r/Epilepsy_Universe

hello all!
i recently got my 48hr eeg results back and my neurologist said and i quote "your eeg is completely normal so all these symptoms must be psychological"- initially i read this and went "???" - we has discussed the possibility of pnes being a possibility however i had expressed that i had a history of seizures as a child and i often have frequent migraines.

i also have been told my an ophthalmologist to get an mri done asap because they suspect idiopathic intracranial hypertension - could this be what caused my seizures to appear again? i have been having them consistently for about a year.

idk - i am so lost and my neurologists informal diagnosis is making me feel crazy!!

Chip woke before sunrise, stretched his arms dramatically toward the ceiling, and declared, “Another beautiful day for justice.”

Beside him, Dalena made a sleepy noise from beneath the blankets.

Chip went on his morning walk through the neighborhood trails, exchanged stern nods with Mr. Crow, and returned home victorious. Breakfast followed shortly after: two berries and half a waffle.

Then everything went wrong. Chip stood from the table and immediately collapsed back into his chair.

“Oh no,” he whispered.

Dalena looked up from her tea. “What?”

Chip slowly turned toward her with the grave expression of a detective who had just discovered a body in a closet.

“My legs,” he croaked. “My back.”

Dalena blinked. “You’re sore?”

“Sore?” Chip gasped. “SORE? Dalena, my muscles feel like they’ve been beaten with a million tiny hammers!”

He attempted to stand again. His leg cramped instantly. Chip grabbed the table dramatically.

“We have a new case,” he whispered.

Dalena sighed the sigh of a woman who loved him very much. “What case?”

Chip narrowed his eyes. “The case? The case of: Why the I hell do I feel this way?”

Thunder would have been nicely dramatic had the weather been more cooperative.

The investigation began immediately. Chip paced the living room with all the dignity he could muster with his lower back locking up every six steps.

Dalena sat on the couch with a notebook.

“Possible causes?” she asked.

“Poison.”

“Chip.”

“Curses.”

“Chip.”

“Advanced bone theft.”

Dalena raised an eyebrow. “Chip.”

Chip shrugged defensively, “Dogs are very good at that!”

Before Dalena could respond, Chip froze. His eyes widened. Slowly, dramatically, he pointed toward the window. There was a cat outside, watching them. The cat lifted one paw.

Chip gasped. “No.”

Dalena squinted. “That’s just Mrs. Harrison’s cat.”

Chip whipped toward her.

“Mrs. Harrison?” he whispered. “You mean…”

Chip paused for dramatic effect, watching the cat blinked slowly. “The Eye Lady.”

Dalena groaned into her notebook.

The Eye Lady was Chip’s greatest rival. She wore enormous glasses, solved crossword puzzles in pen not pencil, and once figured out who stole Dalena’s gardening gloves three days before Chip did the deed. Chip had never recovered.

“The Eye Lady has heard about the case,” he said grimly. “She’s sent her feline operative.”

The cat sneezed against the window.

“Look at those cold eyes,” Chip muttered.

“His name is Muffin.”

“Code names, Dalena. Please keep up.”

By afternoon, the mystery deepened. Chip waddled outside from kitchen holding his arm.

“Dalena.”

She looked up from where she was digging storage holes for winter nuts.

“Yes?”

Chip rolled up his sleeve dramatically. A bruise was forming on his arm. Dalena gasped.

Chip looked vindicated. “A clue!”

“Or you bumped into something.”

“But what if I didn’t?”

Dalena opened her mouth. Then stopped. Her eyes shifted toward the fence line. A bunny sat there motionless, watching them.

Chip followed her gaze. The shovel slipped from Dalena’s hands. Chip clutched his chest.

“A SECOND MINION.”

The bunny twitched its nose.

“The Eye Lady is accelerating her investigation,” Chip hissed.

Dalena whispered, “Do you think she’s close to solving it?”

Chip’s face hardened.

“Not before me.”

The bunny hopped away.

