PNES or epileptic seizures?

[deutschelectronic]

Yesterday I was sitting at my desk, watching videos on the internet, when all of a sudden my arms, legs and torso started twitching and jerking. It wasn't terribly violent, but it was distressing enough to freak me out. I was scared I was going to go into a full blown seizure (or pseudoseizure/PNES as my doctors call it), so I tried to relax. It went on for about a minute or so. I was able to control some of my muscles between the jerks, so I got up and fell onto my bed. I laid there and kept jerking for another minute and started to make gasping noises every time my body jerked. My eyes were open the whole time this was going on. Then after about another minute I lost consciousness. I don't remember what happened right up to that point, but I remember getting up to use the restroom about an hour later. I fell asleep again and would not get up for another 2 hours. I was so exhausted. I have been having seizure auras for a few weeks and fainted 10 days ago. Yet I keep getting told it's stress.

Everything I have read says that people experiencing a PNES have their eyes closed. Mine were not. I was also not immediately distressed at the moment it happened. I was slightly stressed out that day, but I was doing something relaxing at the moment it happened. I really don't know what to think. My mother has epilepsy, but my neuro says I can't have it because I had a negative MRI and a negative EEG, but that was almost 2 years ago and my seizures have become more frequent. I feel like giving up hope. I am taking neurontin, but it helps a little. What kind of seizure could I be having? I also have been having a poor memory.

 

[Nakamova]

my neurologist says I can't have it because I had a negative MRI and a negative EEG

Your neurologist is incorrect. It's quite possible to have a false negative EEG -- especially if your seizures are very brief, or originate in the frontal lobes or too deep in the brain to register. Especially given your mother's epilepsy, I think it's much more reasonable to assume that some or all of your seizures are epileptic in origin.

The particular symptoms you describe are myoclonic jerks. They tend to respond well to treatment with Keppra, Primidone, or Clonazepam, so I think it's worth contacting your neurologist for another discussion about treatment options.

 

[deutschelectronic]

I also think my fainting episode last week at work could have really been an atonic seizure, or an atonic-like seizure. I didn't have presyncope symptoms before it, and it was so brief. Luckily, I had a wall behind me to impede my fall. I have constant auras anymore, they sound just like simple partials, and I have a lot of very obvious myoclonic seizures, so it's hard to think I'm having anxiety with vasovagal response and atypical PNES. Epilepsy sound more like it to me, especially since it runs in my family.

I also had a violent tonic-clonic like seizure in Janurary, with involuntary thrashing, biting and screaming, but I only had a slightly altered consciousness and no "ahem" accidents. Since I had no accident and did not lose complete consciousness, and it occurred after an argument I had with my bf, my doctor said it was a typical PNES and not to worry about epilepsy. But once again, my eyes were very wide open during it, just like they all are at the beginning. And after reading this article in New Scientist, I want to scream at my doctor:

"But because seizures usually happen infrequently, it can be difficult for doctors to catch an attack and monitor the patient's brain activity in order to identify the nature of the seizure. However, Steve Chung and colleagues at the Barrow Neurological Institute in Phoenix, Arizona, US, a specialist epilepsy centre, managed to catch hundreds. Of the 52 patients diagnosed with PNES, 50 of them closed their eyes for the entire duration of the seizure. But only 3% of the 157 epileptic patients had closed eyes at the beginning of their seizure"

Another question just popped up in my head: could the neurontin be making it worse?

 

[Nakamova]

Seizures are a rare side effect of neurontin, and usually would be accompanied by other serious side effects or signs of an allergic response. Still, it can't hurt to mention what's been going on to your neurologist.