Have you ever received any Settings adjustments for an arrhythmia?

Rate Response & ATDR

by Penguin - 2023-05-09 06:23:13

Rate Response (RR) - RR can be a trigger for arrhythmia.  Depending on your device and it's settings, RR can be programmed so that it elevates your heart rate for exercise above your max tracking rate.   It helps to know that it can also be programmed so that it brings your heart rate down to it's base rate more slowly / gradually after exercise.  This avoids any abrupt changes in heart rate which can trigger arrhythmia.  

AT Detection Rate (ATDR) - AT (and AF) detection work differently on every pacemaker. However in general, the technicians and EP will have analysed your documented arrhythmia before selecting a device, to ascertain the speed at which the arrhythmia occur.  Armed with this information they select a device which will ideally be able to detect AT at these heart rates.They will then programme an ATDR in bpm (beats per minute) which will identify your arrhythmia when they occur.  

Device Selection - The range of ATDRs offered by pacemaker manufacturers differs. For example some manufacturers offer AT detection from 90 bpm whilst others offer AT detection from 170 bpm. Therefore the device that your EP selects really matters if you have arrhythmia as low rate arrhythmia may not be detectable with some pacemakers. 

Mode Switch The ATDR is the gatekeeper for other algorithms like mode switch. 'Mode switch'  switches your device into a non tracking mode when an arrythmia is detected. It's often referred to as AMS (Automatic Mode Switch). Mode switch stops the device from tracking the chaotic beats of your arrhythmia down to the ventricles as this would cause symptoms. 

Programming an ATDR - It is helpful to know how technicians programme ATDRs and the limitations which apply: 

Method: They take your MTR (Max tracking rate) and / or sensor rate and add a nominal amount of 5, 10 or 20 bpm to this. 

(Note: The nominal amount is dictated by your pacemaker and manufacturer e.g. Boston Scientific only add 5 bpm* to the MTR for AT detection whilst Biotronik and Abbott add 20 bpm* to the MTR for AT detection.) *This may vary by model and other manufacturers may have higher or lower nominal amounts.    

Issues with ATDR Programming : - If you have low rate arrhythmia there are some potential problems with ATDR programming. See example below: 

Example;  If your your MTR is 130 bpm. Your device (Abbott for example) has to have a nominal amount of 20 bpm added to the MTR for AT detection meaning that the min ATDR programmable is 150 bpm.  Whereas if your device is a B.Scientific device a nominal value of only 5 bpm will have to be added to the MTR, making a min ATDR programmable of 135 bpm.

This is where device selection becomes important if arrhythmia are happening at low rates. For example: If arrhythmia occur between 125--140 bpm an ATDR of 150 will not detect any of them whilst an ATDR of 135 will detect some of them, but not all. 

 As far as I know, and hopefully somebody more knowledgeable will have an answer, this means that anyone with lower rate arrhythmia may have a difficult time getting their arrhythmia detected via an ATDR and other methods / settings will have to be used to reduce tracking of arrhythmia and symptoms. 

I don't know how to get round this. and what those methods / settings might be (if any).  If anyone does I'd be very grateful for their advice. 

Penguin

by piglet22 - 2023-05-09 08:25:48

Thanks for all that information.

I think a lot of, possibly the majority, of patients who don't make it as far as this forum, this sort of fine detail is going to be off-limits.

I have two relatives who have both had pacemakers, but I doubt that they are even aware that the setup you are first given can be altered.

I for one have no idea what settings I have. The only time a setting was altered on my first PM, was when it had failed and they raised the voltage threshold as a very temporary measure.

I can only speak for the cardiology team I have to work with and say that only the very basic information is ever given to patients and most of that is on the ID card.

I've never really ever been given the reasons why the PM was fitted in the first place. Yes, the consultant did say "You have complete heart block", but that was that. Absolutely nothing about the condition, the outlook etc. There might have been a sheet on what to do or not to do.

A lot must depend on the people you see. If they are genuinely interested in you, they might have time to discuss things, but if meetings are brief or now non-existent, nothing is going to happen. All I got recently from a physiologist over the phone, was "it's the algorithm”. It’s the sort of answer you get when someone can't be bothered. You might as well say it's the weather or Covid. I expect my washing machine has an algorithm, but at least it comes with an instruction book.

