Annoying dizzy spells with pv

[Jasbak22]

I've recently been diagnosed with pv I've had so far 7 venesections and my levels seems to be going in the right direction except my playlets which are slowly rising, Ive been feeling dizzy over the last few days and just wondered if anyone else experiences anything like this?

I stay well hydrated at least 2 litres a day but wonder if there's anything else I can do to help this symptom. Thanks in advance.

[Aime]

Hi jasbak22,

Sorry to hear of your symptom of dizziness. I have PV and have been dizzy when my blood is needing taken off but also after venesection when my iron has been low.

I think you have to listen to your body and rest and eat healthy foods but with treats- you deserve them! You are doing the right thing in drinking plenty fluids.

If the dizziness continues might be better checking with your GP that you haven't got an ear problem or something else that would make you dizzy as its too easy to blame PV for everything!xx hope you feel better soon. Kindest regards anime 😺😺

[Paul42]

Hi

As Aime has said low iron would certainly have the ability to cause dizzy spells.

You could ask what your ferritin count is, if its really low and your blood counts are well controlled they 'might' allow a short burst of iron to boost you. But they have to be really careful as this can ruin the work done to lower your counts.

All the best

Paul

[Jasbak22 in reply to Paul42]

Thanks Paul.

[catkinspolymer]

when my platelets were high above 1000 I used to get sudden dizzy spells .

Town crier Et evolving PV

[Jasbak22 in reply to catkinspolymer]

Hi my platelets were 712 on the 9 Jan and 830 on the 16 so could be near the 1000s if they continue to rise as they have been.

Thanks.

[catkinspolymer in reply to Jasbak22]

I dont get them now with platelets always below500 . Today they were 180 so i shall ease off the HU .

I have had this ET condition for 30 years and am now 72 and lead a reasonably normal life.

all the best Town Crier

[jillydabrat]

Hi Jason, unfortunately dizzy spells are one of the symptoms of PV. It was what made me first go to my GP, as well as the burning feet. To me it felt like something suddenly pushed me sidewards and I would stumble. Unfortunately it's so bad with me that I had to buy a rollator to go out as I was so afraid of falling or I cling to my hubby's arm. Hydroxy has helped a little but not much. I don't think there is anything you can do or take, it's just part of the illness.

[Jasbak22 in reply to jillydabrat]

Hi mines more of subtle lightheaded feeling so not as bad as yours, I'm 45 so no need for a rollater for me just yet. Good luck.

Jason.

[jillydabrat in reply to Jasbak22]

Hi Jason, I am only 55 so using the rollator is very degrading and I am sure people give me sideways looks but it gives me security so I have to put up with it. Good luck with your illness and I hope you keep visiting the site as it's the only place you can get advice from people who are going through the same problems.

Jill

[Jasbak22 in reply to jillydabrat]

Hi Jill yes good luck you too. I check into this forum everyday it's nice to have such a great support network. Have a great day. Jason.

[NewBloom]

Hi, I have the same symptoms! And had PV for 4 years. Had plenty of checks at the hospital and found nothing wrong. Had permanent dizzy spells when first diagnosed but once counts were under control they pretty much disappeared. I do still have them from time to time but seems to be when my platelets are elevated and nowhere near as bad as they were. I've come to the conclusion I'll just have to live with them coming and going until they find out more about this condition. Please don'the panic I'm sure it's all part of PV. Hope this was a little helpful and you feel better soon x

[Jasbak22 in reply to NewBloom]

Hi my dizziness is quite subtle more light headed than dizzy, but I did have a bad spell of this about 2 years ago before I was diagnosed with pv unfortunately much like yourself they never worked out what it was. Thanks for the advice it's more an annoyance than a worry but thanks for your reply.