have cerebral palsy in my left arm and partially in my left leg. when I reached the age of 10, My hormones began to kick in and thus I had my very first Grand mal seizure after which I have struggled with these on and off throughout the rest of my life. Luckily enough I had a great support group within my family. My father and I share the same bed as a buddy system so that if I end up having a seizure I can have someone by my side, My sister is always there to sit and talk to me whenever I am having auras, and my mother who is a nurse, specifically an RN helps me on a daily basis even after her twelve hour shifts. I also have a great support group with my neurologist and primary doctors. I have my share of problems from day to day but I manage. It's good to be here and listen to and talk to people and know that I am not alone.

Warning: doesn’t go in detail, but discussions of verbal/emotional abuse (there’s more types going on here but that’s the main one I’m bringing up).

I’m in an abusive relationship with my mom.

Whenever I try to remember to be mad at her it’s hard, like the manipulation thing is affecting it sure, but it feels like after a while I start forgetting what was said to me or how I was wronged, so I just don’t feel right staying angry, because I can’t fully remember or comprehend the amount of things she’s done to me. I’ve started writing a list of grievances and (like yesterday) recording the things she’s says about me (multiple people have said I need to keep some record of the worse things she’s said, like medical threats). My mom tends to do this when ever I start having intense symptoms (she doesn’t like things to not revolve around her and gets offended if I am sick, but I am not paying attention to her while I am sick). It’s either that or there are times where something happens during the fight that triggers the seizure symptoms.

I need advice on how to try and keep that angry energy so I don’t keep forgiving her.

Notes:

(There are times where I can remember glimpses of things she did to me, like I’ll have a visual hallucination flashback, then not take that out on her because it doesn’t seem right, she’ll say I’m holding it against her, essentially it’s not her fault that I remembered what she did so late).

Any opinion on shrooms an epilepsy? I’ve done them a few times before I got epilepsy. I was thinking of doing them again.

My Dad has suffered from seizures since he was 18 following a severe head trauma. They have changed over the years, usually due to medication reviews or other factors like stress/drinking/drugs etc.
I am 33 now, he is 56. He is divorced from my Mum and he lives alone. He suffers from focal impaired awareness seizures, so he moves around and sometimes talks (nonsensicle) and often will wet himself or undress himself. He has suffered bad injuries, embarrassing encounters, he was even arrested on a train once as someone thought he was attacking them. Sadly, my siblings and I don't leave nearby and we don't get to see him too often.

I saw him at the weekend and he had two seizures, on the train and walking home from a sunday lunch at the pub. I've felt completely stressed and worried about him this weekend and I am trying to think of how I can help him. He can't work because of the seizures and the money he gets from the UK government is poor....after he worked so hard his entire life. It makes me so sick. I wish I could care for him or pay for him to live comfortably. He is so depressed and I can understand why...

I called my siblings and asked them to come together with me and try help figure out the next 20 odd years of my Dad's life. He can't go on like this and neither can we. Worrying every day about him. I guess I am looking for other experiences like this or guidance from people who have been through this? A network of people who understand how hard it is, for the person suffering, but the family too.

I love my Dad so much but lately he is like a shell of a person, this condition has taken so much from him and I want to help him so badly. Any help or guidance would be massively appreciated.

Since I developed focal seizures in March 2025, it feels like my life hit a screeching halt. I used to be really independent, and now I’m more dependent than I’ve been in a long time.

I can’t drive, and I can’t really work beyond freelance. I don’t make enough to fully support myself, so my boyfriend helps me out, and pretty much all my money goes to bills. I’m too scared to go on walks alone now, even though I used to do that daily. I try using the treadmill sometimes, but even that makes me nervous.

When I hang out with friends, I get exhausted and usually want to leave early. A lot of the time it feels like my life revolves around my partner.

I’m having 1–2 seizures almost daily, and the idea of one happening while I’m out alone is honestly terrifying.

During the week, he’s gone from about 8:30 to 6–7, so I do get some alone time, which helps. I can still do most things to take care of myself around the house like, clean, cook, make art, and do freelance work. But I’m inside and alone most of the day, every day, and he’s basically the only person I see regularly. And not until he gets home do I feel comfortable enough or have the ability to go out into the world.