My current interest was sparked by the sudden appearance of ectopics in January 2023. I spoke to the cardiac department and of course got a call from one of the physiologists. That's when I got "It's the algorithm". There was no suggestion of any sort of investigation, so I had to go the GP route. It will still be another 7 weeks before I have a telephone chat. It doesn't fill me with confidence.

Thank goodness there is this forum to fill in some of the gaps and clearly some of the contributors have gathered a lot of knowledge about their condition. Plus access to the internet which my elderly aunt would never have had.

Piglet

by Penguin - 2023-05-09 09:21:06

I hope that the information I provided is accessible to forum members. RR, mode switching, AV delays and AT detection are all subjects of previous threads - so I assumed that they were accessible topics. Apologies if I got this wrong. 

Happy to delete / correct / simplify if necessary? 

I'm in the UK too and benefitted from a lot of useful information from my original pacing clinic. However, it took me over 5 years before I got around to asking about settings so I understand what you're saying.  Many people never ask and many don't want to know.

In my experience asking the GP about pacing algorithms which may be causing your ectopics is pointless. The techs are your best point of call. It's easy for me to say, but when they say, 'its the algorithm' the best response is ' which algorithm? what does it do? what are it's limitations? do I need it and can it be adjusted'.  Clearly this takes time and I suspect that this is your underlying point! No one has time to explain any more and this is causing both your problem and your dissatisfaction.  Understandably!  

Thank you both

by Gemita - 2023-05-09 12:26:06

Penguin, thank you so much for taking the time to produce an excellent, easy to understand, information page on important Settings for arrhythmia sufferers. 

Yes with Rate Response turned on I certainly found I had an increase in my arrhythmias initially.   RR is quite tricky to adjust.  I have to return to clinic in a few months for further adjustments but I learn a lot from these sessions.  

It appears both Piglet and I have the same pacemaker, so we can compare Settings if we ever manage to get our full downloads in the future.  

My Medtronic Mode Switch is triggered by heart rates above 171 bpm after a certain number of beats, although clearly the EP/technician can fine tune this Setting to suit him and the patient.  I have had my atrial sensitivity setting set higher to detect more AF episodes, to assess my true AF burden.  I am extremely symptomatic during AF.

My husband who has a Medtronic PM too, is set at 165 bpm.  He has AF with a very slow ventricular response rate but occasionally get reports of high atrial rates exceeding 165 bpm.  

I know you have had one or two pacemaker changes in your lifetime but have you ever had any Settings adjustments for any rhythm disturbances that have made a difference to your quality of life that you can recall?  I know you are currently looking for answers for your difficult symptoms and I hope you will soon find them.  You have certainly learnt a great deal about your current device and its settings so you will know what questions to ask.

With the maximum tracking rate, I don’t know what the answer is and it just highlights how much work we still have to do to help arrhythmia sufferers get the most out of their pacemaker settings.  I wanted to have my upper tracking rate of 130 bpm raised but was told that due to my arrhythmias, this wouldn’t be advisable which is a pity because my Atrial Preference Pacing Setting which overdrive paces premature beats which are frequent AF triggers, would certainly be more effective if it could occasionally pace at higher rates.    

Piglet, you made me laugh:  “All I got recently from a physiologist over the phone, was "it's the algorithm”. It’s the sort of answer you get when someone can't be bothered. You might as well say it's the weather or Covid. I expect my washing machine has an algorithm, but at least it comes with an instruction book”.   

To be honest I think our doctors/technicians cannot cope with elderly folks asking “research questions” about their pacemakers.  All they want to do is to pat us on the back and tell us not worry about these things and to leave it to them.  That is what I was told recently by my retiring technician (not by my new EP though who did listen to me and felt that a Setting change was called for and correct).  He even wrote to my GP telling her that I had been doing some research about some of my algorithms, including non-competitive atrial pacing and that he was willing to try turning this setting off to see if it makes a difference.  It was turned off and it does make a huge difference symptom wise, so my research paid off.

