Does anyone with Polycythemia still have vertigo issues?
Doyle 1500: Does anyone with Polycythemia still... - MPN Voice
Doyle 1500
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doyle1500
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Hello Doyle 1500
Did you have vertigo when diagnosed? Has the vertigo faded and come back?
Is your HCT high?
Vertigo can be caused by things other than PV.
Hi,
I had pretty intense vertigo when first diagnosed and was one of my reasons fir seeing my GP 5 years ago. I continued to experience this but subsided once my blood counts were under control.
I do still have some limited vertigo but isn't much and not offern. However it seems it increase a little if blood counts rise. They can't pinpoint why this occurs but think at one time I was lacking in B12 so eat more bananas. It does still occurs but very occasional, it dies kick in at the gym when jumping up and down exercises i.e squate lunges the jumping high very quickly.
My consultant continues to keep an eye on me but the reasons are inconclusive.
Hi Doyle I also had pretty bad vertigo/dizzy spells at one point but didn’t seem to have anything to do with my blood counts. I now follow a low sugar diet and they’ve totally stopped. It could be totally unrelated to pv ie an inner ear infection or something but worth checking with your gp. Best of luck.
Hello Doyle, yes I have intermittent vertigo definitely linked to my condition. Started in a big way with my PV and continued now I have MF. Got the hang of it now though and take Stemitil when necessary and lie very still. Fortunately I am not working. It is a horrid thing but will pass eventually I find. The odd dizzy feeling is also a nuisance but not so debilitating. I am interested in the no sugar plan of Jasbak 22 - could be worth a try. I wish you all good wishes.
Linda
Hi Doyle, I don’t get vertigo very often since I was put on Hydroxurea a year ago. Hope yours goes away. Ann16
Generally ok bar two areas; firstly, since being diagnosed with PV unable to safely (confidently ?) go up a ladder and secondly, motorway driving - have to take great care on long, sweeping stretches of road and, for some bizarre reason, motorbikes passing like there's no tomorrow can affect my balance. Both have occurred only since being on Hydroxy & aspirin.
Hi, just come back from flying to Europe and back and had fun with vertigo yesterday! I have PV and feel dizzy on board as plane flies higher and banks. Not sure if it's PV related but my hubby was ok.
Hope it leaves you soon. A couple of years ago I got tablets from doc for it as I had it for two weeks and they helped. Might be worth asking gp.
Kindest regards Aime xx😺😺
Hiya
Clinical Nutritionist- Yes vertigo certainly is a symptom. This is because the increased Jak2 removes glutamate from the nerve synapse quite rapidly resulting in decreased nerve conduction. Taking benzodiazapenes can suppress nerve conduction even more making the vertigo worse.
