Epilepsy Talk

Autoimmune Epilepsy — Cause of Previously Unexplained Seizures? | August 5, 2016

Antiepileptic drugs (AEDs) are the mainstay of treatment for epilepsy, but seizures continue in one-third of patients despite appropriate AED therapeutic trials.

Even in the current era, the etiology of epilepsy often remains unclear.

Some patients with unexplained partial seizures which are medication resistant may have “autoimmune epilepsy” — epilepsy characterized by autoimmune antibodies.

Although autoimmune epilepsy is still rare, it’s become an increasingly recognized cause of epilepsy, which might have been previously thought to be of unknown cause.

What is the immune system and what are the types of immune disorders?

Your immune system protects the body from the bad guys —infections and foreign substances that invade the body and cause disease.

White blood cells, or leukocytes, are on the prowl throughout the body in blood vessels and monitor for viruses, bacteria, or foreign substances that may cause a problem.

Antibodies are proteins produced by the immune system and attack infections or foreign substances.

In contrast, autoimmune disorders are groups of diseases which invade the immune system and attack the body’s healthy organs and tissues, as if they were foreign invaders.

What are the features of autoimmune epilepsy?

Autoimmune epilepsy is actually a group of invaders, and compromises the immune system to cause recurrent seizures, difficulty in thinking, emotions, or other brain functions.

What tests can be done to support autoimmune epilepsy?

First, other causes of epilepsy must be ruled out.

People should be evaluated for underlying brain infections such as encephalitis, meningitis, or abscess.

Blood and urine tests may detect genetic or metabolic conditions.

Auto-antibodies can also be detected by a lumbar puncture— a safe procedure where a needle is inserted into your lower back to draw out the cerebrospinal fluid which bathes the brain and surrounds the spinal cord in the back.

What are the treatments for autoimmune epilepsy?

In addition to using antiepileptic medications to control seizures, immunotherapy is used to treat autoimmune epilepsy.

Intravenous immunoglobulin (IVIG) which can block and remove damaging auto-antibodies is simply a blood product of pooled antibodies collected from healthy volunteers.

IVIG or high doses intravenous steroids are given repeatedly, usually every week for about six weeks.

If there is a good result, then the time interval between IVIG or intravenous steroids is gradually increased (every other week followed by every three weeks).

Another option is plasma exchange if IVIG treatment and intravenous steroids are not helpful.

Plasma exchange draw the “bad” blood — filters and removes the harmful auto-antibodies and then returns.

However, Dr. P. Ian Andrews of Duke University said in an interview that he felt this blood-cleansing technique only provided a temporary solution because the body soon begins to generate antibodies again.

But he said it might find limited use in arresting severe, degenerating cases so that patients would have some temporary relief and doctors would get a chance to try alternative medications and treatments.

“The body should not make antibodies that eat up its own brain but, knowing this happens, it should point to other strategies for treatment,” Dr. Andrews said, “Perhaps we can find a way to selectively remove the bad antibody or develop a substance to block its activity.” 

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  1. I can,t figure what this about. I don, know if any of it some thing I may have had or gone through.


    Comment by michele metzger — August 5, 2016 @ 11:26 PM

  2. I’ve have had intractable partial seizures for over 15 years. Six months ago I started the Ketogenic Diet and 2 months ago I started eating a nutrition dense version of paleo while also doing best to keep carbs very low to stay in ketosis. The diet is called The Wahls Protocol and was designed by Terry Wahls, an MD who was diagnosed with multiple sclerosis later on in life. She went from a healthy middle-aged professional to a sickened bedridden woman. The disease reaked havoc on her immune system. She tried all meds and procedures recommended by doctors (like we do for epilepsy) but just declined and declined. She decided to take matters onto her own hands, researched optimal nutrition for brainhealth, designed a paleo-based nutritionally-dense version of the MCT Ketogenic Diet to optimize healing of her brain, immune and neurological systems. She calls it the Wahls Paleo Plus Diet. She has a YouTube video called Mind Your Mitochondria and is always being interviewed on health podcasts. Check her out. My seizure frequency has decreased by 400% since I started keto and following her protocol. Thx.


    Comment by barn619 — August 6, 2016 @ 2:21 AM

  3. WOW, that sounds amazing. And something that takes a lot of discipline. Hats off to you!

    Does she have a website that you could send us a link to?

    Liked by 1 person

    Comment by Phylis Feiner Johnson — August 6, 2016 @ 10:55 AM

    • ‘d never turned to her website until now. I read her book and found plenty of resources through Google searches. That said, this page on her site has lots of her videos:


      There are 3 phases to her diet. In the first she holds your hand through process of slowly dropping certain types of food and working your way to her paleo-based diet. Phase 2 is her nutrition-dense version of paleo. Called “Wahls Paleo” She says most people stop there.

      Those of us with epilepsy need to get to phase 3, she calls “Wahls Paleo Plus.” Google that

      I was already 4 months into the Ketogenic Diet when I found her book and jumped right into the Wahls Paleo Plus level (WPP), skipping the first 2 levels. I went cold turkey and cut out virtually all gluten, dairy and legumes and started eating 9 cups of veggies/day minimum. Admittedly that was and still is challenging at times because I love dairy and was eating lots of cheese, cream cheese and heavy cream while doing regular Keto. However, I was already off gluten which made transition easier.

      Look up “MCT Ketogenic Diet” WPP is her version of a MCT Ketogenic Diet. On the Standard Ketogenic Diet (which millions of people are doing for weight loss – it is the new Atkins and very trendy) people need to consume no more than 30 net carbs daily to stay in ketosis. The MCT version allows one to consume many more carbs if they load up on MCT’s ( medium chain triglycerides – like pure coconut oil) every day. On WPP the xtra MCT’S allow you have to eat the 9 cups of veggies (which significantly add to daily carbs) and still maintain ketosis. On standard keto it would be extremely difficult to eat that many veggies and not exceed the 30 carb limit.

      Heres the book: http://www.walmart.com/ip/39121806?wmlspartner=wlpa&adid=22222222228026839068&wl0=&wl1=g&wl2=m&wl3=56228451288&wl4=pla-78799988448&wl5=9061195&wl6=&wl7=&wl8=&wl9=pla&wl10=8175035&wl11=online&wl12=39121806&wl13=&veh=sem

      Also just search YouTube for Wahls Paleo Plus or Google. Terry Wahls podcasts.

      Feel free to reach out to me directly. Happy to help in any way and highly encourage people look into this way of eating as an supplemental treatment for epilepsy. It sure has helped me



      Comment by barn619 — August 6, 2016 @ 9:51 PM

      • Like the Ketogenic diet, it’s probably too strict once you get going. That’s probably why people quit.

        9 cups of veggies/day is MY cup of tea.

        The only problem I’d have is I can’t eat meat. ANY mammals. I’m allergic to them. (Missing an enzyme to process the animal blood.)

        It’s fins and feathers for me. Cutting out dairy would kill me, since my diet is so limited.

        So there goes my candidacy.

        But for so many (with the discipline) the diet would be such a boon.

        I wish more people here and on Faceboook knew about it.


        Comment by Phylis Feiner Johnson — August 7, 2016 @ 11:15 AM

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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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