My boyfriend was diagnosed with left frontotemporal epilepsy four years ago, which the last neurologist he saw described as “severe.”
We weren’t together at the time — I didn’t even know him yet — but from what he has told me, he spent the first two years going back and forth to hospitals for countless neurological appointments and tests. Eventually, I think he just gave up on the medical system. One of the last things that happened was a doctor suggesting that he be hospitalized for antiviral treatment, despite the fact that no virus had been found in his spinal fluid.
We’ve been together for a year now, and I’ve watched his condition gradually deteriorate.
For a long time, he attributed everything to some kind of “neurodegenerative disease,” but that has never actually been diagnosed. The only neurological condition that has been formally diagnosed is his epilepsy.
He describes his deterioration as happening in “stages” or “steps.” He will suddenly get worse, reach a new baseline, and feel like he never fully comes back from it. His symptoms have become increasingly disabling: heavy and painful legs, short-term memory problems, difficulty speaking and finding words, among other things.
I’ve spent an enormous amount of time reading through this subreddit and looking for people with epilepsy who experience similar symptoms. The more I read, the more I wonder whether these episodes of deterioration could actually be happening after nocturnal seizures. He doesn’t have the kind of seizures most people picture — no shaking or obvious convulsions.
He has become extremely careful about his lifestyle because he is terrified of triggering another “step down.” Sleep, stress, hydration, everything. The last time it happened, he had simply forgotten to drink enough water before going to sleep, and by the following morning he felt noticeably worse again. Obviously, I can’t know whether the dehydration actually caused anything, but this is how sensitive and unpredictable his condition feels to him.
The part that worries me most is that he currently takes no anti-seizure medication and hasn’t seen a neurologist in several years.
I’ve booked an appointment with a new neurologist in two weeks because I desperately want someone to reassess his entire case from scratch. He has already been seen by several epilepsy specialists in Paris, France, so this time I simply booked an appointment with a neurologist in private practice who had availability. At this point, I feel completely out of my depth and I don’t know what else to do.
I watch the person I love suffer and slowly lose faith in his future. Making medium- or long-term plans feels almost impossible to him because he is convinced that another deterioration could happen at any moment.
It’s heartbreaking.
I love this man more than anything. I want to marry him. I want us to have a life together. But sometimes it feels like we’re trying to build that life on shifting ground, never knowing whether what feels stable today will still be there tomorrow.
I guess I’m posting because I’m looking for hope.
Has anyone here experienced anything similar — especially worsening neurological symptoms after nocturnal or focal seizures, or periods where you felt like you had permanently reached a “new baseline”? Did treatment eventually help? Did any of you spend years thinking you were progressively deteriorating, only to improve once your epilepsy was properly managed?
I would especially love to hear from people who were untreated for a long time before eventually finding a medication or treatment that made a meaningful difference.
I’m not looking for a diagnosis from Reddit. I just really need to hear from people who have been somewhere even remotely similar and made it to the other side.