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
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
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.
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
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