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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

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

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 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

Have You Ever Participated In A Clinical Trial?
A MyEpilepsyTeam Member asked a question 💭

I know that if I had a grand mal seizure when I was at Brigham and Women's Hospital for EEG Long Term Monitoring, then a separate recording device in the room (wireless) could have been used in the research for this potential replacement for all of the wires needing to be attached during EEG testing and especially EEG Long Term Monitoring. This was not the standard clinical trial because it is simply getting the patient in the EEG Long Term Monitoring to agree to have the wireless machine in… read more

A MyEpilepsyTeam Member

Forgive me @A MyEpilepsyTeam Member. I did not see that you had already asked this question. I was on a run, so to speak, and it just kinda popped in my head.

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

Smart Watch Apps Vs. Embrace 2
A MyEpilepsyTeam Member asked a question 💭

Hi all. My son recently started seizing (grand mal) again after 4 years of being seizure free. I’m looking to buy him a seizure alert device but wanted to know if anyone has any experience with them. I’m currently looking at My Medic Watch App which connects to a smartphone or the Embrace 2 Watch. Are there any other options out there? Your insight is much appreciated.

A MyEpilepsyTeam Member

Hi Becky. My son started having absent seizures when he was 7. At age 15 he suffered from his first grand mal (this happened after his father’s funeral. He died from congestive heart failure)… 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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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