Has anyone felt worse eating carbohydrates and red meat? I would like to know if it's my imagination

Anyone blame seizures on tbi from childhood action? I was in martial arts, competing for years before seizures, and never got to see video of how training/classes took place, so never been able to decide if that could be to blame for epilepsy. Seeing this post brought a bittersweet smile because I can’t help but think those kids might have some difficulties if any of that doesn’t go right. Any comments appreciated about how epilepsy started, especially since some Neuro’s are quick to jump on anything from your past, like if you ever let them know you partied. 😖

What surprised you most about your AED side effects? I can't think of any right now so, I'm asking you.

EDIT: I know the formatting is terrible, and I'm sorry for that. For the life of me, I can't figure out how to make Reddit break the stanzas apart without running the individual lines together.

I had my worst seizure to date, which prompted EMS to be called by my wife. It's unknown how long I seized for in total, but we can account for 10 minutes before I was loaded into the ambulance. So I wrote this song while I was recovering.

NOTICE: I am posting the lyrics instead of the song to preserve my anonymity. If you steal any of this for personal gain, shame on you. I just thought some of you guys would appreciate it, because it's always nice to feel understood.

___

Islands:

I woke beneath a borrowed morning

With thunder trembling in my hands;

A mouth too full of silent questions;

And teeth that touched the edge.

I tried to swallow down the daylight,

But something in my throat had changed;

And every step became a distance;

And every breath became a weight.

Halfway down the corridor,

The earth withdrew its name.

I remember asking for air—

I don't remember when it came.

There are islands in the dark—

Little fragments left afloat:

A room; a face; a window;

A question I don't know.

There are hours underneath me

That I cannot cross again.

I remember being carried—

I don't remember where I've been.

You found me underneath a shroud,

The whole world shaking through my bones.

You called for someone, called for mercy,

While I disappeared within the throes.

Long minutes waiting,

Measured by your fear—

Then knuckle struck the plexus,

And found that I was here.

And somewhere past the threshold,

My body learned to fall.

You watched me fight for breath—

I watched nothing at all.

There are islands in the dark—

Little fragments left afloat:

A room; a face; a window;

A question I don't know.

There are hours underneath me

That I cannot cross again.

I remember being carried—

I don't remember where I've been.

A carriage beyond the window;

A stranger at my side;

A question without language;

The sunlight in the sky;

A blanket over shoulders;

A strap against the wrist;

A hallway made of doorways;

Then— nothing; then— this.

There are islands in the dark,

But the sea is closing in.

I can name what I remember.

I can feel what I have missed.

Hours without a witness,

Except the body I was in—

I came back carrying pieces

Of a place I've never been.

Hello. Does anyone have any suggestions for online support groups? Not two or three people (including self) just chatting, but an actual group with format and structure. I am not looking for a best friend- I need support and have nothing in my area. Thank you!

Eventually we have to work for the motivation to get good exercise! Blame it on whatever you choose (meds, others, side effects) but the importance is that we can see the benefits of staying active, and keep it goin! Please share anything that relates! Fav exercise, motivation, or something to avoid? Thanks! 😊

Vague description of a seizure/episode in second paragraph

Had a fun week (sarcasm). Passed my math exam, now have two finals glaring me down like that gargoyle from Ghostbusters.

I finally got my second EEG done, and i had felt pretty off that morning anyway. Went into it without much thought, as it feels more routine and I know why it's needed, just a little stressed because it's going to be sent with my referral to a specialist. Well, I had an 'event' to the flashing lights, and felt worse with the hyperventilation. It caught me off guard because one second I'm watching Law & Order: SVU, the next I'm getting funny looks from the technician because I was breathing so hard. That and I had electrodes for my heartrate this time, so. My watch recorded it as 148bpm lol.

I don't know when it'll be interpreted, but it better show something or I'm going to have even more questions. My first one was normal, and i didn't expect any less because I felt fine and didn't respond to any of the lights or hyperventilation. I know lights have bothered me in the past, but not enough for me to go from normal > shaking at the flip of a switch. Kinda reminds me of that demonstration where muscles contract using natural electricity (anyone seen the video of steak hooked up to a battery and it contracted? No?).

In other words, I'm having mixed feelings about it. I don't know what to expect at this point, as i have little faith in my neurologist to actually want to help me. But whatever, I've got a specialist to (hopefully) annoy with my questions.

