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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 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

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

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

How High Is Your Dose Of Lamotrigine?
A MyEpilepsyTeam Member asked a question 💭

Mine is 300mg bid
Only 2 grand mals since 2015 and monthly absence seizures

A MyEpilepsyTeam Member

I take 250mg morning and evening. This has increased slowly over 8 years.

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 Taken A Seizure In Front Of Their Kids Or Grandchildre? What Was Their Response?
A MyEpilepsyTeam Member asked a question 💭
A MyEpilepsyTeam Member

The first time my kids saw me have a major fit was in 1998( I'd been diagnosed in 1978 ) My boys were 13 & 11 ,my daughter was 9 .She sat on the stairs crying - the boys ran next door who called… read more

How Do You Describe Your Condition To Someone Who Does Not Have It?
A MyEpilepsyTeam Member asked a question 💭

When someone asks me, "What does epilepsy feel like?" I describe it as "having an invisible stalker with a TASER" and/or "being controlled by a sadistic puppet master". I also tell people my brain has been "rewired by a drunken technician".

A MyEpilepsyTeam Member

Cathryn that is exactly what happens to me. I can hear and know what people are saying just can’t speak back. Get like an intense hot flash and nauseated. About 2-4 every 15-20 days. No meds have… 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

Has Anyone Else Had Over 100,000 Episodes?
A MyEpilepsyTeam Member asked a question 💭

I had between 20 too 30 episodes a day for at least 10years before the age of 15 they were temperl lob apsint mind. I would use better words if I could spell them my microphone isn't working for speak to text.

A MyEpilepsyTeam Member

Iv been off medication since 18 which is around the last time I had one