Vertigo

[skipperL]

I have been on Hydroxy for a month, but have started getting dizzy spells even in bed lying down - has anybody else experienced this? My haematologist says any connection is unlikely.

[Mazcd Partner MPNVoice]

Hi Skipper, sorry to hear this, being dizzy is horrid. I have had a look at the Hydroxy leaflet for you and one of the less common side effects affecting approximately one person in 100 to one person in 1000 (0.1 - 1%) is dizziness, so it is possible, however, you should also go and see your GP about it to get this checked out, it could be something else, like an ear infection so don't ignore it. Hope it gets better soon. Maz

[skipperL in reply to Mazcd]

Thanks Maz - will do!

[tuffetgal in reply to Mazcd]

hi skipper. i have pv for 2 years now and began to have vertigo/ loss of balance and suspected i had an inner ear infection, because your balance is controlled by your inner ear. the audiologist ( ear specialist) took a large wad of ear wax out of my left ear and 50 % of my vertigo events went away. so yes. see an ent specialist or audiologist. it may be something simple. good luck

[skipperL in reply to tuffetgal]

Thanks for the good advice - if there's no improvement by Monday I'll be off to do battle with the GP's receptionist!

[Aime]

Hi , I had the dizzy spells especially when I moved in bed, felt sick,etc and it was put down to labrithyntitis, got some tablets and it did go away but horrible feeling.

As Maz says get it checked out. It's too easy to blame everything on our MPN. Kindest regards Aime. Hope you feel better soon.

[skipperL in reply to Aime]

You are so right - its all too easy to assume that every ill comes from either the MPN or the medication - although the miriad of symptoms do seem to proliferate. Will consult the GP after the weekend.

[millycat]

I had dizziness when my blood count went a bit low! As you have just started on Hu this could be. Possibility . When you start on hu your counts drop very quickly before stabilising..

[skipperL]

Thanks Millycat - you are so right about blood counts dropping initially - my Hb went down to 75 but I have just had a transfusion of two units of blood - so I can't blame that for the giddiness. Just hope it will clear up on its own.

[MichaelS]

Before I was diagnosed with PV in 1983 I was getting very giddy when I went to bed or tried to get up in the morning. In my case it was due to (what I call) heavy blood. Once I was being treated with Busulphin at the beginning it seemed to stop the giddiness. I hope the treatment works the same for you, but as everybody writes on here, do get yourself checked for ear problems and also see if you can have another blood test.

Best wishes from Michael

[skipperL]

Will do - thank you Michal

[violeta19]

Hi Skipper,I have recently been diagnosed with ET JAK2 and about 1yr ago i took a bout of Vertigo GP sent me to hospital they put me through their treatment process it was OK for a couple of weeks then got bad again went back to hospital for another session i felt it never really went away and i had dizzy spells frequently right up till i was diagnosed with ET i asked haematologist if this was connected to what i have now he said no but i have my own thoughts about it since i started medications it is getting a lot better not so dizzy its a terrible feeling i had to be very slowly rise in the mornings i also had to watch i didn't turn over too quickly in bed do hope you get some relief soon..Best Wishes Violet.

[skipperL in reply to violeta19]

Thanks Violeta, I haven't had any dizzy episodes for the past two nights - so maybe the vertigo has gone for a while. Good luck to you too.