involuntary blinking since the age of 10
im 23 years old and have had repetitive blinking/head movement since I was around 10 years old.
It started as what seemed to be exaggerated blinking in one eye. it would occasionally switch eyes, but was only one eye at a time. over the years it gradually involved both eyes and now often includes head movement as well. family members noticed it when I was a child because it happened frequently enough that people would ask what I was doing or think I was winking at them.
the hardest part to explain is that there is a visual component to it. When I’m looking at an object (my phone is the easiest example), I often feel like I need to blink while moving my eyes and/or head in a way that “captures” the edges or corners of the object. I know that sounds strange, but it’s the best way I can describe it. this applies to anything in my field of vision. the corner of a room, a slight bulb, anything at all i can see.
one thing that may be relevant is that the “capturing the edges” component seems somewhat separate from the original blinking. the blinking started when I was around 10 years old. the awareness that I was trying to visually “capture” the edges or corners of objects came 3ish years later. now, if I intentionally blink without doing the edge-capturing movement, it can feel incomplete or uncomfortable afterward, and i find myself repeating the movement. the feeling of something not being “right” seems to be specifically related to the edge-capturing part rather than the original blinking itself.
the blinking/movement is not voluntary. if I try to suppress it, I become increasingly uncomfortable and eventually end up doing it repeatedly afterward. but that too is involuntary, like it has to be done and my body is just doing it.
the symptom has fluctuated over the years. there have been periods where it was present almost constantly and periods where it was less noticeable. Ive spent years trying to notice patterns or triggers (stress, anxiety, life events, etc.), but I have never been able to identify a consistent pattern. sometimes major stress or traumatic events seem to make it much worse. for example, after a traumatic event last year it became extremely severe for several weeks. but the symptom existed for many years before that and has also occurred during periods where there was no obvious trigger. because of that, I have never been able to confidently connect it to stress, anxiety, or any other specific factor.
it causes headaches and bad eye dryness because of the repeated “hard” blinking. if has also affected eye contact and social interactions for years because I often look away or look down so I can let the movements happen without people noticing.
around 2018, I told my psychiatrist at the time about this. I had some form of brain imaging done (I don’t remember exactly what type) and what I believe was an EEG/sleep study where electrodes were attached to my head. i was told both were normal and no explanation was found.
I’m not looking for a diagnosis. I would just like guidance on where to look next or what type of specialist might be most appropriate. every doctor I’ve seen has found it funny or amusing than concerning and has decided that it isn’t impacting my daily life enough to figure out what’s going on. it’s been over a decade that i’ve been living with this and it’s getting increasingly painful, where i have horribly dry eyes all the time and my head hurts so much.
- wanted to add that it’s never both eyes at the same time. it’s one eye right after the other because that’s the only way i can capture edges each time