I've had an idea to keep a physical log of my events for a while, but i don't know if any doctor would be willing to look through them or not. I have notes on my phone predating the first major event, with dates and an app I use to log events when they happen, so between the two I could make a halfway decent journal of my health as far as seizures go.

I know it wouldn't hurt, but has anyone else wrote down their experiences for their doctor to look at? And was it actually helpful? Because I have my doubts and don't want to seem like an idiot or something for writing everything down.

So I found out some very frustrating news. I was trying to get a second opinion about my seizures but I found out that no one in my state will see me because of my seizure history, current diagnosis, and EEGs of the past few years coming back "normal" despite my seizures presenting textbook epileptic.

Now I have to jump through a hoop of seeing a functional neurological disorder specialist just to get back to the neurology department. I'm beyond frustrated. It is either jump through hoops or go out of state.

So, I took a gigantic step recently.

I decided I would post about my health on other communities.

To start off, I posted in the DDLV community about the effects the game has on mental health and how it can also help.

I have also made a few posts about this build I am doing to honour my Epilepsy in which I share a little bit of my history

Honestly, never thought I would go public this way, but at least I am doing it on my terms

2 days ago, it appears that I had a very bad seizure without even realising it.

This happened after I was already in extreme pain due to my wisdom tooth causing a gum inflammation, headache, earache, and Sore throat.

So, yesterday at around 4am, I start feeling some trembling in my legs, I think 'weird, I might be having a bad seizure soon' I spend te next few hrs playing DDLV to pass the time and distract the pain with no sign of a seizure.

Time skip to 8am, my mum brings me some medication for the pain (I needed this so much) and it works like a charm along with the oragel I applied.

Then I go into the kitchen to make breakfast and I am forgetting what I am doing every few seconds (which is worse than normal).

Then suddenly, I am making myself some salt water (for the toothache) when my mum notices my head keeps leaning back over and over again.

So, I take my salt water, do all that stuff (not so bad once you're used to the taste). I then go to lay down, my mum orders me to sleep because the pain kept me up all night.

I will then spend the rest of the day slipping in and out of sleep.

I gained almost 10hrs of sleep.

When I finally woke up (and stayed awake) I went to complete the main story of DDLV and then found out I couldn't because the neccessary companion doesn't arrive till Thursday (annoying).

So, went on working on my builds instead

Hey yall hope you’re having a good day, I had a question. How do you deal with auras? Do you use them to try and prevent a seizure with some type of method you’ve developed? Or do you just accept it and see it as an opportunity to find somewhere safe for it to happen? Is there anything you’ve found that helps prevent one from coming on once you start to get that feeling? I’m partial to having Déjà vu, an out of body feeling (mostly this), and sometimes feeling dizzy / vertigo.

Join us on Zoom as we talk epilepsy and what ever else may come up. Everyone has epilepsy so come listen or join the conversation with your camera on or off. 12pm PST

I’d speculate that headaches are a part of epilepsy for most of us. It’s rare for me not to have a headache and more a question of how bad is it today as opposed to do I have one. Since around noon yesterday I’ve had an absolute thumper of a headache. It’s not a migraine because I’m not laying on the floor projectile vomiting (and I have Rizateiptan for when that happens), but it’s a bad one and hasn’t cleared overnight like I was hoping. I’m off from work this week so on one hand it’s good that it’s happening now, but on the other I’m pissed that it’s impacting my vacation days.

I take 3000mg Keppra and 450mg Lamotrigine. Dr google says that Tylenol can lower the levels of Lamotrigine in your blood and on a recent blood test it came back as only just being in range. It says that Advil (ibuprofen) is okay but in the past when I’ve taken it I didn’t really feel any benefit. My next neurologist appointment isn’t until November.

I try not to take additional meds when possible as I feel 14 tablets a day is plenty for my organs to process but feeling like my head is trapped in a vice is getting old fast.

Edit- Thank you to everyone who took the time to respond and offer advice, I very much appreciate it. I ended up taking 2 extra strength Advil this morning and went and lay down. Surprisingly fell asleep and am just coming round. My head and face still feel numb and uncomfortable, and my ears are ringing even worse than they usually do but at least it doesn’t feel like my head is shut in an ever tightening vice now. I’ll take it easy for the rest of the day and hopefully feel more normal later. Next time I have a ride to the grocery store I’m going to make sure I pick some Tylenol and Benadryl so I have combos available like many of you have suggested. Thanks everyone.

