Other Ptsd & psychogenic non-epileptic seizures (pnes)

[BlueDream]

Hi Forum
I have ptsd. I have had 3 seizures total, in my life. One occurred 17 years ago the other two have occurred within the last six months. After speaking to a neurologist & being given what I consider a pretty crappy medication, I started doing a little bit of research on seizures and PTSD and the treatments. I believe what I'm having are Psychogenic non-epileptic seizures (PNES).

I'm wondering if anybody is familiar with this type of seizures and what type of medications or treatments have used to successfully keep them away?

Thanks!! BD

 

[whiteraven]

Is that the diagnosis your neurologist gave you? I have PTSD, but I also have epilepsy. I had a grand mal seizure at 21 (which was followed by an abnormal EEG), then was officially diagnosed with complex partial epilepsy shortly after that. My seizures were pretty hard to diagnose initially because they were mostly psychosensory seizures - and they ran the gamut. Besides that, I'm dissociative, so doctors attributed what I was experiencing to that instead of the epilepsy. Finally, though, with the right meds, those episodes stopped (the dissociative ones did not).

I know about PNES. If that is the actual diagnosis, then your primary treatment would likely come from a mental health professional and not a neurologist. Although seizures from PNES are real seizures, there is no abnormal brain misfiring like there is with epilepsy so there is no need for an anticonvulsant.

If you don't mind my asking, what medicine were you given?

 

[meds]

Is that the diagnosis your neurologist gave you? I have PTSD, but I also have epilepsy. I had a gr...

The medicine is Oxcarbazepine
When I had the first seizure 17 years ago they put me on Tegretol and Xanax.
I don't have an official diagnosis the first neurologist told me he has no idea why I have the seizures and I probably would never find out. He then told me to take that medication and when I questioned him about his diagnosis and the medication he told me if I didn't like it to go get a second opinion. My next appointment is not until October 30.
I did decide to go talk to my PCP about medication I can take until then, I have to do something my nervous system can't take much more of this.

 

[whiteraven]

The medicine is Oxcarbazepine
When I had the first seizure 17 years ago they put me on Tegretol and Xanax.
I don't hav...

Ok, I know how scary seizures can be. And also how much of a toll they can take on your life. I'm so sorry you are struggling with this right now.

That medicine is normally used to treat seizures. And tegretol is, too. I was on that for a long time. It's common never to find out why you are having seizures. They often just start out of the blue for seemingly no reason at all. Sometimes there is a family history, but not always. Sometimes you discover one of the meds you're taking has a side effect of seizures. But lots of the time, you just never know.

I'm guessing you were recently started on this medicine and you've had the seizures while you were on it? Many times you have to go through a lot of different medication changes before you find the right dose that will control your seizures. Talking with your doctor about and understanding your diagnosis is really important because the treatment for epilepsy is different from the treatment for PNES. It's also important to understand, too, that even if you do have epileptic seizures, stress can trigger them.

I hope your appointment with both your PCP and your neurologist go well and you get on some medication that helps you!

 

[Sg505]

Hello I to experience seizures. They first began in March of 2017 and it was a grand mal seizure. They quickly prescribed me Lamactical and did eeg test that came back with slight abnormalities during the light part of the testing. I than had a second seizure November 22nd 2017 and had two grand mal in one day about a few hours apart. I do believe these are caused by my ptsd which I’ve been dealing with for the past 4 years. I also have bad dissociation, depersonalization, and derealization. I believe these are what is causing my seizures, does anyone have any experience with something similar to my story?

Thanks in advance.

 

[Cornczech]

I was diagnosed with epilepsy in 2010. I had generalized clonic tonic seizures every month like clockwork for 2 years. Only once was there an abnormal EEG.....I stopped going to the ER for them after the 2nd, (couldn't afford that ER and ambulance bill every month)...then the seizures changed to more petit mal and different ones. I repeatedly asked my neurologist about PNES, but he insisted it was epilepsy caused from multiple concussions I have had throughout my life. I will get seizures when I get over heated...seizures when I am WAY stressed out......and then I was recently told that what I thought was just a new developed speech impediment was, in fact. petit mal seizures. I dislike doctors, so to get me to go to one is like parting the Red Sea all over again.....The pheno barbital I was given helps with the seizures....it does NOT help me when I have those dissociative (I am learning that is what they are) moments....and I also have something that only happens when I am SEVERELY stressed in a physical or threatening way: where I completely go "crazy" and have NO memory of the incident. Unfortunately, when I was being arrested for a suspected DUI in October of this year, the angry, screaming cop who tried to handcuff me got a first hand taste of this....I apparently kicked him in the face....and was pretty insane my behavior, (witnesses state that I was screaming, "rape! rape!" and was fighting like a trapped wild animal and ran under a cop's truck to get away. I was charged with some pretty serious offenses and have NO memory at ALL of the incident until I woke up an hour later in the hospital, (I had managed to tell them I was an epileptic before the violence started), where I have PERFECT memories of what happened there and when I arrived at the jail, where I blew a 0.07). I have reacted like this after waking from seizures, general anesthesia, when I was sexually assaulted Chicago in 2013 and during a few incidents with boyfriends who tried to restrain me...apparently THIS is the trigger that gets me insane and "blacked out" (though I am fighting like a banshee on crack). I wish I had a name for THAT response to stress......

Don't just assume PNES....allow the neurologist to give that diagnosis.....mine swore I have epilepsy and still does.

Best of luck!

 

[trying2movefwd]

Thanks for this post. I have had bad seizure like dissociation. I've also fainted, came to with a hole in my tongue, been disoriented, etc. I was put on wellbutrin which can increase seizures in those with a history of seizure. I had a lot of symptoms minus loss of bowel control so my doctors collaborated and decided it was just dissociation without any further testing. I went off of wellbutrin without telling them...and only take lamictal now. They had me on both. Amazingly the seizure like experiences "stopped" about a month after I quit taking wellbutrin.Intetesting...eh?.