Living with epilepsy - Introduce yourself & meet others

@debvat
Hi Deb,
First I’d like to welcome you to Connect.
Can you explain more about your symptoms?
Do you lose consciousness?
Do you know what type seizures you have? Is the Keppra stopping them?
Do you know your specific diagnosis? What dose of Keppra are you on?
Health and happiness,
Jake

@debvat
Hi again,
Wanted to let you know if you begin on a generic Anticonvulsant don’t switch to brand and vice versa. Also ALWAYS make sure your future refills are from the same manufacturer. Subtle differences in ingredients can make a big difference in the effectiveness of seizure control.
Hope alls well,
Jake

Hi Jake, I am very new to all this but not new to medical issues. I have short staring episodes and I do not loose consciousness. I sweat and shake and do not remember things I was doing. I haven't been diagnosed with seizures. I am being treated for migraines and the staring episodes became a lot worse. I am on 500mg bid of Levetiracetam. Thanks for the tip about manufacturers. Deb in Illinois near the Iowa border. Freezing here!

Hi, @debvat. I'd also like to welcome you to Mayo Clinic Connect. I wanted to mention that if you'd like to discuss migraines with others, you may wish to check out these discussions

- https://connect.mayoclinic.org/discussion/how-do-you-get-relief-from-frequent-migraines

- https://connect.mayoclinic.org/discussion/silent-migraines

How is the levetiracetam working for you with the seizure-like symptoms? You mentioned not being diagnosed with seizures. Was a diagnosis given for the episodes you described?

This is my first time here in the group and I’m happy I was able to join. I’ve had epilepsy since the age of 17 and being part of support groups such as this has been very important to me. I have two of my own epilepsy support groups on Facebook and I’m also part of a another group as well. I really look forward to sharing my own experiences with epilepsy and seizures here as well.

Hello and boy do I need advice I have phenobarbital controlled epilepsy for 30 years I am 55 and this past year have been having a ridiculous amount of memory, cognitive and balance issues. Dr says it's the meds and I need to consider switching two years ago a different neoro told me not to try to switch as my seizures were Grand mal,last one so many years ago they say was 5 minutes I dunno , she said just switching could kill me. My dilemma! I know epilepsy is danger no matter what but I've done so good to have my brain function back would be amazing honestly I can't remember a thing anymore,,,thoughts?

Hi my name is Kelli. I recently got diagnosed with epilepsy in the last year. They are saying it is from my intense chemotherapy and chemo pill. I have come off all chemo. Anyone else get diagnosed after cancer?

@mythreeguys
Good morning and welcome to Connect.
Whatever you do DON’T DISCONTINUE PHENOBARBITAL ABRUPTLY or any other Anticonvulsant.
The potential for Convulsive Status Epilepticus is dangerously real.
I don’t understand why the doctor believed you shouldn’t switch medications. Dying from changing from Phenobarbital is extremely rare unless it’s stopped abruptly. Did you suffer from Cluster Seizures? Have you ever been in an induced coma, especially in the last year? What dose of Phenobarbital do you take?
Best of luck,
Jake

Welcome to Connect, @kelliann. What type of cancer did you have? What type of chemotherapy?

@kelliann
Good afternoon,
I’m sorry to hear about your Cancer and Epilepsy diagnosis. I wish I was able to help in some way but I don’t know anything about the causative effects of Cancer or it’s treatments. About all I do know is that having Epilepsy can complicate chemotherapy since numerous drugs can cause seizures. Wish I could have helped you more.
Wishing you good health,
Jake