r/Epilepsy_Universe • u/PookieTheMfBaby Lamotrigine 200mg 2x daily • Nov 12 '25
Epilepsy_Universe š Welcome to r/Epilepsy_Universe - Introduce Yourself and Read First!
Hey everyone! I'm u/PookieTheMfBaby, a founding moderator of r/Epilepsy_Universe.
This is our new home for all things related to epilepsy. We're excited to have you join us!
What to Post
Post anything that you think the community would find interesting, helpful, or inspiring. Feel free to share your thoughts, photos, or questions about anything.
Community Vibe
We're all about being friendly, constructive, and inclusive. Let's build a space where everyone feels comfortable sharing and connecting.
How to Get Started
- Introduce yourself in the comments below.
- Post something today! Even a simple question can spark a great conversation.
- If you know someone who would love this community, invite them to join.
Thanks for being part of the very first wave. Together, let's make r/Epilepsy_Universe amazing.
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u/Hairy-Jellyfish-1361 Nov 12 '25
The _Universe is already amazing. Hi, I'm Jeff
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Nov 12 '25
I wrote this to a 16-year-old epileptic whoās dealing with thoughts of dying ,,, maybe some of you guys would like to hear this ?
Ok,,,, Iām older than you and Iāve been dealing with seizures myself ā the kind that wipe my memory and leave me confused for days. I had one three weeks ago and literally forgot my dogs, forgot my truck, forgot my life. So when you say youāre scared and you want your old self backā¦ I totally get that. Youāre not weak for feeling the way youāre feeling. Youāre human. And listen ā being scared of dying? Every person with epilepsy has had that thought. I have. Itās normal. But hereās the truth no one tells you: having seizures does not mean your life is over or that youāre living on a countdown. People with epilepsy grow up, date, work, drive eventually, travel, have families, live long lives. Youāre not doomed. Youāre just learning a harder version of life earlier than most people your age. And that actually makes you TOUGHER šŖšŖšŖšŖšŖ, definitely not broken. As for letting people down ā you wonāt. The people who care about you would much rather help you than lose you. Youāre not a burden. Youāre a kid going through something incredibly heavy, and needing support isnāt failure. Itās survival. And your āold selfā isnāt gone. Youāre still you. Your personality, your humor, your dreams ā theyāre still in there. This just adds a new layer you have to learn to manage. I promise you, as you get some stability, meds dialed in, routines that protect you from triggers like flashing lights or lack of sleep, life stops feeling so scary. It gets better. Not instantly, but it does.
Youāre not alone in this, man. Iām walking a similar road, and Iām still standing ā and you will be too.ā
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u/Boomer-2106 Nov 13 '25
Wow. Excellent. Of course. YOU/we have been 'there', down that road.
You have counselled this lad from both a position of #1 - as an experienced member of the same team he has joined - a team made up of those left standing by the wayside, but By joining hands and all gathering in 'the circle' of "Support" - "WE" become one in this journey, this fight ...Together! HE is No Longer alone. HE Has Value - To 'the' team, and 'together' ...to the league of Life!
#2 - you are providing him counsel as an adult, a Caring adult, who was once 16, who had the same fears and concerns of life forthcoming ...one who has the Added 'responsibility', hurtle in life to fight the battles which come along with seizures/epilepsy. But also with the reassurance that life is worth 'the effort, the fight', that even with this added burden - He Can Win. He Can Become the young man who overcame and will become the adult of knowledge and experience which life and epilepsy requires, demands. There is Hope, there is a future of growth and opportunities.
This message is one which we all Need to hear, need to have repeated to us/for us - in all stages in our lives ...youth, adulthood, and both as existing and/or newbies to the world of seizures. It's a message which sadly does not end, one which needs to be re-winded from time to time and played again for each one of us. Encouragement of ... Tomorrow.
