Still waiting for answers

Posted , 6 users are following.

I was diagnosed in November I still to this day don't know what is wrong with me. I have been in hospital 4 times over the last 10 months and all they keep saying is "well it's not a heart attack, your heart isn't scarred and your arteries are clear" But I still keep getting all the systems that I had in November when they decided I had HF. I still get immense pressure in my head so I'm still sleeping sitting up even though the HF clinic said I shouldn't be. I have been dismissed from work as I can't do the job I was employed to do and the social have told me I can't work so have been put into a support group. I am so fed up not knowing what is wrong with me

0 likes, 12 replies

12 Replies

  • Posted

    Did the hospital consultant not give you any idea as to the cause, did they ever suggest it could be psychological, please don't take that the wrong way it's just these symptoms can be caused by anxiety as well
  • Posted

    I too suffer from heart failure and have done since 2012.  I went into hospital with blood clot on the lung.  Was discharged after 3 days with treatment and diagnosed with HF, no known actual cause.  The annoying factor is my GP knew I had a problem back in 2008 and did nothing about it.

    i continue to work until July 2014, when I gave up work. I have now had to surrender mt driving licence due to blackouts which have since developed, no known cause again.

    i suppose the moral is do not give up and use the support group as they are like people and can help.  I still enjoy and have a good life, even if I cannot drive, but have a wonderful husband.

  • Posted

    Hello jacqui1162, HF is a complex condition that can and does have big life effects. You would do well to take a step back and start to increase your knowledge. These forums are great but perhaps you nee some more informed opinion. A great place to start is Wikipedia: https://en.wikipedia.org/wiki/Heart_failure. Read this carefully and then you will know so much more about what can be done to help. Most of us living with HF come  to realise that it can be, sadly, all too quickly, a critical or even terminal phase of our lives. Don't give up though! New treatments are always evident and you never know what is around the corner. Good luck in your furthwr understanding and management of HF.
  • Posted

    Thank you for your replies. The hospital said at the beginning that a virus had attacked my heart and caused the damage, now they are saying it's the sac around my heart but they are not sure. I don't suffer from anxiety so I know it isn't that and I don't take it the wrong way as I worked at the hospital and know where your coming from.

    Jenny I too have a great partner who supports me 100% and he puts up with a lot. Where would be without them lol.

    • Posted

      Hi could you please write how thye diagnosed you with heart failure as well as your daily symptoms. I have also had virus in the heart and have many symptoms. Im worried about heart failure too.
  • Posted

    I had all the tests ECG, Mri, echo and angiogram, all came back clear except the echo that showed I had problems but it was clear as to what but because I hadn't suffered all of the usual heart attack or blocked arteries they came to the conclusion I had HF due to a virus. My symptoms were / are shortness of breath, can't lie flat, can't walk too far without being tired, strange feeling in the middle of my chest and rapid heart rate ( 155 )
    • Posted

      Okay. I have dizzyness and fast heart rate especially when standing, that Im on medication for. 
  • Posted

    I get the dizzy spells when I stand but that is caused by my meds for the blood pressure. I have been on beta blockers for my heart rate which is now around 55 which they like to keep it at. When I was at cardiac rehab gym it was rising to 128 which they didn't like but again no explanation what was wrong or what they can do for me.
  • Posted

    Sorry I have just re-read your post and realised you have heart failure, obviously I'm having an off day were I don't absorb information as well as I should LOL I have just read up on the tests for HA and its an unknown quantity, many things can cause it but once you have got it the reason could have gone and never be found.

    Do you have or did you have any of the risk factors that seems to go hand in hand with HA

  • Posted

    Have you had the following tests

    1. heart stress test - what is your S-T segment depression?

    2. anyother stress test markers? on the ECG report?

    3. have you had an angiogram?

    4. how is your blood pressure and A1C? Basic tests? have you had them all ?

    I assume the pressure causes headaches? You need to go into somewhere like Cromwell Hospital for the day and get this sorted by a top team of specialists.

  • Posted

    Don't know what a s t segment is so don't think I have. I have had a angiogram and that was clear.

    I have never heard of Cromwell. My blood pressure is low around 86/72 _ 98/60.

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