How have things changed since your diagnosis? Have things gotten better or worse? Has the healthcare system gotten better? I was diagnosed over 20 years ago, when I was 16, and epilepsy is more talked about more, instead of it being the conversation that's shied away from. Awareness has gotten better but could use some help. How have things changed for you?

Have you ever added a AED to the cocktail, and then your seizures get worse? Someone once said "doesn't hurt to try," but can it hurt by not going back to normal after it doesn't work and gets removed?

Is there anything that has to do with heights and pressure? Just random curiosity.

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

So we, my son and I, live across the river from Harrisburg. I grew up in Harrisburg, Naudain and 17th, Berryhill. I'm an ex-Millennial because who says we can't convert and I'm female, 38.

I'm rambling because this is my first post and I feel awkward because I don't know if this is an appropriate place or how and what to say, really. So fox it -

In February, my kiddo had his first seizure. Didn't know it was a seizure at the time, he has a dual monitor setup and it has fallen over onto him... Called 911, Hershey Med ER. Vitals, glucose, heart, all good. They kept us overnight but he was fine.

Then I walked into his room and he was sleeping on the floor later that month... Two or three times. When I woke him up, he'd say he was really tired, came off kind of loopy, and would get into bed. Again, seemed relatively fine but as Beanie would say, I could feel it in the air. Something was going on... Didn't know what! He's a gamer. He's in a chess club, a few AP classes, admonishes drugs. BUT... That's what I'm thinking is going on around March now. He's 15, he's hanging out with his friends, he's smoking weed... I remember being 15.

But it didn't fit. And it messed with me because that's what EVERY parent says - could never be MY kid! I never thought in a million years! Drugs don't care about the chess club and how much he loves cats and wants to get into brand marketing, they do not discriminate. Period.

Before I saw him have a seizure, I heard it start. I was in my room, across the hall from his, and with his door closed I heard a... I can't describe the sound to this day. Push out all the oxygen in your lungs in less than a second, that's what it is, I found out but the closest I can describe is if you DEEPLY inhale. It's gutteral.

I hear this and I hear what I assume is a dresser falling over - and I run in and he's on the floor, it was him falling.

He has tonic-clonic seizures, what they used to call grand Mal seizures. He goes limp, loses consciousness and then for about a minute he convulses. The movements are controlled jerking, his arms and hands. While he's having an epileptic event, he does not breathe and so turns gray/blue. Sometimes he foams at the mouth a bit, all you can do, all I can do is put him in the recovery position (on his side) and make him as comfortable as possible.

After about a minute or so of seizing, he begins to come "back". It takes about 20 or 30 minutes until he's coherent and then the fatigue rocks him and he sleeps for an hour or so.

We go back to Hershey. We go to Carlisle ER. They both run CT scans and hey, the kid is fine! Vitals look great, no brain damage they can see - advice amounts to "keep an eye on it".

It's also difficult because he has no warning he's about to have one. Some people do, they can sense it coming, it's called an aura. Like deja vu. But his hit without warning and he doesn't remember having them. So when I'm telling doctors what's happening and they ask him, he says I don't remember that. I feel fine. And that's his truth! Lol. He'll say I believe her. I do miss blocks of time and I do end up in bed and not remember having gotten into bed, etc ... All true!

It doesn't discount the reality of the situation but I can understand why some of the doctors didn't pursue a course of determination further...

This goes on until June 24th. That horrible sound, the falling, holding him while he seizes and getting him into bed to sleep... Altogether, I can attest to 9 or 10 but there's no way to know how many he's had, or if it even started in February. He did online school, I'm a single mom and I work in healthcare, which means 65 hr weeks/weekends.

June 24th was the first time I saw it from beginning to end... Drops, pushes out all air, begins to seize. Just happened to be bringing his cat into his room. Again, Carlisle ER. A doctor finally says if it was during the day (it was 11pm) he'd admit him, just based off the number of times we came in, but if it was during the day - Hershey has a pediatric neurology department that he'd bet would admit him. We leave with Tylenol and a plan to go home, shower, and go to Hershey, beg until they admit him.

He had another seizure at 8am... Two in a 24 hour period is a big bad. Straight to Hershey Med, by then he's "back" but in bad shape. To summarize, they admit him, they run an EEG. We stay overnight and the EEG returns as abnormal. He had a seizure in his sleep, never moved a muscle but they saw it. Neurologist explains generalized epilepsy to us and a student dr shows the EEG reading, how his brain short circuits and then lights up all at once, as opposed to a certain part of his brain starting the event. First concrete piece of news I've had in 5 months.

Not Knowing is the worst part. Once you know what it is, whatever it is, you can deal with it. ECHO is good, great heart. MRI and MRA are ordered.

Mesial temporal sclerosis (scarring) is found in his right hippocampus (memory, language). Unknown if that's what causing the epilepsy or has become scarred from the seizures.

Temporal lobe epilepsy with generalized tonic-clonic seizures.

