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5 Replies Latest reply: Jan 1, 2014 8:58 PM by flower79 RSS

Is this part of PV?

Laflemke Registered Users
Currently Being Moderated

Hello,   I was Diagnosed with PV about a year or so ago.  I have found that as my blood count goes up, not only do I have the headaches, but I also have these sharp pains on my scalp from time to time and hot flashes too.  Just wondering if anyone else has anything like this. 

  • Re: Is this part of PV?
    memy Registered Users
    Currently Being Moderated

    LaVae,

         Hi! It's mimi from the discussion boards of the LLS. I was just perusing around our site and came across this question--not answered! I have never seen this before--but I can kinda answer your Q! I would have to say yes to whether or not your headaches and pains are from the PV and definitely the hot flashes are related to PV. There are all kinds of different symptoms associated with PV and I know that some of us do get headaches when our counts start getting high. And generally after a bleed, the headaches go away or at least ease up. My main symptom from PV is the horrible pruritus (itching) especially after a hot shower. I've never been bothered by the headaches, but I do have the hot flashes and night sweats--I am 62 though and that makes a difference as far as if you are a lot younger than I am. Coz, I'm still bothered by the hot flashes due to menopause! Anyway, hope this answers your question or helps you out to some degree. Ciao bella,...............mimi

  • Re: Is this part of PV?
    DEE11 Registered Users
    Currently Being Moderated

    All these symptoms are related to PV , its a great idea to get copies of all your labs.What is your HCT ?As your being treated you headaches should ease/Are they putting you on any meds?Hope you get this and find your way back .

  • Re: Is this part of PV?
    Leigh Registered Users
    Currently Being Moderated

    Hi I read your post about the hot flashes.  I was diagnosed with PV about three weeks ago.  I'm a female and just turned 40 a month ago so I'm on one of the younger ones diagnosed with PV.  Looking back, I may have had what your describing but at the time didn't know that I had PV or that it could be a symptom.  My husband and I were having dinner at a restaurant and all of a sudden I started to feel very nauteous, like I needed fresh air immediately.  This all came on within about two minutes and within another minute or two I was drenched in sweat.  I just sat outside and took some deep breaths and within about 15 minutes I was feeling better.  Is that similar to what you experienced?  Is it a symptom of PV?

     

    Warm regards,

    Leigh

    • Re: Is this part of PV?
      DEE11 Registered Users
      Currently Being Moderated

      Leigh ..i have trouble with body temp regulating.Guess its part of teh disease.Please come join us at "living with pv/et .mf" Just look at the blood cancer discussions and you,ll see it ..i hope let me know if you have any probs finding it.Juts figureed you might want to meet the rest of us .HAPPY NEW YEAR !!!Dee

    • Re: Is this part of PV?
      flower79 Registered Users
      Currently Being Moderated

      Hi Leigh,  i'm Sarah from the 'living with pv/et/mf'' that Dee was telling you about....... here is the link, hope you join us there! There is where most of us meet and share with each other. Hope to see you there, same site, just a different link is all...... my username is (flower79)

       

      http://community.lls.org/message/169050#169050

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