You will get there, I know, particularly if you manage to return to clinic a few times to have your settings optimised during treadmill testing, when you will have the opportunity to ask questions.  Has your clinic given you an email address you can use to contact them?  It is good to write questions down and to have these answered in writing too. 

Settings, settings, and more settings

by AgentX86 - 2023-05-09 13:04:12

There are so many settings in a modern pacemaker that it's a full time job to know what they do and likely impossible to know the details of every one for every model of pacemaker (just take a look at the number of models Medtronic makes).  However, if you concentrate on a single model, yours, you may be able to decypher most of the information.  To make things simpler, get a complete report on your settings and start by learning what each of those mean.  Then looks at the others that might be interesting.  Rinse. Repeat as many times as necessary until you're happy with your understanding (or wear out trying).  It should start with a report of your current settings.  I don't know how this is done in the UK but here in the states, all we have to do is ask the device tech.  All patient information must be made available to the patient. Some  may cost a duplication fee (images) but they must be made available. Most facilities comply without any hassle so there is nothing keeping the tech from giving the patient the information.

Again, this is in the US but I've never had any trouble asking what a setting does or for a change.  Some changes need the EP's OK.  Some settings can be changed by the tech without the EP's prior authorization (rate response, etc.).  Find out, if you can, what the rules are. It sounds like you get very little support in the UK.  I can't imagine, for example, going to the GP for anything related to my heart.  It's not in their job description. They're essentially well-care only.

Gemita - Re: Max Tracking Rate

by Penguin - 2023-05-09 15:11:28

This extract from an article I recently read, may explain your techs response to increasing your MTR. 

'The maximal tracking rate is the highest ventricular pacing rate allowed in response to atrial sensing and is typically set at 110–150 beats/min. This cut-off feature is designed to prevent excessively rapid ventricular pacing during supraventricular arrhythmias.'

Note the distinction between the maximum activity-related rate, (the highest rate the pacemaker will fire during exercise as part of its rate-responsiveness,) and the maximal tracking rate, (the absolute highest the pacemaker will fire in response to atrial sensing.

Could this be why the tech didn't want to increase your MTR further? 

As for a list of all of my settings and an explanation - Pipe dream! 

Penguin and AgentX86

by Gemita - 2023-05-09 17:06:46

Penguin, yes you are absolutely correct about the Maximal Tracking Rate (the absolute highest the pacemaker will fire in response to atrial sensing).  I have always been told it would be dangerous to push my ventricles too hard and in any event, pacing above the MTR could trigger further atrial tachy arrhythmias which I can well do without.  It  doesn’t stop me wishing though that I could exceed these limits just to fully test the algorithms that have been set up.

Do you mean that you haven’t received a full data download of your Pacemaker Settings either?  I did receive a CD of all my Reveal Linq downloads some years ago when it was explanted after 3 years, so I got lots of ECGs, arrhythmia/event details.  It was so helpful.  I have also received Annual Summary Sheets of my essential PM Settings since implant in 2018, but not a complete list of all my Settings.

AgentX86, when I last saw my EP I asked about my data downloads and whether I could receive a copy.  He said I would need to ask the technician about specific Settings at the time of my pacemaker check, but of course there is only limited time, so I have formally requested a copy now and have been waiting since last November!  I am absolutely fed up of chasing this and am ready to give up.  Clearly this is not a priority for them.  I will ring them tomorrow and try to find out (after having sent no fewer than 8 email reminders) when I might receive my data? 

On the whole though we are quite fortunate being so close to London and are both still getting reasonable care in our main London Hospitals.  The situation locally though is worrying and I don't know how it will all end.  Hope you are okay AgentX86

List of Settings

by Penguin - 2023-05-09 18:24:25

A list of all settings 'should' show up on each pacemaker print out, but this isn't always the case.   Techs can select  / de-select the information shown on print outs. 

Don't assume that the 6 page or so print out that you receive is a full copy. It often excludes many of the analytics. Complete printouts I have requested are often more than 15 pages long.  

