The mystery of PNES (Psychogenic Non-epileptic Seizures)

When R. came home, we thought we were prepared. We had experience with Linear Nevus Sebaceous Syndrome and delays and trauma. Yes, we were over confident.

For the first year or two, R.'s behavior was seemingly erratic and baffling. We couldn't figure out what was caused by what, what was correlation, what was adjustment, what was trauma, etc., etc. 

The biggest breakthrough was figuring out that R. had both epileptic and non-epileptic [PNES] seizures. This was a start. The next piece was heading to the ER when R.'s behavior was beyond our ability to deal with. Ativan turned out to be the thing that stopped the non-epileptic seizures. We found a psychiatrist and had another prescription that allowed R. enough peace so that we could begin to do some work on attachment and emotional regulation. 

There was still the mystery of why, every so often, she would still have periods of extreme disregulation. For the three weeks following Thanksgiving, R. was not in a good place. I'll save you the details, both for privacy and because I'm tired of going over it. There were some very challenging days. I really didn't want to go to the ER because R. has medical trauma, and hospitals are full, both in terms of beds as well as the germs for three different viruses. 

And while those three weeks were more than a little miserable and fighting with our psychiatrist was both tedious and infuriating, I feel as though we have learned another fairly important piece of the puzzle. 

R.'s PNES has always taken the form of tonic-clonic seizures. At least that is what we thought. Through a series of events, it began to cross my mind that she was having absence PNES as well. A little crowd sourcing in a group of adults who have PNES confirmed that this was very much possible. 

And suddenly the mysteries of the past seven years seemed a little less mysterious. Instead of having big tonic-clonic seizures and having three days of what seemed to be psychosis, instead she was having big seizures followed by an ongoing cascade of smaller absence type seizures. Instead of psychosis, it was a never ending series of seizures. 

This feels like a huge breakthrough. Knowing what is going on is the first step to knowing how to help. And because so little is known or understood about PNES, any piece of knowledge is like gold. Don't get me started on medical professionals who do not view these types of seizures as real, though, or we'll be here all night. There is so much about how the mind, brain, and body work that it is more than irritating when the medical establishment thinks they have it all figured out. But I said I wasn't going there, didn't I?

So, we seem to have regained equilibrium again, for which I am very thankful. And another piece of the puzzle that is R. is no small thing, either.