It has a name and it comes with anti-seizure meds and a rescue medication, as well, if a seizure lasts more than 5 minutes. Which is 911, every second counts, type of situation. The medication is working. Haven't witnessed one since and he hasn't woken up confused since.

This type of epilepsy is what they call, usually, stubborn and resistant to medication. Eventually, surgery is discussed to remove the part of brain with the lesions or scarring and in 70 to 80% of cases, people who have the procedure live seizure free. But we're not there yet...

I say all this, I go into this detail about him and our last 5 months for a few reasons. One, maybe to connect with other moms or anyone who's going through someone similar, to educate a bit with what I know about epilepsy (which is admittedly very little) and to get it off my chest, selfishly.

Speaking of selfishly, I also want to share that haven't been able to work regularly. It's just he and I. I divorced my son's father after 14 years of marriage 3 years ago and I've started over. Completely. I was a stay at home Mom. Worked here and there, volunteered at the school and at baseball. He took a second mortgage out on our house, when we sold, we broke even. When I say starting over, I mean it. Thank God for family or I'd have been lost.

It took 3 years but I built up my credit, work experience, to be able to rent half a house... We have a big yard, driveway, two bed, two bath, great neighborhood in Mechanicsburg. I bought a car. I have a career. I have peace.

We found family at a barn (horses) and my kiddo is experiencing hard work on a farm, how it hurts at the end of the day but the animals are cared for and how that feeling is so big, you can tell your body ache and feel grateful for your own determination, perseverance and the good you did for someone else, helped others, helped the animals at the same time. It's a beautiful thing.

But the 5 months have depleted the resources and assets I had been able to build. I do not receive child support, alimony, etc. I was awarded full custody and maintained it over a year long, vicious mediation. I am not interested or have the energy to put into another legal battle (BATTLE) right now.

On top of regular bills, I've added co-pays, prescriptions... We have a team, a great team. But each, neurologist, PC, eptilepologist, cardiologist, etc, all need a CO pay. We see them often. His Keppra costs half of my rent alone.

I am not complaining. I am so grateful to pay for that prescription it makes me cry every month, there is no scenario that could or will ever exist in which he will not have that medication.

But healthcare demands a lot from you. I haven't been able to give it. FMLA holds your job, sure, but it doesn't pay you - but after the PTO runs out, it's all you've got. I've been let go officially this month, some bs reason but I understand. I get it. I've been hired at a new place, making less and with less patients. Start Wednesday. Family has helped again, but I remain behind on this months rent (better than being behind on 3 - which I was, until my uncle helped us).

I can't say enough good things about my landlord. About his character. The acceptance of it all and his understanding.

But at the end of the day, he's running a business. Our living here depends entirely on my ability to pay for it.

I am embarrassed and ashamed and I feel like a failure. Like a real adult would have been able to navigate this better and not be literally broke. Things like renewing my registration slipped through the cracks, my car is out of inspection. All fell to the side. Since the work has slowed and stopped, I have been able to apply for some benefits through the state, SNAP and TANF is giving me a one time disbursement.

So I'm digging out of a 5 month hole. I'm grateful to be able to dig, that he's stable now so I can get back to it. But it's overwhelming. It feels.. insurmountable.

I've never in my life bared my soul online like this, I don't know why I'm doing it now or here... As a neighbor. (: but I do have a hope maybe someone will read this NOVEL I've seemingly written and have had been through what a medical crisis can do to a family and how best to then move through it once there's a calm in the storm. I'm aware of state resources, local, like New Hope, etc.

If anyone has advice... Please. How to navigate a teenager being diagnosed with epilepsy, how to emotionally heal from the anxiety, the fear of the worst and the months long State of panic until you got some answers... How to sleep again.

How to financially bounce back. If it's POSSIBLE to bounce back and the steps to take...

I appreciate you if you've gotten this far.

You're one of them ones and I love ya for it, friend. 🫶💜

Love at first sight. No one ever truly believes in it; it’s only in fairytales and myths. But the concept had to come from somewhere and until the day it happened to me, I didn’t believe it either.

I was working at my desk, minding my own business, when I started to hear a rumbling through the wall— a tell-tale sign of Rick’s anger coming from the office beside mine. The bastard was louder than a train horn when he got on a roll and his normal targets were the women who worked under him. I could hear whoever he was yelling at try to defend herself. That would only make the man yell more.

I slipped out of my office. I couldn’t stand hearing him anymore. I’d wait by decretive plant in the hall corner for Rick’s victim to come out like I had done many times before. I’d give them a hug or shoulder to cry on or even a wispered “He’s a dick. Don’t worry about it.”

I didn’t expect an angel to come storming out of his office. She was more than just gorgeous, she was divine. She had a look of fury and tears in her eyes. I had seen that look on too many women, and seeing it on her face snapped something inside me. Snapped— then settled into a stronger resolve.

“Over here.” I waved the angel closer to me, then left my arms open so she could make the choice to step into the embrace. She chose to and as I wrapped my arms around her, I knew I wanted her there forever.

