Vertigo and ET

[FMMM48]

Do people with Essential Thrombocythemia experience vertigo and what has it meant or signalled in the progression of the illness

[Eadaoin]

I would check it out with your GP. I’ve had ET for 20 years and very occasionally had vertigo. We need to take care not to think all our health problems are caused by ET. It’s natural to do that because it is a rare condition and we don’t usually have anyone to share symptoms with. For years I assumed certain problems were as a result of ET and they turned out to be heart related.

[FMMM48 in reply to Eadaoin]

Thankyou Eadaoin for your reply. I totally agree that ET can explain away many things, however I had vertigo coupled with burning feet muscle pain and the first rise in my platelets. I saw a physian at the time, he tested me for everything. Because of my platelets he put me on aspirin and believed it could be a type of migraine but not simply vertigo. On his suggestion he asked my G/P to monitor the platelets and other odd blood results and refer accordingly. The rest is history. I am JAK2 positive all this was 5 years ago.

Hope you keep well.

[TJER78]

Hello,

I’ve recently been diagnosed with ET (triple negative on the gene mutations). I’ve been suffering from fatigue and an almost permanent dizzy sensation,that is similar to vertigo symptoms.

I’ve been told by my haematology team that the dizziness is not related and have been sent to a neurologist, who’s treating it as a type of migraine known as vestibular migraine (as I do have a history of migraine). The medication he’s given me makes no difference and on my last visit the neurologist suggested the dizziness/migraine could be related to the ET.

I then posted on here a while ago and found lots of other people saying they do suffer the same or very similar symptoms: healthunlocked.com/mpnvoice...

So when I went back to see the haematologist I mentioned it and he said that it is actually likely to be related to ET. But the only way to find out for sure would be to have treatment to bring the platelet levels down, but that may come with its own side effects.

My platelet levels aren’t that high – normally in 670 to 710 region - but the haematologist says symptoms don't necessarily correspond to platelet levels.

So for now I'm just putting up with it. Have good days and bad, but lots of water and as much exercise as I can manage seems to make a positive difference.

Please do keep me posted with anything you find out along the way.

All the best

Tom

[FMMM48 in reply to TJER78]

Thankyou for responding Tom. My platelets have been fluctuating up to 900 and down to 700 of late.

I do believe that MPN illnesses are still holding secrets and unless research continues it will be a slow unfolding of those secrets.

It is important to believe that we are all individuals and so illnesses and treatments will be individually too

I will keep you informed if I get further information

Florence

[Wyebird in reply to TJER78]

Gosh you are doing well with your platelets that level and no meds. I’ve ended up in A and E a few times to be told my platelets are in the low 500. I sink like a stone if the go over 450

[stillkicking]

I have ET JAK2 negative and negative to the one other mutation I was tested for..

Vertigo, bad headaches and frequent episodes of scintillating scotoma were some of the strange collection of symptoms that finally persuaded me to see my GP a year and a half ago .. who ordered a full blood count... and the platelet count was found to be above 660 or so. Over the next 2 or 3 months further tests confirmed that I had ET. When I was put on low dose aspirin the episodes of vertigo, the scintillating scotoma, and meigrane like headaches went away, and stayed away for nearly a year until my platelets got above about 1100. Now I am on hydroxyurea, the platelets are on their way down, and things are improving again.

My first haematologist said that my "headaches could be caused by anything", and claimed that ET patients were usually symptom free. My current haematologist does acknowledge that high platelet levels can cause symptoms! Hooray!

As Eadaoin wisely advised, it is important to take care not to ascribe everything to ET and to check things out with the GP, but it is also very interesting to see Tom's experience, which does have strong parallels with my own... right down to the platelet count that I had when these things first began troubling me!

Hope things go well for you and you are able to get sensible answers from the medical people you deal with.

Peter

[FMMM48 in reply to stillkicking]

Thankyou for reply Peter.

The MPN population are victims of its rareness and lack of understanding of the medical profession.

Keep well.

Florence

[mhos61]

Hi Florence,

I had the odd bout of unexplained dizziness/vertigo prior to my diagnosis of ET. I just put it down to ageing.

However, during the last two years of treatment (hydrea/aspirin) for my ET I’ve had no episodes. I believe now it was a symptom of undiagnosed ET.

Mary x