As a child, Micah would experience episodes where he would space out or become manic in class, leading his teachers to assume he had a mood disorder. He would have night terrors where his consciousness would expand beyond his body, believing he was connected to something otherworldly. He chalked it up to aliens or magic, but eventually moved on as these episodes stopped happening in his 20s. It wasn’t until he was diagnosed with breakthrough adult-onset epilepsy that he realized these childhood issues were likely his first seizures.
Micah was almost 50 years old when his seizures fully broke through. He had gone outside for an early morning stretch, blacked out, and woke up 25 minutes later sprawled over a bike rack with torn muscles in his shoulder and back. This was his first generalized seizure, also known as a grand mal. Over the next few years he would try 14 different combinations of medications trying to minimize his now constant seizures, but the side effects were extreme and the benefit was unsatisfactory.
Eventually, Micah’s doctors recommended he undergo surgery to install a responsive neurostimulation system (RNS). They cut out a section of his skull to install a tray which holds the device, implanting it just behind his right temple. For the first month after installation his RNS only recorded seizure activity, providing his doctors data to tune the device to his individual needs. Then they flipped it on, and it began sending counter-pulses of electricity into his brain to counteract his seizures in real-time. In the months since turning on his RNS device, Micah has had no significant seizures.
In this episode of the Major Pain podcast, Micah talks us through his experiences with breakthrough adult-onset epilepsy, as well as his RNS. When his epilepsy broke through life came to a screeching halt, severely limiting his functionality and productivity. Now that his physical situation has improved, he is beginning the process of dealing with the emotional and mental fallout of such a fundamentally challenging experience. Micah creates his own podcast called Seizure Salad, chronicling his journey with epilepsy while connecting with fellow patients and advocates. Find it at https://seizuresalad.org/
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