See Alike in...

Alike App

Browser

SeizingSuccotash

607d

Hi y’all, I’ve had a wild ride with my seizures that first began in 2015, after I got Lyme disease. And exciting new developments are underway!!! After having negative experiences with my first few doctors, I stopped seeing one entirely and my seizures had stabilized to once a month. When they picked back up again in October 2020, I finally decided to see a new doc that actually helped me this time! I was out on keppra which stopped all my convulsive seizures and improved my memory! But I was still left with extreme aphasia, happening daily. I’ve tried 8 medicines since, none helping in the slightest, BUT NOW…. I’m working on getting surgery! My doctor has suggested taking steps forward towards a Deep Brain Stimulator and I would love to talk with people having similar experiences. If anyone has been down this road please message me! Hope you’ve smiles today :-)

Top reply
    • JuliusSeizure

      575d

      Levetiracetam/Keppra has helped me a lot too. Glad to see it’s at least helping, and I’ll pray that the surgery helps! Just FYI, I’d suggest that you try seeing an epileptologist if you aren’t already. They’re generally better than a regular neurologist since they specialize in seizures.

    • JuliusSeizure

      575d

      Levetiracetam/Keppra has helped me a lot too. Glad to see it’s at least helping, and I’ll pray that the surgery helps! Just FYI, I’d suggest that you try seeing an epileptologist if you aren’t already. They’re generally better than a regular neurologist since they specialize in seizures.

    • Felix69

      584d

      💕

    • SeizingSuccotash

      598d

      Hi kaitikins! They originally suggested removing a part of my temporal lobe, but they did some testing and it looks like the genetic basis of my seizure would just allow a new seizure network to form elsewhere. I know the stimulator will be much more invasive tho, and from what I’m seeing on here it’s not too common for people to proceed with getting one. I wanna get the inside scoop! ESP if someone experiences aphasia - my worse part to my seizures. Ive had such a hard time getting thru school with my aphasia and seizures in general. And just taking care of myself! It’s scary thinking I’ll have to do it largely alone, and if I can get them under control with this device it seems my life could be much easier. I’ve tried onfi, lamictal, and topamax, along with 5 other medications and have had no luck, or pretty yucky allergic reactions with them. (Except keppra!!!) I’m sorry your experience with surgery hasn’t been helpful. I hope you find something that works! I appreciating you responding :-)

    • Kaitikins

      599d

      Hey. I had brain surgery 4 years ago, and honestly, it didn't help. It wasn't a stimulator though. They removed parts of my brain that were supposedly causing the most trouble. All it did was ruin my left peripheral vision. He asked, lately, if I was interested in a stimulator. I don't want to go through another surgery again though.

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

Thank you! Your submission has been received!
Oops! Something went wrong while submitting the form.

Want to chat or share? Download the Alike app now and get complete access to Alike.health's unique features.

Find people who are
experiencing a similar
medical reality

100% Free
100%
Free

Download Alike for the full experience

JOIN

View All

Bupropion

night sweats

paranoid

Valium

sertraline

palpitations

Anxiety (Including GAD)

Depression

palpitations

Depression

Valium

Bupropion