ocular migraines

[Pounds11]

hi all. And happy new year. I just had hip replacement surgery on the 21st and today have had two bouts of ocular flashes lasting 20 minutes and ten minutes. Scared myself to death on internet. New hip and go blind!!!my bloods are a bit out of whack because of surgery. I’m on xeralto and hydrea one 500 daily. Any help about this? Thanks as always.

[hunter5582]

I have experienced visual migraines as a result of brain surgery. There are actually two types of migraine with visual effects, Visual Migraine (brain based) and Ocular Migraine (retina based). Visual Migraines typically affect both eyes. ocular migraines typically affect only one eye. Note that this type of migraine can be painless (acephalgic ) - AKA Silent Migraines.

Migraine can be a MPN symptom and do need prompt follow-up when they are a new symptom. The fact that your blood numbers are up as a result of the surgery might, in fact, be related to the migraine activity. Suggest prompt consultation with your MPN Care Team.

Meanwhile, here is a bit of information you may find useful.

lumenoptometric.com/blog/ey...

doughertylaservision.com/vi....

Note that both types of migraine are treatable. Hopefully, in your case the symptom will pass on its own. If not, know that there are treatment options available based on which type of migraine you are experiencing. I have had great success with a CGRP inhibitor (Ubrelvy). Please have confidence that you will get the bottom of this issue and find an appropriate intervention.

[Mazcd Partner MPNVoice]

hello Pounds11, wishing you well with recovery after your surgery, sorry that you had this awful experience of ocular flashes, probably a good idea to contact your haematologist for advice on this. Take care and best wishes, Maz

[Fremia7]

Hi,

I’ve had ocular Migraines in the past, and still have them on occasions.

I have found baby aspirin 0.75mg really helps and whilst taking that I hardly have them at all.

If I do get one, I just lay down on safe for circa 20 minutes with eyes closed and they pass.

Good luck with a way forward.

Matt

[KLCTJC]

Ocular migraines was one of the main things that lead me to find I had PV. However, I started having 1 to 2 a year 3 years before I was diagnosed and had a baby in that time so my labs were fine. They just got worse when my PV really set in. And since I was diagnosed I have had maybe 1 or 2 in 2 years. Mine were related to stress and no sleep because my labs were fine when I had the last two. And I don’t get much of a headache with mine. But the aura is always scary. And my labs when I presented to the ER the night I figured out I had PV were bananas high! So, may or may not be related at all. Hopefully you will not get another one. And I have faith you will not go blind😊. But I know how scary they are. Hope you have a Happy New Year.

[Pounds11 in reply to KLCTJC]

Thank you all for the information. I did contact my hematologist. So far I’m not having any more. Been pretty stressful around here so I’m hoping to calm down as I heal and quiet my mind. He suggested I go to the emergency room. Not an option a week out from total hip replacement to sit in emergency for 6 hours. Will contact my Stanford doc if they continue. Much health and happiness to all of you in 2023.

[EPguy]

Hunter has great info on the condition and MPN angle. I had regular migraines when I was young and healthy. But one of them was esp intense pain with actually beautiful bright psychedelic patterns. So it can happen to anyone, but with MPN it is potentially more significant.

[Susana7]

Visual migraines were one of the symptoms I had when I was diagnosed with PV in 2014. Once I started on daily low dose aspirin they disappeared. Hope yours disappear when the stress subsides and the bloods normalise.

[Pounds11 in reply to Susana7]

Thank you Susana. I seem to be over the hump so far. Happy new year and a peaceful one in all aspects. This forum is a god send. Marti