Jim’s AE Journey

January 7, 2020

While living in Idaho Falls Idaho in October 2011 my husband, 44-year-old Navy Gulf War Veteran (1987-1992), started having occasional dizziness. January 2012 he started having multiple daily “episodes” lasting a couple of minutes… distorted vision, traveling goosebumps from right temple down right side of body jumping to left leg and traveling up left side to his chest where they would stop, hotdog taste in mouth, immediate perspiration that would soak him in a minutes time, fatigue and immense fear. He would have these episodes upwards of 20+ times every day.

The VA healthcare system couldn’t get him in to be seen by his PCP (that’s another issue I won’t go in to now), so we went to my family physician. The doctor ordered an MRI, labs and lumbar puncture. MRI showed little white matter. Labs/Lumbar puncture came back with oligoclonal bands and the doctor feared MS. He started my husband on prednisone and we went on a journey to find appropriate health care starting with a local neurologist. EEG showed no abnormalities and the local neurologist said “not seizures” and most likely migraines, but couldn’t offer more assistance. He felt MS probability was low and with the continuing daily episodes we sought out an Internal Medicine doctor. The IM doctor had no answers based on presenting symptoms and recommended we keep an appointment I had previously made with the Mayo Clinic in Scottsdale AZ.

May 31st 2012 my husband was seen at the Mayo for 10 days. After many tests, labs and another LP my husband was found to have GAD65 antibodies in his serum and his cerebral spinal fluid. He was diagnosed with a rare disease… Autoimmune Epilepsy associated with GAD65 antibodies. Treatment for this would consist of immunosuppressant therapy to combat the GAD65ab and anti-seizure medication.

We took this diagnosis and the Mayo treatment plan back to the VA healthcare system. After much red tape and botched visits, my husband started treatment in January 2013. Response to immunosuppressant therapy is best received the quicker treatment begins, so it is imperative to begin as close to symptom onset as possible. This is difficult when many doctors fail to recognize the symptoms as encephalitis not to mention autoimmune in nature.

Over the years since, the doctors have used the terms epilepsy and encephalitis interchangeably due to seizures being a symptom of autoimmune encephalitis and that treatment is similar. My husband has failed on immunosuppressant therapies (Solu Medrol, IVIG PLEX, CellCept, Rituximab) and all anti-epileptic medications with exception of valproic acid in which he’s been on an extremely high dose since 2016, but he still has breakthrough seizures.

After increasing hospitalizations for status epilepticus year after year, this past year (2018-2019) became immensely more difficult after numerous episodes of psychosis alongside the seizures. He was intubated for 5 days in April 2019. Desperate, in May 2019, doctors opted to try another immunosuppressant at our request. They chose Basiliximab upon Mayo suggestion. They also increased his valproic acid and added a 3rd anti-epileptic medication, Phenytoin. Seizures reduced to fewer than 15 daily, but they were still very strong.

In July 2019 we increased his Prednisone from 35mg to 50mg as this has helped with “flare-ups”  and seizure intensity in the past. His seizures became less severe through mid-September, lasting only a couple minutes in most instances and having fewer than 10 daily with exception to a hospital stay with status epilepticus and postictal confusion the second week of September.

Since September 24th he has had fewer than 5 seizures per day. This has happened in years prior when medication is increased resulting in a honeymoon effect, but today we feel very blessed to be noting this tremendous decrease.

He is quite healthy in all other regards. His short-term memory and executive cognitive skills have declined over the past 7-1/2 years due to the damage of the seizures and brain inflammation. Doctors say there is little documentation on the successful treatment of this antibody. They say no known cure, so they just try to make him comfortable by treating the seizures, which hasn’t been completely successful, but we are making small improvements.

GAD65 is intercellular meaning that it “hides” within the cell. It can be present in low titers but rarely present at high titers without severe disease. My husbands’ titers are off the charts “high”. Illnesses from GAD65Ab’s are not always the same. Is it a cause or is it a marker for something else? That is yet to be determined.

This has changed our lives on more levels than you can imagine. We moved to Florida full time in 2016 where he has better VA care not to mention that we needed to downsize due to financial constraints. My husband needs 24/7 supervision to protect him from falls and psychotic episodes, so I am now his caregiver. He struggles daily with the grieving process of the healthy man he once was, but we remain hopeful that doctors will find a way to restore his health.

By Toni
(Jim’s wife)