Hello.
My twin Sis and I have complex partial seizures since age 6. But while in college, I lived up the street from my long time friend Austin. There were five of us and we all went to the School for the Blind. We got a long real well. BUT Austin started talking, asking lots of questions about Epilepsy and my seizure type which I though was harmless.
Well the day that we got our EEG results, he started acting a little too strangely. We went on a ride to the vet to take care of my doggie when he started acting like he had or was having a partial seizure of some sort, shaking half way, and scared a lady in front of him. I asked him what was the deal and he didn't respond well, just a huh? like he fell asleep.
From then on he would go into a "seizure like event" and he made several trips to the E.R. with no help from the doctors, even a neuro. They didn't know what to do with him knowing that there were not real and nothing really changed with his body besides him moving around.
The episodes were so frequent that he was admitted to I.C.U for observation and treatment where they gave him 4 different AEDs, even two or three altogether and basically made him sleepy and half high and smelled of the medications, sort of like post-surgery.
He had many seizure-like episodes, sometimes 16 convulsive events that no one could stop- no even high doses of AEDs! Someone with an Epileptic seizure would be considered in Status Epilepticus and can be fatal.
One time, I went to visit him in the hospital, which I knew would be an odd trip. He heard me walking with my guide dog Umbro down the hall way after getting out of the elevator. Not even 10secs of being in his room, he started it up all over again. He had them so often that even the nurses stopped going into his room. At the nurses' station, they have monitors with EKG, vitals and O2 etc info on the screens. They can see right away if something goes down. No change in any of his vitals that would cause alarm or require treatment.
No one knew what to do. I actually told Austin "You know, they have a better time telling a seizure if you have it during an EEG." Boy.. he took that to that real quick. He was scheduled for an EEG that day to see what was up. Not even hooked up totally to the EEG did he go into one of his episodes.
He was diagnosed with non-epileptic seizures or PNES Psychogenic non-epileptic seizures. To me, honestly I don't think its even that. For him to start this after hearing of our diagnosis, results of EEG and other testing, it seems like its a cry for attention. The stress he is dealing with is mainly death of family members and the knowledge of his twin bother's health condition and possible death at an early age.
To me, that would be enough to require serious counseling and medication! I have a identical twin sis and I could not imagine living without her- we are just too "connected". We both even died while hours old- every time we were separated. I died and she died as if we knew "One of us died! I'm not staying here alone sis".
Anyway.. sorry for such a long post, but my friend Austin is no longer a best friend to me. My last semester in college was a living hell, and I knew that Austin was totally acting out- not experiencing PNES but true malingering and went so far as to have an event after I had a complex partial and went to sleep. I woke up to him at the end of my bed, on the floor, crying and saying "I don't like this!" and having his wife holding him, asking him awareness questions.
To find out more, I experimented a little and told him on another occasion, "Austin, when most people have these events, they will remember what people say and be able to remember things after it." Now, knowing that someone with Epileptic seizures would never be able to tell every little detail, even complex partial seizures, I waited until he had another one. A friend recited a simple kid's song and story in which Austin remembered every detail, better than I did!
I am in NO way telling those with Non-Epileptic Seizures that they are making fun of those with Epilepsy or faking. People with PNES are simply have seizure like events as a way for their bodies to cope with a stressor or serious life changing event etc.- but someone that is malingering (what Austin did) is just doing wrong and it upsets me. Austin would have a seizure like event just at the fact you say the word. Or be on the phone and say: "Austin you don't sound too good."
Now someone with real PNES or Non-Epileptic seizures probably would never have this kind of seizure reaction, but seizures due to high levels of stress, trauma or serious problems with health such as cancer or other life-threatening conditions that might take their lives, might act as a trigger. But I am no neuro or specialist, so there is much for me to learn.
I hope this makes sense and I haven't offended anyone- I do apologize if I did. Its hard to sort of explain my thought about PNES compared to malingering (plain out acting out and lying and copying someone's real seizures/medical condition.)
Austin is still on an AED which hasn't helped him. I ask him every once in a while how he is. He doesn't really have these events anymore- especially after the diagnosis. Which is real common with people with PNES (real seizure like reaction to a trigger) and seizure like episodes such as Austin's events.
Another thought I had about Austin was the fact that he had these seizure like events in front of every person on campus that he knew, or that I knew. Now this probably wouldn't happen with someone with legitimate PNES that is caused by a trigger of some sort.
EMS was called out so often, that they knew his name! EMS also mentioned that is was real strange that he had no scratches or injuries of any kind- when with a real seizure, there would have been at least a broken nose or cut from falling on their faces or hitting something on the way down.
SO... sorry for again writing such a lllloooonnnggg post here- but there is still more to this story than what I wrote here.
Austin is also known for acting out in relation to other disabilities that I have. Most everyone that knows him, seems to know that he tends to lie to get attention etc.
Everyone, if you're still reading this, you might be asleep right now LOL
Thank you for being patient with me in writing all of this. I hope that it make sense and that it might help someone in the future.
Again, if I offended anyone with anything I wrote- please PM me or let me know..
Everyone, take care and be safe.
Have a good nite.
Crystal and her guide Umbro
