Epilepsy + DID

Hi,
so, we're relatively new to the whole multiple stuff; it's been...a long road, and we're still trying to push for a proper diagnosis (if possible) rather than "yup, there's eight of u—no, we haven't seen a psychiatri—because it's difficult to see one—please, stop yelling at me about being fake!" or just straight up ignorance to what's going on; we told our housemates via letter (no way known we were going to successfully have that conversation verbally) a couple of weeks ago, and when asked if they'd read it, they called it a "manifesto", which is an interesting, and mildly uncomfortable word choice when someone has just told you "hey, there's several people in here, support would be much appreciated right now."

Anyways, to the point; this means we're not exactly well-versed in all things related to multiplicity, in spite of (most) of us having been at least vaguely aware of the system for around ten years now, especially not when it comes to things surrounding other health issues too.

I am our Host, and am one of the older alters. For some backstory on our epilepsy; a few years ago, because of a sort of bootcamp we (namely myself and one other alter) decided to go to, for one of our youth groups (military affiliation), one of the littles (his name is Azzy) and I were co-conscious and had to try and do everything at the same speed as everyone else after we'd twisted our ankle earlier in the week. Needless to say, Azzy ended up overwhelmed, and after being yelled at (by someone who didn't have the authority after someone who did had already told us what to do) he ended up passing out.
Because of that, we now have tonic-clonic (your typical sort of) seizures; that was diagnosed back in 2013 after much running about. We didn't (as far as I'm aware) have any focal seizures during the testing, but did have other sorts of seizures, hence the diagnosis.

However, we've had other episodes where none of the adults in the system remember and we've woken up elsewhere or been informed of behaviour that's fitting of focal seizures, but that doesn't mean it wasn't Azzy fronting on his own at the time; we've had it happen before where he has run away from danger, but no co-consciousness there, so only he (vaguely) remembers what happened at the time.
There has been one instance that I remember being told about, and that was a time when we were found wandering around the school after-hours by a teacher, apparently looking very confused, and, when asked, said "I was meant to go somewhere.."
I know there have been other times similar has happened, and professionals have put it to focal seizures, but, I'm wondering if it could just be a confused little during these times, rather than an actual focal seizure?
I don't know if that's actually possible or not, but I'm curious if it may be a better explanation than focal seizures. And if it is possible that's the case, we can work on better management strategies for these sorts of events, as opposed to those appropriate for focal seizures.

Thank you,
~ Cecil

A percentage (like 10%) of persons with epilepsy also have psychogenic non-epileptic seizures, PNES. Most of those have DID. Conversely, about 80% of persons with PNES are initially misdiagnosed with epilepsy and receive inappropriate drug therapy for years.

So, given your very high index of suspicion for DID, hence PNES, you need a formal evaluation. The next step for you would be to book an appointment in an epilepsy clinic to request a differential diagnosis. That will confirm if you have just epilepsy, both epilepsy and PNES, or just PNES.

For vastly more information follow this web search link: Google Scholar: diagnosis epilepsy pnes

We were also Dx with epilepsy early on. Our seizures are termed "petit mal" so not sure if this is the same. They look like going blank...eyes stay open, we don't fall but all motion and consciousness stops. I am still unsure if they are seizures or dissociation. EEGs showed no seizure activity but they seem to be brought on by certain medications. In childhood this was not the case and we were put on valproic acid and it helped. Our neurologist thought we might "grow out of it" and took us off meds at 18 and they only returned after that when we took Zyprexa and later Wellbutrin. It was really frequent with the Wellbutrin to the point that we couldn't follow a conversation. We were inpatient at the time and our psychiatrist insisted it was dissociation not seizures but once off the Wellbutrin it stopped. Don't know what to make of this to this day.
C and Heather

Wellbutrin... Interesting point. I don't know much about it sadly.
This is pretty eye opening though, as we have had a passing out problem over the course of the last year. The boyfriend describes it as a bit compulsive, almost like a seizure except not. Pnes, I hardly understand it so far, but this could make so much sense! I'm terrified of being diagnosed with epilepsy & being restricted in some other fashion. Like driving for one.
Lee-Anne

The word seizure refers to symptoms observed by others. So if it looks like a seizure it is a seizure. Seizures have many different causes. Many causes are treatable, if correctly diagnosed.

If you are having seizures please do not drive. You are taking a huge risk with your life and other people's lives too.

Please get a full evaluation in an epilepsy clinic and then treatment to stop the seizures. Imagine how wonderful it would feel not to have that anxiety hanging over you!