[chiara]

Hey, hi! My name is Chiara, I'm from Italy, (31yo) and I just found out about this forum thanks to ChatGPT.

I guess I'm 10 years late to get a reply but I'd still like to share my story:

My parents noticed something was off with my coordination and balance when I started standing up. I went to several specialists throughout many years, and I was finally diagnosed with PKD around 13.

I was treated with carbamazepine (and other drugs before that) for many years until I had to stop for medical exams and side effects.

In my experience, puberty and teenage years have been the worst time: I used to have many episodes per day, long and intense. I was still in the trial and error phase with the doctors, diagnoses, and treatment, which didn't help.

After uni, it got better (more sporadic and less intense episodes). It became more manageable, even if with the limitations of the condition.

I'm now in my 30s and I still get a few light episodes per day (usually in the morning) with swings based on the menstrual period, weather, stress and other triggers. I switched to caffeine tablets (after side effects from carbamazepine and a conversation with my neurologist) and it has the same benefits and make the days manageable.

So yeah… this was my bit, I guess. It is nice to see that other people know what it's like