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Real members of MyEpilepsyTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

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What Treatment For Epilepsy? I've Been On 6 Different Meds.
A MyEpilepsyTeam Member asked a question 💭

Every couple of years I have seizures then my Dr wants to try something new or ups the dosage. The meds I'm on now are making me dizzy and off balance

A MyEpilepsyTeam Member

I have been on too many meds to count. I was on phenobarbital, volume, Dilantin, Depakote, Topamax, and vimpat just to name a few. My son is on Trileptal, Keppra, Onfi, Depakote (two, 250 mg, and… read more

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What Would Be The Problem If Your Neurologist Has You Taking Vimpat 3 Times A Day, Not The Normal Prescribed 11/2 In The Morning & Evening??
A MyEpilepsyTeam Member asked a question 💭
A MyEpilepsyTeam Member

From what I understand about Vimt the max dose is 800. How much are you taking

Vns Therapy
A MyEpilepsyTeam Member asked a question 💭

i want to know as much as possiable about it they r talking about doin this on my daughter

A MyEpilepsyTeam Member

I have a VNS also, I am not very organized so I don’t know where my 🧲 magnets have gone. The battery 🪫 in my VNS is dead 💀 right now. My neurologist recently told me there is a new and improved one… read more

Seizures
A MyEpilepsyTeam Member asked a question 💭

I am 57 with MS. I am mobile but still have some issues such as falling and dizziness. 2 weeks ago I had 3 seizures in 2 days. Have never had 1. Went to neuro and after tests declared my ms has caused epilepsy. Do you spend time alone? I find myself being afraid to be alone.

A MyEpilepsyTeam Member

Keppra is the medication I am on also.

Epilepsy Surgery
A MyEpilepsyTeam Member asked a question 💭

Hi everyone. I am Robbie, going to be 57 on August 1 and have had seizures since 11 years old. I take Carbatrol, Keppra and Lamictal for my seizures and also have had VNS since the early 90's. I have never been able to get my seizures fully controlled. The last couple of years they are getting steadily worse...have tried 3 new meds over the course of last year..had reactions to all if them and couldn't take. I'm thinking seriously about having the surgery done to remove scar from my brain they… read more

A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member then you tryed every alternative route there is. the only option is the surgery. my surgery is the worst of the worst... i had 1 side of the brain disconnected and removed. i… read more

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When You Were Told That Medication To Assist You, Did You Choose Surgery Or Alternative Solutions? How Well Did It Work For You?
A MyEpilepsyTeam Member asked a question 💭

I have heard in the past from several friends who have tried many others including surgery, implants or non-medication alternative methods. However, I think it would help if those of you who have to share your experience with those are now at the point where they have been told that medication will never allow them to reach a long-term seizure free state.

If Q + A section was better organized, then I would not have to ask this question, but we have a support site, so we have to do what we can… read more

A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member Everyone gets nervous. Usually what helps is if you talk to your epileptologist/surgeon. From the surgeon, I learned there was a better chance of dying from a car accident… read more

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If Your Seizures Are Under Control, Do Your Side Effects (either From Seizures Or Meds) Come And Go?
A MyEpilepsyTeam Member asked a question 💭

As far as I know, I haven't had a seizure in over a year. It took me 11 months to feel like myself again after the last one. Then I had 3 months of feeling really good. Now all of a sudden the side effects (brain fog, memory, exhaustion, depression, word recall, etc.) are back. I'm trying hard not to feel like I'm backtracking and to view it as all part of the package. For those of you whose seizures are under control, do your side effects come and go?

A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member
I haven't had a grand mal or even a petit mal since 1998, when I had my VNS put in. What I do have are simple partials----they are like dizzy spells that last about 30… read more

Has Anyone Found Cranial Sacral Treatments Helpful In Soothing Your Brain And Body?
A MyEpilepsyTeam Member asked a question 💭
A MyEpilepsyTeam Member

No need to apologize. Tell your neurologist's about the depression side effect of that medication
As someone who was once labeled as not likely to ever reach a long-term seizure free state (and have… read more

About Flashback Problem
A MyEpilepsyTeam Member asked a question 💭

I went out yesterday purposely and I'm happy again! I can't wait for this weekend! I'm going to finally do open mic again! Last time was 2020 and I blocked him. I spoke a little ruff to him first

A MyEpilepsyTeam Member

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In Addition To My Epilepsy, I Have A Learning Disability. I Do Not Know If They Are Related. I Know Seizures Have An Effect On Memory.
A MyEpilepsyTeam Member asked a question 💭

I know the tests said my memory was poor. When given directions, I did not carry out the task well or consistently. The inability to do so the Doctor felt would getting and keeping a job difficult.

A MyEpilepsyTeam Member

I have a very bad short term memory but a good long term memory