Looking for some hope!

[Betty_boo]

First time posting - hi everyone! I’ve been following the forum for while but haven’t seen anything re my condition, chronotopic incompetence. Means my heart rate does not increase in line with needs. I’m breathless and exhausted much of the time. One cardiologist has told me a pacemaker would help, but they can’t do anything until I have an MRI scan, which I am not a high priority for (according to the scan centre). I am 56 years old and was working full time till I got struck down by a virus in the new year, which seems to have triggered the heart problem.

I’m really worried about losing my job as been off sick since January and they are not gonna wait forever for me to be treated, so money is a worry. But so is the head stuff! I feel completely useless! I am so bored much of the time. Can’t settle to my usual hobbies. Missing swimming and walking too. I can’t even mind my grand daughter as i never know if i am going to be stuck to the bed exhausted or not!

So I was wondering if anyone else here has this diagnosis and how you have got on? I know there might not be a miracle cure, but has any particular treatment helped?

Please give me some hope and thanks for reading.

[Cymrucurious]

Hi ... whatever the responses of group member's experiences (mine is very limited) on your condition to offer advice, I'd like to welcome you to the group & send support and friendship your way

[Betty_boo in reply to Cymrucurious]

Thank you very much! Great source of support - its hard to keep talking to friends and family about it - I’m the strong one

[Cee-Cee1]

Hi, Betty - unfortunately I can't help with any information on your query but we've a lot of knowledgeable people in the forum who will hopefully be along soon. Just wanted to welcome you to the forum. Carol

[Betty_boo in reply to Cee-Cee1]

Thanks very much

[Henry20]

Can I suggest you phone the BHF nurses.

The website shows:

Heart Helpline - for medical enquiries: 0300 330 3311

Phone lines are open Mon - Fri 9am - 5pm

I hope they can help you

Henry

[Betty_boo in reply to Henry20]

Thanks very much Henry, I will do that.

[Bingo88]

Good morning Betty_boo. From what you have said. this condition is really impacting on your life. So I would be going back to my doctors and telling them you need something done I.e. get the scan done and if you need a pacemaker to sort the problem then it needs to be done. Pacemaker procedure is nothing major. Takes around 1 hour to do. And I was awake all through the procedure and hardly felt anything. Hope you get things sorted out and have a better day today. Brian

[Betty_boo in reply to Bingo88]

Thanks very much

[northernsoul1]

I know nothing of your specific condition so can't help there but just wanted to say hello and acknowledge how rubbish this must be for you.You are a real priority as you're a working tax payer. I work for the NHS and my advice is to keep on badgering your GP and if you're on the waiting list keep phoning them up. You deserve to be treated but I know the NHS usually caves in to badgering and complaints. Keep going and hopefully you can get sorted soon.

[Betty_boo in reply to northernsoul1]

Thanks very much

[Betty_boo]

Thanks very much