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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

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

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.

What Exactly Is Status Epilepticus? I Have Non-convulsive Seizures (unconscious) Lasting Between 10-15 Minutes - Does This Classify?
A MyEpilepsyTeam Member asked a question 💭
A MyEpilepsyTeam Member

In my region, yes that is considered focal status epilepticus. But i understand some countries have different rules for what counts as status, which is super frustrating!

Mysoline
A MyEpilepsyTeam Member asked a question 💭

when i was a child (10-16) years old i was prescribed but when i left school the doctors changed my medication. why was this when mysoline was controlling my epilepsy. whilst on mysoline i was having 1 maybe 2 fits aweek but since they change my medication my fits have increased and i am unable to work

A MyEpilepsyTeam Member

I just had one done. The results should be available by the 26th, which is when I have an appointment.
Leslie

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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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

Hum

Has Anyone Had Success With Clobazam As An Added Medication For JME? And Did It Help.
A MyEpilepsyTeam Member asked a question 💭

My daughter is on lamictal. We are at a pretty high dose. But we still have issues with her Myoclonic jerks from her JME. We are controlling big seizures. But hoping that this will help these morning Myoclonic stop.

A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member. She has gotten her blood work done every jump up in medication with lamictal once it hit the 500 mg mark. She's been all great on all her labs. And still had room to up with… read more

Hi I Have A Question To Anyone On Lamictal
A MyEpilepsyTeam Member asked a question 💭

I’ve been on 100mg twice a day for seizure control for about 2 years . Has anyone had issues with low blood levels of their Lamictal when they NEVER miss a dose? Also, any side effects from Lamictal? Thanks so much, Shirley

A MyEpilepsyTeam Member

I have been on Lamictal for years, but it wasn't until it was verified that I am 8# months seizure-free that my neurologist started to reduce the dosage (600 mg to now 450 mg to 300 mg) because it… read more