Frustrated heart

[Kirsty131]

Hi I’m kirsty131 and have been unwell for two years, started with memory loss/fog and palpitations, in 2016 I was diagnosed with supraventricular tachycardia and was put on propranolol lowest to maximum dose until I was hallucinating! I have had all the heart tests and it showed I had three out of four valves leaking, thickening of the aorta, a hole with pda. I have been tried on bisoprolol and atenolol. All beta blockers cause my heart rate to slow to the point I faint. I have been having attacks since 2017 that can last up to two weeks, chest pain, nausea, high blood pressure 209/198, tremors, profuse sweating and a pulse rate that fluctuates violently between 38 and 200! I ended up in A&E in August with an attack like this and my heart rate was 198/172 pulse 156, I was referred back to the heart consultant who signed me off his books a week after this admission. My company sent me to an AXA doctor in September who said I can’t drive due to my fluctuating palpitations and fainting and asked why I hadn’t been offered ablation?! So it’s coming up to 6 months of not working or driving and I am no further on from 2016! The consultant is obviously not concerned so should I be? I just want my life back!

[Ashleigh_BHF]

Hi Kirsty131

So sorry to hear you've been struggling with heart problems for a while now.

It sounds like you really need another cardiology review, are you still being seen by the Dr. under your insurance cover? If so, it may be an idea to go back to them and explain your symptoms have not improved. If not, go to your GP and ask for another referral to a cardiologist to get reviewed again-they can refer you to a different cardiologist than one you have seen previously. If your treatment plan was to take beta blockers and you are unable to take them or they cause faints, it is important that your GP and cardiologist are aware so they can explore other alternatives.

If you'd like to talk to a cardiac nurse on the phone who may be able to go in to more detail, please call our helpline on 0300 330 3311, we're here Monday-Friday 9-5pm. It sounds like you need a plan so it may be helpful for you to discuss your history with a nurse who can guide you as to what your next steps might be.

Best of luck.

Ashleigh

[Kirsty131 in reply to Ashleigh_BHF]

Hi Ashleigh, my company did pay for me to see another cardiologist privately, after looking at the echocardiogram and other tests from the hospital he did a two week zio heart monitor test and all he said was you have very fast heartbeats most of the time and your heart pauses at night for just under two seconds each time. He sent me to an endocrinologist to rule out any problems that may cause my heart to be so erratic. All endocrine tests were negative. He sent a letter to my gp saying put her on bisoprolol but already knew I couldn’t tolerate it. My blood pressure is sporadic so it’s not constantly high as is my heart rate. I can actually just be sitting doing nothing and my heart rate will go crazy. I’m worried how much more my body can take? I feel and look terrible but none of the specialists seem overly worried or have any answers or solutions.

[Ashleigh_BHF in reply to Kirsty131]

Hi Kirsty131

This all sounds incredibly frustrating for you.

I would book an appointment with your GP and ask for a referral to see another cardiologist, as it sounds like you need to discuss with an expert your issues with beta blockers and explore other options with them. It sounds like it is affecting lots of areas of your life, so don't give up in trying to get it sorted.

Again, if you feel it may be beneficial please give our helpline a call.

Ashleigh