Hi @crissyh76
Welcome to this Epilepsy & Seizures community at Connect!
I understand your anguish about not yet knowing what's happening to you and not having a full diagnosis. I lived with that uncertainty myself for many decades.
I'm not a doctor, but it sounds to me like you may have had tonic-clonic seizures with loss of continence during your sleep. I've experienced this myself. The last seizure you described sounds more like a focal seizure. I'm sharing here a resource of the Epilepsy Foundation about the types of seizures. It has been extremely helpful in understanding my epilepsy once I got my epilepsy diagnosis.
Types of Seizures - Epilepsy Foundation
https://www.epilepsy.com/what-is-epilepsy/seizure-types
Unfortunately, a clean EEG doesn't rule out epilepsy. It simply means that at the time of the exam, there were no epileptiform waves detected in your brain. Many of my EEGs were clean until 2019, when my doctor recommended I stay awake most of the night before the exam. I now understand this recommendation—lack of sleep is a common seizure trigger. That was the first time my EEG showed epileptiform waves. Here's another helpful resource from the Epilepsy Foundation on this topic:
I Have Seizures, But My EEG Was Normal. Why? - Epilepsy Foundation
https://www.epilepsy.com/diagnosis/eeg/what-if-its-normal
I have a few questions—just trying to understand your situation better: Were you instructed to sleep as little as possible before your EEG? During your September seizure, was your awareness impaired? Were you able to speak, or was your speech impaired for a while? I understand you were already taking Keppra when this seizure occurred—is that right? Did you possibly miss a dose, or had you experienced any triggers like stress or poor sleep beforehand?
Since you don't seem confident in your current doctor, I would strongly recommend getting a second or even third opinion if I were in your position. Ideally, consult with a neurologist who specializes in epilepsy—an epileptologist.
I also recommend avoiding driving until you receive a full diagnosis. Driving with uncontrolled seizures can lead to accidents and serious injuries.
I hope you get answers and an effective treatment plan very soon.
Chris