Fed up

Near syncope

by AgentX86 - 2020-05-05 21:56:47

Of course we aren't doctors here but this sounds like "postural syncope" to me.  This would have nothing to do with your pacemaker, hence everything looks good when you go to A&E.  They're looking in the wrong place.  It could be that your pacemaker was only part of your problem and now that that part is fixed, another problem becomes apparent.

You don't say why you have your pacemaker but VVI isn't nearly as good for you as DDD but if you can't take it there may not be a choice.  I'd try to find out why.  Mine is set to VVI so it ignores the dance the atria are doing but the cost is AV dyssynchrony (the upper and lower halves of my heart don't beat togther).  If you have a heart block, you'd be in the same situation.

PRE SYNCOPE

by Gemita - 2020-05-06 07:25:24

As a syncope sufferer I do understand the difficulties you are experiencing.  The problem is of course that the moment we present to A&E, the syncope/dizzy spell event has often passed and our ECGs, heart rate and blood pressure are all back to normal and our doctors then try to reassure us that our pacemakers are working normally and all is well.  

To catch what is happening during these dizzy spells requires long term monitoring.  Yes we have a monitor in our pacemaker but that is only monitoring what it is set up to monitor and will not necessarily show the cause of a dizzy spell, since a dizzy spell can also be caused by other health conditions especially sudden changes in blood pressure and low blood pressure for instance cannot be controlled by our pacemaker as can a low heart rate.  I have had drops in my blood pressure to 80/47 and this can really destabilise me.  What can often cause my sudden changes in blood pressure (increases and falls) is an arrhythmia like Flutter or Atrial Fibrillation as well as complex gastric issues when my blood pressure can become unstable along with my heart rate.  However although my pacemaker may control a fall in my heart rate, it cannot control a sudden increase in heart rate which can certainly set off a syncope event if it is fast enough.  Do you have an arrhythmia by chance?

So my advice is go back to your clinic.  Ask for long term monitoring or whether your pacemaker can be set for a period of a few months say to pick up all arrhythmias, including so called benign premature atrial and premature ventricular contractions as well as any other more serious rhythm disorders to account for your dizzy/pre syncope spells, and to give you an indication of your lowest/highest heart rate during the period.  At the same time you could keep a diary note of your symptoms (the date, time they occur) to correlate with anything that is seen/confirmed by your pacemaker. Tell them quite frankly that you are not satisfied and that clearly your symptoms are telling you that all is not well.  Maybe remind them that when they see you in A&E, interrogate your pacemaker, do an ECG or check your blood pressure, they are only seeing you for a brief period of time.  Your symptoms are clearly happening at other times and therefore you need long term monitoring to catch the problem.  Have them check your electrolytes frequently since deficiencies/excesses can play havoc with our hearts and a lot else.  Are you drinking enough fluids??  Increase salt intake if it is safe for you to do so, if your blood pressure goes low. Don't ever get up too quickly from a sitting or lying position as that can cause it especially during periods of sudden blood pressure/heart rate changes.  I keep a blood pressure  monitor which always confirms blood pressure instability when I experience dizziness.  I also check my neck pulse and can immediately feel heart rhythm changes during dizzy spells. In your shoes I would be monitoring my blood pressure and correlating this with my symptoms and then take the evidence to your doctors.  Are you on any medication, like a beta blocker ?  I am but this clearly can lower my blood pressure also.

Looking at your history, it would seem you needed a pacemaker.  My gut feeling is that because of all the problems you have had with leads and pacing so far, your pacemaker still hasn't been fully optimised for you.  Also, I absolutely cannot tolerate being paced in my right ventricle alone when I have arrythmias dancing in my atria and my pacemaker takes over and paces me.   Everything seems to deteriorate until my pacemaker switches back to pacing in the atria.  Of course you need a good doctor who will listen to your concerns and who will spend the time adjusting your pacemaker to suit you.  You have a young baby and your pre syncope/dizziness puts your life and his life in potential danger and needs to be controlled.  Remind them of this frequently as you struggle for answers. 

It is early days and the implant site will still be very tender from the additional lead procedure you have had and it may have traumatised surrounding tissue/structures which might account for your pain symptoms. There may be inflammation present too that may not show up on say any scans or investigations.  Did they give you any safe pain relief or a short term anti inflammatory?  My pacemaker is set AAI to DDD and my lower heart rate is set at 70 bpm.  I feel better when my heart rate is higher.  Your 50 bpm heart rate would be way too low for me and allow lots of unwanted ectopic beats through and these would play havoc with my heart rhythm/heart rate.  Maybe ask whether it would help to increase your heart rate to at least 60 bpm.

Twitching - perhaps following link may be helpful ??

https://link.springer.com/article/10.1186/s40981-019-0257-7

Thanks both

by Savannah55 - 2020-05-08 16:38:25

I was switched to VVI pacing the day after my lead replacement op as my heart rate was constantly around 100bpm (doesn’t sound high but when you’re used to 40-50.) and I had the most uncomfortable palpitations. 

They did warn that VVI would cause dyssynchrony but not that I would feel like I did before the surgery!

I have now got a blood pressure monitor and have been doing some posture change tests and can say that there is only very minimal change (less than 10). The hospital also ruled out postural hypotension.

One thing I have noticed is that when I am being paced my heart rate drops to just above the 50bpm mark- is this normal? When standing up I notice my heart rate drops but that seems to be because the pacemaker is kicking in! 

Getting through to my consultant is near impossible..... my first pacing check isn’t until the end of the month and they advised it would be via telephone due to covid-19 :(

Heart rate

by Gemita - 2020-05-08 18:34:06

if you can capture with your blood pressure monitor what your heart rate is BEFORE the pacemaker kicks in, this would be helpful.  Perhaps your heart rate goes high intermittently and then suddenly collapses to a low level at which stage your pacemaker is programmed to kick in to keep you at a minimum of 50 bpm?    Maybe it is a sudden drop say in heart rate that is causing your dizziness/presyncope.

I would phone your pacemaker clinic and ask if there is a "sudden heart rate drop intervention feature" activated on your pacemaker?  If so, whether it can be adjusted so that you are not so symptomatic when the feature is automatically activated?  Read to them your question to us contained in your penultimate para. and see what they have to say.  I think you are getting closer to the problem by writing down your thoughts.

if I understand correctly when your pacemaker kicks in, it keeps your heart rate just above the 50 bpm minimum set rate.  This would appear to be normal since your lower limit is set at 50 bpm.  Your statement that when standing your heart rate drops is interesting.  Do you know what it starts off at . . . and does it drop to just above the 50 bpm minimum or lower?  Get this information and you can then have a constructive conversation with your pacemaker team who can perhaps contact your EP for advice.

good luck