Jax

@yogini thank you! I dont know if there is UK information on here but I will look thanks for the reply

Jackie

@ancy that made grim reading you have been through the mill!!! I will pass this to my daughter to read and do some research on the type of pacemaker.  I can email her Consultant and see if this is the sort of thing he had in mind. 

Thanks again 

xxx

Wow thank you all so much for reading and replying.  @Katybug I will do a search thank you! @KiminOrlando No not gossip :-) That's how things get passed on and can be helpful.. Thankyou.

@ancy Can I ask did you have tachycardia as well as bradys? I can understand the need for a pacemaker with a brady but because my daughters heart rate is high and gets higher when she stands up and moves it's her BP that drops so not sure how a pacemaker is going to help this?? You are the same age as my daughter, did you find it a hard decision to make when offered the pacemaker? 

thanks again

Jax

x

Hi, I am desperately trying to get information on people who have PoTS that have been given a cardiac pacemaker and how that has helped. We live in the UK and my 25 year old daughter has EDS and PoTS she has been through the list of medication and not tolerated them or they have not helped her PoTS. She has had 3 sino atrial node ablations (again without success). One of her Consultants had discussed a pacemaker may help her but there is little or no information here about Pacemakers being used successfully with PoTS patients.  I am not a medic but I know pacemakers stop heart rates falling but with PoTS the problem is with a fast heart rate. Any experiences or suggested literature on the subject would be SO welcome.

Thank you in advance

Jax