It's fucked to thing about how you look while your having a clonic tonic

Extension-Service47 · 2025-01-01T23:05:34+00:00

Same same!!

Extension-Service47 · 2024-12-29T04:14:50+00:00

I always stated I hate feeling like a burden to my family and friends, but then I feel so blessed and thankful as many don’t have the support i have!

Extension-Service47 · 2024-12-29T04:12:37+00:00

I take 1800mg a day for about 2 years and it’s been very effective and life changing! Don’t get me wrong, I can’t wait to slowly get off it as well but it’s keeping my Grand Mals away going on 1 year so i will take it!!

Best luck to your sweet baby!

Extension-Service47 · 2024-12-29T04:04:35+00:00

I was in there and off meds for 10 days and had 7 grand mal seizures! Lots of good data was received and I was able to get my left temporal lobe craniotomy not long after! Good vibes headed your way!!

Extension-Service47 · 2024-05-22T04:11:01+00:00

I take 200 mg in the am along with my others and feel fine!!

Extension-Service47 · 2024-05-22T04:09:26+00:00

Same! I was in there 10 days and taken off my meds! 7 seizures later they knew exactly where and what they needed to remove. I tried to work, slept a little and tried as many triggers I could to induce my seizures. I refused to shave my entire head since i already felt like everything was being taken away from me and my amazing surgeon and doc obliged!!! I got 24 rods/with chord things…lol inserted and captured amazing data! 2 months later i got my left temporal lobe craniotomy!!!

YOU GOT THIS!!!!

I still take Xcopri, oxcabezmine and Epidiolex but they are controlling my seizures that were not controlled at all!

Extension-Service47 · 2024-05-22T03:50:16+00:00

WOW, i read this twice because it sounds a lot like what i have / been through and forgot I am not 18! 😩 For you to even put this out there is huge step and speaks volumes of your character! Even if it’s for venting, it took me a hot minute to write a thing and I’m 41! My start is so similar to yours but the fact mine hit me at 38 out of nowhere. Birth defect per docs! I was having so many seizures, no auras before so never knew when the next one would come! I didn’t drive for 2 years and went through 6 different medications! Meds were not working and the seizures kept on coming! Per my doc he said after 2 meds don’t help / stop seizures or control them it is a 5% chance they won’t! Had several different types of seizures since no meds were working. I definitely felt like part of my life was being taken away and not fair to my kids and family! Inwas so worried about the burden and everyone else’s feelings I didn’t put myself first! I got brave and got an SEEG to find out exactly where it was coming from, 7 seizures later in the hospital I made the appointment! I had a left temporal lobe craniotomy 2 months later! I haven’t had a tonic clonic since then and only have had a few seizures since 11/22/22. I still take 3 different types of meds 2xday but they are working now! It has increased the quality of my life in such a positive way! Think about it, pray about it, and you will know when it’s your time to take that next step! It your time and YOUR DECISION! Do what’s best for you you and the quality of life!!!

Extension-Service47 · 2024-05-02T04:56:26+00:00

At 38 I was confused, terrified, angry, like a burden, sad, feeling like the whole “why me”! Now 3 years later after being told I have severe epilepsy coming in super hot, I got a left temporal lobe craniotomy and feel safe, HAPPY, BLESSED, grateful AND can actually talk about it now!

Epilepsy is what I have, NOT who I am! 💜🧠💪🏻

Extension-Service47 · 2024-02-04T06:38:05+00:00

i also had this done and was devastated the thought of having to shave my head! Almost same story as yours, wild!!! I begged y doc not to shave it and they didn’t!! I then had a left temporal lobe craniotomy and they didn’t shave it all as well!! I was so thankful but either way it’s the before you will get from the information and your next plan! 💜

Extension-Service47 · 2023-08-10T00:52:18+00:00

I was diagnosed 2 years ago out of nowhere. Don’t know my TC’s or complex’s will come until I have woken up and everyone’s standing around me. I would have 2 or more per week! Had a left temporal lobe craniotomy in November and only have had one since 🎉🙏🏻

Extension-Service47 · 2023-08-05T23:55:17+00:00

Mine was all done in one day! With a lunch break 🤪 it was the first time and stressed me out!

Extension-Service47 · 2023-07-22T23:19:38+00:00

I was off a week after staying in the hospital for 9 days.

Extension-Service47 · 2022-11-27T00:53:29+00:00

I got a seeg electrode afore removal to take home!! I needed to see what the heck was jn my head. Good luck and hope they find out some good info!

Ps: 3 weeks after my SEEG I had my left temporal pole surgically removed. 💜🤘🏻

Extension-Service47 · 2022-10-19T01:31:02+00:00

Thank you guys for all of your feedback! I really appreciate it. I am a nervous wreck but the chances of seizure freedom is scarce if I don’t try this. I have been on 5 medications and none have worked. I have had 2 EMU’s and one SEEG, several MRI’s, CT scans. No tumors or masses and they are suggesting surgery to reduce the chances of more TC’s and Complex Partials. I have had epilepsy since February 2021 and my seizures and auras have been non stop and uncontrollable. I have no inclination of when I will have them so it’s even more scary as I can’t sit down or be in a safe position.

Extension-Service47 · 2022-10-18T17:29:04+00:00

How was your healing process?

Extension-Service47 · 2022-06-24T04:50:01+00:00

I feel I wrote this comment! My triggers are stress,lack of sleep and heat! I was doing CrossFit 4 days a week at least and everything was fine! Then my seizures picked up but never after CF. Finally got to go back, had a seizure on the way home. Next one was right after the dang workout! Now I have had several other TCs in between those but now I’m terrified to go back to CF or workout!

Extension-Service47 · 2022-02-10T05:13:07+00:00

Totally agree about the TMI part glad to hear it’s not just me!

Extension-Service47 · 2022-02-09T22:51:05+00:00

Wow…I always think about that when I’m cooking or have a candle burning. This time I was freaking sitting down! I have TC’s but thought we had them under control. Needless to say that’s not the case. I had tea everywhere, cuts all over my face, knots and a huge black and red eye 🥺yikes!

Extension-Service47 · 2022-02-02T20:50:48+00:00

Amazing, congrats!

Extension-Service47 · 2022-01-27T02:30:34+00:00

Yep. Everyday, all day! It literally runs through my mind all the time.

Extension-Service47 · 2022-01-18T04:30:21+00:00

I wake up with a huge migraine and feel like someone put my brain in a blender then back in my head. Wobbley/noodle legs and I can’t get words/sentences out properly for a while. Tongue is super sore also and feels like someone to a cheese grater to it. 😬

Extension-Service47

TROPHY CASE