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It wasn’t long after my initial epilepsy diagnosis that I began showing signs of an autoimmune disease. Actually, I had probably been experiencing the symptoms for a few years, but they were always ignored by whatever doctor I was going to at the time. The symptoms were often assumed to be psychosomatic. Sounds terrible I know but it is the truth. The first autoimmune disease to blossom, shall we say, after the seizures started in earnest was Celiac disease.

My experience with physicians and the Celiac diagnosis went something like this: “I feel like I have knives in my gut whenever I eat. Them: “Oh we can give you Darvocet for that. You just need to calm down and stop babying your system.”  I was actually told to take a narcotic with my meal because my gut hurt. I was not tested for Celiac, I was not questioned as to what exactly might be triggering this. I was not told to modify my diet. Just the opposite.

My breakthrough with this issue came when I had a suicidal response to one of my anticonvulsants. It was at that time that I realized the drugs were a seizure trigger and I needed to get off of them or die. I went to a well-respected general practitioner to slowly and safely withdraw from all my medication (I think there were around 12 at that time). In the course of the examinations and planning, he realized I had Celiac. “It’s a food thing. You can research it and treat yourself. I am focused on the withdrawals.”

That was my first glimmer of hope when it came to working with my body.

Once I knew what I had to do in response to that diagnosis, I could start the long road to healing. Consequently, interesting issues came up. If you aren’t aware of a particular thing, you might not see its connections and its impact on you. In this case, I found that gluten, the thing most harmful to Celiacs, also caused some of my seizures.

I used to have these awful night seizures, fueled by gluten apparently, that had me awake and trapped inside a mental lava lamp. These seizures made me nauseous, gave me terrible headaches, frightened the life out of me, and made me more susceptible to Complex Partial Seizures during the day. Eliminating gluten, or all grain in my case, made a huge difference and stopped a large number of my seizures, making me stronger physically.

I began to see other symptoms emerge as I withdrew from the anticonvulsants and other supporting drugs, and eliminating things in my diet proven to cause seizures. This was a very frustrating time for me, trying to manage my TLE through avoiding triggers and limiting my diet to heal my gut and stop the gluten-driven responses.

I have to clearly state here that I was doing a lot of this without support of a neurologist or a gastroenterologist. The neurologists I had seen would not take into consideration that I could not tolerate the meds, despite the fact that 30 percent of those with epilepsy can’t get help from medication, and in some cases, these meds are dangerous for them. This number has held fast since it was measured in the 1950s. I have documented it in other blog posts, so I won’t spend a lot of time on the 30 percent except to say that it exists.

Pain began to play a much bigger role in my life.  Pain in my nerves, joints, eyes, and muscles. It would strike after a seizure, or sometimes before, pushing the seizure the way a migraine can trigger a complex partial seizure. At first I had a hard time understanding what was going on with all this pain. It seemed to be getting worse despite all the precautions I took, all the yoga I did, all the chemicals I avoided. There were nights that I would twist back and forth in bed, trying to rock myself to sleep in the presence of all that pain. I had myself tested for Lyme disease . . . yet again.

Nothing made sense until I read an article that linked another autoimmune, Sjogren’s syndrome, with Celiac. This time I wasn’t wasting any time with explanations of symptoms. I simply went to the type of doctor most able to diagnose Sjogren’s effectively and asked for the test. Funny as it may sound, when this doctor confirmed the presence of this disease, I felt hope. Now I knew what I was working with, and like Celiac and TLE, knowledge is everything. Armed with an understanding of what triggers these responses, you have an opportunity to take control.

One of the things I did was to dive into the research again. This concept of autoimmune disease being woven into the epilepsy mix is not a new concept and there is more information out there as more articles and studies come out. If you have TLE and don’t display symptoms of autoimmune diseases, you are blessed, but there is one chance in three you will have one or more before it’s all over.

Here are some of the articles, and quotes that I found most helpful:

Seizures often complicate systemic autoimmune disorders through a variety of mechanisms. These include primary immunological effects on brain tissue (e.g., antineuronal antibodies, immune complexes, cytokines), effects of vascular disease (e.g., prothrombotic state, anticardiolipin antibody, emboli, vasculitis), metabolic disorders, infection, and complications of therapy. Understanding the pathophysiology of epileptogenesis in these patients may help provide therapeutic targets for specific patients and more broadly, for epilepsy patients without systemic autoimmune disorders. American Epilepsy Society 

What I gathered from this article was simply that seizures mess up the autoimmune system in some individuals, causing the failure and path to disease. That is a pretty simple, yet scary implication. In other words, seizures impact the entire body.

Recent research has suggested increased risk for epilepsy with systemic autoimmune disease, and indicated a two-way street in which systemic autoimmune disease may also increase the risk for epilepsy. An underlying proinflammatory milieu and autoantibodies may be involved in increased risk for epilepsy. Conversely, seizures may result in the release of pro-inflammatory cytokines, which may aggravate systemic immune disease, according to background information in the article. 

A meta-analysis suggests that epilepsy and autoimmune disease are linked: epilepsy was linked to 2.5 times increased risk of systemic autoimmune disease, and systemic autoimmune disease was linked to 2.7 times increased risk of epilepsy. Neurology Times

In other words, there is a complicated relationship between epilepsy and autoimmunity. While epilepsy may cause autoimmunity issues, it is also thought to act in reverse with autoimmune disease causing epilepsy. 

Autoimmunity is strongly linked to seizures. We may be overlooking a treatable mechanism in epilepsy patients,” said the study’s lead author Kenneth Mandl, MD, MPH, runs Boston Children’s Informatics Program (CHIP)’s Intelligent Health Laboratory. “We need to change how we think about clinical management of these conditions.” 

According to Mandl and Mark Gorman, MD, a Boston Children’s neurologist involved with the study, the risk association between epilepsy and autoimmunity suggests that both rheumatologists and neurologists should consider screening their patients for signs of the associated condition. Boston Children’s Hospital

And finally we get down to the heart of the issue, which I see as this: if you are diagnosed with epilepsy you should be immediately checked for autoimmunity. Your health should be monitored closely with this as a risk and any and all applicable symptoms should be taken seriously and checked out. If you can’t find a healthcare team that looks out for you on these issues, you will have to take care yourself by yourself.

I find it incredibly sad that individuals who have both TLE and autoimmune diseases are burdened with conditions that are often discounted by healthcare providers and required to “prove” their illnesses are real and not imagined. I won’t launch into the validity of pseudoseizures and how I think that the industry is ignoring what is really going on there, but that much negativity is more than I can handle today.

A sucker punch is a blow without warning. Autoimmune disease with epilepsy feels like a sucker punch. Don’t let it catch you off guard. Equipped with knowledge, you can avoid the pain and disorientation of that unexpected blow by watching out for it.