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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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Has Anyone Had The RNS SURGERY, Please Provide Me With Any Feedback.
A MyEpilepsyTeam Member asked a question 💭
A MyEpilepsyTeam Member

Mine was like sean. I did a 14 day stay eeg one surgery , stitches. They monitored me for about 2 months then we started making adjustments. My battery change was a day surgery a lot smaller cut than… read more

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Find out more about different epilepsy treatments Read more >
A MyEpilepsyTeam Member asked a question 💭

My neurologist wants to put me on EPIDIOLEX. Does anybody have any experience with this medication. I would love to hear your reviews and experiences. Good or bad.

A MyEpilepsyTeam Member

@Churcham. I can tell you from professional experience (14 years doing interlibrary loan work for Massachusetts General Hospital--and getting at least article, chapter, book, etc. request filled for… read more

What Are The Chances Of You Child Having Epilepsy If You Have It?
A MyEpilepsyTeam Member asked a question 💭

Me and my partner are wanting to try for a baby but im a bit apprehensive as I don't want my baby to have epilepsy. I know it can be genetic but I am the first person (we know about) to have epilepsy in my family and doctors don't know how I got it. I would just like to know the odds because I dont think I would be able to watch my baby have sezuires seeing how scared I make my mum when it happens to me.

A MyEpilepsyTeam Member

I'm 64 I've got 3 grown up children who haven't any problems.( Apparently I had a first cousin who had major seizures in her teens which stopped when she got pregnant,( it was still very taboo back in… read more

A MyEpilepsyTeam Member asked a question 💭

Has anyone herd of a infant of 14 days old start with seizures and they were so severe they damaged the brain and at 29 days Sally Lynn died. The seizures were resistant to Pentobarbitol, phenobarbital, Kepra, kedamine, fentonal, and Topamax. She was on all of these at one time and finally they were putting in a new arterial line and she died 1.5 hours later. Has anyone herd of this?

A MyEpilepsyTeam Member

I am sorry but don’t give up hope on getting a answer to your questions. You are in my prayers and I hope you get those answers

A MyEpilepsyTeam Member asked a question 💭

Does anyone know if 200mg 2x day is a high dose? I mean I could ask my neurologist. Just curious.

A MyEpilepsyTeam Member

Nope cause I take one RX Lamictol 200mg 1 in morning 2 at night along with RX Tegretol been 25 yrs sz free since and living way life was met

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


A MyEpilepsyTeam Member asked a question 💭

As a child, I took Phenobarbital at night, and Tridione in the daytime. Anyone else heard of this? My new Dr.'s give me funny looks, but I know what I was taking. I was 17 when I stopped taking it.

A MyEpilepsyTeam Member

I take 145 mg of phenobarbital.

116 at night

On it 29 years

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

My Ex Bf Passed Away From A Seizure That Caused Him To Go Into Cardiac Arrest He Had Fetal Alcohol Syndrome Is This Kind Of Death Common
A MyEpilepsyTeam Member asked a question 💭

My ex bf was 29 years when he passed away from a random sezure at the age of 29 he was born with fetal alcohol syndrome and scaring on the left side of the this something that happens and could there have been anything to prevent his premature death

A MyEpilepsyTeam Member

He may of had a a SUDEP ( sudden unexplained death in epilepsy ) . The best thing is to talk to a specialist in this area

Epilepsy Diagnosis
A MyEpilepsyTeam Member asked a question 💭

When did you get it?







A MyEpilepsyTeam Member

Got that degree in 2012.