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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 Had The RNS SURGERY, Please Provide Me With Any Feedback.
A MyEpilepsyTeam Member asked a question 💭
A MyEpilepsyTeam Member

Mine was like sean. I did a 14 day stay eeg one surgery , stitches. They monitored me for about 2 months then we started making adjustments. My battery change was a day surgery a lot smaller cut than… read more

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Does Anyone Use The Watches That Help Detect Seizures? Are There Certain Things You Need To Take It Off To Do So It Doesn't Set Off.
A MyEpilepsyTeam Member asked a question 💭

Will it set off with excessive motion.

A MyEpilepsyTeam Member

I have heard of this but I am afraid to shell out the money only ro have it not work. I'm waiting for it to be out a little longer so I can hear how well it works. If it works well, I would be more… 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.

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 had the RNS for 4 years 1 battery replacement and a ton of adjustments. When I first got it i was having 12-14 seizures a month. Now I'm down to 4-6 so cut in half and some of them I barely… read more

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Video EEG
A MyEpilepsyTeam Member asked a question 💭

I have to a video eeg done. I have watched some YouTube videos, but still have questions. Will they just stop all my medications as soon as i am in the hospital? Or what?

A MyEpilepsyTeam Member

It all depends on how long the EEGV is . For one day, they won’t do a thing with meds.

From 4 - 7 days they will decrease your meds little bit at a time everyday
They want to try and get as big of… read more

Question
A MyEpilepsyTeam Member asked a question 💭

My neurologist wants to put me on EPIDIOLEX. Does anybody have any experience with this medication. I would love to hear your reviews and experiences. Good or bad.

A MyEpilepsyTeam Member

@Churcham. I can tell you from professional experience (14 years doing interlibrary loan work for Massachusetts General Hospital--and getting at least article, chapter, book, etc. request filled for… read more

Do You Ever Wish Other People Could Spend A Day Walking In Your Shoes?
A MyEpilepsyTeam Member asked a question 💭

A couple of months ago it was confirmed that the surgery which was done to repair my knee after a bad fall (unrelated to epilepsy) didn't work. As a result I have to have part of my knee replaced due to this accident. It has left me on the door step of a very dark place that I haven't been since being diagnosed with epilepsy in 2011.

I'm coping a lot of flak from my sister and brother-in-law who think that because I can walk around the house without a crutch I should be able to so when running… read more

A MyEpilepsyTeam Member

It is not actually the epilepsy but the tablets that cause the tired ness make you drossy all the time an sleepy an dissy

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What Is The Legal Route To Go When A Person With Epilepsy Has Been Scammed At A Emergency Room At A Hospital?
A MyEpilepsyTeam Member asked a question 💭

About 5 months ago my 2 friends took me to a emergency room at a local hospital. I had a falling seizure a day and half before and I had the symptoms of a concussion. My friends and I wanted to find out if I did have a concussion for sure. Disappointing experience we all had. Didn't find out anything about a concussion. A month and a half later I got 3 bills totalling right under 5 thousand dollars. Got my medical records for that day, for I could get anyway. It was full of lies, with… read more

A MyEpilepsyTeam Member

Unfortunately, you have to let them know you are taking them to court, and if this does not inspire them to listen and fix the records, then take them to court.

Can You All Show Some Of Your Talents?
A MyEpilepsyTeam Member asked a question 💭

I've noticed we are some intelligent. Spiritual, artistic and poetic people on here can you all show me some stuff. I'm just in awe of us as a disabled people. I truly am shine peeps shine

A MyEpilepsyTeam Member

Mantle
Love your description w/ math!