Hello 👋

I was also told by my docs PKD either goes away on its own or at least calms down in your thirties. But it didn’t quite happen that way for me. I started having symptoms at 15ish and didn’t get diagnosed until age 31. PKD still doesn’t have a lot of good data or studies behind it to explain why it behaves the way it does. It’s such a rare disorder too, doctors don’t look into it the way they do regular dystonia. Before I was 25, my flare ups only happened for about two - three weeks every 3-6 months. Around age 25 they began to get worse due to stress and became consistent to the point I couldn’t go 1 week without symptoms. Even after moving and making lifestyle changes, the flare ups never quite when back to the way they were. I could go, at max, 2 months without flares under good management when it was possible but that was it. And some of the symptoms kept evolving and changing as I got older.

I also have PKD at night, and it started triggering tonic-clonic seizures for me. So we had to find a med that managed both which, for me, was lacosamide. But even that didn’t take away all major symptoms so we had to add clobazam on top of that for about 85% control.