PoTS and pacemakers

[Jax]

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

[Guest KiminOrlando]

I have heard of it. I don't know anything about it except to tell you that my Aunt knew someone that had POTS and had one put in. It worked for them. She told my mom this story when I was first diagnosed, but told her she didn't know the person any more to ask them any questions. I don't know what kind of POTS they had or anything else. My info is just shy of gossip. Keep pursuing this, though. It might turn up something good.

Good luck.

Kim

[Katybug]

There are quite a few old threads that talk about pacemakers. If you do a search, you can just use the search term "pacemaker" and be sure to change "This topic" to "Forums" and it will pull up a list of the discussions.

[Guest ANCY]

I had a cardiac pacemaker placed in April 2016 for bradycardia and POTS. Please feel free to ask me any questions, I don't want to give you information overload.

I'm 25 (was 24 at placement) and have jhs diagnosis from Geneticists but he said if I went to someone else they would have dx EDS. I went from passing out 20+ times a day to 0 after it was placed. Stayed that way until November/December when dehydration and sepsis complicated things (mostly bp) and I passed out on 3 separate occasions. I have not passed out again since they treated me for sepsis and it would seem to be staying that way. 

[Jax]

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

[Guest ANCY]

Yes, I had tachycardia up until a month before they placed my pacemaker. (Bradycardia followed a concussion posted a link to that below if you want to hear more about that.) My average would sit at around 110 and frequently would go up to 230s for several seconds. They were having me try ivabradine which helped some but still had some issues. My blood pressure was also very variable and unconscious readings were sometimes 40s/20s at that time baseline (if you could call it that) was between 120/80 and 90/60.

You are correct that a pacemaker cannot directly affect blood pressure. There are some, like mine, that can sense cardiac output dropping due to plummeting bp and raise the hr to compensate and try to maintain cardiac output/stroke volume. In pacemaker terms this is called closed loop stimullation. I can feel it bringing my hr up (to compensate) at least several times a day. My last pacemaker check I was being paced 70% of the time, meaning my heart is only controlling the beet 30% of the time. My parameters are not below 60 and not above 140 for longer than 10 minutes. Meaning that if I'm over 140 my pacemaker will take measures to bring my hr down. Although still infrequent, the last check showed this function has been used more often recently than when initially placed. My cardio said it's just variations of dysautonomia manifesting itself and some POTS stuff coming back.

Generally I would say that since the pacemaker leveling off my heart rate my blood pressure has been less iradic and more stable. However it has not helped with the times when I spend days or weeks with it low (70/40). Seems to work with bp only when I'm dropping rapidly. 

As for making the decision, I think I was in a very different position then your daughter. I felt so horrible I just wanted them to do something to make me feel better... (once again more of that in the link below) It is a little scary to think that your heart will be controlled by a machine, at least some of the time,  for the rest of your life. Which is partly why other cardio would not take action on my bradycardia. My cardiologist/EP only just recently revealed to me (months later) that when he placed the pacemaker he felt my death was eminent. So please don't take their suggestions lightly.  

In my mind there's no doubt it was the right call because I have had such great success. My cardio did say it's very individual and not a blanket fix for all POTS patients, as the results vary, at least at this stage of research and development. (The CLS is a newer technology) 

I have another 7 years before they need to change out the pacemaker and the leads into the heart are good for 20 years. So in terms of replacement it's not as bad as years ago. Placement isn't hard either btw. Right now we are on high alert because I had a blood infection last month which can potentially infect the pacemaker... (infectious disease dr said there's a 1/3 chance it gets infected) obviously if this happened they would be forced to pull it, treat the infection, then place another. Unless you get a lot of major infections like me though, there is not really that high of a risk for pacemaker infection.

I hope that helps and if Any  thing is unclear just let me know. You can also PM me if you want.

 

[Jax]

@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

[yogini]

I would do lots of research on this and see a POTS specialist - there are names on the DINET list.  It isn't a customary treatment, but your daughter's situation may be different because she had an ablation.  It might be helpful to do some reading about ablations as a treatment for POTS and also the use of a pacemaker in POTS patients after ablation.  There should be lots of good info on this forum, the DINET main page and also on google.

Edited January 24, 2017 by yogini

[Jax]

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

Jackie

[SarahA33]

DINET works with another pots/dysautonomia website,  pots UK.  They offer information,  support groups,  and doctors who specialize in our community on their website.  Best of luck to you and your family