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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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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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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.

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

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

Any Positive Information On Epidiolex As The Only Meds? Currently On Zonagran.
A MyEpilepsyTeam Member asked a question 💭

Any positive information on Epidiolex as the only meds? Currently on Zonagran. I'm reading and so many bad side effects. We asked our doctor to switch
Had a abnormal 24 EEG 1 month ago and in 2019,but not the cleavland clinic wants a 3 day EEG, I wish the shared data more . We have a functional doctor appointment and generics appointment. I'm my son's voice until he finds it and if takes fighting for his rights and researching like a scientist, then must be done.

A MyEpilepsyTeam Member

JDelakit Understand concern bout meds sides but look at some ads for over-counter meds on TV. Side effects galore.The 3 day testing is fantastic not bad if you want to know why this will give you… read more

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What’s Your Favorite, And Least Favorite Thing About An EEG?
A MyEpilepsyTeam Member asked a question 💭

Favorite:
Sleeping or watching tv

Least favorite:
1. Lack of sleep
2. Strobe lights
3. Blowing on a windmill

A MyEpilepsyTeam Member

My least favorite part of an EEG was having the electrodes implanted directly into my scalp. Then I was told to relax!

When Seeking A Second Opinion?
A MyEpilepsyTeam Member asked a question 💭

I was wondering when you seek a second or third opinion from a doctor do you tell ,share include all your diagnosis from previous doctors, neurologist .
Should that information be included?
would those previous diagnosis or medical opinions affect the opinion of the new doctor your seeing?
That's what my concern is really is that they will just agree with previous diagnosis.

A MyEpilepsyTeam Member

I have a neurologist of whom I am not fond. However, she is in practice with a man I do like. Is there a gracious way to say I would prefer to see this doctor?

Hi Have Any Of You Guys Had Temporal Lobectomy Surgery? If So What Is Outcome And Was It Successful
A MyEpilepsyTeam Member asked a question 💭
A MyEpilepsyTeam Member

After approximately 18 years of trying all sorts of medications and treatments to control intractable daily / weekly temporal lobe seizures and approximately monthly grand mal seizures, I made the… read more

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Learn more about available surgeries to treat epilepsy Read more >
How Long Have U Had Ur Disorder
A MyEpilepsyTeam Member asked a question 💭

if anyone is free to chat i am here

A MyEpilepsyTeam Member

I’ve had epilepsy since the age of 2. I’m now close to 50 yrs. Of age

Husband Threatens To Leave
A MyEpilepsyTeam Member asked a question 💭

Ok I know this sounds more like something for dear Abby but...I have 2 children ages 12 and 9. My husband has been threatening to leave since we got married. (11 years ago) He says he could do better. He should've left a long time ago. I'm the reason he has no friends. Umm... the only thing my children are going to remember of me is how much I sleep (Combo of working full time and tons of meds). Etc. He has said if we get divorced he'd take full custody of the kids because I have epilepsy so I'm… read more

A MyEpilepsyTeam Member

I was married for 17 years before my wife left me and divorced me after cheating on me 3 times and she knew about my epilepsy and sezuire disorder when we were dating for 3 years. My best friends… read more