If you've sent various emails it's time to contact the Data Protection Officer from the hospital who run your pacing clinic. They may handle data subject access requests by asking you to fill in a form then wait 6 weeks or so for the data requested. Alternatively some Trusts will provide you with access to a patient portal which stores your information securely and you will be able to access it online.  Contact the Data Protection Officer or check the hospital website for the appropriate process.  They are usually very helpful. 

Data should be provided at the point of request e.g. in the pacing clinic. 

Update

by Gemita - 2023-05-09 19:35:39

Done all that Penguin.  Formally applied to Subject Access office Guy’s & St. Thomas’ hospital.  Provided them with a copy of my UK Passport as well and completed the necessary form.  They responded about a backlog and that I was held in a queue.  Then 2 months ago that I would have my data within days and I am still waiting!   I agree it would be so much easier if the pacing clinic could provide this information when I see them. 

Update:  Rang this morning and was told they would escalate my request for data - probably take another two weeks.  The delay has been caused by a computer failure

Gemita

by piglet22 - 2023-05-10 08:37:45

Go for it.

Computer failure, Brexit, Covid, supply chain issue, weather, climate change, El Nino, La Nina.

Do they not have computer technicians? I daresay that many NHS systems are still running Microsoft XP.

The list of excuses gets longer. I had one today. A reply from an email I sent in November 2022. Outlook issue.

The UK is becoming a nation of excuse specialists and jobsworths.

The NHS is a fine example. Yes, very good if your leg is hanging off, but anything else it's join the queue. Like Moscow pre-Glasnost.

Despite high tech robotic surgery, gene therapy etc. which is cutting edge, it's in the back offices where the brakes are applied. We've all been there. Standing at the reception desk behind the screen while they discuss their fingernails. "Can I help you?"

As for getting a list of settings, that's data protection stuff, the opposite of freedom of information.

If I asked for and got one, I probably wouldn't understand it, but I would soon make it my business to find out.

Who knows? In a more enlightened time you might have the option of getting one and even some information on what they mean.

To be fair, most people don't want to know. You don't want all the settings of your car's engine management unit, you just want to drive it. If you want to know what makes it tick though, and tweak some timings and are willing to wreck the thing, you can.

Too much stuff now is software driven which is why it's harder to fix. The pacemaker is just a collection of components until the coding brings it to life.

However, you do have something inside you that has a large influence on your daily life and they do have an obligation to tell you something about how it's set up.

Again, it comes down to who and where.

Piglet

by Gemita - 2023-05-10 12:03:28

Piglet, lots of food for thought, thank you.  I certainly don’t want to tweak my current settings and wreck what is already set up since on the whole I have had enormous relief from pacing.  I just want to know how my device works, what my settings are, what they do and which settings could possibly be adjusted to help when I get symptoms from my arrhythmias.  As others have said in the past, if we can speak to our doctors about these technical matters, we are more likely to be listened to and this has certainly been my experience.  Yes we get some surprised looks, but most good doctors will respect a patient who has done some homework.

The purpose of my post is to find a better way for us arrhythmia sufferers to work with our doctors to optimise settings, perhaps in a similar way members work with technicians during treadmill/exercise testing.  When I get symptoms from increased arrhythmias I don’t want my doctors to reach for another medication prescription.  Instead, I want them ideally to offer to look again at my settings, to see whether these might need adjusting?  Unless we continue to challenge our doctors and our pacemakers, we will never know just what is possible in the future.  We need to keep pushing the boundaries to find another source of treatment since meds, cardio version and ablations are still far from perfect.

Piglet are you saying that our doctors can refuse to give us a list of our Settings because the data is protected?  That would certainly make sense for their reluctance.  However I have heard that some UK members have received full Settings data on a memory stick in the past, although not sure about the current situation in the UK or elsewhere?  I have certainly received Annual Summary Sheets of essential Settings since 2018 to the present.

Frustrating

by Penguin - 2023-05-10 13:09:06

I'm picking up reluctance too.

The data you want is not protected. 

Frustrating - yes immensely.  