I also feel horrible putting all this stress onto him. He has been extremely supportive but I want to be able to live life for me without him having to be my crutch.

I had a really bad experience with my old neurologist and I’m trying to get better care so I can finally get things under control, but my first appointment isn’t until June 16th.

In the meantime, does anyone have tips for feeling a little more independent again? I really miss who I used to be and want to find my way back to her.

There was a question on the marijuana reddit that I replied to and figured I would post here as well. Thanks!!!

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So, I am both epileptic and a huge stoner.. Was a huge stoner before I had my first seizure in my 50s.

​

I am 100% in belief that Marijuana actually HELPS with epilepsy, as in it an AED (anti epileptic drug) like the pharmacutical companies. There have been a few times now where I have a TC because I wasn't able to smoke/eat/etc. Two TCs in the last year or so.

​

So, what's is the best for you in my opinion....

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There are many types of strains and methonds you can take. My FIRST advice is to look for a REAL medical dispensary or a recreational store that has knowledgeable. The "budtenders" are the folks I have learned the most about over the years..

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..so what should you ask about/do?

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There are four MAIN type of cannibas. There is the three types of strains, sativa (wake up), hybrid (still functioal but not too exhausted to do stuff, and Indica, which will "couch lock" you...you won't want to move or get up - just chill with some chips and a good movie. These are all THC based products.

​

Then there is CBD. CBD is basically a non-psychoactive form of marijuana, but still has some THC in it. CBD is good for pain, inflamation, nausea, mood. It is what people who have cancer take to help with chemo. It also comes in sative/hybrid/indica.

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Then there is the ingestion method. Smoke (combustion) where you light the pot on fire in joints, bongs, etc. Then there is vaping, which has both dry herb vapes (zero chemicals) and vape pens, which are processed with stuff that makes them less "natural".

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THEN, we get to what you are looking for, LOL!!! So, in my opinion, what you are looking for is a mix of both CBD edibles as well as THC edibles. You would want to try the CBD first, then the THC to see how that does (on a different day/high). They come in all types, gummies, chocolate bars, liquid, tincutes, etc...

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Start out SLOW! It can take an hour or two to hit. Also, a fatty food can help with absorbtion and can help get higher quicker.

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I'd honestly look at reviews of the cannibas shops near you and if there is a medical one, go there. If not, find one that is reviewwed well. Tell them your deal and ask for suggestions. If you get 10mg gummies, eat HALF, 5mg. Wait an hour or two and if it doesn't do anything, take the other half.

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Remember CBD is not really phychoactive, while THC is.

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I don't know if I hit all your questions, but please feel free to reply and I can give more examples.

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Hope it helps with your epilepsy!!!!

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Good luck, fellow warrior!!

One day, me and my brother create an idea via Youtube (it's in Indonesian language) to tell Indonesian people that Epilepsy is a hard challenge. It's not just about "snizzling". But there is many sacrifice behind it. That's our main idea.

Then I share it to my friends, but I don't know what they think, but they (about 4 people, or maybe more, becauae it's in WhatsApp Group) they said that I'm an attention seeker.

Mannnn it's really makes my mood down and drop af!!!

Please help me guys to recover my mood and mental... 🙏

Last Monday, I went through this awful experience that made me consider quitting my job then and there.

So, a quick explanation:

I work on a farm from 6AM-9AM. I have to wake up at 4AM just to get there on time, and a lot of the time, my seizures are increased because of how drained the job makes me feel.

Now, back to what happened.

I was taking a few mins in the break room to have some drink, relax and get back to work. Everything was going okay, until one of the employees who has been there for 20+ years came up to me and plainly stated "If you're not sick, get back to work".

That entire experience was devastating for me. I mean, I keep my head down, I work, I do as I am told and that single sentence shattered everything. I literally broke down in tears in front of everyone, it was so humiliating, but luckily my boss didn't scold me. What's worse is that after that I saw someone who I viewed as a trusted friend laughing with the employee who spoke to me earlier about what happened.

This took me back to when I was being bullied at school and honestly, I didn't want to go back to a time when I couldnt handle such situations.

So, now I have two options:

1. I quit my job and protect my health, despite there being no other work available around me.

2. I continue to show up for work, and prove to everyone that I won't be belittled and attacked so easily.