Been to an Epilepsy Monitoring Unit? What’s it like?

Hi @tbrookhouser
I'm so sorry to hear about everything you've been going through since last December. That sounds incredibly difficult!
You mentioned collapsing but staying conscious throughout your entire life. What you're describing sounds like it could be atonic seizures, where someone suddenly loses muscle tone and collapses but doesn't lose consciousness. I'm sharing a link here with more information about this type of seizure:
Atonic Seizures - Epilepsy Foundation
https://www.epilepsy.com/what-is-epilepsy/seizure-types/atonic-seizures
I can relate to the uncertainty of not knowing what's happening to your body. I lived with temporal lobe epilepsy for decades without knowing it. When I was a teenager, I started having a few strange sensations that lasted a couple of seconds. But all my EEGs came back normal, and I lived a pretty healthy life, rarely affected by what I now know were focal seizures. Then in 2017, after a quite stressful period at work, my seizures became more frequent, longer, and intense. It wasn't until 2019, at age 48, that I finally got the correct diagnosis after my first sleep-deprived EEG, which showed some epileptiform waves.
Since when have you been experiencing these collapses? Have they become more frequent and intense throughout the years?
I'm really hoping your upcoming tests give your doctors the clarity they need to help you. Please keep me posted!
Chris

@santosha thank you for sharing your story and am so happy that you have received answers. Two days after the stroke- I was discharged from the hospital and had 2 convulsive seizures with face drooping and impaired speech while staying in my mom’s room (she had been admitted to the heart floor) Rapid response was called and then I was released. 3 weeks after that I had a home 72 EEG which showed abnormal & was told I had seizures without any further testing. Back in November I had multiple MRI and CT- all normal with the exception of 1 dr saying I had lacunar strokes previously and all other dr.s disagreeing. January, I had one seizure from a red light in January and facial dropping on the right side. No episodes until May where I have had multiple tonic clonic and unfortunately my boss calls the EMT’s every single time. Cardiac arrest in June, Status Epilepticus in August, multiple hospital stays. Multiple CT’s, MRI’s , tilt table test, sleep deprived eegs, 20 min eegs, some show epileptic and non epileptic episodes. It has just been frustrating and I don’t feel that I have epilepsy. I am hoping we have answers and a definitive answer and if the seizures are actually brought on by the seizure meds. Thank you for jus letting me vent.

I Am SO Sorry To Hear What You Are Going Through! However, It’s Causing Me To Share What Happened To ME! I Began Having Unannounced GranMal Seizures Back In 2018, Which Was Blamed On An RX My Internal Med DR Placed Me On, Which Was Stopped. I Went Another 8 Months Without Another Until At Work It Happened Again! Unannounced That Lasted 10 Minutes, I Was Taken To UTSW Medical Center In Dallas, TX Who Performed The Electronic Monitoring With Sleep Deprivation, ETC.. And Finally Once I Was Allowed To Lay Back And Close My Eyes I Had One Of Those 10 Minute Long Gran Mal Seizures Which Took A While For Me To Regain Consciousness Afterwards. That Went Before The Board Of Neurology And The Famous Brain Surgeons There Due To The Results, Which Required The Surgical Insertion Of The Electrical Leads Placed Inside My Brain To Determine EXACTLY Where That Seizure Originated! Throughout That Study Is How They Discovered I Had A RARE And FATAL Brain Disorder. The Surgeon Actually Saved My Life In A Miraculous Way, Although I Did Have To Relearn Some Things And Others I Will NEVER Be Able To Do Again, I Am Alive! Without That Life Saving Surgery I Would Have Died Within A Month! SO Get With A Famous Medical Center When It Comes To BRAINS!!!

So brave!!

@tbrookhouser
I'm really hoping you get your answers very soon! 🙌💜
Please keep me posted; I'd love to hear how things go!
Stay strong, and remember you're not alone in this journey.
Chris

Hi @lauragal
You are incredibly brave! What you went through sounds so intense, and I'm so grateful the surgeons at UTSW were able to save your life. It takes real courage to go through brain surgery and then relearn so many things.
Wishing you continued strength💜!
Chris

@santosha Thank YOU So Very Much, Chris! I Deeply Appreciate Your Kindness.. I Definitely Needed To Read This Today! One Of The MOST Painful Side-Effects Of Brain Surgery Has Been The Way People That USED To Be My Close Friends Suddenly Decide To Be SO Cruel To Me… Because I AM NOT THE SAME PERSON I USED TO BE BEFORE THE BRAIN SURGERY…. At Times Like These I Honestly Regret Having Tge Surgery. Believing I Would Have Been Better Dying While I Still Had Kind Friends In My Life.

@tbrookhouser Thank YOU For Your Kind Reply!

@lauragal
I'm so sorry to hear that people who were once good friends became cruel to you. That must hurt so much.
After my epilepsy diagnosis and during periods of poorly controlled seizures, some people distanced themselves from me. I was heartbroken about it at first, but eventually I realized these people weren't really true friends. Today, I'm actually the one who no longer wants to be close to them. Real friends are the ones who accept us just as we are. My epilepsy showed me who my true friends really were.
On the bright side, I've met other wonderful people in my epilepsy journey who know about my condition and have genuine respect for it and for me.
Have you been getting any psychological support to help you through this and other challenges after your surgery and that come with epilepsy? It has helped me tremendously. Don't face this alone!
Please remember that epilepsy does not make us less valuable. On the contrary, it shows the strength and courage we carry inside us.
I'm truly glad my words brought you some comfort, and I hope these do too. 💜
Chris

@santosha YOU Have Been SO Kind! If It Weren’t For The ‘Brain Team’ At UTSW I Don’t Know What I Would Have Done! It’s Strange Living In A Small Town Too Far Away From A City Like Dallas, There Aren’t ANY Support Groups At All!!! Another Shocking Thing I’ve Discovered! Although, Before My Brain Surgery Most Of My Friends Were The Folks I Worked With In Dallas (I Just Didn’t Want To Raise My Kids There) So I Drove 1 1/2 Hours Each Way.. To A Small Town (Move-In Town, That I Learned Is NOT Actually Friendly To Folks That Weren’t FROM Their Town)… Anyway, Just Too Many Shocking REALITY Struggles That I Do Actually Continue To Face Daily. I TRULY HOPE YOU HAVE A HAPPY KIND LIFE AHEAD OF YOU!!!!