I Share Your Frustration

by SeenBetterDays - 2023-05-10 18:14:47

Gemita, I completely relate to your frustration with accessing your settings data. As you know, I have unresolved issues with fatigue and, as part of my quest to recover, I thought it would be worthwhile reviewing my settings. I know that this may not be the root of my symptoms but my thinking was it would be worthwhile investigating this if only to rule it out as a potential cause. I submitted a subject access request which took forever to process and then was provided with a written sheet of basic information such as my max tracking rate which I already knew.  What I requested was a complete print out of all my settings. I don't know why this is so difficult to obtain. Whilst I appreciate that some patients would rather leave the settings to the medical professionals, there are surely many individuals, including yourself, who want to take a more proactive role in their treatment.  I am frustrated with the line that the pacemaker is working fine. How do they know if it working fine for me? Surely, as you pointed out, the idea is we optimise these devices to achieve maximum quality of life.  I understand that time and resources are scarce but this is a piece of equipment which effectively runs my heart. Surely we should all be entitled to access full details of our settings so we can go away and do our own research. At least then we can ask informed and relevant questions of our health professionals rather than working in the dark. Keep persisting Gemita and let us know if you get any further. I completely support your sentiments and hope you finally get the information you need.

Frustration

by AgentX86 - 2023-05-10 22:30:34

It's been my experience, at least on this side of the pond, that the medical staff is almost always great at their job and do the best they can for their patients.  They are human, of course.  I've also found that admins are uncaring, lazy, and generally stupid. The fact they are humans is sometimes a wonder.

"Never ascribe to malice that which is adequately explained by stupidity."

                                                        - Napoleon Bonaparte

Self reliance

by Gemita - 2023-05-11 05:20:41

SeenBetterDays,

Thank you for your support and comments. Fatigue is debilitating and I know it well.  It is a symptom I experience primarily in the presence of my arrhythmias, particularly Atrial Fibrillation, a symptom that can come on suddenly and last well after an episode has passed. 

A complete review of settings is important from time to time and not in my experience always routinely done, especially after any significant changes in our health condition or medication which can affect our pacing requirements too.  Fatigue, although common and with many causes is often the first sign for me, at least, of worsening heart rhythm disturbances from whatever source, including from pacing itself.

Your comment:

“I submitted a subject access request which took forever to process and then was provided with a written sheet of basic information such as my max tracking rate which I already knew.  What I requested was a complete print out of all my settings. I don't know why this is so difficult to obtain” 

completely mirrors my experience at my clinic.   

In my experience once our basic diagnosis, for example for sick sinus disease or heart block has been treated with a pacemaker, that is usually it.  Settings may stay the same for years, nothing further is done other than annual checks of leads/battery status and looking for any significant “events”.   Settings are rarely fully reviewed unless we get specific symptoms like breathlessness and poor exercise tolerance and even then, treadmill testing to help optimise settings is certainly not always offered unless we ask.

As for arrhythmia sufferers, pacemakers are rarely seen as a potential tool to help treat an arrhythmia like say Atrial Fibrillation, so again settings usually remain untouched for years.  I believe it is high time to see our pacemakers as a most definite tool to help with any rhythm disturbance providing they are correctly set up to suit us individually.  For example, I was recently told by one rather insensitive technician that to turn off a particular setting, would in his opinion be a red herring since the real problem was my arrhythmia, Atrial Fibrillation.  I decided nonetheless to discuss my concerns with my EP who was willing to listen and thought it was certainly worth trying, so we switched off a setting which appeared incompatible with another already running.  Since doing this last October, I have seen quite remarkable improvements in both my symptoms and the number of AF episodes I am getting, so this is just one example of at least trying to optimise settings to help improve quality of life.  We can always restore settings to their earlier values if the changes prove ineffective.

I hope your symptoms improve SeenBetterDays.  At least we are both trying to help ourselves and in the current climate this is proving absolutely necessary

AgentX86

by Gemita - 2023-05-11 05:39:02

Yes, I agree most health professionals do their very best for us most of the time and let us be honest, not all patients are easy to treat or try to help themselves occasionally.  I hope Admins of the Pacemaker Club are not uncaring, lazy or stupid though?

no changes in setting for me

by new to pace.... - 2023-05-11 07:18:16

I have had a Medtonic Pacemaker MRI Surescan since Aug 2019. I  go to the pacemaker clinic once a year, around the anniversary date.  Where they check with that puck over my pacemaker.  Last time it would not stay so i had to keep it in place.  Have the  nightly and quartly remote transmissions.  I now know to contact the clinic about a week later for a copy to include the log events and sumary.  One time they gave me 59 pages which included graphs which i could not read.  

