Hi All - I have been experiencing dizzy spells for at least as long as I have been diagnosed. Sometimes when I stand up. Sometimes I just don't feel quite right or level as I put it. I have always linked this to my ET so have left it there. When I saw my consultant last they said it wasn't ET, and I now find myself undergoing a lot of tests with my GP, all of which are inconclusive and only revealing as I know I have high platelets. I still think it's an ET symptom and these tests are well a bit if a waste of resources as what are they even going to do about it in the end anyway?
Does anyone else with ET experience dizzy spells?
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MPNs are rare disorders. Many doctors, including hematologists, have little experience managing them. Not all providers are aware of the ways that MPNs can present. Optimal MPN care requires consultation with a MPN Specialist. Suggest that you seek consultation with a MPN Specialist. Here is a list. mpnforum.com/list-hem./
it was the team at Guy’s who asked my GP to look into it. I still very much think it’s the ET but am now having to have ECGs and 24 hour blood pressure monitoring. I did stop them referring me to a cardiologist, as my pulse and pressure are fine and normal
Doing the ECG and BP monitoring are doing due diligence. Your care team may also recommend doing a 7 - 14 day heart monitor just to be safe. I have done those before due to also having an arrhythmia. You may also be seen by an otolaryngologist to rule out cochlear/vestibular issues. If you rule out the other possible causes of the dizziness, then you will clearly be back to it being the ET. Suggest going with the flow of the assessment to get to the root cause.
Dizziness is an ET symptom. It's always good to double check that it isn't something else, but your doctor is mistaken that dizziness isn't a symptom of the disease. It can also be caused by some of the treatments for MPNs too.
Hi! I'm 44 and was diagnosed with ET 2 years ago. I suffer from dizziness and that general feeling of "not right" when I'm fatigued. My Haematology Dr arranged an MRI which showed nothing, waiting for an ENT appointment now. I agree that it is connected to ET and it is much worse when I'm fatigued.
I have ET and Jak2 , I take Interferon 90mcg every other week and baby Aspirin , I was on 90mcg every week but because of anxiety I had injections reduced to every other week . I now have Dizzy spells not really with it back so sure it’s the ET causing it . Going to ask to be put back on to every week meds . Hope you get some answers.
It may be, that like me, you have ET and AF (Atrial Fibrillation). AF can manifest as brachycardia (as well as tachycardia) and can show itself as syncope faints - that mimic that faint feeling when standing up that is often a symptom of low blood pressure..
My experience is that I've had both ET and AF for more than a decade and indeed am about to have my pacemaker replaced (my faints/dizzy spells developed into blackouts when my heart stopped - hence the pacemaker to take over when my HR dropped out)
Hydroxcarbamide (HU) has many possible side effects - most of which are minor and come and go. As mentioned ET can manifest some similar minor side effects anyway. Hopefully like me you can adjust to these changes and just carry on with a fulfilling life....
Dizziness and feeling light-headed are definitely symptoms of ET. They along with headaches, visual auras, night sweats and bone aches were the symptoms that sent me to a doctor. Three blood tests in a row showed my platelets were high. ET was confirmed after a BMB.
As soon as I started 100mg daily aspirin all these symptoms were alleviated.
yup, dizziness as well as fatigue seem to be only some of the side effects. Itching, burning in joints and general joint pain are just some of the others. The night sweats have stopped since going on the hydroxy. It’s difficult to tease out what symptoms are due to the diagnosis vs. day to day aches and pains.
I too have Et and severe dizziness. I was diagnosed with something called Nystagmus. My eyes went through every test known, and the conclusion was that it is my brain that is not signaling my eyes to work properly. My vision jumps, and you can actually see my eyes move. Not saying you have this, but I wouldn't have known if I didn't pursue having the tests. I too don't have a complete answer yet, except that it is not related to my ET. Don't give up until you get an answer that satisfies you. Good luck, I am hoping you find out just what is going on.
Hi I have ET diagnosed 2015 I too suffered fron intermittent dizziness after several tests I was diagnosed and treated for Possitional vertigo x Weird treatment but it worked and still works whenever the dizziness recurs .you need your GP to refer you to the correct ENT department Good luck I hope you get it sorted soon
I’ve got PV and have been experiencing the dizziness you write of for months even prior to getting a diagnosis. I’m convinced the docs have rather limited knowledge of the side effects we all experience. Maybe if I could find a doc who has a MPN I could get confirmation of these physical manifestations. Until then I’m choosing to believe my fellow blood relatives.
Hi, did you get an official diagnosis for an MPN since you posted here? The dizziness I have always had and put down to 'low blood sugar' then to ET once diagnosed, turned out to be PoTS once investigated years later.
I already had the ET diagnosis before this all started. I’m not on a waiting list to speak to a cardiologist as my resting heart rate is in the 40s. I firmly believe this is an ET symptom, but GP insists on the cardiologist, despite telling me it’s the second longest waiting list for referrals in the NHS
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