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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 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

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

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

Nerologist Running Own Test Not Asking For What Has Already Been Done
A MyEpilepsyTeam Member asked a question 💭

Just seen the nerologist last Thurs Jan 2023.My Nerologist, She doesn't want anyone elses scans or tests. When I've already have had abnormal EEGs plus video EEG. MRI & Cat scans are all normal tho. Anyhow my Nerologist,She wants to do all her own
Workup. Is this normal?
Cause none of my sons Nerologists have did same testing they always went to next step/testing. He was finally diagnosed 2022 Generalized epilepsy after yrs (started when 14 yrs, now 25) of having them and being on meds.

A MyEpilepsyTeam Member

But my offer is no joke. I make it not in jest. But I'm all seriousness

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

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 ☺️

Does Anyone Get Scared When You Since That You Are Going To Have A Seizure
A MyEpilepsyTeam Member asked a question 💭
A MyEpilepsyTeam Member

Yes but for me it happens in stages,firstly i feel a different sense of reality, secondly i realise my coordination/balance/vision is impaired and thirdly i realise whats happening between a fog of… read more

Podcast On Epilepsy Includes The “history” Of The Disease!
A MyEpilepsyTeam Member asked a question 💭

https://podcasts.apple.com/us/podcast/this-podc...(Phone number can only be seen by MyEpilepsyTeam users)?i(Phone number can only be seen by MyEpilepsyTeam users)

A MyEpilepsyTeam Member

Awesome, thanks!

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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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