Palpitations after Pacemaker

Hi guys...I'm new at this so here goes.
My daughter is 12,has Learning Disability and had a Pacemaker fitted almost 2 years ago for Sick Sinus Syndrome.She had it set at VVI 60 and was fine but at her annual check,they said they needed to reprogram it to VVIR 50-150.All was fine until 4 weeks ago.She swims for a swimming club so does intense training and after her swim sessions she began complaining of her "heart beating" and said she didn't like it.She can communicate well but I don't think she'd be able to explain palpitations,dizziness etc. very clearly.I took her to our local Accident & Emergency where they did an ECG and admitted her to the paediatric Ward for monitoring...well,the alarm was bleeping all night as her HR went down as low as 46,which worried me.They transferred her to the specialist children's hospital who had put the PM in.They did a check,said all was fine,the monitors must be fluctuating and they'd order a 72 hr Holter by our local Hospital.3 weeks later(while wearing the Holter) she had the same symptoms about an hour after swimming.I took her to A&E again.The nurse got a pulse of 37 so off up to the Paed Ward again where the monitors hit 38 at the lowest.Transferred again but they can't find a problem other than Ectopic beats on the Holter.PM chck was fine so they did a treadmill test,muttered between themselves about PACs? Then decided to change PM to 70 VVI mode.Told us any problems,just phone them.The day after she went to Scouts where they were doing exercise for their Fitness badge.She complained again about her heartbeat hurting.I phoned the specialist hospital who asked me to bring her this morning as her Cardiologist who fit the PM was back from leave.He saw her and reprogrammed again to VVIR 50-150 and claimed she is "just aware of the PM kicking in". But he did mention that she's conflicting with the PM at times at that he wants her back in 2 weeks as he goes on holiday at the end of this month.He did mention a second lead but said he was reluctant because she has very little atrial activity and they don't want her using the PM more than necessary.I have no idea what is wrong but I am not convinced she's suddenly feeling it after nearly 2 years.Also,she has been monitored frequently when dealing with other medical issues and never until 4 weeks ago have the monitors "fluctuated" below the PM base rate.I know this is a long post but I'm very confused and would lov any support/advice please.It's very hard too because I can't feel what my child is feeling so I have to hope she can explain everything well.Thanks.

11 Comments

Kady12

by lubro - 2013-10-04 02:10:34

Being a parent is not always easy. I know that, as a parent myself, I would rather go thru hell than have a sick child. I don;t have any idea why this is happening, but I just wanted to say that I will keep you in my thoughts and prayers. I believe in the power of positive energy, and try to remain positive in this ever changing world. I hope you find some answers and solutions for what you and your daughter are going thru. Just stay strong... stay focused, and do the best you can... Know that you are not alone...Everyone here has been thru so much with heart conditions and such. I'm sure that some of our members will chime in with suggestions for you.
Please keep us updated, and hopefully, you will soon have some good news for us...


Lubro

A question

by golden_snitch - 2013-10-04 04:10:42

Hi!

Why does your daughter have a single-chamber pacemaker programmed in VVI or VVIR, if she has sick sinus syndrome? She should have an atrial pacemaker only, in AAI or AAIR mode; she should not pace in the ventricles at all. Just wondering, because that VVIR doesn't make any sense with her condition.

What your daughter might be experiencing is a "pacemaker syndrome", and the VVI mode is one of those modes known to cause this. It's basically a dyssynchrony of the atria and ventricles, so a loss of physiologic timing of atrial and ventricular contractions. It is known that children with sinus node dysfunction often have a rather fast (AV) nodal rhythm. Therefore, it could be that your daughter's AV-nodal rhythm competes with the pacemaker. Sometimes it helps to program the pacemaker base rate at a higher rate than that AV-nodal rhythm is firing at. If it doesn't help in her case, adding a second lead might be an option. But again, I do not understand why she is paced in the ventricles; if the sinus node is too slow, she needs atrial pacing, no ventricular. And by the way, ventricular pacing is worse for the heart than atrial. You should ask your cardio about this.

Best wishes

Inga

Clarification

by Pacemum - 2013-10-04 06:10:52

If I was you I would ask for clarification as to where the wire is attached and also if the rate response is activated. The rate response should recognize when your daughter is exercising and increase rate accordingly. When my daughter had her rate response first turned on it did feel a bit strange at first as they go from a constant set rate to the pacemaker raising the limit when exercising which could be a strange feeling. This may be the strange feelings that your daughter is experiencing.

Hope that you manage to resolve the problem soon as it must be upsetting to your daughter.

Something else

by Kady12.5 - 2013-10-04 09:10:33

I forgot to mention...my daughter also has a PFO.Don't know if this could cause problems.

What we know...

by Kady12.5 - 2013-10-04 09:10:53

Hi all.Sorry,had to re-register on a new username as it wasn't recognising me for some odd reason? Anyway...,
Inga, I have been concerned about the Ventricular lead only paying myself.As I said,her surgeon did mention a second lead but seemed reluctant.I have just had a finger pulse oximetry on her in her sleep an she is dropping again to 38bpm.Sh seems to jump and twitch just before her rate drops.She also has huge cannon waves which appear to be getting bigger in her neck,these have always just been on the right but she now also has a very obvious pumping on the whole of her neck.She complains each morning of feeling sick and having a sore tummy which again,given her difficulty in describing feelings accurately,this could signal any sort of discomfort.She also has had extremely low BP when in hospital recently,as low as 87/36 at times.I have googled Pacemaker Syndrome sinc you mentioned it and a lot seems to fit.Also,apparently NICE guidelines recommend dual chamber pacing for SSS.Her hR at the time of implant had hit 22,along with 3rd degree block,ectopics and long pauses so the docs diagnosed SSS.Thankyou to all of you for your lovely supportive responses.We felt so very isolated until discovering this club.

