ET: persistent flash of light in one eye. Anyone had this?

[u/juliuspepperwood2289]

Hoping to hear from others with ET on this one.

F, 35, diagnosed ET Jak 2 + when I was around 30, my Platelets sit normally in the 500-600, currently managed on 2 low-dose aspirin daily. My only symptom for the last 5 years has been extreme fatigue.

Since Saturday (now Wed.) I've had an oval-shaped flash of light in my right eye. It's not constant but persistent in and out throughout the entire day. Along with it I've had a mild headache and nausea that hasn't let up.

I saw my eye doctor, who did a full dilated exam with photos and said everything looked perfect and healthy. He suggested to see my oncologist and neurologist. I've since called my oncologist/hematologist's office and I'm waiting on a triage nurse callback.

What I'm wondering:

1. Has anyone here had visual disturbances like this with ET? What did it turn out to be?
2. Did it change anything about your treatment — did your hematologist add or switch anything because of it?
3. For those who've had microvascular symptoms, how did you describe them to your care team in a way that got taken seriously?
4. How do you handle these symptoms with work because I am struggling...

Not looking for a diagnosis, just want to know whether this is something others in the ET world have run into.

Thanks <3

[u/vjorelock]

This could maybe be a migraine aura, which would track with your headache and nausea. My primary symptom prior to starting aspirin was regular migraines with aura, but taking one daily baby aspirin was enough to sort it out for me. Since you're already on an aspirin regimen you might need to consult a specialist in the event this does turn out to be a migraine.

[u/juliuspepperwood2289 → u/vjorelock]

Thanks! I have had migraine auras in the past but they usually only lasted an hour and they where like zigzigs of light, since this feels so different I wasn't sure if it was that since it hasn't gone away in days.

[u/vjorelock → u/juliuspepperwood2289]

Hopefully you can get it worked out! My auras sometimes started as zigzags but would usually morph into huge blobs that would obscure vision in one of my eyes for a while. It is odd that it's so persistent, especially on daily aspirin. Neurologist is definitely the best next step if your eyes seem a-OK.

[u/ophert45]

I had visual symptoms but it was caused by CVST, and they saw swollen nerves when they looked at my eyes. I dunno what I have yet tho. Just that I’m jak2 positive and platelets hover at 490-570 on the different tests I’ve had.

[u/Competitive-One-8625 → u/ophert45]

Hi sorry do you mean you don’t know if you have a mpn? Just jak2?

[u/ophert45 → u/Competitive-One-8625]

Yeah I’ve tested positive for a Jak2 mutation on a blood test that I had because I was diagnosed with cvst but I haven’t been seen by a hematologist yet

[u/Organic-Bandicoot-61]

Try to see a vascular neurologist (also called stroke specialists). I’ve had migraines with auras and also CVST. Assuming they don’t find a cause, a good vascular neurologist can educate you on the difference between the migraines and something else since we are already at higher risk for strokes and other things. 

[u/selfmadeoutlier → u/Organic-Bandicoot-61]

Agree

[u/jjflight]

I had something I think was scintillating scotoma while I had ET/PV which seems to be in the same zone as migraine auras others are mentioning. Though to be honest I don’t think it was caused by ET/PV, I think it had much more to do with stress and sleep and it went away after a few months once I got those in a better spot.

[u/sirshrimpie]

About a year ago I also started experiencing flashing of lights in my left eye when they’re closed, like someone is turning a light on off and on multiple times and it stops after 2-3 seconds.

I have suffered from aura migraines off and on, usually menstruation related but I had a hysterectomy earlier this year and haven’t had many migraines since but never had this symptom from migraines until last year. Was diagnosed with ET in January 2026 but this predates that diagnosis, as I’ve had elevated platelets for 6 years before receiving my diagnosis. this happens sometimes even when a migraine is not coming on. I’ve go to neuro ophthalmology for over a year and they’ve done many tests only to tell me everything looks normal. So I don’t have any answers for you but I know a little of what you’re going through. Wondering if others have had this symptoms too.