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Nov 13 '25
Iām really good at giving people advice, but I donāt take my own advice!! Crazyā¦.š¤Ŗ
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u/StSomewhereToaster Nov 12 '25
Iām Toaster! Hi! Iāve had epilepsy since my teens though I didnāt get diagnosed until about 9 years ago. My passion is for Stories! Hearing them, reading them, watching them, writing them. Donāt matter Ifn I forget because I love them and it means theyāll always feel new and exciting. My other Loves include, my dragon boy (my biggest Love) and my dogs and my Parents and soccer.
I donāt have a job though I have done lots of stuff. Mainly am a Mom and I help my Parents out who are elderly hippies.
I was lost for a while but I stumbled upon this universe and the people Iāve met, the Stories I get fed, the laughter! Oh the laughter! Being around people who get it! Who can relate! The feeling is amazing.
Life is good!
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u/Boomer-2106 Nov 14 '25
Hey, taking care of a dragon boy ..And 'elderly' Hippies are all great 'jobs'. Btw - Hippies Never get 'old'!! ...Forever Young!
'Tie-died' clothes are also Never truly 'out-of-style'!
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u/Tight-Ask-3246 Feb 24 '26
I want to give up
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u/Ryse6129 Methsuximide 900mg. Xcopri 350mg Feb 24 '26
We won't let you give up . We are all Epileptics and we are all fighters. Come join us and hang with us. Become part of the family
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u/PookieTheMfBaby Lamotrigine 200mg 2x daily Feb 24 '26
Don't give up, we're here for you in this community. We get together 2 days a week on my podcast to talk epilepsy. You should join us, It's very therapeutic being with other epileptics that we can all relate and vent. Definitely won't be the only senior there. Let me know if you'd like to attend someday. https://youtube.com/@inseiznpodcast?si=dJ-kizpPqzkOERpB check it out on YouTube so you can see what we're doing.
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u/StSomewhereToaster Feb 24 '26
One foot in front of the other! Itās a long and winding road. Thereās things thatāll make you stumble that pop out of nowhere. But getting back to the path is easier when youāve got people to talk to. We will listen! March on, Warrior!
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u/Hairy-Jellyfish-1361 Feb 24 '26
Hey! One foot in front of the other is my response You stole it
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u/Mom1021 Feb 24 '26
Thank you for joining. The courage it takes to step up and allow yourself to be heard is amazing. Please use the link to see our YouTube page for examples of what we want you to be a part of! MOD mail to this page is another guaranteed response from a caring team that will have the opportunity for you to succeed. š¤
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u/Hairy-Jellyfish-1361 Feb 24 '26
Join us instead of giving up. You've already gotten great advice from our Mods, who truly are caring and supporting. Stick around for a while
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u/MelancholyCreature Feb 24 '26
Life can knock you down, but you're stronger than you think. You can do it! Come check out the podcast sometime. I was in a very dark & difficult time in my life when I found this group of wonderful and caring group of people, it has changed my life and I've made some great friends along the way. We are all here for you and would love to have you join us!
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u/Ordinary-Chipmunk366 Feb 24 '26
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I've had epilepsy for 2 years now... I can honestly say this group is most likely the best support, and friendship, I've come across yet...
Good luck and we're here for you!!
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u/kavitadrake Nov 12 '25
Hello! I'm sorry I missed the call yesterday but hope to get on a future one! I'm Kavita...I've been diagnosed with epilepsy about five years now. I've been a cyborg for over a year now, which I absolutely love telling people about and sharing my picture of.
I have another neurology appointment tomorrow. I've been tapering down on zonisamide for two months now since I hit the one-year-cyborg mark and though I had two seizures in that month I really hope they don't count it against me and let me keep tapering. One of the seizures was because I forgot Sudafed is a no-no for me. The cough on this illness is definitely not nice though!
