dizziness: Hi everyone Has anyone else with PV... - MPN Voice

MPN Voice

10,874 members15,189 posts

dizziness

Loubprv profile image
LoubprvVolunteer
13 Replies

Hi everyone

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

Thanks

Louise

Written by
Loubprv profile image
Loubprv
Volunteer
To view profiles and participate in discussions please or .
13 Replies
Peek-a-Boo profile image
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 profile image
LoubprvVolunteer in reply toPeek-a-Boo

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

Skyehope profile image
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 profile image
LoubprvVolunteer in reply toSkyehope

I agree. Worse after a bad night!

LittleLuna profile image
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 profile image
LoubprvVolunteer in reply toLittleLuna

Thanks !

saltmarsh profile image
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 profile image
LoubprvVolunteer in reply tosaltmarsh

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 profile image
saltmarsh in reply toLoubprv

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 profile image
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 profile image
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 profile image
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 profile image
LoubprvVolunteer

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

Not what you're looking for?

You may also like...

Lightheaded/Dizziness

Hi ... I have PV...has anyone experienced sudden lightheadedness/dizziness spells?? Kind of freaks...

ET causing dizziness?

Why does ET cause dizziness? I have had ET for about 10 years now, taking hydroxycarbamide and...
Joey71 profile image

ET Question (Dizziness)

I am 55 and was diagnosed with ET, jac 2 positive, few years ago. Platelets steady about 600. I had...
Bears23 profile image

Vertigo / dizziness and ET

I’ve recently been diagnosed with ET (triple negative on the gene mutations). I’ve been suffering...
TJER78 profile image

question about meds/dizziness

I am new to this forum. ET, jak 2 positive. Wondering if anyone had issues with their eyes (feels...
Bears23 profile image

Moderation team

Debinha profile image
DebinhaAdministrator
Mazcd profile image
MazcdPartner

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.