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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

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

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

Question
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

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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Has Anyone Experienced A Significant Increase In Frequency And Severity Of Seizures With Perimenopause?
A MyEpilepsyTeam Member asked a question 💭

I am 100% positive that hormones are playing a huge factor in both the frequency and intensity of my seizures but I’m not sure where to start to address it. If anyone has any suggestions, PLEASE let me know!

A MyEpilepsyTeam Member

I started with seizures just as I was coming out of menopause at 54. I’m going to be 64 in June. All of my family and friends as well as myself think my epilepsy was brought on by a hormonal change. I… read more

VNS
A MyEpilepsyTeam Member asked a question 💭

I lost count of how many seizures I had the past weekend. My next neurologist appointment was not scheduled till January. I may have to reschedule it and reconsider the VEEG if the ward is open.
To everyone with a VNS do you believe it has helped? What is the process of receiving one like? I've done some research and it makes me nervous to consider

A MyEpilepsyTeam Member

I would suggest to consider it as a last resort
I had VNS implanted and removed one year later. Complications with the wires in my neck caused nerve damage that I will forever feel, tingly feeling… read more

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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

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

Sponsored Content
Find out more about different epilepsy treatments Read more >