PV and Vertigo

[dladydi]

high MCV levels, polycythemia Vera, and vertigo. On aspirin and HU. Please tell me your experiences with these symptoms and how you treated them. Thank you.

[ainslie]

that’s a pretty general question and hard to answer without more info such as what your counts are and what treatment your getting

[dladydi in reply to ainslie]

I have had PV since 2018. Am currently on hydroxyurea (2 tablets daily) and low dose aspirin. I have developed an ulcer due to these meds so am on another med Lansoprazole. Now I have developed vertigo. My mean cell volume (MCV) levels are high at 120 (76-98 is norm). My mean cell hemoglobin (MCH) is high at 40 (24-33) is normal. Besremi will not be an option for me because of price. It was recently approved in Canada. Wondering about others experiences with vertigo. I ended up in the hospital with it. Had a CT scan to rule out blood clot. Thanks for replying Ainslie.

[ainslie in reply to dladydi]

High MCV on Hydroxy is normal, what is your Hct and Hgb

[Exeter21 in reply to dladydi]

My vertigo is very bad but a result of a bad cold & throat spreading to infection in inner ear it appears. Crystals in ear fluid creating balance problems . Lots of excercises of head movements & seasick tablets are helping but it comes & goes.

Massaging around neck of ear lobe & sinus area helps & acupuncture. And reducing stiffness in neck area by massage . However there has been a bad virus causing vertigo all over Europe & UK & many friends that do not have MPN are suffering from vertigo. Hence I keep an open mind that this is not my MPN to blame but definitely started from my throat infection . Julia UK 👍

[hunter5582]

Dizziness can result directly from the PV, as a side effect of hydroxyurea, or for an unrelated reason. Given the timing of when the symptom began, it would be reasonable to suspect a side effect, but that is not conclusive. Suggest you follow up with a MPN Specialist who can provide the best assessment of your situation.

[dladydi]

Thx Hunter. I do not have a MPN specialist. I go to a hematologist oncologist. I have an appt Jan 18th. I like to reach out for advice before going to my appointments. Thank you once again.

[hunter5582]

It is a good idea to at least occasionally consult with a MPN Specialist if you cannot have one as your primary MPN care provider. Most hematologists have little experience with MPNs due to how rare they are. Competent ethical doctors will support the decision for consultation with a more knowledgeable colleague. Here is a list that includes patient-recommended MPN expert hematologists in Canada.

[dladydi]

sorry Hunter. I did not receive your list.

[RoundTheWorld]

Is the vertigo spontaneous or does it follow a head movement? If the latter it could be coincidental to the MPN and its worth ruling out more common causes such as BPPV (caused by calcium chunks in your ear being dislodged and v unpleasant but relatively easy to treat). Having said that plenty of MPN patients do experience vertigo and dizziness, but worth ruling out simpler causes.

[Cat1001954]

hi I’m on my 4th episode of vertigo only treatment I had on 1st 2 were tablets you put under your top lip for 2 days later ones not as bad just get up and down slow I have ET

[dladydi]

thanks to all of you for your comments. Itis so beneficial to have a group that can offer their experiences. I am grateful

[Quitojohn]

Hi. I have PV now for almost 3 yrs. After 5 flebot. I started with HU but after 6 months I also had slight dizzispells and itching after showers. Now on Jakavi 2 x 20 daily. This feels better and with good results

[dladydi]

I wish I could change my meds. It is a struggle to get them to change.

[jon1972]

I had severe vertigo between the period when I believe I acquired PV and when I was diagnosed and started treatment. It eventually went away when my counts started to normalize. Before diagnosis I had a frequent bloody nose with blood the consistency of thick motor. They didnt even find it after I had a heart attack. A few years later my family doc referred me to an oncologist because of my high blood counts that had been going on for several years. At any rate, during that period of not being treated it was difficult to even stand up without feeling like i was going to pass out.

[dladydi]

What medication are you on now if you do not mind me asking?

[saltmarsh]

A lot of good information posted here. I will only add this - I've had PV for 5 years, taking HU for last 3. A few years ago I started having pretty severe bouts of dizziness. My doctor suggested more hydration might help. Even though I thought I was drinking enough, I began drinking 12 oz when I got up and 12 more before I walked the dog. I continue with lesser amounts during the day. And the other thing was I cut down on my alcohol intake - it's both inflammatory and a diuretic.

The end result: dizziness largely disappeared. I hope you can find such a simple solution. Good luck

[dladydi]

Thanks so much. I hope so too.