Excellent publication

Helpful link

by Gemita - 2023-03-14 09:09:41

Piglet22, what an interesting link you have provided.  Thank you so much.   It is true arrhythmias are feared by so many but what is important is how we feel when we get them?  If our symptoms tell us that we are in trouble, then we should always seek emergency help.  Equally if during an arrhythmia we do not experience worsening symptoms like breathlessness, chest pain, syncope, then we can usually manage well at home.

I was particularly interested to read about Ventricular Tachycardia (Figure 16) since I recall my technicians having difficulty distinguishing my SVT with aberrant conduction from a VT episode, particularly since I was so very symptomatic at the time.  They had to send my ECG to the Medtronic rep for analysis.

I am sorry to hear you are still having problems with ectopics after increasing your lower rate limit to 70 bpm.  Perhaps 75-80 bpm for a brief period might be worth trying?  Do you have Atrial Rate Stabilisation or something similar switched ON?  This might help to “rate smooth/overdrive pace” to help prevent long pauses that commonly follow premature atrial contractions.  Although I appreciate a pacemaker is not a treatment for an arrhythmia, with optimised settings I feel there is a great deal that can be done to relieve some of our symptoms and certainly worth exploring

Thanks Gemita

by piglet22 - 2023-03-14 10:21:38

Yes, that text book is well written so that us amateurs can understand it.

I'm still having problems, particularly at night when I'm inactive.

Like any problem, they are 10 times worse in the wee small hours. Part of the problem is acually getting the opportunity to discuss anything. The physiologists here only do what the consultants tell them to do and it must be 18 years snce I saw a consultant other than in ward rounds.

The GP surgeries decided to combine four existing surgeries into what was proposed to be a super health hub with new buildings and everything else.

Planning permission and all that means that the hoped for opening in 2020 never happened and they don't seem to have recovered from the lockdowns.

You rarely talk to or see the same GP some of whom work part time and others are drafted in.

You need a GP referral to see a consultant and so it goes on.

The only cardiology service in my neck of the woods is in a rabbit warren of an 1854 thereabouts building, cramped dark and very very difficult to get transport to.

I makes you ill just getting there.

I'm not rich, famous Royal or a footballer so going anywhere else isn't an option.. I suppose we have to be grateful for what we do get.

night time / rest low rates

by Penguin - 2023-03-14 15:48:10

I'll start my reply with a disclaimer - I'm not very knowledgeable about 100% paced AVB - so bear that in mind! 

Re: Your article - yes it's very useful and clearly written. I've bookmarked it - thank you. 

Re: night time symptoms and recent changes to base rate - which doesn't seem to have helped much.  You could ask for your base rate to be increased again, but I'd be concerned that it might be difficult to tolerate at night when trying to sleep, and if that's when you get the symptoms it's likely that you would have to put up with that.

Re: Seeing an EP.  I empathise with the difficulties involved in getting to see an EP / Consultant.  It's an uphill battle for a 15 min appointment.  Worthwhile or not??? Not sure. They might be the best option if it's a 'gatekeeping issue' re setting changes or a meds issue or the progression of a physical issue.  It's worth exploring all of those things of course particularly if you haven't seen a specialist for so very long.

If it's just too difficult could you try to get your local Medtronic Rep involved instead?  A Rep may be more helpful if the pacemaker's settings are causing the symptoms. It may be that they will have a novel perspective or means to sort the issue out. 

 You can contact the manufacturer's Rep either yourself or via your pacing clinic.  They won't discuss your care with you but they will communicate with the pacing clinic and may suggest some alternative settings to try.   If you get to the point where you've exhausted pacing expertise, you may need to see that consultant. 

Is 'put up and shut up' acceptable? Sometimes, yes if there is no other choice and all medical avenues have been exhausted, but are you at that point yet?