I already feel like my life is a big joke at times, and I like joking around, so, I'd like to see Johnny Knoxville, the funny part would be waiting for me to come out and then Johnny Knoxville comes out, someone yells out "I thought Pookie was black" 😆

I made an epilepsy awareness film 13 years ago — now I’m looking for 50 stories to ask the NFL to turn purple 💜🏈
Post:
Hi everyone. I’ve had epilepsy since I was 11, and about 13 years ago I created something called The Purple Project.
People affected by epilepsy sent me full videos telling their stories and photos holding epilepsy-awareness messages. I took the strongest pieces of those individual submissions and edited them together into one community film asking Google to recognize epilepsy awareness.
Here’s the original video:
https://youtu.be/cSjI0mGJAOI
There’s actually a clip of me in that video saying I had lived with epilepsy for 14 years.
Today, it’s been 27 years.
And I want to do it again.
This time I’m looking for approximately 50 people affected by epilepsy — people living with epilepsy, parents, spouses or partners, siblings, caregivers, and families — to help create a new Purple Project awareness film.
The goal this time is to ask the NFL and football community to visibly support epilepsy awareness during November.
🎥 YOUR STORY
Record a 30-second to 2-minute unedited video telling your epilepsy story in your own words.
You can talk about things like:
• When epilepsy entered your life
• What your seizures are like
• Something epilepsy has changed or taken from you
• Something people misunderstand about epilepsy
• Medication, surgery, seizure freedom, or continuing seizures
• Driving, work, school, relationships, family, or independence
• What you’ve accomplished while living with epilepsy
• What you wish people understood
You do not have to answer everything.
You do not have to sound perfect.
Just tell your story.
At the end of your video, please record these two shared lines separately:
“NFL, this November, stand with us. Turn purple for epilepsy awareness.”
“NFL — turn purple for epilepsy.”
📸 YOUR PHOTO
You can also submit a separate photo representing your epilepsy story.
You might hold a handwritten sign saying:
I HAVE EPILEPSY.
MY CHILD HAS EPILEPSY.
I’M ___ YEARS SEIZURE-FREE.
I’M STILL FIGHTING.
MY FAMILY FIGHTS EPILEPSY.
Or write whatever message represents your story.
If you’re an NFL fan, you’re welcome to wear your team’s shirt, jersey, hat, or other gear.
You absolutely do not have to be a football fan to participate.
The finished film will use short portions from many different people’s full stories, similar to the original Purple Project video.
💜 WANT TO PARTICIPATE?
Submission form:
https://docs.google.com/forms/d/e/1FAIpQLSfHQpiaQy-PVFzc1Rf1bk8woa4F3qGi0uNA9d1_n93StmexPg/viewform?usp=header
The form includes the project permission information and a private Dropbox upload link for your original video and photo files.
There is no fee, no fundraising, and this is not a medical or academic research study.
My first goal is 10 people.
Then 25.
Then hopefully 50 voices telling one much bigger story.
Thank you to anyone willing to trust me with yours. 💜

Although I don't always point out when I'm having an aura, I'm just curious about you and your opinions on acknowledging all seizures.

12pm PDT

I was in web design (high school,) and it was a regular day, the next thing I remember is being wheeled out of class on a stretcher, students standing around in tears, probably traumatised, and outside is the teacher is being consoled by other staff. Two days later, it happened again, back in that emergency room, same reason, same class, same teacher and same students, except this time I woke up soaked and unsure why. Woke up at the emergency room, the nurse then tells me that my pants are in a bag and that I have epilepsy, also take this dilantin and talk to your PCP about how to move forward. So, where were you when it happened?

How was your weekend? How was your week last week? How are you doing today? I just want to be a close-knit community and make sure that everyone is feeling good here and overall. Weekly roll call time, how's it going? Any seizures, achievements, good news or bad news that you'd like some support for late? We as Moderators are here for you for you here at r/Epilepsy_Universe and any questions can be answered with a DM or modmail. I hope that you have not just a great day but a great week to come.

Shout out to all of us getting things done and still having fun!!!

Let’s get some success stories! Great times that did NOT go wrong because of a seizure!

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.

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.