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Do You Have Problems Connecting To The Links That I Provide For The Up-to-date Information On Epilepsy?
A MyEpilepsyTeam Member asked a question 💭

I thought that I had mentioned in the past (but my memory recall is almost completely useless because of the severe brain damage to my memory, so I cannot be sure), that if you are in another nation besides the USA, and the links to the USA sites that I provide do not work for you, then let me know.

I know how to find the equivalent sites the the US Epilepsy Foundation in many other nations and likewise the government sites in all nations that provide one that is the equivalent of the US… read more

posted April 20, 2022
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A MyEpilepsyTeam Member

Cenobamate is the generic version of Xcopri. My neurologist has me on this now too. You had better have good health insurance or be wealthy to get to use this (I am lucky to have good health insurance) because this is extremely expensive -- since the pharmaceutical industry owns the politicians and as a result there are no restrictions on how much they charge for medications.

This was the most recently approved --2019--anticonvulsant which is the long-shot for those of us who have not been able to achieve a long-term seizure free state with the medication alone. Theoretically, it was supposed to be the one that would help those of us where the other medications had not. However, a lot of things happen theoretically or even are logical that they should do what they fundamentals indicate that they should be able to do, but the difference between theoretical or logical and reality has been proven many times to be the same as fiction and non-fiction.

posted April 20, 2022
A MyEpilepsyTeam Member

If you are talking about Carbamazepine, then yes, I have been on it. I was on Tegretol and then the generic version Carbamazepine for 24 years -- finally my new neurologist got me off of it when I was in EEG Long Term Monitoring last October.

Carbamazepine
Generic name: carbamazepine (oral) [ kar-ba-MAZ-e-peen ]
Brand names: Carbatrol, Epitol, Equetro, Tegretol, Tegretol XR
Drug class: Dibenzazepine anticonvulsants
https://www.drugs.com/carbamazepine.html
all side effects https://www.drugs.com/sfx/carbamazepine-side-ef...

Why have you been on 2 versions of the same anticonvulsant (unless you are talking about the XR = extended release version)?

If the neurologist is asking about taking a completely different anticonvulsant, then do so. There is no magic anticonvulsant that works for everyone. And for some of us, there is no medicine will work for us. It is important to see if a completely different anticonvulsant is possibly the medication that will lead you towards a long-term seizure free state.

posted May 4, 2022
A MyEpilepsyTeam Member

No, I haven't had any issues.

posted May 3, 2022
A MyEpilepsyTeam Member

This sounds very good, especially since 400 mg per day is not a very large dosage of Vimpat. Hopefully, it will continue working and even a slight increase in the dosage (if your neurologist believes it is necessary) will soon get you to the beginning of a long-term seizure free state. Just remember, like with just about everything else, there are few things that work that same for everyone and likewise few times when those diagnosed with the same condition share all of the same traits. Thus, it is looking so far as if you might be close to a chance to get your seizures under control. Keep positive and release any negative emotions and get enough sleep to help even more in getting to the seizure free state.

posted April 20, 2022
A MyEpilepsyTeam Member

I'm also seeing my doctor Monday.

posted April 20, 2022

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