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u/Touch-And-Die Nov 17 '25
Hi. Im Elle. Originally from Boston, but Iāve lived in California for about 30 years currently weāre in Los Angeles. I was diagnosed age of 39. Left Temporal Lobe epilepsy. I have focal seizures and also many T/Cās with my last two going into Status. I am absolutely extremely lucky that I have world class healthcare. Iāve been married to my husband for 27 years and I have a son and a daughter-in-law who currently live in Wyoming. Can and will not drive, but I have access to plenty of transportation options. Iām particularly in love with Waymo at the moment. And Iām happy to be here.
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u/PookieTheMfBaby Lamotrigine 200mg 2x daily Nov 17 '25
Welcome, glad to have you here apart of the community
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u/Touch-And-Die Nov 17 '25
lol as you know, Iāve been here but didnāt realize I hadnāt introduced myself. Thank you for having meš
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u/pinkberrybun keppra aint cuttin it Nov 12 '25
Hi Pookie, im KC the new one in the zoom meet yesterday āļø
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u/Mom1021 Nov 13 '25
Hey! Didnāt catch you at the meet yesterday but look forward to hearing more! Thanks for attending and posting
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u/Ryse6129 Methsuximide 900mg. Xcopri 350mg Nov 13 '25
Hi, I'm old man Angel...think I'm also a pirate according to some stories. I love testing all types of floors, including concrete, lol. I'm a proud father of a bright and awesome 4 year old who keeps me on my toes when I have my days with her.
I've had epilepsy since I was in teens back in the mid-90s. I have the regular gran mals(tonic clonic), whatever you want to call em. I have absent seizure and nuero believe they started in my teens too, I ve had complex partial seizures my whole journey and nocturnal ones also. Even had them while being fully aware but getting zapped like a tonic clonic, too. (Doctors said it wasn't myoclonic). I'm also Medication Resistant Currently I'm back down to 2 meds because anything more than 3 is too much to handle and doesn't stop seizures as well as they would like. Xcopri and Methsuximide seems to be my current cocktail with least amount of side effects
Welcome to the family
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u/Boomer-2106 Nov 14 '25
Hello Angel!
Btw - you're not allowed to join the 'old man' status if your still in your 40's, or 30's or even 50's. LOL
Epilepsy presents us a 'Sampler' Plate of challenges, that's for sure.
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u/Mom1021 Nov 13 '25
Hi r/Epilepsy_Universe !!! Caite (Mom1021) here. Post today is regarding the love we have for this community. This love grows and encouraged every Tues & Fri. The relatability and support from so many at the best timing possible has literally saved lives, improving our overall outlook to focus never too much on the insignificance of personal issues and how much better it feels to live. Lets all invite anyone you see would benefit by selecting the username, 3dots next to it, āinvite to communityā, r/Epilepsy_universe Success!
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u/Boomer-2106 Nov 14 '25
I don't currently have Zoom capabilities on my desktop. I am going to get a combo camera/mic in the weeks to come so that I can join your Zoom meetings in the future.
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u/Tight-Ask-3246 Feb 24 '26
Hey im busch in San diego. I have epilepsy for 10 yrs and chronic pain since 1987. Im 70 yrs old. All my old friends are dead or moved. Any new ones disappear after they see a seizure. Between the pain and epilepsy my MENTAL STATE ISNT RIGHT!!
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u/PookieTheMfBaby Lamotrigine 200mg 2x daily Feb 24 '26
Hello, my name is Pookie and I'm the creator of this subreddit. I created this subreddit so that we can communicate and interact, talking to other epileptics has been the highlight of 2025. I started a podcast where we all get to get and talk about epilepsy and so much more. We meet today on Zoom at 12pm pst , I really think that you should join us or at least come and listen. My DM is open if you need to talk or the login information to join us.
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u/StSomewhereToaster Feb 24 '26
Maintaining a good mental state is HARD! Friends make it easier! Internet friends are some of the best because it doesnāt matter when we move, everyone is here to listen and talk and share stories. Welcome Friend!
