Uncovering the Mysteries and Multidisciplinary Care for Autoimmune Epilepsy Patients
Autoimmune epilepsy is a disease in our body’s own immune system, which usually protect us, but instead attacks our brain, resulting in sudden seizures that often present as being refractory and associated with other neurological and psychiatric comorbidity.
Autoimmune epilepsy can be triggered by a simple respiratory virus, another auto-immune disease like rheumatoid arthritis, or cancer somewhere in the body. So, it often doesn’t respond well to typical epilepsy medications and often requires immunosuppressive therapy. And it is somewhat rare, affecting just 14 out of 100, 000 people (.014%) in the U.S.
UNM Health Sciences Center is a Level 4 Epilepsy Center, which means we take care of patients with complex epilepsy and offer them modern epilepsy diagnostic evaluation and therapies, as well as various epilepsy surgeries and devices. In our epilepsy clinic, we also offer dedicated multidisciplinary care for patients with autoimmune epilepsy and support for families.
Diagnosing and Treating Autoimmune Epilepsy
Clinicians need a high degree of suspicion to identify autoimmune epilepsy—leaving no stone unturned and no question unasked. Autoimmune epilepsy can result from many causes, such as viruses, inflammatory conditions, or associated cancer.. Finding the root cause is the starting point for planning effective treatment.
All patients start with a detailed discussion of symptoms, onset, course of the disease process and family history. From there, we conduct imaging exams such as MRI, PET scan, EEG, and cerebrospinal fluid analysis to search for the antibodies or the tumors that could have instigated the immune response. Patients also get bloodwork to identify or rule out infections or other inflammatory conditions.
Medication
For many patients, steroid medications such as methylprednisolone and prednisone can help suppress their overactive immune system and reduce symptoms. Often, patients end up requiring short-term or long-term immune therapy including various monoclonal antibodies or chemo drugs.
When cancer is the cause of autoimmune epilepsy (paraneoplastic subtypes of autoimmune epilepsy), we refer patients to our oncology colleagues to treat the tumor and continue helping with seizure management. Sometimes, we also need to consider surgeries or neuromodulation devices to help with seizure control.
Teamwork in the Autoimmune Epilepsy Clinic
Most patients with autoimmune epilepsy need ongoing care, with follow-up visits every two to four months with ongoing chemotherapy or immune suppression treatments. The team involved with this specialized care includes an autoimmune epilepsy faculty and a range of providers, such as:
- Pharmacist to manage medications
- Social worker to connect families with support services
- Nurse navigators to help coordinate appointments and complete paperwork
We also make referral to appropriate teams, including:
- Oncologists to provide cancer care
- Endocrinologists to provide hormonal disturbance management.
- Rheumatologists to manage inflammatory conditions
- Psychiatrists to help patients and families manage epilepsy-associated personality changes, memory challenges, and variations in mood or behavior such as depression, paranoia, or hallucinations
If you or your loved one has refractory epilepsy or autoimmune epilepsy, please contact the UNM HSC neurology clinic at 505-272-3160.
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