Seizures worse on AEDs - do I really have epilepsy or something else??
 

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??