“RUNNING TO REPORT BACK!” Chip shouted after it.

By dinner time, Chip had assembled fourteen theories. None were correct.

Theory seven involved underground goblins. Theory eleven blamed “aggressive weather.”Theory fourteen suggested his skeleton was trying to escape.

Dalena was quietly removing that one from the evidence board when there came a knock at the door.

Chip froze. Another knock. Dalena opened the door. On porch stood The Eye Lady holding a casserole dish. She adjusted her giant glasses.

Chip narrowed his eyes. “You.”

“Hello, Chip.”

“You’ve come to gloat.”

“I’ve come to bring lasagna.”

Chip faltered slightly. “…A likely cover.”

The Eye Lady gave the long suffering sign of someone who had known and been dealing with this lovable idiot for years.

“I heard you weren’t feeling well.”

“A convenient excuse to interrogate me.”

“No,” she said. “I saw you have a seizure this morning.”

Chip blinked.

Dalena straightened immediately. “What?”

The Eye Lady leaned against the doorway.

“You were walking past my house. You collapsed near the mailbox.” Her voice softened. “You were confused afterward, but you insisted you were fine and kept walking home.”

Chip stared at her. “I… did?”

She nodded.

“You probably strained your muscles during it,” Dalena considered. “That would explain the soreness and bruising.”

Chip’s fuzzy ears lowered slightly. “That actually makes sense.”

The Eye Lady continued, “I sent Muffin to your window because I wanted to see if you were okay.”

Chip blinked again. “And the bunny?”

“My daughter’s rabbit got loose.”

A long silence filled the room. Finally Chip crossed his arms.

“…Very clever.”

The Eye Lady stared.

“You nearly solved the case before I did.”

“Chip—”

“But Detective Chip remains undefeated. I suspected a seizure from the get-go!” He declares.

Dalena buried her face in her hands. The Eye Lady laughed despite herself.

“Yeah, Chip, you win this one.”

So I'm at a point in my medication treatment I have seen before. There's been an uptick in seizure activity, and I'm almost on the max dose. The worst part it barely been a year on Xcopri. Probably would have been put on max dose today if not for me saying something. Was this a smart move? idk. Other medication at least took longer before they stopped working.

So, last friday, I started Keppra cause I'm in Perimenopause and my Lamotrigine needs it's best friend to come help it out a bit...

Problem is, is when I take my afternoon pregabalin dose ( you take it 3x a day), I get focal aware clusters until my even meds time. I'm thinking about cutting pregabalin out, since it only helps with my fibromyalgia....but it STOPS severe flair ups.

What do yah'll think? Anyone else ever get a Keppra/ Lyrica reaction? I'll ask my neuro soon, but I bug them so much!

Something really strange has been happening to me lately and I honestly don’t know how to explain it properly.
Over the past few weeks I’ve been having dreams that feel way too real. Not normal dreams. I mean extremely realistic.
The events are connected, the conversations make sense, the people act naturally and everything feels like actual real life.
What’s even weirder is that in many of these dreams I’m a child again, maybe around 7 to 10 years old.
I go to school, I have friends, we joke around, talk normally, walk through streets and places that I’ve never seen before in my life, yet somehow everything feels familiar and real.
The people in these dreams are completely unknown to me.
New faces, new places, new voices. But the level of detail is honestly terrifying sometimes. Sounds, food, emotions, conversations, even the atmosphere feels real, like I’m actually living another life instead of dreaming.
And when I wake up I remember tiny details so clearly that it genuinely messes with my mind for a while.
The feeling is hard to describe. It’s almost like being inside someone else’s body or experiencing another version of reality for a short time.
I know this sounds crazy but I swear the realism of these dreams gives me chills sometimes.
I started searching online and surprisingly found many people describing similar experiences.
Has anyone here experienced something like this before?

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).

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.

I've taken 2 doses so far...2 hours before the rest of my meds...before I take the rest of my meds, I feel..high...like, a good high.

