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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

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

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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Anyone Ever Have Epilepsy Brain Surgery? Can You Share Your Experience?
A MyEpilepsyTeam Member asked a question 💭

Theyve been trying to get me to get epilepsy brain surgery for years the older I get the more I'm considering it as I'm seeing how it's affecting my life as an adult. I just want to hear other people who have already done it experiences so I know what I'm getting into. Did it completely cure you? Did your seizures get worse? Any mental changes in personality or mood? How painful was it? Etc.

A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member mine was so long ago I forgot about the puffy eyes. I had that as well. You have the same triggers as me

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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

Has Anyone Else Had Over 100,000 Episodes?
A MyEpilepsyTeam Member asked a question 💭

I had between 20 too 30 episodes a day for at least 10years before the age of 15 they were temperl lob apsint mind. I would use better words if I could spell them my microphone isn't working for speak to text.

A MyEpilepsyTeam Member

Iv been off medication since 18 which is around the last time I had one

How Has Epilepsy Affected Your Work?
A MyEpilepsyTeam Member asked a question 💭

I'm in the proces of applying for HCPC registration and I need to declare about having epilepsy and my relatively recent seizures - will this impact me getting my registration?
Occupational health have previously advised no lone-working, which would impact my work immensely! Anyone have similar experiences?

A MyEpilepsyTeam Member

I didn't want others to know when I was diagnosed at 41
But I have had some unfortunate issues in which I didn't have any idea of what happened.... I guess I was on a vent and when I finally woke up… 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.

How Do You Describe Your Condition To Someone Who Does Not Have It?
A MyEpilepsyTeam Member asked a question 💭

When someone asks me, "What does epilepsy feel like?" I describe it as "having an invisible stalker with a TASER" and/or "being controlled by a sadistic puppet master". I also tell people my brain has been "rewired by a drunken technician".

A MyEpilepsyTeam Member

Cathryn that is exactly what happens to me. I can hear and know what people are saying just can’t speak back. Get like an intense hot flash and nauseated. About 2-4 every 15-20 days. No meds have… read more