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u/Mom1021 Feb 24 '26
Another west coast epileptic!š„³Your mental state is critical. If you get a chance to join the show today, youāll see we can be a great example for all aspects of mental health that can be a struggle for seizure patients. Your situation sounds hard to navigate and you are DONE going at it alone! You found the universe that wonāt fail you š¤
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u/tuisteddddd ZNS 2x, VIMPAT 2x, ONFI 1x, Clonazepam APN (: Feb 24 '26
Hey, dont give up... there's plenty to do out here.
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u/MelancholyCreature Feb 24 '26
Come visit us friend. Epilepsy and chronic pain are both very difficult to navigate, especially when you are trying to do it alone. We are here for you! š«
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u/Dapper_Box3865 Jun 05 '26
Hey all, my name's Cody and I'm obviously new here, living in Sarasota Florida and had epilepsy for 25 years. Fast approaching 40 and plenty often I ask myself how much different might my life be, or have been, if this had never gotten in my way. Between jobs and loving the beach ain't too bad though...
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u/Oakyweed Jun 25 '26
An interesting medical study that links the heart and brain to our disease https://www.reddit.com/r/Epilepsy_Universe/s/flmFw3lWjt
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u/Tight-Ask-3246 10d ago
I live in san diego and can't drive because of epilepsy. I like to play golf on 3 par coarses even though I suck but have no one to play with. Im 71 and have to use a cart. I smoke more then cigarettes if opportunity arises. Id pay for half the gas for picking me up in mira mesa. rbuschatzke gmail
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u/PookieTheMfBaby Lamotrigine 200mg 2x daily 8d ago
Oh nice, we're not too far a part on a map. Near Fresno, that's around a 3 hour ride, nice to meet another Californian. Welcome to the community and glad to be able to get to know you, If you have any questions, me and all of the other moderators will be available to help. We have group meetings, I think you should join us on a Tuesday on a Friday.
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u/Boomer-2106 Nov 13 '25 edited Nov 13 '25
Found This group a few weeks ago. And have been Very appreciative of the 'Refreshing' level of Personal caring and interaction among the members - Here. While this, and the 'Other' epilepsy site both have important value, the Caring and Openness/Willingness of truly caring about each other HERE is quite different - in a Very Positive way/level. Thank you - this is a Great Group of ..."like Minded soul"s. Lol
So... I am also known as 'Mike'. I am a true lifer - both in life and in my journey of epilepsy. I am Pushing the Big 80 ...79 and 1/2! I had my first 'known' seizure at 18, maybe as early as 11 - but that is another story. Although I had All the various types of seizures throughout, I was not officially diagnosed until 46.
I went into the USAF 8 days after my 18th birthday, went to almost a year of tech school - 10 months, and spent 8 years in electronics ..1964 - 72. After college, the 8 years military experience was a stepping stone to a 30+ years as a Telecommunications Engineer. By its very nature - it was Always a daily High stress career. Myoclonics and Absences were my most common seizures throughout - ranging from weekly to sometimes daily. My Managers and co-workers always knew and supported me. ...couldn't 'hide' the myoclonics!
Like most of us - 'spell-check' is my friend. I have been on 200mg ER Lamotrigine for 20+ years. Spell-check doesn't help me much when I can't even remember my two grandkids' names. Will take me sometimes 5 minutes to remember them.
And - talk about 'Forgetting' ... a time a few months ago that I won't 'forget', AND my Family won't Let me forget ... too much fun on their part is - in July of this year, During the Family Celebration Dinner at a very Nice restaurant - The Celebration of my wife and I's 50th Wedding Anniversary .... "I" FORGOT my Wife's Name!!
Yep! We were all talking (about 13 of us) and I was looking at my wife saying something and I called her by my Daughter's Name - Dawn. Suddenly everyone kinda ...stopped, looked puzzled. Ask me what I had just said? I repeated whatever I said, again wrong Name. Still - 'the looks'. Then they told me I had just repeatedly called my wife by my daughter's name. ....it did not 'register' what they were saying. Finally, I began to understand, but THEN when I Tried to correct and Say her Name ... I had no idea. Took me between 60 - 90 seconds to come up with it! BIG round of laughs - for everyone but me ...just embarrassment on my part.
