DECEMBER 4, 2024 – Epilepsy may be the orphan child of neurological disorders. Even though it affects more people (3.4 million in the U.S.) than multiple sclerosis, Parkinson’s disease, ALS, and cerebral palsy combined, it gets less federal funding per person than any of the others.
What’s the issue? Epilepsy may have a PR problem due to misunderstanding and misinformation about seizures, the major characteristic of the disease, according to the Epilepsy Foundation.
Doctors at the Epilepsy Center in Walter Reed National Military Medical Center’s Neurology Clinic in Bethesda, Maryland are trying to change that, noting that November was National Epilepsy Month.
“We have tools today to treat epilepsy that we didn’t have even ten years ago,” says U.S. Air Force Maj. (Dr.) Spencer Nam, an epileptologist. “And more people – including in the military – need to know how we can help them.”
Epilepsy, the neurological disorder characterized recurring, unprovoked seizures, “can be a career killer” for those in the military, Nam admits. “That’s why it’s important that we get the diagnosis right.” He and U.S. Army Lt. Col. (Dr.) Rahe Hiraldo-Delgado are excited about a range of new options to treat the disease by significantly reducing the number of temporarily disabling seizures.
“Not enough people are being referred for surgery,” Hiraldo-Delgado opines, noting that about a third of epilepsy patients cannot control their condition by medication alone. Traditional epilepsy surgery, while still the most effective treatment in many situations, involves the affected part of the brain. New neurostimulation devices and surgical techniques, however, are less invasive and are opening up a world of possibilities for patients who are not candidates for traditional surgery.
Neurostimulation is a process that uses electrical stimulation to change brain activity and reduce the frequency and severity of seizures. There are currently three main types of neurostimulation devices:
- Vagus nerve stimulation (VNS): Stimulates the vagus nerve in the neck, a nerve which is connected to the brain. This in turn stimulates parts of the brain and reduces the number of seizures. VNS is used to treat focal and generalized epilepsies in adults.
- Responsive neurostimulation (RNS): A device where two electrodes are implanted into the brain. RNS can detect seizure patterns and respond with electrical stimulation, thereby stopping the seizures early.
- Deep brain stimulation (DBS): A device with two to four electrodes implanted into the brain, which provides stimulation to the seizure network at regular intervals.
Both RNS and DBS are the newest devices, having emerged in the early 2010’s, with promising results. The tiny devices are permanently implanted in a one-day process, but first, a thorough evaluation is needed. This includes (but is not limited to) brain-wave recordings called electroencephalography (EEG) to determine where the seizures are emanating. The EEG records brain activity through small sensors attached to the scalp that pick up electrical signals.
So far, clinical trials have shown that a significant portion of patients implanted with an RNS or DBS experience an average of a 50 to 80 percent reduction in seizure frequency, with the effectiveness often improving over time.
But both doctors emphasize that epilepsy is about more than just seizures: patients often suffer from depression, anxiety, and cognitive difficulties which can eventually (for military, especially) impact their livelihoods. That’s why a proper diagnosis is essential, and working with a board-certified neurologist or epileptologist is highly advised.
They do, however, have practical advice for anyone with epilepsy and those who care about them:
- Know the motor vehicle laws in any state you enter which may prohibit you from driving.
- Take proper safety precautions, such as not swimming alone. Care should be taken with power tools, heavy machinery, heights, and fire, and should be avoided if your seizures are not controlled.
- If you are pregnant or planning to get pregnant, please make an appointment with your neurologist or epileptologist. Medications may need to be adjusted during pregnancy.
- Many anti-seizure medications can affect your bone health and interfere with birth control. Please talk to your neurologist or epileptologist to see if this is the case and what adjustments may be made.
- If you have a rash from your anti-seizure medication, please call your neurologist or epileptologist immediately.
- Epilepsy may affect other parts of the brain and can negatively affect your mood. If this is the case, please let your neurologist or epileptologist know.
- If you have seizures despite being treated by two or more adequately dosed anti-seizure medications, you may need a referral to an epilepsy center.
For more advice, check out the Epilepsy Foundation’s seizure guidance at www.epilepsy.com.
To make an appointment with Walter Reed’s Epilepsy Center, visit https://walterreed.tricare.mil/Health-Services/Specialty-Care/Neurology.
Story by Carol Kaplan
Walter Reed National Military Medical Center