Suddenly dizzy: Hi all, I’ve got ET JAK2pos, was... - MPN Voice

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Suddenly dizzy

RazB profile image
RazB
10 Replies

Hi all, I’ve got ET JAK2pos, was diagnosed 17 yrs ago, take Hydroxy 1500mg 4 x week, 1000mg 3 x week. In last 4 days I have been very dizzy…I feel as though I’ve been on a boat all day, head rocking and keep thinking I’m going to fall backwards or sideways! Even at night when I roll over in bed I feel as though I’m falling out of the bed backwards! I drink a lot of water and don’t drink caffeine. Anyone else experienced this, I was thinking it may be unrelated to ET but thought I’d ask…thanks. X

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idi75 profile image
idi75

Check your blood pressure if you can, low blood pressure can make you feel like that.

saltmarsh profile image
saltmarsh

Your dizziness seems worse than the lightheadedness I experienced for a couple of years. I'm 76, pv for last 3.5 years on HU 1000/day. Mine turned out to be caused by insufficient hydration - even though I thought I was drinking enough water. Whether it's age, pv or the medication I don't know but my hydration problem and lightheadedness got worse over the last few years. Now when I get up in the morning, I drink 12 ounces of water, and have 40 by lunchtime. Also cut back on alcohol which is a diuretic. The lightheadedness has completely disappeared.

Given the nature of your dizziness I would consider consulting with a doctor if that doesn't help. Good luck.

hunter5582 profile image
hunter5582

Dizziness can result from either the ET or the hydroxycarbamide. It can also be caused by other issues like an inner ear infection. Assuming the other likely causes are ruled out, it is likely that the dizziness is due to either the ET or the hydroxy. Sometimes timing of when the symptom began is the only clue. You are on a fairly high dose of hydroxy and dizziness is listed as a common reaction. The recommendation is that you should tell your doctor if you experience dizziness. Your MPN care team can help you sort this out.

epocrates.com/online/drugs/...

drugs.com/sfx/hydroxyurea-s...

RazB profile image
RazB

thank you all god your help and support x

mhos61 profile image
mhos61

It may or may not be related to your ET or medication. One thing you might consider is ‘Benign Paroxysmal Positional Vertigo’ (BPPV). I had this a few years ago, and had all the symptoms that you mention. I remember the awful sensation you describe when turning in bed. I had it for about three months and was prescribed medication.

I would make an appointment with your GP. We can speculate but only a medical professional can diagnose.

21Rosie profile image
21Rosie

Sounds very much like BPPV. Had this on quite a few occasions. Google Epley manoeuvre and half somersault/Foster manoeuvre. This last one seems to work best for me and I don’t require any assistance to do it. It’s necessary to carry out a few times but it resets the crystals in the inner ear which cause the awful dizziness.

Good luck with it. I know how unsettling this woozy feeling is.

Minify profile image
Minify

it sounds like vertigo, which may have nothing to do with ET. Please have it checked out. I hope you get some relief.

Dan73 profile image
Dan73

I had the same symptoms and the Epley Maneuver worked for me. I used a version that was supposed to be for home use.

Lenten profile image
Lenten

Has your doctor checked you for Meniere’s? I get those symptoms when it.

a disorder of the membranous labyrinth of the inner ear that is marked by recurrent attacks of dizziness, tinnitus, and hearing loss

RazB profile image
RazB in reply toLenten

Not haven’t been to doc yet. As it’s still going on I will call doc tomorrow. Thank you for your reply.

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