dizziness

[Loubprv]

Hi everyone

Has anyone else with PV experienced dizziness ? My FBC is fine.

Thanks

Louise

[Peek-a-Boo]

Hi Louise,

I too have PV and my bloods are “normal”. I get a dizzy head and feeling of fullness in my head nearly every day. I just thought it was a symptom of PV and/or the Hydroxycarbamide (I take 9 every week). I will be talking to my consultant about it at the next appointment. Maybe have a word with your care team as well.

All the best,

Robert

[Loubprv Volunteer in reply to Peek-a-Boo]

Thanks Robert. No sign of the dizziness today. All very odd!

[Skyehope]

Yes, I do sometimes. It doesn't seem to correspond with higher counts either so can catch me off guard a bit. I wonder sometimes if it strikes more when I've not been sleeping as well as I could...

[Loubprv Volunteer in reply to Skyehope]

I agree. Worse after a bad night!

[LittleLuna]

i too have PV and yes dizziness seems to be one of my symptoms. No correlation to blood counts. Most times it happens when I am laying down but occasionally anytime, sitting, standing.

Just put it down to PV life. Not on any medication for PV other than aspirin

[Loubprv Volunteer in reply to LittleLuna]

Thanks !

[saltmarsh]

Louise - sorry about the dizziness. I'm 76, PV for 3.5 years, and taking HU daily. I finally cured most of my dizziness by increasing hydration. I thought I was drinking enough but I was wrong. I now drink 12 ounces first thing in the morning before I walk my dog. Then another 12 ounces with breakfast. By lunch I have had at least 40 ounces. I learned the hard way that I needed it. Good luck. I know that it's an unpleasant feeling.

[Loubprv Volunteer in reply to saltmarsh]

I think you re absolutely right. I aim to drink 2 and a half litres a day but don’t always manage it! Those are probably the days when I experience dizziness. I m 69 and have had PV for 15 years so who hoo you can look forward to your 90th birthday 😀 thanks so much for reminding me to drink more…..x

[saltmarsh in reply to Loubprv]

I never had this problem before PV so wasn't used to being disciplined about hydration. Whether it's the pv or the HU or my age I don't know. But, like I said, more water seems to be the answer. Plus I've added a powder called Propel which has electrolytes. Also was advised to add a bit more salt since I generally don't use any. Good luck.

[Melior]

Hi Louise this was one of my symptoms before diagnosis. I still get it occasionally it's more of an all over dizziness if that makes sense.

[russkatt]

I get light headed sometimes and more often I have kind of a light pressure in my head. My numbers are all good. I just figured it is either a side effect of PEG or simply the disease itself.

[LittleLuna]

So yesterday I had one of those weird, vision, dizzy turns. Started with what i call auric painless migraine where left eye had white flashing vision, about 30 mins later I felt weird eye sensation which I can only describe as feeling like my eyes were physically trying to cross. Dizzy/woozy for couple of minutes then all ok again.

Strange feeling

[Loubprv Volunteer]

Hi I used to get that before I was diagnosed with PV. Next time it happens try drinking half a litre of water and eating a biscuit or a banana x