Title: Anyone with PKD experience brief dissociation or “unreal” feeling immediately after an attack? Hi everyone,
I’m 22 years old and I’ve had Paroxysmal Kinesigenic Dyskinesia (PKD) since I was around 13–14 years old.
When I was younger, the attacks were quite severe and difficult to manage. Over the years, they’ve improved a lot. Now I can often go months without an attack as long as I avoid my triggers (standing up too quickly, sudden movements, etc.). If I pause before making a sudden movement, I can sometimes prevent an attack altogether.
The movement symptoms themselves aren’t my biggest concern anymore. What worries me is something that happens immediately after an attack.
Right after the movement episode ends, I get a very intense feeling of dissociation/derealization that lasts about 4–5 seconds. During those few seconds, I feel mentally detached or “unreal,” and I sometimes notice my eyes struggling to focus properly. After that passes, I’m left with a mild headache, heavy eyes, and a drained feeling for a few minutes before returning to normal.
I also have generalized anxiety, and I can sometimes experience mild dissociation during periods of anxiety or excessive health-related worrying. However, this post-PKD feeling is different. It’s much stronger, always occurs immediately after an attack, and lasts only a few seconds.
This has been happening for about 5–6 years, while my actual PKD attacks have become much less severe.
I’m wondering:
Has anyone else with PKD experienced something similar after an attack?
Is a brief feeling of dissociation or difficulty focusing your eyes something you’ve noticed?
Could this simply be a post-attack effect, or is it something I should discuss further with my neurologist?
I’m not looking for a diagnosis—I’m mainly interested in hearing whether anyone with PKD has had a similar experience.
Thanks in advance.