Calm, my body feels no pain...I'm just happy...and smiley...

and nice until I take the rest of my meds, then I get dizzy, and anxiety chest queeze ( nothing no chest streches can't fix).

Anyone else get high off of Keppra?

So, I’m not nervous but the total opposite, I get a rush traveling alone. It’s like they said don’t but it feels good like unexplainable 😂 only thing I kept thinking is to keep my phone in my pocket just in case something happens at least I’ll have a phone in my pocket, but those are just epilepsy thoughts. Didn’t bring weed on the trip, not even a vape pen, sober mission.

I took an 8 month break... EIGHT MONTHS from benzos ( only broken once to try nayzilam)....about a week ago I started feeling "seizurey" so I was prescribed my lovely clonazepam again....

IT DOESN'T WORK ANYMORE...not for sedation and anxiety, at least! How do I know if it works for seizures! The pregabalin that was prescribed AFTER my break started now mixes with the clonazepam to knock me out....but, that's not what I need when I'm flying on a plane in a few weeks!

What do I do?!

My writers group does mini competitions. For bragging rights. Welp! I am bragging! The prompt was "Two people planning their 25th anniversary realize they have different recollections of events in their shared history."

The Anniversary party had been Liz’s idea. Jeff had offered to help and expected to be told she could handle it, but instead, Liz had accepted. So here he was, sitting across from his wife of 25 years and feeling like he had been drafted.

The kitchen table was overloaded with plans. Notebooks, guest lists, song choices, two separate cake catalogues. Liz leaned over one of them with a pen in her hand. She made a huge X over one of the entries.

“We are not having sheet cake.”

“Sheet cake feeds people,” Jeff said as he sifted through endless drafts of seating arrangements.

“Not for our 25th anniversary.”

“Can it at least be chocolate?” Jeff asked hopefully. Liz smiled.

“Yes. It can be chocolate.”

“I was thinking. We should put Rick near the front.”

Liz stopped.

Jeff laughed, “If it wasn’t for that son of a bitch, I never would have met you.”

“Rick didn’t introduce us. We met at a work conference in Cincinnati.”

“We’ve never been to Cincinnati…” Jeff trailed off. He squeezed his eyes closed as he tried to wrangle a long ago memory. There was nothing there. “No. Rick had sent you flying out of his office in a rage and you came straight to me. I remember. I marched right into his office and told him “You treat her right. I’m going to marry that girl one day.””

Liz sighed. “No, love. We were already dating by then. We had that small apartment by the pharmacy.”

“Yeah…” He nodded slowly, “I remember now.”

Jeff had said those words many times over the years. He knew his memory was shot. Seizures did that to the brain. Years of electrical storms had changed the landscape of his mind. He learned to accept Liz’s quiet course-corrections with grace, absorbing her memories into his own.

“It had a blue door that liked to stick when it was humid out.” He was confident.

“It was a yellow door.” She corrected. “You painted it yourself.”

He opened his mouth and stopped. He could have sworn it was blue. He could almost see the door, a faded navy that was almost grey. He had put his key in that door a thousand times.

“I helped you. We got paint on your good shoes.” She said.

Jeff nodded again, a little surer. When Liz described something to him, he could often feel its shape, like residue left on a cleared-out bookshelf. The dust was there, but the book was gone.

Liz got up and went to the living room. She came back with an old album. She flipped back through the photos. “See? Here.”

Jeff peered down at the photo she was pointing at. There they were, standing side by side, young and smiling and squinting in the bright light. Behind them was a yellow door. He studied himself standing beside the woman he loved.

I painted that door. He thought, My hands did that. I was there.

“I remember it as blue.”

“It’s okay. Come on, let’s go to bed.”

But it wasn’t okay. Jeff thought as he followed her back to the bedroom. He nodded absently to things she said as they made their way through their bedtime routine. He looked at her reflection in the mirror and tried to memorize it. Her hair, the laugh lines on her face, the way her eyes sparkled. He knew it was futile; the image would fade like the yellow door did, as Cincinnati did, but he tried all the same.

