ET Question (Dizziness): I am 55 and was diagnosed... - MPN Voice

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ET Question (Dizziness)


I am 55 and was diagnosed with ET, jac 2 positive, few years ago. Platelets steady about 600. I had an incident about 8 months ago, poss TIA, ran a lot of test but unable to confirm anything, stroke, etc. I have had visual issues since, including dizziness and headaches. Feel like vision is blurry, Headache pain feels as if it was behind my eye. Anyone have similar experiences and what did you do? Currently not on meds, just aspirin.

13 Replies

You sound just like me, I've had multiple tests done, but shows nothing is wrong... severe headaches that last upto 2 weeks... debilitating..... I just wait them out now... they don't happen all the time , thank God.... hope you feel better soon xx

Bears23 in reply to wormwood

Thanks for taking the time to respond; hope your headaches disappear! Have you been checked for migraines? I was taking meds for migraines for a while.

wormwood in reply to Bears23

I dont suffer with migraines... they dont know what causes them, but I also have an autoimmune problem called Behcets disease. So I think.its related to inflammation.... I just have to wait it out and take painkillers... thank goodness they're few and far between... hope you get yours sorted .... xx

Hi Bears23

ET affects us all in different ways, but I would make a couple of suggestions.

1. Insufficient hydration is a common cause of dizziness / headaches - particularly when you have an MPN. I aim to drink 2-3 litres of water per day which seems to work for me.

2. Don't assume that everything is ET related. If you have frequent headaches / dizziness see your GP. It may be caused by something else entirely

Hope you get it sorted soon

Bears23 in reply to Ovingite

Thanks for taking time to respond. I am also drinking more water than I ever have before.

Hi I’m also 55 and experienced bad headaches and dizziness. My platelets average is much higher than yours, only on aspirin and watch and wait. My haem said it’s probably migraines. I’m going to get some stronger painkillers to see if that helps.

I wish you well on your ET journey

Thanks, they had me on migraine meds for a while, I can deal with the headaches, but dizziness is driving me crazy. Wish you the best, as well!

Hi, I'm 69 ET Jak2 + and have had all of the symptoms you mention. I just take tylenol and wait them out at this time. The dizziness and headaches seem to be more frequent and severe in hot weather and after exercising. Staying hydrated does help, it seems. Good luck to you.

Bears23 in reply to Meatloaf9

Thanks for your comments. Maybe living in Florida isn’t helping. 😏

I guess I'm lucky none of mine are that bad. I do get light headed but it is from extra low iron levels and low blood pressure. I do get occular migraines that can last for an hour or so.

Keep us updated!

Bears23 in reply to Johnsb

Thanks for taking the time to respond.

This is so familiar, I had everyone of these symptoms before diagnosis. In 2015, left arm went into a spasm and I couldn't straighten it for months. Started feeling dizzy, episodes where it felt I had a glass bowl over my head and sound became muted. Periods where I struggled to focus, had multiple vision, Or went blind in my right eye. Constant headache, mainly left sided.

Nearly all of it got better once I was put on the hydroxy. Still have headaches but amitryptine has helped with that. The arm thing was probably a stroke, still waiting MRI results. But feel much better on the meds. Even the fatigue is improving. I'm on Hydroxy and aspirin for ET Jak2. Things do get better once the treatment starts working. Good luck.

Thanks for the update, appreciate you taking the time to respond.

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