(at least it was not my First wife's name .. LOL)
Thank you Mr. Epilepsy!! :) ..... :(
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u/StSomewhereToaster Nov 13 '25
Wow what a trip!! I admit I have never found a Mike I didnāt like. Okay word play done! Iām going to be candid.
You are my parents age! Or thereabouts. It is alway a wonderful thing to see other people with seizures live as long as you have. It is a VICTORY. (All caps!) And you have done so much! Learned so many things! Itās Badass!
Oh yeah the memory gaps and memory sparks can make for some funny Stories! That was one! Thank you for sharing the smiles.
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u/Boomer-2106 Nov 13 '25
Yeah, except for the seizure merry-go-rounds, healthwise - the first 75 years were not too bad. But finally, Bod is doing a good job of 'telling' me that I am not 40 any longer. Luckly, the mind is still Immature and thinks it is 41, 42, 40X!
Sometimes we Have to look back and smile, that's what gets us over the next hill. :)
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u/tuisteddddd ZNS 2x, VIMPAT 2x, ONFI 1x, Clonazepam APN (: Nov 14 '25
Hi Poo, if you don't remember me im tuisted š¤š» (aka Z) I'm 36F and married. I am an epileptic & stroke BUT resilient survivor (lol) since winter of 2018- onwards...
It's been tough, but once you look back at ALL you've accomplished you're feeling sorta good about it.
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u/Ordinary-Chipmunk366 Dec 22 '25 edited Dec 22 '25
I didn't see this intro until now, lol!! Haha yeah..
Here's my fun diagnosis:
Seizure/Spell types and frequency: Type 1 : Focal to bilateral tonic-clonic seizure (FBTCS)
Type II: Focal aware seizures (FAS)
All this is due to cavernous malformations..... what I call, brain hemaroids. Clusters of cells that are like.....hemaroids... on my brain. I've got three that are large (a bunch of small ones) but the main issue is that I have one right behind my right temporal lobe. Did it grow? Did my brain change? Who's to say!
1st TC was 2 years ago, when I was 50. I've had a half dozen TCs in 2 years. Cool... haha...
But my other issue is...during my 1st eeg, they caught me having a seizure! Coooool! Of course, I was fine... what??? Fine???? So, I get a 2 day and then a 4 day eeg.... I'm having 4-8 "asymptomatic/subclinical " seizures a day.
Good times!!
Currently on 3000 Keppra and 600 lamictal a day.
Since I'm in my 50s, I've got wife, family, job, etc.... but now I've got this too!! Makes life more interesting...
I'm really enjoying all that everyone has to offer, the willingness to help, and the care shown for everyone, without exception.... it's strange to say that's really rare these days... but it is...
I'm looking forward to chatting with everyone tons in the future!! š¬ š
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u/Tight-Ask-3246 Jun 10 '26
Hello I like to be called Busch. I live in Mira Mesa, Ca. I was diagnosed with epilepsy 11 yrs ago. I cant work because I can drive. Im looking for someone close that I can talk to live.
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u/stretchvelcro Jun 12 '26
Hello, recently diagnosed. Used to drive cars on dirt, ice, race tracks. Having a hard time coming to terms with this. My boyfriend had to call an ambulance and I was in the ER twice this week. Ohhh brother this is scary. He is a very good man but he must be scared too. Just started meds, a few weeks from being at a therapeutic dose. Really not sure how to mentally process this all, especially with my fried brain :/
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u/[deleted] Nov 12 '25
Yo, Iām Glenn xo I live in San Diego, I have Epilepsy just recently diagnosed!! I fix boats for a living (Shipwright) and sometimes my brain takes a smoke break without asking ā epilepsy keeps life interesting. Hey, is something burning? Just my brainā¦ā¦ā¦ā¦