Et headache dizziness

[shiela23]

Hi , is everyone having headaches every day and so dizzy like wobbly feeling… is this related to ET????

[Mostew]

You must be fed up with feeling like this . I notice you have had dizziness for some time , from previous posts.What has your consultant said.

Also what are your blood tests results like. It’s good to have a record of them so you can refer back.

[hunter5582]

Yes, both symptoms can be related to ET. They can also occur for other reasons. This is definitely something to review with a MPN Specialist. It may be that a more aggressive approach to reducing microvascular symptoms would help. Some people find that they need aspirin 2x/day to control microvascular symptoms. This is not something to try on your own. You need expert input on this and to help you sort out what is actually going on. Suggest a joint consult with a MPN Specialist and a neurologist who specializes in migraine.

[Daisey123]

I was like this for months the doctors kept asking me to go for blood tests. My platelets kept going up .So he referred me to hematology thats when they diagnosed me with ET

[ciye]

I have lighted handedness daily worse when lying down, headaches and heart rate that keeps dropping below 45 beats per min. Constanly fatigued...I think it's a combination of things, Drs see only their thing and not the whole.Now I have had my bmb haemo will sort referral for me.

[AFNRanger]

I'm in the VA system and was diagnosed with ET in 2001. I've pretty much been off and on dizzy and had migraines for 21 years. I was on a MPD listserv group years ago and the consensus was that our bone marrow is overproducing so it's causing some kind of fatigue which brings on the migraines and dizziness. Oversimplified answer I'm sure.

My platelets hang out in the High 600,000 range so I've been able to stay on baby aspirin 2x a day..

[shiela23 in reply to AFNRanger]

Thanks for your reply… so this are the symptoms of et … is it not because of the medication???

[AFNRanger in reply to shiela23]

For me,, I’m only on aspirin so it’s definitely a symptom of the disease.

[Mazcd Partner MPNVoice]

hello Shiela, so sorry that you are experiencing headaches and dizziness, really horrible for you. These are definitely symptoms related to ET and many people do experience them in varying degrees. They are listed on our website mpnvoice.org.uk/about-mpns/...

I would advise that you speak to your haematologist about this for advice on ways to help.

best wishes, Maz

[shiela23 in reply to Mazcd]

Thank you for your reply…. Yea struggling everyday…. What treatment your using now? Have you experience this?

[Mazcd Partner MPNVoice in reply to shiela23]

hello Shiela, I am on Hydroxycarbamide, have been since 2008 and was diagnosed with ET in 2003. Yes, I did experience dizzy spells and head pains and still do sometimes, though not as much or as severe as they used to be. My consultant advised that starting Hydroxycarbamide might help with these symptoms, which at times were very severe and I couldn't function very well, but the Hydroxycarbamide definitely did and still does help me, though I do know that they don't work for everyone. Best wishes, Maz

[EPguy]

I had real bad spinning, dizzy which seemed to get worse, or at least no better, on HU. Esp when lying down, it felt like being in an out of control spaceship.

Since switching to Besremi interferon I no longer have this particular problem.

[shiela23 in reply to EPguy]

That’s what I feeling also…. How was your platelets counts now what number are you now???

Thanks for replying.

[EPguy in reply to shiela23]

Here is my PLT from Dx to present. HU brought it down quickly and it's so far ok thru the Bes transition 4 months ago. So for me the dizzy does not seem related to PLT.

Note my provider has an unusually low top range at 360. My counts would be mid range with the 450 top limit we see more often.

Are your blood counts ok?

PLT to 6-22

[shiela23 in reply to EPguy]

My counts are okay but im so very ill very dizzy headache body pain… how long you’ve been diagnosed??? What is count you had?

[shiela23 in reply to EPguy]

What’s the highest platelets you’ve had?

[EPguy in reply to shiela23]

My Dx was Dec 2020, I likely had ET or PV since 2013 as PLT just started to rise then.

Highest PLT is seen in the plot I show here, just over 1000. (1080 max) My WBC (neutrophils) was also high just before my Dx, Actually my general Dr sent me to Hem because of the WBC not the PLT. But the Neut fixed itself before I started treatment. I think long covid may have been part of the neut problem.