Community Forum

Autoimmune Limbic Encephalitis and seizures

Dear All,

I am a 35 year old man and am very new to the world of seizures. No one in my family is epileptic, nor had I ever had a seizure until I my first one last February (on Valentine's Day of all days lol).

I was diagnosed with a very serious autoimmune encephalitis disease called Non-Paraneoplastic Autoimmune Limbic Encephalitis. Apparently, for some bizarre reason, my immune system decided to reject my brain and began attacking it like it was a foreign organ. It's ridiculously rare and I wouldn't wish it on my worst enemy.

I am writing now because I seem to suffer from Temporal lobe seizures, but have had a few grand mal (tonic clonic) seizures. I even temporarily lost the use of my right leg after a Tonic Clonic seizure (Apparently that is called a Tod Paresis). My new neurologist has me on Lamictal extended release 350mg. My previous neurologists had me on 400mg of Topamax daily but my new neurologist tapered me off that as it is apparently "an older AED" and it was also affecting my kidneys. Furthermore it was making me forgetful and stupid.

Anyway, after a 4 month course of IVIG (prescribed by my previous neurologists) my immune system was still out of control and I swapped neurologists. My new neurologist is a gift from god. She is one of the best in the USA and has written papers on my disease. She is also a professor of neurology at Yale. I am overjoyed to be her patient, she is so kind, humble and angelic. Anyway, she has put me on an immunosuppressant called CellCept (used by kidney, heart, liver and bone marrow transplant patients to stop their body from rejecting the donated organ). I take 1g twice daily (total 2g daily) and it appears to be working. The antibodies that my immune system makes to attack my brain (called Voltage Gated Potassium Channel Antibodies) are now dropping.

My question is this; occasionally I still have seizures but they are getting better. I am so new to these, I have no idea what I am experiencing most of the time. I sometimes get this feeling like my head is filling up with concrete and my brain "needs to breathe." I know that sounds utterly ridiculous, but I suddenly feel the need to stroke my skull as though that will calm whatever it is that is wrong. Sometimes I feel as though I want to take my brain out of my skull and let it "cool down and breathe." Then after a short time I start to feel normal again...though the experience leaves me feeling nauseas.

During these episodes, I don't lose consciousness at all and I can have a simple conversation (usually to tell an observer that I am fine). I also remember the incident and have a good sense of what is going on around me during the episode.

Does what I am describing sound like a seizure or similar to anything anyone else has experienced?

For those of you who have an autoimmune disease that attacks your brain and for which one of the many symptoms is seizures, do you notice a marked improvement and reduction in your seizures once the immunosuppressant medication stops your immune system from attacking your brain?

Can you go off your AED once your immune system is under control or will I be on AEDs for the rest of my life?

My new neurologist is admitting me to the hospital in Dec. (Mt Sinai) for more monitoring as well as bucket loads of scans etc.

To be honest, I am frightened and I absolutely despise having these feelings in my head. Can anyone help me understand what their actual experience is? Drs can tell me what it is that is going on, but I want to hear from people who have experienced seizures, not just studied them. Please help me.

Our Mission

The mission of the Epilepsy Foundation is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives.

24/7 helpline