Most unexplained symptom

Good afternoon,

I have the most unexplained symptom. I have non epileptic seizures. Been through quite a few tests including MRI’s CT scans, sleep study and a multi day Video EEG study. NES or PNES is the only diagnosis other than ES Neurologist can come up with. I have seen the YouTube video of the gentleman with Dystonic storms he also had Dystonia, I don’t. These episodes started out as feeling like I was going to pass out. Get this weird feeling in my head a vacant stare, head would get heavy then looked like I passed out but I don’t loose consciousness and am fully aware of my surroundings.

These episodes have morphed into full on arm and leg shakings and happen on a daily basis. I am a 65 year old male without a history of mental or emotional trauma. I don’t really fit the typical PNES or FND patient. I am beginning to think my diagnosis is more of an unexplained issue so we will label it as PNES. Heart issues have also been ruled out by means of a 30 day heart monitor. Anyone else have this symptom or am I that unique one?

Currently waiting for a surgery date for the ES.

There are have been quite a few mentions of people having similar, if you search for ‘seizures’ in the discussions, it comes up with quite alot! Here’s a few to get you started:

Non-epileptic Seizures - General - Living with Eagle

Successful Clicking Hyoid Syndrome Surgery 3/6/25! - Symptoms and Treatments - Living with Eagle

Is it CSF leak, IIH or Both or something else. How it all started in my case - General - Living with Eagle

Henrik’s Story - General / Eagle Syndrome Stories - Living with Eagle

1 Like