MargeryHarrop my intention is not to make people get so worried about their side effects. Rather, at the conference, I’ll be speaking at, I’ll be advocating for researchers to heighten their awareness of side effects, versus just seizure control. I’ve been on panels that have reviewed research proposals, serving as patient reviewer. Rarel do the scientist on the panel comment on any particular side effects. They just go for seizure control. This happens in other medical specialties, too. As for Tina, she does have liver problems, as well as others. A short extract: “My PCP thinks that my seizure medication is causing the fatty liver problem. It has caused my blood pressure to go up or drop drastically, syncope, lightheadedness, heart, palpitations, even tachycardia.” To me, these are horrifying, but I would never advocate for her to go off her meds. I always encourage people to work with their doctors and speak out.

@A MyEpilepsyTeam Member , No miss information is being spread at all. If you go back and read the exact post that is being referred to, @A MyEpilepsyTeam Member gives different types of information about her liver. And one of the statements was that her medication might be doing something to it. I know she could be correct because my Neurologist took me off the same medication, the Trileptal, because long term use of it could possibly harm the liver. Plus, @A MyEpilepsyTeam Member was merely making a comment to @A MyEpilepsyTeam Member & was not spreading rumors & the message was not directed to you.

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@A MyEpilepsyTeam Member,
OXcarbazepine is the part of Carbazepine. It’s like amoxicillin compared to penicillin.. It’s on the same base. I had an allergic reaction.to Carbazepine (rash) but not to the oxcarbazepine. At least not on the outside that it would show. So I guess it is possible since they are basically the same medication just slightly different.

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I’ve been through several different meds over the years since 1980. I’d have to go down the list to get an exact count on the different ones, but I’m guessing it’s around 10 different ones. Medication changes always do a number on me . So some or another I have a seizure occurs during the change over.

Hello Tina. I have been a patient advocate in Canada with Paladin . Also I am one of the first in Canada to try Xcopri. I am willing to discuss my experiences since my TBI from the Canadian army. I have tried IVIG and a lot of other medications and tests.