MPN Polycythaemia Vera / ET - headaches?

[CooperS1]

Hi, I was diagnosed out of the blue following a routine full blood count back in 2019 with MPN ET, which has since been amended to PV with ET. A complete shock as I had no symptoms! I’m on Hydroxycarbamide and low dose Aspirin which brought bloods back into a ‘normal’ range and recent blood test showed everything is still ‘stable’

To date still no real symptoms apart from feeling a little more tired some days - but that could be an age thing! lol

But recently (last couple of weeks) I’ve started getting some headaches - back of head and neck, which I put down to stress and tension….in the lead up to Christmas! as it is more of a tension type headache rather than painful, and have since read online that this can be a common symptom of PV?

Anyone else have this? What is the best thing to take for them?

Any advice much appreciated.

Thanks

[hunter5582]

Headaches are a frequently report issue with MPNs. It is a microvascular symptom. However, we can get headaches for other reasons just like anyone else. Best to check in with your MPN care team on this issue for the best advice.

[kamiilos]

Hi, I used to have prolonged headaches and that's how I found out to have MPN. It came up to be cerebral vein thrombosis caused by Jak2. I was prescribed Eliquise and it took me long time to fully recover and be headache free. Hope your headaches aren't caused by thrombosis. Wishing you Merry and peaceful Christmas.

[ainslie]

headaches can be a intermittent issue with MPN but can of also be caused by lots of other things physiological or psychological (eg Christmas etc). It’s maybe wise to check with your GP for other causes , when I have reported headaches to my local Haem he just shrugged and said common MPN symptom but worth telling them anyway.