I am puzzling through this, as I was dx with epilepsy almost 4 years ago and had seizure improvement but never complete control on a combination of 3 medications. Seizures are largely nocturnal, partial, left-sided tonic, and occur about every 5 nights. Up until 3 weeks ago I was on 3 medications, then was admitted for 5 days of video EEG monitoring for which all medications were stopped. Didn't have a single seizure, only a warning and this did not register on the EEG. Now I am on NO medications (my choice but with Dr. approval for a trial), and seizures are of the same frequency but milder.

This has me wondering if all along I have never had epileptic seizures, but instead muscle spasms due to another neurological or neuromuscular condition that occur mainly at night and that look like tonic seizures. I have several congenital and adult onset medical issues that apparently fall into the neurocutaneous syndrome category, and also have symptoms/conditions that fall into the areas of spino-cerebellar ataxia, Charcot-Marie-Tooth, and Stiff Person Syndrome. I have been tested for these, but no results as of yet. Does anyone know if these or some other neurological condition can be made worse by taking anti-seizure medications??

Are you seeing an epileptologist? AEDs can increase seizures for some people and if one is misdiagnosed with different seizures than one is having then it is possible one is given medications that increase seizures. Do you know the limitations of EEGs? Have you read enough of your medical records to be able to discuss areas of concern, esp with regard to your initial diagnosis? Assuming the problem is seizures, achieving complete control can be harder with partial seizures, particularly symptomatic patients.

Hi, thanks for your reply and sorry for not responding sooner. I was just in the hospital for 2 weeks of seizure monitoring under the care of an epileptologist. I did have seizures this time, but am no further ahead because although they look like nocturnal frontal lobe seizures there is no EEG correlate. It was explained that this can happen if the seizure focus is too deep. I am still waiting for test results re. other conditions that might cause nocturnal seizures or seizure-like episodes. I have a follow-up in March, at which time all rest results from both hospital admissions should be available. Here's hoping for a diagnosis after nearly 4 years of wondering what's going on . . .