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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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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

Epilepsy Diagnosis
A MyEpilepsyTeam Member asked a question 💭

When did you get it?

1950s

1960s

1970s

1980s

1990s

2000s

Last of 101 replies sign up to view previous answers
A MyEpilepsyTeam Member

Diagnosed 1992 I think winter. Oh wait nope summer.

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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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

Who Is Excited About The NFL Playoffs Games?
A MyEpilepsyTeam Member asked a question 💭

I’m really happy that Tampa Bay Bucs made it. They’re playing home against Dallas Cowboys Monday night!

A MyEpilepsyTeam Member

I wish I could say something but my husband is a football official (he is an umpire). Both he and. I would be in so much trouble if it was found that he made a prejudiced statement. So enjoy the… read more

Heart Rate And Seizures
A MyEpilepsyTeam Member asked a question 💭

I was just told I didn't have a seizure because there was no elevated heart rate. Mind you, this was a nurse. A cardiacs nurse. So, anyone else with Epilepsy that does not an elevated heart rate.

A MyEpilepsyTeam Member

Yes me hun

How Do You Handle People That Think You Can't Do Certain Things When You Can Do Them?
A MyEpilepsyTeam Member asked a question 💭

When I try do some tasks some of my family members will say "are you sure you should be doing that? I will be having surgery soon for an RNS and I know it will really happen during my recovery and after. So I am wondering if anyone has delt with this and hoe you deal with it?

A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member, yeah that is one of my bad habits too.

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Which Of You Who Have Had Any Form Of Brain Surgery Would Not Do So If You Could Go Back In Time With The Knowledge You Have Now?
A MyEpilepsyTeam Member asked a question 💭

I know that a few of my friends have expressed that if that had known before they had their first brain surgery what they know now, then they never would have agreed to it. Who else feels this way? How many feel that the brain surgeries have improved your quality of life?

I am not going into this eventual trip to the seizure center with any intention of agreeing to a brain surgery until there is no other options. I believe because my neurologist is at least in his late 60s, that he is very… read more

A MyEpilepsyTeam Member

But the good thing for me is going through all the pain I became seizure free.

Does Anyone Use The Watches That Help Detect Seizures? Are There Certain Things You Need To Take It Off To Do So It Doesn't Set Off.
A MyEpilepsyTeam Member asked a question 💭

Will it set off with excessive motion.

A MyEpilepsyTeam Member

I have heard of this but I am afraid to shell out the money only ro have it not work. I'm waiting for it to be out a little longer so I can hear how well it works. If it works well, I would be more… read more