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Has anyone had the symptoms of heart palpitations?

Posted , 7 users are following.

agentdove
agentdove

Good Morning all

I was diagnosed with PV ruba following a hysterectomy in 2008. Since then I have had regular VS to control my blood levels and symptoms.

A couple of years ago I started to suffer with strong and distressing heart palpitations. These would happen frequently following VS also. I had a 7 day ECG fitted that showed I was tachycardia.

All other tests have proven negative for structural abnormalities.

My other symptoms such as headaches, fatigue and so on are often dismissed as I also suffer ME/CFS. Unfortunately much of my pain and symptoms are blamed on my ME/CFS and never investigated.

So was wondering if the heart issues I am experiencing is common to PV and if so have any of you had successful treatment?

Thanks for reading and have a great day x

0 likes, 9 replies

9 Replies

  • Orseblue
    Orseblue agentdove

    Posted

    Hello, I was diagnosed with PV early last year but was told after investigation that my levels been bad for many years.

    I have had high blood pressure since "my blood levels was reading high".

    No idea if its linked but saying that I had major surgery 7 weeks ago (full Hysterectomy ) and since my PV levels come right done and so has my blood perssure.

    I asked my hematologist if it's possible the Jak2 was gone as well, she said no.

    I can't answer your question but maybe the heart thing is related?

    Hope you are ok. / Anna

  • harrishill1
    harrishill1 agentdove

    Posted

    agentdove, Hi. I've been on Hydroxyurea for four yrs now. Ihave PV. Yes, I get frequent rapid heartbeat. I don't usually get blood draws any more. The cardiologist told me to avoid salt, and caffiene. So far, not sure if that has helped. I wonder if my meds cause it. However, when our red blood count goes too high, there is also more blood volume. I believe this temporarily causes high blood pressure and maybe rapid heartbeat? I have had the occasional can of diet coke. I am now trying to not do that any more so I can rule out the caffiene as the cause.

    I think after a blood draw, you shd not do too much physical exercise. That can cause rapid heartbeat too. Hope you figure out the cause.

    universes1

    • agentdove
      agentdove harrishill1

      Posted

      Hi Harrishill

      This could be somthing I can mention to my specialist nurse during our next chat. The paps can get uite distressing. I like the idea of trying fluid first though... the less I can put in the better...I already take very damaging meds.

      Thank you and take care x

  • andrew45678
    andrew45678 agentdove

    Posted

    Hi,

    My wife has PV and sometimes after a phlebotomy she gets heart palpitations.  Once, a couple of years ago, it was so severe that we enede up in Emergency twice, where they hooked her up to an ECG and said she had PVC's (premature ventricle contractions) which were not dangerous, but which were quite debilitating.  However after a month or so of palpitations she saw a cardiologist and was on beta blockers for a couple of months until everything cleared up.  She still gets some palpitations sometimes after a phlebotomy, but nothing as severe as that one episode.  She does get an IV to replace the fluids being taken during the phlebotomy and this seems to help.  She also has a heart condition called LBBB (left bundle branch block) which the doctors said may leave her at increased susceptibility to PVC's.  She's not on hydroxyurea or any other drugs, just low dose asprin

    • agentdove
      agentdove andrew45678

      Posted

      Thank you for your reply Andrew,

      When I go for VS I do get offered fluid drip, but always decline as I did not see the benifit. Next time my specialist nurse calls up, I will be sure to enquire if they feel it would be beneficial for me to accept this in future.

      As for my tests they only show that the heart is rapid and irregular, but no structural damage thank goodness.

      Thank you again and I wish both you and your wife all the best x

  • julia15874
    julia15874 agentdove

    Posted

    Hi there agentdove, I'm just in the process of been tested for polycythaemia, my JAK2 test is on its way to London, I too had a hysterectomy but three years ago, the doctor left my left ovary, as a consequence I've thought for the last two years I've been going through the menaporse, kept going to the doctors primarily due to palpitations, occasionally dizziness, tiredness, I've had loads of blood test, ECG, blood pressure kept going up, then normal, doesn't seem to stabilise, then the one thing was my red blood cells, hemocrit and haemoglobin all started to rise, my first high one was in 2014, which they thought I was perhaps "dehydrated", my doctor after my last blood test which I've had 5 full blood count all in all over this period is higher so referred me, I saw my haematologist last Thursday I asked him about the palpitations and I have a theory, he told me it's not usually a symptom, however I thinking if my JAK2 comes back positive it is a symptom of both my heart is struggling to pump with my bloods been thicker and I'm in the menaporse too so a double whammy! If my JAK2 is negative I'm wondering because I still have my left ovary, hence my hormones that my body is still making more blood to compensate for my once heavy periods? Just a thought that all my discomfort is just the menaporse after all??? But it's interesting that you have had the exact same symptoms as I, however your JAK2 positive....time will tell I hope to know soon. Our bodies are so finely tuned one thing off and it throws it all out! I hope I get some answers, I too have given up coffee and salt and alcohol my palpitations are slightly better but still there. Xx

    • harrishill1
      harrishill1 julia15874

      Posted

      HI Julia, I too thought it was menopause. After being diagnosed with Polycythenia Vera, i knew we overheat easily with this disease. Also, I had rapid heartbeat, saw the cardiologist. She told me to avoid caffiene. Now I don't have the rapid heartbeat. She wasg oing to put me on blood pressure pills. I didn't need them after going off caffiene. I didn't wantt o go on blood pressure pills cause once started, you have to keep taking them forever. I am jak 2 positive. harrishill   

    • julia15874
      julia15874 harrishill1

      Posted

      The menopause has a lot to answer for!! My blood pressure is up and down for a while, it's usually high when I see the doctor but that can be the case for most people, hopefully this week I'll know weather I'm JAK2 or not, I've not had any palpitations for a few days and been resting a lot and feel a lot Better, the headache is there most days and I've had a few dizzy days, but thinking perhaps I've had a bug, as I've had a sore throat too. I'll have answers soon xxx

  • caufenkamp
    caufenkamp agentdove

    Posted

    Hello, 

    I myself also get heart palpitations. My doctor told me it was normal with Pv. She suggested drinking alot of water and going for a nice stroll every day to help it out. So far it seems to be not as frequent. I use to just turn the lights out, a fan on high, and sit in the dark to try and calm my heart. I was told that wasnt a very good way to go about it. 

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