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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

How Many EEGs Did You Have To Get Before You Were Diagnosed?
A MyEpilepsyTeam Member asked a question 💭

I had to have 2 EEGs. First one was an inpaitent EEG for 3days went no where and the hospital staff and doctors were rude as hell to me
Second on was at a diffrent hospital for only an hour and they got excatly what they needed shortly after that i was diagnosed with FLE and TLE epilepsy was put on keppra and then topamax but had to come off of those and currently on Lamictal. My offical diagnosis is Primary Generalized Epilepsy
I recall having like 3 or 4 absence seizures in a row every few… read more

A MyEpilepsyTeam Member

I honestly don't know because at the end of my first appointment, my neurologist had me hooked up to an ambulatory EEG for 48 hours, thus I do not know at what time during that period the ambulatory… read more

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

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

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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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

In Addition To My Epilepsy, I Have A Learning Disability. I Do Not Know If They Are Related. I Know Seizures Have An Effect On Memory.
A MyEpilepsyTeam Member asked a question 💭

I know the tests said my memory was poor. When given directions, I did not carry out the task well or consistently. The inability to do so the Doctor felt would getting and keeping a job difficult.

A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member It wasn't that great when I was at school either I was diagnosed in 94 started school in 2000 and didn't officially start a support class until year 3. And even when I did… 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

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 Else Gone Long Periods Of Time Without A Neurologist Or Epitologist
A MyEpilepsyTeam Member asked a question 💭

I've been without a neurologist or epitologist for over a year do to the COVID crud my primary Care has like myself been trying to get me into a neurologist. But as of yet no goal.

A MyEpilepsyTeam Member

This is my biggest problem in regards to neurologists/epileptologists. I was seeing a local neurologist in a small town and I couldn't see where he was doing me any good. I'd go in. He'd look at… read more