Inga

by Kady12.5 - 2013-10-04 09:10:55

Inga
You're very clear about everything.are you from a medical background,if you don't mind my asking.Do ou know hat could be causing the monitors to drop below her pacing lower limit? I have checked the monitors manually against my own pulse and they are correct.Her cardio did mention her competing with her PM. Pacemum....hi,they have clarified that her lead is ventricular and she has rate responsive on again now,but she has had for almost a year and only has problems now.
Thank

No professional

by golden_snitch - 2013-10-05 03:10:41

Hi!

No, I have no medical background, just about 15 years of personal experience with pacemakers, catheter ablations, antiarrhythmic drugs etc.

What you don't need with sinus node dysfunction is a VVI(R) pacemaker; what you can go with is either an AAI(R) single chamber pacemaker or a dual-chamber pacemaker with a mode switch (AAI--> DDD, if a heart block should ever appear). What you definitely need to avoid is ventricular pacing because your daughter has a well functioning AV-node. Today, most cardios would implant a dual-chamber device for sinus node issues. However, atrial only works perfectly, too - been there, done that. With atrial pacing only, you avoid the risks that come with unnecessary right ventricular pacing.

You're right about the rate response: If your daughter's sinus node is too slow, she needs the rate response switched on because her sinus node does not adjust her heart rate when she exercises etc.

Sounds a lot like your daughter has a pacemaker syndrome. Why her heart rate is dropping below the pacemaker's base rate? I have no explanation. All I can think of is that there is a loss of capture in the ventricular pacemaker lead. Failure to capture occurs when paced stimulus does not result in cardiac contraction. Can happen with lead dislodgement or perforation.

If you don't trust the doctor or hospital which performed the pacemaker implant, you should go for a second opinion. I think your daughter might need a pacemaker upgrade to a dual-chamber system. She could, for instance, get a Medtronic Adapta as this has a special mode that will reduce ventricular pacing to an absolute minimum, and also the Adapta will allow her to bring her heart rate up to a max of 220bpm which is great in her age (the younger you are, the faster your heart rate, especially when you exercise).

Best wishes
Inga

Low heartrate

by Kady12.5 - 2013-10-05 05:10:47

Thanks Inga.You've been really helpful and everything you've said,makes sense.The've mentioned adding a second lead to her unit but as a "drastic final option ".Now I have had a good read about Pacemaker Syndrome,I feel better informed to confront the cardios.I guess I just trusted them because,after our local hospital failing to diagnose her for 6 years,we were glad to be sent to what is a Paediatric Cardio centre of excellence known hroughout the UK and Europe.However,I shall now put my doubts to them when she's back in 2 weeks.We thought our problems were over when they finally fitted her PM,really feels like Groundhog Day.They've x-rayed her chest but would that show lead problems or would she need scans of some sort?
HURTHEART
They were once going to do a sleep study years ago but just went with basic oximetry monitoring instead.I will question this too as I read that it can cause SSS.
Thankyou so much.
Deb

Ectopic beats

by Kady12.5 - 2013-10-05 05:10:51

Hi again
After my daughter had the Holter on at the weekend,when we first arrived at the cardiac unit a young doctor popped in to the room w ith her Holter printouts in her hand.She had circled the time when I pressed the button when my girl was having her strange heart feelings.The doc then explained that at that time she was experiencing ectopic beats and they thought maybe the PM was sensing as heartbeats and so it would sense her rate as higher than the baseline and not fire.They did mention a "miss" when 7 of them were watching the screens during her treadmill test.They kept bring ing in more docs as they claimed she was a mystery.when I asked them about this "miss" they said I'd heard wrong although my Husband reassured me he heard the comment too.
I feel very confused and frustrated.
Thanks.
Deb

hope you get this sorted

by Pacemum - 2013-10-05 05:10:53

You really need to find the problem as it is clearly affecting your daughters day to day life. If I was you , if your daughter hasn't had one recently, an appointment for a full echo to first rule out any other causes. If that comes back clear then the current pacemaker settings are not sufficient for your daughters needs and need to be reconsidered.

For comparison, if it helps, my daughter (13) has wires both in atrium and ventricle but she has heart block. Her settings for her ventricle are lower 60 upper 160.

Ectopic beats

by Kady12.5 - 2013-10-05 06:10:08

Hi again Pacemum
Thankyou.We do need to get this sorted.My girl hates her PM as it is.She's never come to terms with it because she had to go in for it fit just as we were losing my Mum to cancer,(her first bereavement) and then she got Pneumonia,was diagnosed with Hypothyroidism and developed a hearing loss so had to start wearing hearing aids.I know the PM is there to help her but in her mind....she had an easy life until he PM op.Unfortunately,it was purely bad timing that every thing happened as it did within 6 weeks but she can't see it that way.Like many of you,she's been through enough.She spent 6years in and out of hospital every few weeks with a decreasing HR and couldn't walk for more than 5-10 minutes without taking up a squatting position(think this was a pre-fainting strategy) As I said,thought hat was it until battery replacement as all was good until a month ago.
They did mention an echo but didn't do one.Her last one was a year ago.
It's great to find so much support at the touch of a button.
Thanks.
Deb

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