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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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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

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

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!

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 had more seizures in my 40's than any other time except my teens. The seizures I had in peri menapause were also more severe, causing a loss of memory and balance. It took weeks to get over each… read more

Epicenta Moderate Release
A MyEpilepsyTeam Member asked a question 💭

Taking a 300 mg epicenter moderate release capsule at night ( as well as others ) Tolerate it fairly well - ithink Have now Gone up up to 5oo mg now Feeling more tired but better if I can get of the house for a walk How does everyone get on with this AED ?

A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member... I'm not prepared to stay on it even if he reduces the dosage. I am sure I am allergic to it too.

Do Any Of My Team Members Take Vimpat
A MyEpilepsyTeam Member asked a question 💭
A MyEpilepsyTeam Member

I have took vimpat since I was a teenager and I don’t have any side affects with me and it helps me to help seizures but I am sure it helps with my other meds to.

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

Osteopenia And Possible Med Change
A MyEpilepsyTeam Member asked a question 💭

I was diagnosed earlier this week (2-14-2023) with ostopenia in my left leg and hip. I am concerned that this condition may be a side effect of the Dilantin/phenytoin that I take. I'm wondering if I should switch to another seizure med. I know you're not doctors but has anybody else encountered this problem? What action was taken by you and your doctors?
PS I know ostopenia isn't reversible. I'd just like to perhaps lessen the ongoing damage.
Thanks in advance.
Peggy Shore

A MyEpilepsyTeam Member

Physical Therapy is strenuous. I came home and took a 3 or 4 hour nap...lost track.
3lb ankle weights are a lot for this skinny body. When they work me up to 5lbs I don't know how I'll do.

I’ve Been Haveing Seizures For 20 Years Has Anyone Been Able To Get Away From The Pills?
A MyEpilepsyTeam Member asked a question 💭

I take 12 pills a day and unfortunately without them I will have a seizure,I was wondering if anyone had been able to get away from the pills with a alternate medication.....doesn’t help that I live in GA

A MyEpilepsyTeam Member

You've had seizures over 20 years but still fine & healthy. Thank your meds for protecting you. Above Shellee points out how crazy for a diabetic to not take insulin for diabetes. "Oh my God I have… read more

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