Confused.com

Well just before my holiday the second consultant got back to me.
He reckoned that an ablation was the way forward for my PM tach, as my upper rate was only 110 and I frequently exceeded the tracking rate, also paced 90-100% in the ventricles. He also claimed there was no evidence of Afib,so I could come off the meds.I know have been referred again to the arrhythmia folk at another site.
We had a nice time on holiday but was limited and also had 3 bad nights of not getting any sleep due to my HR, now home and off the meds.
So now back to waiting for another appointment, and more answers, would love to know what has been picked up for previous DR's to think there was Afib, or has the new guy missed stuff.
Don't want the ablation only to find that something else has been missed. Hopefully I will hear soon and can get the questions asked.
Interested to hear from anyone with PMT/pace maker syndrome,
I thought the former was mainly when trying to exercise but I seem to get it any time.
The new guy did seem to think that I have been through the mill so I kinda hope he will push me up the list. (back with the NHS)
Slowly loosing the plot.
Jane x

7 Comments

Caution

by Artist - 2016-05-02 04:05:46

I personally am very skeptical about a PM technician overriding your cardiologist's decision that you need to take medication. I definately would not stop taking medications without first getting the approval of the prescribing physician. Ablations are normally done when a patient has arrythmias. Why gamble with your health. There are warnings against suddenly stopping medications. They even hospitalized me when they were weaning me off one medication and wanted to supervise my adjustment to new medications. If your heart rate prevented you from sleeping for 3 nights, that raises all kinds of red flags to me. I would not wait to see if you are pushed up the list and would at least make a phone call to your doctor's office to discuss your current problems with your heart rate preventing sleeping and the fact that you have taken yourself off medications. It seems to me that you are taking a serious gamble with your health. A PM technician should not be making decisions regarding medications that were prescribed by a medical doctor/cardiologist.

Sorry

by Jane S - 2016-05-02 05:05:12

I don't think I made my post very clear, it was the consultant that said I could come off the meds as he saw no sign of Afib and that they don't help with the PM tachycardia.
The ablation is to prevent the re-entry loop when I get the PMT .and then hopefully allow my settings to be altered to give me more energy and exercise tolerance.
I understand more when I am told stuff but find it difficult to repeat it to others.
At least here you can at least get things off your chest.
Thank you for responding
Jx

"Consultant" - specialist doctor

by SaraTB - 2016-05-03 05:05:20

Just in case others are unclear: in the UK, the term "consultant" is the term for a specialist doctor: i.e. not your general practitioner. The GP refers you to the consultant (cardiologist, urologist, whoever), hence you are having a specialist consultation.

The UK system does not involve technicians from the manufacturers but has regional clinics where there are highly trained technicians, dealing with all makes of PM. (Someone correct me if this isn't quite accurate: I'm a Brit, but all my PM history has been in the US).

Thanks guys

by Jane S - 2016-05-03 07:05:15

for clarifying things for each other.
Got a letter to day as a follow up to the 'phone call and I have been referred to an EP specialist. So we wait to see what he can come up with, maybe like TJ there might be another route to go. I don't like the idea of the total ablation but the good days are limited and the bad days are just awful again.
Ian totally agree about the Cardio Physiologists, mine has tried lots of different settings and has said on a few occasions she can't do much more. Also did you have any
rehab, or some one to talk to?

You are absolutely right Sara

by IAN MC - 2016-05-03 07:05:17

I couldn't understand Artist's comments and now realise that it is probably the different terminology used either side of the Atlantic.

You are right that PM manufacturers' reps have virtually no involvement in PM setting adjustments here in the UK These adjustments are done by highly trained Cardio Physiologists who are permanent and valuable members of the cardiology team .Some people refer to them as PM techs but their role is far wider than that.

Ian

Ablation or reprogram?

by TJ319 - 2016-05-03 11:05:48

I experienced a lot of tachycardia after my PM was implanted. The original EP doc kept fiddling with settings and put me on a beta blocker, neither of which resolved the issue. After over a year, I was referred to another EP, since the first guy left the area. What a blessing!

After a short trial of a calcium channel blocker, I had an EP study in the cath lab. My new doc planned on doing an ablation, but was able to reprogram my pacemaker, which has all but eliminated tachycardia for over a year. So I think as you approach the procedure, it would be good to discuss this. My new EP identified the issue as Pacemaker Mediated Tachycardia, bye the way.

Confused Terminology

by Artist - 2016-05-03 12:05:11

I guess I am confused by your statement that the second "consultant" said you can come off your medications. Was that a medical doctor, cardiologist, EP, the physician that originally prescribed the medications or the pacemaker technician?

You know you're wired when...

Your old device becomes a paper weight for your desk.

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I'm 35 and got my pacemaker a little over a year ago. It definitely is not a burden to me. In fact, I have more energy (which my husband enjoys), can do more things with my kids and have weight because of having the energy.