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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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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

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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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 Here Had The ECoG EEG?
A MyEpilepsyTeam Member asked a question 💭

I am set to have the ECoG Intracranial EEG(the grid on the surface of the brain), I have had the Depth Electrodes once. With my limited research it sounds that the depth electrodes were significantly easier... Just curious if someone could shine some light on what that whole process looks like and what I have to look forward too.

A MyEpilepsyTeam Member

Me 5 days

MY BABY GIRL DIED AT 29 DAYS OLD. PLEASE READ?
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

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

Hum

Video EEG
A MyEpilepsyTeam Member asked a question 💭

I have to a video eeg done. I have watched some YouTube videos, but still have questions. Will they just stop all my medications as soon as i am in the hospital? Or what?

A MyEpilepsyTeam Member

It all depends on how long the EEGV is . For one day, they won’t do a thing with meds.

From 4 - 7 days they will decrease your meds little bit at a time everyday
They want to try and get as big of… read more

How Many Of You Have Full-time Jobs Since Your Discovering You Had Epilepsy?
A MyEpilepsyTeam Member asked a question 💭
A MyEpilepsyTeam Member

Hi ya it s not easy working with epilepsy I take my hat off to all them that do like you say it s when you're I'll and having to take time off bless you never give up ☺️

Can Anyone Here Tell Me What To Expect When Applying For Disability?
A MyEpilepsyTeam Member asked a question 💭

I have reached a point where trying to work is no longer an option for me. The whole process of applying for disability seems very overwhelming. I did get through the initial application so now I am waiting to see what is next. I was told I may be sent to some specific doctors chosen by the Social Security Administration. I am not currently on any medication because everything I have tried to date makes me sick and my regular doctor said I am "medication resistant". I would just like to have… read more

A MyEpilepsyTeam Member

I did that. They all gave reasons why I cant work also