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Anyone Have Both Epilepsy And Pnes? Did You Get Off Medication If You Had Surgery And Went Seizure Free For A Good Time Period? Success Rate

A MyEpilepsyTeam Member asked a question 💭
Johnson City, TN

Was told today I shouldn't come off my medicine because even though I'm having pnes also now, the eeg showed potential epileptic seizures also still. I was hopeful I would get the chance to be medicine free after taking it since I was a toddler. 49 years old this Friday now. If I quit the medicine and have a seizure like I used to, it can reinstate the success the surgery did. Could go back to having 4 different types of seizures. I finally told myself that I was thankful to have the epileptic… read more

December 10
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A MyEpilepsyTeam Member

Didn't have pnes but I did have surgery. I was on three medications then got off two of them in just a year. I hung on to Dilantin for a while because I didn't want to risk having seizures again. Then after 5 1/2 years, I was told Dilantin was causing vitamin D problems so I stopped taking it. I've been seizure-free for 24 years and off meds for over 18 years.

December 10
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A MyEpilepsyTeam Member

It can be confusing to be told you have both epilepsy and psychogenic non-epileptic seizures (PNES). Some members on MyEpilepsyTeam have experienced having both conditions. Even if surgery has successfully treated the epileptic seizures, it's generally advised not to stop taking anti-seizure medications due to the risk of Show Full Answer

It can be confusing to be told you have both epilepsy and psychogenic non-epileptic seizures (PNES). Some members on MyEpilepsyTeam have experienced having both conditions. Even if surgery has successfully treated the epileptic seizures, it's generally advised not to stop taking anti-seizure medications due to the risk of the epileptic seizures returning. The decision to stay on medication should be made carefully with your health care provider, considering factors like your specific epilepsy syndrome, seizure frequency and type, age, lifestyle, and more. Whether to stay on medication after successful epilepsy surgery is a complex decision that depends on your individual situation. It's important to discuss the potential benefits and risks with your neurologist. Some factors to consider are your epilepsy type, age, time seizure-free, and lifestyle. While continued medication may not be desired, the consequences of stopping could outweigh the downsides of staying on it.

December 10
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