I’ve not been diagnosed with epilepsy despite having various tests (ECG, EEG and a MRI, with the results showing no abnormality. I’ve also met with a neurologist who seems to believe that I’m not even suffering from seizures, except for the one time that it was witnessed.
The first instance of this occurring was 4 years ago, during an afternoon nap. Fortunately my roommate and friend were in the room. They described my behaviour as my body stiffening and shaking, eyes rolling up and foaming at the mouth. I attributed this to tiredness as I’d come back from travelling just a few days beforehand.
The next occasion was two years later, no witnesses but I felt the symptoms were the same as the first instance. This was in the morning when waking up. No medical testing had occurred at this point.
Next occasion was August 2019, this occasion included a tongue bite and I’d rolled off my bed. On this occasion I did pursue medical help and went through the tests as per the above. This has seemed to be occurring on and off on a monthly/bi-monthly periodicity and there seems to be no link as to what is causing them
The neurologist said that the occurrences from August till recently don’t sound like seizures to him. The most recent occurrence was last month and my flatmate heard a strange noise coming from my room, he saw that I was suffering the symptoms as described in the first occurrence and I’m currently trying to inform my neurologist of this but given waitlists etc, everything takes an age!
Apologies for the length of this post, but it’d be great if I can get some advice or direction on support to seek out. It’s quite stressful living with an undiagnosed condition!