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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?







Last of 101 replies sign up to view previous answers
A MyEpilepsyTeam Member

Diagnosed 1992 I think winter. Oh wait nope summer.

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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Please Can I Have Some HELP. And Give Me Some Advice.
A MyEpilepsyTeam Member asked a question 💭

I have seen 3 consultant's over the past 30 years who explained I had epilepsy put me on the right medication great and worked no problem. But the new constitution said I didn't have epilepsy and cut all my medication down rapidly and I ended up in another hospital with no uses of my one side fitting and put on oxygen and very high blood pressure and other things and scared out my head as well as my family all because she wanted to take all tablets off me I did not have any form of epilepsy so… read more

A MyEpilepsyTeam Member

If the old doctors are available for confirmation seek them. If your old files are still available retrieve them in full detail
Stay in the monitoring unit
Seek a second opinion
As your own… 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

Do Any Of You Work Odd Hours/nightshift? Does It Affect Your Epilepsy? How Do You Manage?
A MyEpilepsyTeam Member asked a question 💭
A MyEpilepsyTeam Member

When I was working , I was only able to work 2nd and 3rd shifts. I was never able to wake up for early morning shifts. First time I tried to work the first shift , I was fired in 3 days , because I… read more

Vns Therapy
A MyEpilepsyTeam Member asked a question 💭

i want to know as much as possiable about it they r talking about doin this on my daughter

A MyEpilepsyTeam Member

I have a VNS also, I am not very organized so I don’t know where my 🧲 magnets have gone. The battery 🪫 in my VNS is dead 💀 right now. My neurologist recently told me there is a new and improved one… 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


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

Weight And Diet
A MyEpilepsyTeam Member asked a question 💭

What foods and diet have people tried to reduce their weight and thus seizure rate? Has it been successful?

A MyEpilepsyTeam Member

Eat healthy and do what I do exercise like a machine. I maintain about 7% body fat and refuse to let my Epilepsy impact my training. I regularly have partial seizures running and just plough on. My… read more

Switching Meds Around
A MyEpilepsyTeam Member asked a question 💭

My doctor thinks about switching me to another medicine in another month or two and its like my tenth one and i dont know how i feel about it? He's switching me from topamax to Aptiom any thoughts? I never been on it.

A MyEpilepsyTeam Member

I was on Topamax. It didn't help me, in fact caused me breathing problems I can tell you in my 54yrs, I have been on A Lot more than 11. Keep trying