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
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?
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
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)