I have not had any changes to the settings yet.  Still not on any anticogulant.  Only one time have i been notified that i was having to many A-fib episodes.  Told them it was a reaction to a supplement which i then stopped.The Cardiolgist did not ask me so she scheduled  a stress test and echo to see if any problems.  Of course did not have any. Have not heard from anyone since this past fall.

Have not seen the EP since my implant and see the cardiologist once a year.

New to pace

Thank you new to pace

by Gemita - 2023-05-11 07:36:58

I think your post perfectly illustrates just how much information is out there to share especially for those who want to follow these things.  59 pages of data.  That would be a dream and really useful to answer many of our questions without perhaps bothering our doctors.  We could study the results, then look anything up we didn’t understand.  Thank you so much for sharing your experience.

I think most of us only see an EP when there is a need, so despite your episodes of Afib, it looks as though you have got these under firm control and no one is really worried about you.  That is largely thanks to your lifestyle and self help measures that are clearly working for you.  Long may it last

Setting changes to minimize arrhythmias

by Rch - 2023-05-13 17:16:08

For PMT ( pacemaker-mediated tachycardia): In my case a slight prolongation of PVARP, as well as ensuring a good atrial capture seemed to have solved the problem. However, excess prolongation of the PVARP, could also precipitate RNRVAS in a dual chamber device in AV sequential pacing mode. This arrhythmia is a known trigger for A Fib, Flutter or A Tachycardia. Shortening the paced AV delay could minimize the risk of RNRVAS by prolonging the VA interval so that the antegrade sensed or paced atrial beat could fall after the PVARP times out. I have also read somewhere that rate adaptive dual chamber pacemakers are a risk for the RNRVAS if the rate is set for a brisk rate response. Others on this forum may have an opinion on that. In my case, the RR was turned off due to inappropriate ApVs tachycardia with simple left arm swinging movements. The only other setting change that could help to minimize arrhythmias, is to control the ectopic beats PACs or PVCs , and in my case a slight increase in the basal rate from 50 to 60 might have helped that, I think!!! 😀 A lower basal rate could also be a trigger for some arrhythmias including the RNRVAS in the DDDR mode!!

As far as I know there are no corrective setting changes for AsVs or Vs associated tachyarrythmias. These are intrinsic or physiological arrhythmias and the device can only sense these. It’s only when the device tracks (V pace) an arrhythmia over the MTR, that the algorithms quick in to dampen the rate. In ventricular bradyarrhythmias however like in A fib with slow V response, the device can mode switch to raise V pacing to a preset V rate. 

Settings changes to minimise arrhythmias

by Gemita - 2023-05-13 20:45:19

Hi Rch, thank you so much for your valuable contribution to my thread and for reporting the settings changes which made such a difference to your quality of life.  I can see that your problems were pacemaker induced and that you had to work hard to get some answers from searching this site. 

Rate Adaptive pacing seems to be a definite trigger for my atrial arrhythmias and they have temporarily turned it off.  Control of my atrial ectopic beats is my number one treatment for my tachy arrhythmias.  Like you, raising the base rate has been incredibly effective for me as has atrial overdrive pacing algorithms.  Some of us have a feature known as rate smoothing.  These rate smoothing algorithms overdrive pace the atrium by pacing at a rate just above our intrinsic rate and smooth the atrial rate by pacing after atrial premature beats, preventing short–long cycle lengths.  This really works for me.

Of course we mustn’t forget the Mode Switch feature which definitely controls an atrial tachyarrhythmia and this often needs adjusting to make it sensitive without causing symptoms.  For example a sudden rate drop at the start of automatic mode switch can cause symptoms for me reducing cardiac output.  Rate smoothing algorithms gradually decrease my ventricular rate from the rate at the time of the automatic mode switch, to the sensor rate or the lower rate.  I believe mine is set to activate when the atrial rhythm shows a sudden increase of around 15 beats over the current atrial rhythm and the pacemaker immediately switches to a non tracking mode, avoiding ventricular tracking of the high abnormal atrial rate.  It is a very important setting for us arrhythmia sufferers, but it may take some adjusting to get it just right.