“Liz.” He said.

“Yes?”

“Do you ever–when we got married–You couldn’t have known it would be like this.”

“Jeff, it’s okay.”

“I need you to know!” Jeff rushed on. “What you’ve been doing. I don’t take it for granted. I want you to know that I don’t.”

“Oh, Jeff. You say this all the time.” She cupped his face in her hands. “You aren’t a burden. I know what’s going through your head right now. You aren’t a burden.”

When she said it, he could believe it. Jeff let her lead him under the covers. He hugged her tight to his chest. 25 years, the past 10 or so with this life-eating disease and she stuck by him. In two weeks almost 100 people would come to celebrate a love story. A love story only one of them remembered.
Jeff took a deep breath, taking in the orangey shampoo Liz loved so much. He held her in the dark and tried to be grateful for the moment. She loved him. She was here with him. That was enough to be grateful for.

When he opened his eyes, it was light. Liz was at the dresser pulling out clothes for the day ahead.

“Good morning.” She said with a smile.

“Morning, sweetie. What’s the plan today?”

“I’m working on our anniversary party.”

“Oh? Do you want help?” It wasn’t a serious offer. Liz could handle things like that easily.

“Sure. That would be nice.”

Workout after seizure. Anyone make it happen? Today was a random focal, few sec episode. Ended up confused for about 30 min after. Started usual stretch about an hr after focal, got an immediate headache, gave up on the routine. Postictal vibe today = ☹️. Usually any exercise results in feeling good. Suggestions for workout after seizure?

I spoke with a very old friend last night and he reminded me of this night which I instantly remembered.

It was March 1968 and my friend and his girlfriend had introduced me to one of her friends. It was going well and our 3rd date was going to be March 14, the day MLK Jr was killed on a terrace in Memphis. I called to cancel the date which is what she was going to do. We decided to put it off for 3 days to try and get over the shock. We, and a great many others, were still in shock and anger. 3 days were not nearly enough to have gotten through it.

We went to Greenwich Village to hear some music, which is where I was regularly. We went to a club that I had gone many times but didn't remember but my friend said it was the generation bar. It was a place where musicians gathered.

That particular night a lot of musicians gathered and performed. B.B. King, Buddy Guy, Joni Mitchell, and two others, Jimi Hendrix and Janice Joplin. What a night that must've been. After speaking with him it sounded somewhat back there in my memory bank, but I trust the person who told me the story because he's as much a music lover and historian as I am.

He insisted, although it's never been confirmed that Janice & Jimi performed together and it was magical.

I had seen both of them, but together had to be quite special.

I know some of the these triggers can be tricky and some may even go unnoticed, but for anyone who's had weather be triggering, please explain.

Never took a rescue med because once I know a seizures are coming, it's too late. Usually I'm alone if someone notices or walks into the area that I'm in their usually not thinking get the meds. Just wanted to know from the people prescribed with rescue meds, does your rescue med seem like it helps with the recuperation time?

That "almost seizure" happened again, but what it is is a sudden rush of the feelings I'd have going into a TC...without going into that TC...it seems to have a post-ictal stage...This is soooooo scarey. 3 facts about me.

-My TCs are the Scariest most painful things your mind can come up with. Like, worst than full body burns...and you feel your bones brake. You pass out a few seconds to feel like a small child with amnesia in the scariest nightmare ever....

no wonder I get suicidal after them ....buuuut I haven't had a TC since 1999...But, I've have "close calls"

- I'm perimenopausal...Lamotrigine HATES hormone changes.

I'm sooooo afraid...my epileptologist is full, my new neuro in AZ is June 11th.

Do any of you have focals like this? Where it hits you like a wave and feels like a on coming TC, but it's not... OR do you think it's a warning of the things to come?

Do you think I should go to an er to get started on keppra? or...just general cause it's new and terrifying (they may just label it a panic attack, though...oh well...a panicky epileptic drug seeking keppra....

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.