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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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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 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

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.

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

Anyone Having Positive Results Microdosing?
A MyEpilepsyTeam Member asked a question 💭

I have Tonic-Clonic seizures every 2 weeks. I'm 51 and have been having them for 10 years now.
I started microdosing 3/10s of a gram and I still had my seizure every 2 weeks, but I went 4 months without a Tonic-Clonic seizure. https://www.magicmushrooms101.com
https://www.magicmushrooms101.com/shrooms-and-e...

A MyEpilepsyTeam Member

The past year ive been thinking of doing it. Im glad to hear it has sone kind of a positive affect and hope it gets even better for you 😊

Rns Device Implant
A MyEpilepsyTeam Member asked a question 💭

I'm going to have the RNS implant in March. And all I want to know is has anyone else had it done and dose it work . I go in March to Vanderbilt medical center in Nashville Tennessee.

A MyEpilepsyTeam Member

I have both the VNS & RNS they reduce the strength of thee seizures. My seizures last about 3-5 mins now. Pending on how much meds you’re on, is what you need to think about. Good Luck!!

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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

What Causes Change In Seizures?
A MyEpilepsyTeam Member asked a question 💭

I have always only had between 2-4 min seizures all my life but since July 1, 2022 they started lasted 20min. What could be causing that spike in the differences? I am really concerned but more concerned about having a seizure like that in public with my 4year old son with and no one else.

A MyEpilepsyTeam Member

Hi Amanda. I can totally relate. My seizures have gone from Focal seizures that happened a 2-4 times a week to What seems to be Nocturnal Tonic Clonic. My Keppra has been increased to 3000 mgs. a day… read more

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