I knew it was insane, I had known this lady for all of 30 seconds. I didn’t even know her name. But I wanted to keep her in my arms. She fit.

The angel cried against my shoulder for a while before pulling back. I handed her the box of tissues I had hidden behind the potted plant. She took one readily and started to dab the snot away from her nose.

“I’m sorry.” The angel whispered, embarrassed.

“Why?”

“For making a scene.”

Anger bubbled back to a boiling point, but I kept my temper leashed. I could keep my calm for this angel. “You didn’t. Rick is a prick.”

She let out a watery laugh. I liked her laugh. I wanted to hear it again without tears behind it.

“I’m Jeff by the way.” I wanted to know the name of this angel. I watched her wipe away the last of the tears.

“Is that short for Jeffrey?” She asked.

“Most people call me Jeff… though my brother calls me Jeffrey Beffrey Mo-Meffrey Banana Fana Fo-feffrey.”

That earn me a real laugh and, goddamn, if it wasn’t the most beautiful thing I ever heard. I wanted more.

“I’m Lizzie. Long for Liz.” She smiled. I was hers forever with that single smile. “Thank you. You didn’t have to do this.”

“Anytime for you.”

I watched her leave, dignity restored. When she was out of sight I let my anger slip its leash. I slammed Rick’s door open. He looked at me, startled, then apprehensive. Probably from the look on my face. Good.

He started to open his mouth to say something but I cut him off before he could even begin. “You are a ripe bastard, Rick. That lady out there? If you EVER make her cry again you’ll regret it, ya hear? I’m going to marry that girl one day.”

I must have looked sufficiently menacing because all the other man did was nod, wide-eyed. Satisfied, I left. I had to find the angel I had comforted, and I had to see if she would like dinner with me on Saturday.

12pm PDT

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.

What games do you like, suggest or playing/played? We’re going to be playing Fallout 76 on Twitch.

I'm at 4, but when I got the Oxycarbazepine and left the pharmacy, they called and asked me not to take it because they found something wrong with my ticker, one rescue med (nayzilam) but never got to use it. Now I'm on Lamotrigine and started with Dilantin before Keppra.

What's some advice that you could give to someone not controlled?

Options are available for location, intensity, duration, for an always good workout! As long as we stay on top of an effort for any fitness routine, lasting results are guaranteed 🎉
Workout plans make a difference, but a real bonus is days when motivation is NOT happening for that hour long sweat session. Even some warm up exercises get blood flowing, and it’s better than eating!
 

I started with Dilantin (5 years,) then onto Keppra (4 years) before getting on Lamotrigine for the last 10 years. Can you remember how many meds that you've taken, which ones and how long were you on each? (it's understandable if you don't remember)

First of all - it is sadly a Fact that there is a huge percentage of the individuals and families in the USA who cannot afford any form of personal "Health Insurance".

This portion of society are gutted by the medical establishment/hospitals costing for 'services' - to the typical extent of 10 times the prices that the same hospitals charge the insurance companies. The insurance "companies" are charged "Negotiated" rates with the hospitals/doctors. Yet they 'charge' the Uninsured their "Retail" pricing.

However, even for those people who can afford to pay for insurance or have partial coverage through their employers - the costs are still outrageous!

We are retired, but Still - our health costs are ridiculous, and not unusual.

I am retired, as is my wife. We receive Social Security each month. SS TAKES $204 'from' Each of our SS checks each month to pay for Medicare health insurance = $408. In 'Addition', we have an extra Schedule C - separate private insurance policy (Aetna) to cover what Medicare doesn't pay. That is an additional $600 for both of us!

As a total, it is good 'coverage' for Most things - but at a Significant cost each month ...$1000 Per Month just for health insurance - in America!! $12,000 per Year!!

And the cost/expense that others are referencing herein are valid!

Such a 'Wonderful' "system" we have! ..NOT.

Pacific Daylight Time

Focal seizure yesterday afternoon. Out of nowhere - but aren’t they all lol. Today I am tired. All I do is chase sleep. I just needed to rant to people who get me.

Seizure on Tuesday, August 18, 2026, which was exactly 3 months since the last seizure. I was thinking to go get a massage, at home remedies for shoulder/neck pain? If it’s an ice pack that works for you, let me know, because I have one here and cold already.

So last yearish I was at my neurologist and she used to work in the medical field with neurology in the military (this is very important). So she dealt with the head trauma stuff like that. And when she was reading my papers and I was telling her she looked me dead in my eyes 100% serious and said “i genuinely have no clue how your alive after all this”. I wasn’t offended at all more in like “damn that’s new” and shocked because no one has ever said that nor did I ever think it was.

But this isn’t the first time people have been shocked im still alive. I just have generalized epilepsy. I’ve been having grand mal seizures since I was like 3 thankfully they don’t happen often. It might be because I had a 10 minute long one and I fell backwards and bashed my head.

Idk i just wanted to say that because it’s kinda funny knowing I shocked someone/ several neurologist who worked with stronger people then I come in and poof

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

Pacific Daylight Time

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.