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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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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

I Have Read About People Losing Loved Ones To Epilepsy Is It Epilepsy That Takes Them, Is It What Happens To Them During The Seizure.
A MyEpilepsyTeam Member asked a question 💭

My wife is living with epilepsy and I am so scared to death of losing her. I would like to know if there is anything we could do, or is it something that's inevitable?

A MyEpilepsyTeam Member

I would say when for some reason the seizures can not be controlled, no matter what they do

How Do You Handle The Huge Life Changes After Being Diagnosed As An Adult?
A MyEpilepsyTeam Member asked a question 💭

For those diagnosed later in life, how long did it take to overcome the sudden changes in your life? I was a total extrovert before seizures, always on the go. I never want to leave the house no because I'm scared of having a seizure in public or around friends most of which don't even know that I have them yet. The sudden change of not being able to drive has been very hard. It's been 13 months since I was diagnosed & I still feel completely isolated and cut off from the world outside my house… read more

A MyEpilepsyTeam Member

I've lost most of my family and friends because of my condition!! But y'all and little few family and friends that I have in my life is worth living and fighting to get better if that's even possible… read more

Has Anyone Heard Of Paroxysmal Dystonia?
A MyEpilepsyTeam Member asked a question 💭

I am having uncontrollable contortions of neck and shoulders. EEG ruled out seizures..They are happening every 15 minutes. I can talk during them and coordination.

A MyEpilepsyTeam Member

I have struggled with this since 2012. My neurologist had heard of some new research at a conference. They took a blood panel testing for VGKC antibodies. Mine were high. I was diagnosed with… read more

Apparently I've Read Through Medical Online Case Studies That Covid 19 Can Cause Ataxia, Movement Disorders?
A MyEpilepsyTeam Member asked a question 💭

Apparently I've read through medical online case studies that covid 19 can cause Ataxia, movement disorders, and Epilepsy after infection .I wanted to add links here but it wouldn't work I find this an interesting thing to know about as I'm wondering could covid 19 infection be the reason for my symptoms the variables in diagnosis are a lot but still it's a possibility.

A MyEpilepsyTeam Member

Nicole The only seizure that can hurt brain cells is if its uncontrolled- status epilepiticus
Repeated one after another same for SUDEP issues. Our meds won't allow this. A breakthru one may occur but… read more

Is It Recommended That People With Any Type Of Seizures Not Drive?
A MyEpilepsyTeam Member asked a question 💭

Is it true that people with any of the types of seizures shouldn't drive? I totally understand why I shouldn't (I experience tonic-clonic seizures), but what about those with the other types?

A MyEpilepsyTeam Member

Some states
Periodic medical updates are required each year until seizure free for 3 years.
AND
KENTUCKY 90 days

What Songs Do You Listen To, To Cheer You Up?
A MyEpilepsyTeam Member asked a question 💭

I love listening to music and i have a few songs i listen to when it's a bad day. I'm looking for some newer ones if anyone has one.

A MyEpilepsyTeam Member

Some songs that I like:

#1. Mary J. Blige- Just Fine
#2. Owl City- Fireflies
#3. DiL- Don't Let Go
#4. Joeboy- Alcohol 🍸
#5. Kes- Hello 👋
#6. Efya- Best In Me
#7. Halsey- Without Me
#8. Selebobo-… read more

Barometric Pressure's Effect On Seizures
A MyEpilepsyTeam Member asked a question 💭

Earlier today, a rain storm came through. Maybe a minute before this, something happened, rather not discuss it. Thought about brain tumors and intracranial pressure. When the barometer drops, ICP is higher than the pressure outside of the head. Had brain surgery, and brain tumors have the same effect- the tumor presses on the brain. Any experiences with sudden changes in air pressure?

Thanks.

A MyEpilepsyTeam Member

Me too. Exactly my experience, every word. Even what my neurologist said to me this morning, exactly word for word. He said he had deep experience with epilepsy for many years and never heard of air… read more

Has Anyone Heard Of Pseudo Seizures?
A MyEpilepsyTeam Member asked a question 💭

I was told I have Grand Mal and other Seizure Disorders one of them called Pseudoseizures . Anyone else ever hear of this? I'm told it's hard to diagnose and often gone undiagnosed or is missed. My family and I was just grasping the Grand Mal Seizures now there's more to try and sort thru?

A MyEpilepsyTeam Member

I agree especially with MarKC - thanks for reminding me of ' non epileptic seizures' I've also heard of them being called ' pseudoseizures' too