visual disturbance scintillating scotoma

[jane13]

Hi Y'All,

you know that flickering crescent in your eye that some of us get? I used to get them a lot before my PV was diagnosed and treated, but haven't had one for several years now.

However, I had one yesterday, which is odd as I now have MF and certainly don't have lots of blood cells - I understand that the visual disturbance is caused by high HCT. All I can think is that my abnormal clumping blood cells are the cause.

Anyone know more?

[mhos61]

Good morning Jane. Hope you get some concrete answer to this question.

Although I experience this, it is very rarely, maybe once or twice a year at most. The worrying thing is, it is something I’ve experienced for many many years before an ET diagnosis? Your idea about ‘clumping cells’ makes some sense!

I had an eye test last week and brought up the subject, as I always do. This is because I always have a different optician and it’s good to get various opinions. They all seem to think it’s associated with ‘silent migraine,’ I’m not convinced.

Mary

[Aime]

Hi Guys, I get them perhaps once or twice a month regardless of blood counts - as far as I know. I was told same by optician that it was an optical migraine. I also get them with my eyes closed which is weird.

Due to get blood counts checked next Friday so it will be interesting to see counts because I’ve had a few - with eyes closed- these last two weeks.

Kind regards Aime xx😺😺

[Rachelthepotter]

Hi Jane

I get the same thing: flickering black and white zig zags, or, recently, small patches. I think its due to a slight oxygen deficit somewhere in the blood supply to the visual system. Which could be the result of different processes in different MPNs at different stages.

I also had “splinter harmorrhages” ( painless black streaks) under my finger nails on and off for several years before the MF diagnosis, and occassionally since. That too is a result of things not being right with the peripheral blood circulation, so blood clots where it shouldn't and bits that need oxygen don’t always get all that they need.

All the best

Rachel

[beetle]

I used to suffer badly with migraines which I had stopped getting for several years. All of a sudden I got the visual aura as you describe and I was terrified that I was going to get another migraine but the aura just went away after about 30 mins. I have had several repeated episodes and have been referred to neurologist but my appointment is not until end of March next year! I should add that all of my CBC results are low so high counts are not my problem

Best wishes, Jan