Rch, I am not sure that I would call slow AFib a ventricular bradyarrhythmia although it certainly feels like it.  It is an atrial arrhythmia with a slow ventricular response rate.   I am also not aware that Mode Switch can be used to help with slow AFib by raising the base rate during mode switching?   My mode switch is only activated by the sudden onset of a fast atrial rate after a certain duration, not by a slow rate.  Anyway, I will say goodnight and thank you again for your help

You amaze me

by Gotrhythm - 2023-05-16 15:12:49

It's probably no comfort to you, but your posts often serve to remind me that I have a lot to be grateful for. My issues heart require no medications and only the most basic pacemaker.

I'm sorry you're having a hard time navigating the very complex interface between your complex arrythmias and a complex pacemaker. I wish I did know something because I would love to help you as you have helped me and others. You always amaze me that with all you deal with, you still willing to use the energy you have in order to share your knowledge, wisdom and compassion with so many here.

Quite literallly, I don't know how you do it.

I do know this. If there is an answer, you will find it. And then you'll share it.

But you have helped me

by Gemita - 2023-05-17 10:30:50

Gotrhythm, thank you for your generous comments  You have been a good teacher and have certainly helped me and many others over the years.  Through your posts we have learnt to ask those all important questions.  And your latest RNRVAS update is part of the reason why I started this thread.  I was so inspired by your discovery that you could have something as unlikely as RNRVAS which Penguin posted about as the cause for your many difficult rhythm disturbances that I had to make this post.  I feel there are too many of us in trouble where a simple Settings adjustment could just make a difference.

You managed to get them to look at your Settings again by asking that all important question after doing years of research to try to understand what was going on.  A correct diagnosis and a simple change from DDDR to AAIR has made all the difference to your quality of life.  Your post has given us all hope and I am even more encouraged to continue to look for ways to improve our pacing experience by tailoring those settings to suit our individual needs.

Pacer settings for my VVS

by bowlrbob - 2023-05-21 21:12:47

I have Bradycardia and along with that without warning my heart reacts to the vagus nerve when for whatever reason it gets overstimulated. Then the nerve just tells my heart to stop. So my pacer was set to 70 beats per min. to keep the Bradycardia at bay. Then they set my Pacers rate drop feature. I assume all of today's pacemakers have this feature. I have a Medtronic. It is set to recognize when my heart rate is dropping quickly. This lowers blood pressure and dizzyness or a pass out is next. When I get a rate drop my pacer is set to go up to 100BPM and stay there for 2 minutes. Then it slowly goes back to 70. I don't feel it very often so I am not sure how often this does this but when I first got it in my reading showed I have about 4 of these a day. I am on my 2nd pacemaker now and have had this one for about 7 years. This one was set the same as the last because it was working so well for me. Since the settings were put in in 2006 I have only had 1 episode that caused a very small and quick blackout. I did not fall or pass out

from that. I have lived a normal life since 2006.

Vaso Vagal Syncope Settings

by Gemita - 2023-05-22 16:19:09

Thank you so much Bob for your contribution and I am so glad to hear that your pacemaker has helped you to live a normal life since 2006.  This is very interesting because I also have Vaso vagal syncope which isn’t always helped by my pacemaker especially when my blood pressure plummets.  As you know, the pacemaker is unable to help with falls in blood pressure as it can with falls in heart rate.  I can still get pre-syncope spells.  I have considered asking about Rate Drop Response since I have a Medtronic pacemaker but I know like Rate Response, Rate Drop Response can be difficult to get adjusted to suit each one of us.

Do you by chance know your Rate Drop Response settings?  No worries if you don’t.  I just thought I would ask.  I am still waiting to receive many of my settings.  By the way, I have vaso vagal “swallow” syncope because of high pressure oesophageal contractions which can trigger a very fast tachy arrhythmia which can take my breath away.  Before my pacemaker, I had several syncope events because of this, but these have improved