PNES? Or am I just grasping at straws?

[blackmamba]

Hello, I have been suffering from seizures since April of 2012. Here is my story:

Starting from 2007, I had a weird twitching/cramping feeling in my left foot that would last a day and then go away for a few months and come back. It was a little annoying whenever it happened, but for the most part it was never bothersome.

In April 2012, I woke up with the same feeling, going about a normal day, and then I encountered my first seizure at home (grand mal), where it felt like a complete numbness in my left foot that rose up into my body (it knocked me off my computer chair), and once again at the hospital before doing a CT scan (where I almost fell off the hospital bed if it wasn't for the nurse to hold me up).
A year and a month later, I had another seizure, and then three months later I had another two seizures in one day. In all three episodes, it took dilantin through IV in order to stop the seizures from happening, and then everything went back to normal.

Before each seizure, I have about five seconds from the time my left foot loses control and I fall to the floor, and then black out and lose consciousness. For example, I was able to call my mom into the room as I fell onto the floor during my first seizure, and I was able to hear a stranger ask if I was okay during my second episode after I fell to the floor (but not be able to respond).

During this time, I have seen two neurologists; one pediatric and one adult neuro since I turned 18 a year ago. I was put on 200 mg tegretol a day after my last episode in August 2013, and was on it for a year until I met my adult neuro a month ago. He put me on a therapeutic dose of 1000mg keppra a day, even though I haven't had a seizure in a year and two months now. Also, I have done 3 sleep-deprived EEGS (plus another routine EEG that I just did yesterday), an MRI, a CT scan, and a nerve conduction test over the last two years, with all of my results coming back negative for epilepsy. I know that just because all of these tests came back negative does not mean I am in the clear, but my next paragraph is what really makes me think.

One thing that I still have not brought up with my neurologists because I just learned about PNES a little while ago after doing research, was that all three episodes may have been caused by stress. I had an appendectomy and an immunization for HepB within one week of each other, and one week later, I had my first seizure which could have been caused by the physical stress my body went through (it was my first ever surgery). It was then a year and a month later in May 2013 that something emotionally stressful/damaging happened to me, and I had a seizure two days afterwards. Then, a very stressful experience occurred three months later, with a seizure following the day after. When I say "stressful experience", it's not a normal stress like a bad day at work or school, I mean something that really hit me emotionally.

Now, I am just becoming more convinced that it is non-epileptic seizures I have been having. They all begin with me waking up with my foot cramping and progressively getting worse until a seizure hits 1-2 hours later, and they have all been after something stressful, whether it be physical or emotional.

On a side note, since my last seizure, I've had two instances where my foot will harshly cramp up and twist on its own back in December 2013 and this past June (although there were no "stressful" experiences beforehand). Since they were such similar feelings to the symptoms I had before all my seizures, I went to the hospital for the one in June because I had a major anxiety attack thinking a seizure would strike at any time, and was put on muscle relaxants through IV, which only worked for a bit. In both cases, the cramping lasted a full two days and eventually went back to normal, with no seizure happening either time. This could be an entirely separate issue, but I guess it is worth mentioning

Any advice towards my issue would be greatly appreciated!

 

[jenagade]

Hi blackmamba that is quite an ordeal.

Have you talked to a psychiatrist? They would be the first step to determining if it is possible that what you are experiencing is PNES.

I haven't had as many tests done, but after two "weakly" positive normal EEGs and a negative sleep deprivation EEG my neuro decided to go down two different paths, one which was to get a video EEG done (7 days, fun times) and PNES.

I already had a psychiatrist, who was actually the one to refer me to the neuro in the first place. She reviewed my history with seizure treatment, and compared that to what she already knows about my psychiatric treatment history and based on all of that plus the fact my seizures calmed down on medication, and worsened as I came off it, she concluded that there was absolutely no grounding for her to suspect a psychological reason for the seizures.

I would definitely start with talking to a psychiatrist if for nothing else than addressing your anxiety. You might find treatment for that might stop the seizures, or you might continue having seizures with the anxiety under control, which would be another possibility crossed off the list.

 

[masterjen]

It is important to note that epileptic seizures can be triggered by stress, both emotional and physical, so the fact that you can relate the seizures to stressful events does not necessarily mean the seizures are psychogenic. It is possible that the sensation in your foot is a partial seizure, and then are more significant seizure occurs or the seizure generalizes. I have had this happen: a partial seizure waking me at some point in the night, and then a tonic seizure (a type of generalized seizure) might follow after I've fallen back asleep (minutes to 1-2 hours later). I'm not familiar with prolonged partial seizures (ie. the long period of cramping you had) but someone else here may be able to comment on that.
Good luck, and I hope things get sorted out for you soon!