Lightheaded/Dizziness

Hi ... I have PV...has anyone experienced sudden lightheadedness/dizziness spells?? Kind of freaks me out it’s so sudden. Just seems to come out of nowhere.

[Timjonze]

Yes I have started getting these. I can’t tell if it’s from my MPN or something to do with my ear

[piggie50]

Yea, I get dizzy spells. I have now discovered that this is due to the crystals in my left ear. Over the last couple of years I have tried to do Pilates classes and each time this has happened. The first time I consulted my GP but now I don’t bother. The Pilates instructor said it can happen when your head is lower than your heart. As in the rolling down exercise. I don’t do pilates any longer but think I am now susceptible with any sudden movement. When 8 get ‘the dizzy s’ I do the Epley maneuver. It’s on you tube. I find this usually cures it, until the next time! I’ve had it about 4 times over the last 3 years.

Not a nice feeling, Good luck.

Judy

[Hidden in reply to piggie50]

Thanks Judy ... I do know about the epley maneuver ... I’ve suffered with vertigo for years, it’s a family thing, so I do the maneuver for vertigo but this feels a little different.. this seems to have been going on for as long as I’ve been taking HU so that’s why I thought maybe it’s the med. 😪

[piggie50 in reply to Hidden]

Maybe you should speak to your Heam then. I’ve been on HU for 7 years so I don’t think I can blame that. 😊

[Hidden in reply to piggie50]

Yes I will ... I have a phone appt in a couple weeks and I’ll see what he’s got to say .. thanks!

[jillydabrat]

It’s a common complaint with OV. It was what kept me going to the GP before I was finally diagnosed.

[NewBloom]

Hi, I have PV and been suffering with vertigo since about 9 months before diagnosis which was about 8 years ago. It was one of the reasons why I went to my GP.. Since PV has been under control I only have mild vertigo. Had many tests and consultant is aware, saying nothing to do with PV, I gave up and decided I must live with it. Recently I've been referred to a Rheumatology as I have tingly/burning fingers and toes. A different consultant advised me to mention the vertigo and the occasional dull back ache I have. I'll post if anything found. Take care all xx

[Hidden in reply to NewBloom]

tingly fingers and toes, I had this and it got very bad - went to EVERY specialist in my city and they ended up saying 'I was old (63) expect pain'. As in pain where I could not walk?!?!?

I did lots of research and came up with - erythromyalgia, talking with my GP who confirmed. Another no treatment condition really. BUT - I challenged myself on another matter and this just about went away. (lots of bone broth, 4c a day to start with now 1 c every day to maintain) I was so surprised - but there we are! Other things have really finished it off - but must maintain - and not hard. Yummy drinks like kombucha, jun and water kefir. It has worked for me - and I was so pleased. Being able to walk again is magnificent. Good on you for taking notice of this early. I did not, it got very bad and it was not until I got the PV diagnosis that I found what was causing the foot/fingers issue.

This is just what I did, it worked for me - and maybe of interest to others. I hold no medical qualifications.

[Spirit123]

I’m sure this is a symptom of ET. I used to get lots of light headiness feelings. Now platelets are lower I don’t get massive headaches and only have the odd day where I feel wiped it and light headed. Speak to your heam department

[hunter5582]

You are correct to think that dizziness can be one of the side effects of HU.rxlist.com/hydrea-side-effe...

There are other meds that can have this side effect as well. Best to review with your care team as this can put you at risk for a fall or other accident if it happens at an inopportune time.

[Bluetop]

Yes. I have PV and have been taking hydroxy for about 5 years. I have a very brief dizzy spell a couple of times a year.