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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.

Comments

Sigh, I just wrote a long

Sigh, I just wrote a long email and had to go back to signin.  Message gone!  Bummer.  Let’s see if I can remember.  Last August 2016 I had a grand mal seizure. Out of the blue.  After 2 ½ weeks at Mass General Hospital I was diagnosed with Autoimmune Encephalitis LGI1 (limbic encephalitis associatedwith voltage gated potassium channel antibodies LGI1).  I was sent home on 4 different anti seizure meds (Dilantin, Klonopin, Vimpat and Keppra) along with an 8 month course of Methyprednisonal infusions.  I was tapered off Klonopin in December which felt awesome.  But in hindsight I’m realizing I was still having what I now know are seizures even before getting off Klonopin - goosebumps, wave sensations, dizziness (still not sure if this is a seizure). When the seizures get cranked up I get nausea, dream/reality crossover, smell things that aren’t there and exhaustion. In general I struggle with foggyhead, memory loss, easily confused/discombobulated, blurry vision and poor energy.  Last winter we tried getting me off Vimpat.  Not successful. Tried increasing Vimpat.  Not successful.  In May we tried lowering the Keppra. Not successful.  So in June I went to Mayo Clinic in Minnesota for another opinion.  After a battery of tests they confirmed I still show LGI1 antibodies but have no obvious brain swelling. The specialist told me I have a resistant variety, something they are only just seeing.  He is trying me on Cellcept and another course of Methylprednisonal infusions. It’s been a week since I began the Cellcept and I haven’t begun the infusions.  I have been having dizzy spells but in general I’m feeling better.  Sometimes my head seems less foggy and my energy is improving.  Probably all in my head.  ;)  Here’s for hoping!To answer your question about the nausea.  I believe the seizures can be varied.  But from my experience the nausea is either a seizure or by product of one.  Also, I definitely can talk through almost all but the strongest of my seizures.  Most of the time people won’t notice anything is going on.  In fact, most of my seizures don’t show on an EEG.  The Mayo doc said they might be too deep in my brain to be picked up.  I find it helpful to read what other people are experiencing.  Thank you for posting.   

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