Epilepsy

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How many of us, or who on here, is being cared for by a neurologist, or other medical professional, who is also an epileptic?

How many of us, or who on here, is being cared for by a neurologist, or other medical professional, who is also an epileptic?

Here’s a very “intriguing” question but who on here is being taken care of by a neurologist, or other type of doctor, who also has epilepsy? It just interest me sometimes that I feel like I know perhaps a little more about epilepsy and seizures than my neurologist. Mainly because I’m, (or we’re the ones) experiencing it and not them. Just think as if we had their knowledge and educational… read more

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A MyEpilepsyTeam Member said:

With the right doctor i dont think it matters. But i got super blessed. He is also an epileptologist. They are hard to find. Now i have a neurologist… read more

posted 2 days ago
8 medium

Has anyone else heard of or been offered the trail of new alternative to Keppra (levetiracetam) bevetiracetam?

Has anyone else heard of or been offered the trail of new alternative to Keppra (levetiracetam) bevetiracetam?

Update.... it helps if you spell it right!!! It’s Brivaracetam. I’ve found a few really useful studies.

I have a diagnosis of Catamenial epilepsy, type two, so when I ovulate. I've been on 750mg @Keppra (@levetiracetam) which has been amazing at completely controlling my seizures without making me into a zombie, but (and there's always a but it seems with anticonvulsants) it's made my anxiety and self… read more

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A MyEpilepsyTeam Member said:

I just started brivlera yesterday. I will give you an update in afew days once I figure out how its working.

posted 7 days ago
2 medium

Side effects

Side effects

Does anyone have any personal suggestions for how to get rid of the nausea and dizziness from my medicine. I take a lot and it can get really bad sometimes as to where I need to just take a nap to get rid of it. My doctor can’t do much it’s because of what type I take and how much. Lamotrigine, Zonisimide, and Divalproex.

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A MyEpilepsyTeam Member said:

Mouth wash didn't work for me. No sugar hard candy helps.

posted 7 days ago
3 medium

What kind of medicine should I choose?

What kind of medicine should I choose?

Ok, maybe you guys can help me! My doctor gave me four types of medication to research for my partial (non-convulsive) seizures: tegretol, aptiom, lamictal, and vimpat. I have read about them but the side effects, etc. generally seem to be the same. Does anyone have any recommendations for one versus the others? Thanks so much for any insight you can provide!

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A MyEpilepsyTeam Member said:

I have personally taken lamictal ever since i was diagnosed at age 2 and it was the only medicine I've taken/been prescribed that worked and that i… read more

posted 7 days ago
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Have you had so many seizures and been in and out the hospital to be told the same thing?

Have you had so many seizures and been in and out the hospital to be told the same thing?

Im constantly catching seizures everyday or every other day that I wind up in and out the hospital. The doctors keep telling me they pseudo seizures that I don't have any type of Epileptic seizures which I feel it bull crap excuse my language. I've done fell so many times, I don't know where I'm at who I am or who is any one or I don't want and one touching me are those pseudo seizures can you honestly stop catching… read more

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A MyEpilepsyTeam Member said:

Yip

posted 13 days ago
1 medium

carbamazepine

carbamazepine

started carbamazepine today and looking info on then started them on top of my elimpm

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A MyEpilepsyTeam Member said:

I've been on carbamazepine for 4 years now and they've been working for me. i"ve been seizure free 4 years now

posted 15 days ago
9 medium

Does anyone else feel extreme anger after seizures?

Does anyone else feel extreme anger after seizures?

I had 4 grand mal seizures since last night. I don't know if it's real but I feel like my boyfriend is deliberately angering me. I hadn't had a seizure since January 26, not even the staring type or ones where I just drop. I have so much stress on me right now but I feel so angry and full of rage and like I don't fit in my skin. Does anyone else feel like this after seizures? Furious, crying, paranoid? I feel so totally alone. Nobody understands and I'm tired of… read more

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A MyEpilepsyTeam Member said:

I either get angry or tired after seizures. I usually get really angry if someone is yelling, spouting hate comments, or verbally and emotionally… read more

posted 22 days ago
4 medium

Do you know what SUDEP is and its frequency?

Do you know what SUDEP is and its frequency?

If not, then check out this link from the Epilepsy Foundation New England and spread the word about it:
https://www.lightthewaytoday.org/sudep

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A MyEpilepsyTeam Member said:

sudden death in Epilepsy

posted 25 days ago
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Is anyone else trying to get through A-levels (or last school year before university)?

Is anyone else trying to get through A-levels (or last school year before university)?

I’m 18 (diagnosed at 14) and this school year my epilepsy has gotten worse and I just feel really isolated with my epilepsy. Last year I mainly had absences/ focal onset impaired awareness seizures and only a few tonic-clonic seizures which sucked but I endured. But now this school year, since our mock exams, my epilepsy has gotten much worse and I’m experiencing more of all those types of seizures (especially the tonic-clonic… read more

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A MyEpilepsyTeam Member said:

Thank you Sue

posted 27 days ago
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