Growing out of pacemaker...

Hello everyone! 

Firstly I would like to thank everyone for their kind messages of encouragement and reassurance on my posts and private messages.


As some of you are aware, for almost 2 years now I have been experiencing severe anxiety, but last week I received some news that really helped! 

I have been complaining of heart palpitations for a long time now, the cardiologists send me for some tests, including an echo, ecg, x-ray, treadmill or stress test and a pacemaker check. During the stress test a few extra beats where seen to occur, and during the pacemaker review I had shown lots of extra beats in the last 6 or so months.

After my cardiologist in Oxford spoke to a team of electrophysiologists and cardiologists at great ormand street in London, they came to the conclusion that I had grown out of my single lead, "child's" pacemaker, and the short wire was pulling on my heart, creating these extra beats. For this reason I have been told I am to have an operation for a dual chamber pacemaker (I was told that was just because I'm becoming an adult) and have been prescribed a beta blocker for anxiety. I am now nearly 17 years old so The team believe this is the right time to get a new pacemaker for my adult height. The surgery could be before or after Christmas, whenever they have a slot booked in  

Thank you for reading, and sorry for the long essay! 

hayden x




Wow Hayden what incredible progress!

by Gemita - 2020-12-05 19:07:57

Hi Hayden,

So nice to hear from you and to know that you are doing okay.  You sound so different, so positive and you have been making such progress I cannot believe it.

A dual chamber pacemaker may make all the difference and help to better control your rhythm disturbances.  I am so pleased you have been listened to and that you are now getting some help for your anxiety, although I really don't see an anxious Hayden any more!!

Good luck for an early dual chamber implant.  Please let us know when you get a date for the procedure.  Will you be having implant procedure in Great Ormond Street hospital or locally?  I am hopeful that with two leads you will be in a much better position to control any rhythm disturbances you may have because two leads will allow a more natural means of pacing your heart.

Therese xx

Hello Gemita, Thank you!

by PacerPrice - 2020-12-06 07:45:01

Hello it's great to hear from you, 


My doctors have finally really listened to me about my anxiety and have prescribed a beta blocker for it, they think that it what was causing the extra beats. So my anxiety has really been great recently and I have not been as anxious at all! 

I will be having the dual chamber procedure at Great Ormand Street Hospital as I may also need a lead removal and their facilities are the best for that procedure in someone of my age. I'm still not 100% sure why I have been "upgraded" to a dual chamber, but from what I have been told it seems to be the adult version of what I have now,

Thank you so much for you help through everything, I hope you are well,

Hayden x

Hello Hayden!

by amanda_shanti - 2020-12-06 08:57:34

Nice to meet you Hayden :)

It must be hard to have a PM in such young ages! I'm 43 and had my PM implanted a month ago. Even after a month, I still feel bad and anxious sometimes ;(

My best wishes to you, good luck for the new implantation and a speedy recovery from the surgery. Happy adult PM life!!

Hayden - I am doing well, thank you

by Gemita - 2020-12-06 10:20:17

You have obviously outgrown your present pacemaker and are ready for the next stage in your development that should keep you going and well for many years to come.

Which beta blocker are you on and what dosage?  Sounds as though it is helping both your rhythm disturbances and also your anxiety.

Oh I am glad you will be under the care of Great Ormond Street Hospital.  You will be in very safe hands.  

I have a dual chamber pacemaker.  My husband has a single lead pacemaker since the doctors believed he was in a permanent arrhythmia known as Atrial Fibrillation at the time of implant and that he would not benefit from a dual chamber pacemaker.  I was not so sure at the time that a single lead was the best treatment for him and I am still not.  But what is done, is done.

My heart has been jumping around quite a bit lately but probably due to lack of good quality sleep.  But it doesn’t worry me anymore because I know the behaviour of my arrhythmias so well and I am very much in control now, but it wasn’t always this way Hayden.  Knowing what the problem is, is half the battle won, isn’t it.  It is the not knowing, the disturbing symptoms that make us imagine the very worst that can cause such anxiety.


by Persephone - 2020-12-06 18:31:50

Hi Hayden, it's wonderful that you are making progress on your journey. In addition to these great posts here, I hope that you will reference Swangirl's prior posts about dealing with anxiety (using the search function), as they are very helpful as well.  A beta blocker can be a tool in the tool box... meditation, deep breathing, and counseling can also help. Best wishes.

Vitamin D supplement can cause extra beats

by Gideon - 2020-12-07 07:39:08

Hi Hayden, all of the best with the new PM operation.  Just to share an experience I had with extra heartbeats after getting my 1st PM last month:  I found that my heart beats normalised almost completely after I stopped taking vitamin D supplements.  Aparently they are well known for causing heart rhythm problems, but not serious.  Have a great day.

Thank you all,

by PacerPrice - 2020-12-07 14:04:44

Thank you to everyone that has commented! 

Thank you to Gideon and Persephone for your recommendations, I have been practicing deep breathing techniques for a while and they definitely help! I was unaware about the vitamin D issue, I have been taking a small dose sometimes as it is meant to help with COVID-19 tolerance (if I was to get it) but I will stop that now. 

Gemita, thank you for your messages, you really help. I am currently taking 40mg of Nadolol once a day, but my cardiologist is keen to put it up to 80mg a day. This is my first day on the medicine and I can say it has been a much better day for anxiety that yesterday.

Back to the hospital tomorrow for my checkup too see what "brand" pacemaker I would work best with,


Thank you everyone, your are all amazing and I hope you have fantastic weeks! 

Hayden x

Vitamin D

by Gideon - 2020-12-08 03:09:29

Hi Hayden, I must add that I was on a high vitamin D dosage (5000IU).  I would recommend leaving the supplement for a week and see if there is an improvement.  If you do not notice an improvement the supplement will probably do more good than harm.  I was going to recommend you get some sunshine, but then I Googled the weather in Reading.  But what a beautiful town!

Good luck!

by Tracey_E - 2020-12-08 09:15:19

I'm so glad they found a reason for your symptoms and it's helped with the anxiety! Stay in touch, let us know when you get scheduled and how it goes. 

Thank you Tracey!

by PacerPrice - 2020-12-09 06:42:05

Thank you Tracey, I will keep you all posted! 

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