Morning all,
I have a question, I have a pacemaker and am still very aware of my AF but feeling very dizzy and have low BP regularly,my pacemaker appears to pulse a few times every day but not sure what that is?
More aware of my AF than usual which I do not like at all. Any ideas?
Thanks Wendi
Contact the pacemaker clinic.
Yes thanks Peter Have left a message with them.
I had my pacemaker fitted in July and had dizzy spells and felt light headed quite a lot as I had prior to it being fitted. I wondered if it was because my heart rate was in the 70's after years of being in the 40's. In the past couple of months the dizzy, light headed moments have practically stopped except when my BP drops below 115.
I've not been aware of any rapid heart beats though the pacemaker clinic said that quite a few had been recorded. For some reason I am rather aware of my irregular heart rate for a while around 9pm but it passes and I try not to lay on my comfortable left side as I am then aware of it.
Hi Thanks,
I am awaiting a call from the pacemaker clinic for an appointment.
Wendi
I hope that you get one who is prepared to communicate and answer questions. I have not had much luck in that way. Usually I can get information from people. At my first check up the woman doing it was teaching someone who got all of her attention.
The next time at a cardiology appointment the registrar asked for me to be fitted in as I was there to save coming back the following week for a booked appointment. This one was rather miffed at his lunch hour being delayed and I was in and out in seconds with no questions allowed.
Last time was a bit better but my GP never seems to get a detailed report from them.
Yep, sounds slightly familiar! They just don't have time, every day job to them but overwhelming when you can't get an answer
regarding something like this!!
Never mind soon be summer!!!
Wendi
Hi Wendi - I have only just read your post. I agree with PeterWH that you contact the pacemaker clinic. You don't say how long you have had the pacemaker. I have had mine since August last year. I had to go back a few times to get the settings adjusted before I felt ok. Before the settings were adjusted I kept getting sensations like 'jolts' in my chest when the pacemaker kicked in to help the bradycardia. I occasionally get feelings like pulses but tend to ignore them. Your pacemaker will not help with your AF, this is a separate issue. I have PAF and 'touch wood' since the Bisoprolol meds were increased to 5mg daily I have felt much better. I know many folk on this forum curse bisoprolol for its side effects, but I am willing to put up with feeling tired and a bit breathless as my PAF episodes have reduced dramatically since taking 5mg. I do hope you resolve the pulsing problem soon.
With best wishes.
Carol
Hi Carol,
Had it put in Dec 2014 and AV node ablation in March last year.
I know it doesn't cure AF but just doesn't feel right though for the last year I have felt great!
I had all of my treatment done at Freeman hospital in Newcastle, but have now been transferred closer to home for pacemaker checks so just waiting to hear from them.
Wendi
It could be that the pacemaker is set to do a check every eight hours. Mine was set that way and I was getting a strong enough 'jolt' for it to wake me up. Went back to the clinic and they turned this check off.
Hi Wendy,
I'll try to answer your q's. I've had a pacemaker for 8 years.
a) You will get used to the sensations...although, I still feel them. Sometimes pacemakers change from one setting to another to accommodate different heart rhythms, pauses etc. I tend to feel this the most as a jarring feeling. Try not to lie on your left side as this also makes a lot of people feel more sensations.
b) Ask for a copy of your pacemaker print out every time you go to the clinic and find out about your settings and how your pacing is affecting your heart rhythm. At the bottom it will show you what is happening in terms of "events" during the preceding months. This may help you to make sense of some of the sensations and worry less.
C) I agree with the previous poster. Pacemakers do not correct AF, but they pick up fast and irregular rhythms on the pacemaker print out and flag them up for the clinicians.
c) Re: the dizziness and low BP. You should check this out with the pacing clinic. Keep an events diary, so that they can locate the times / dates and heart rhythms on your device which records like an ECG. This will make it easier to adjust the device and to work out what is causing your symptoms.
There is a pacemaker club on the internet, who can help you with specific info and support. I've used them quite a lot and they are very good. Some people on there are experts and know so much! Give them a try if you need specific info and support. pacemakerclub.com/public/jp...
Hope this helps.
x
Hi, Thank you that is so informative, I do keep a record of my BP at regular intervals for my GP when I visit, was a bit alarmed when my HR went down to 40 but then righted itself pretty quickly have made a note of that also as that has also happened before .
Mind between that and hot flushes I don't know what's worse!! lol
Wendi x
Hi Wendi,
It could be that you have something called "hysteresis" on your settings. This is a percentage allowance which is a bit difficult for a dimmy like me to explain, but I'll try!
Basically your pacemaker is set to operate in a range, say between 60-120bpm.
Pacemakers have "algorithms" set to adapt pacing within that range. A hysteresis is one such algorithm.
With a hysteresis your heart is given a percentage of that bottom limit (say 10 or 20%) as an "allowance" which allows your heart beat to lower by that percentage before the pacemaker kicks in. This is to give your heart a "chance" to work before the device takes over.... pacemakers are domineering little so and so's and can pace you constantly which isn't always necessary...so this is helpful!
Therefore, if your lower limit is 60 bpm, 20% of 60 beats is about 12 beats per minute. This means that your heart beat would be allowed to drop below 60 bpm by a further 12 beats (to about 48bpm) before pacing would kick in. This may show up around 40bpm on your home pulse monitor perhaps?
A hysteresis can be set at 10%, 20% or higher / lower. At my clinic, most people are given a hysteresis of 20% on implantation to preserve the patient's natural heart function as much as possible. I assume this also preserves battery life....but it can cause patients to feel the "dips" in heart rate. Dizziness could be a symptom of this.
It's probably true that if you had a completely normal heart and rhythm and put a pacemaker in, you would probably get paced! This is because the device is a machine, not human, and it can only be programmed to produce reliable steady rhythms, which take little account of the effect that our "emotions", "hormones" and other human responses produce. Therefore allowing your heart to respond first isn't a bad idea!
You may have a hysteresis set on your lower limit and this may or may not suit you. Perhaps it is these "dips" in an otherwise controlled heart rate which are causing the symptoms of dizziness and you can't tolerate them.
The technicians can remove or reduce the hysteresis if it is bothersome. Maybe ask the technicians or take a look at your pacemaker print out to see what is set and then discuss it with them.
I may be wrong but this is a possibility.
x
Hi,
Went to have it checked last week and they not quite sure what happened but told me that I had been having runs of AF the longest being 26 hours where my hear rate was 140 bpm at one point, they thought that if my heart had been bumping along at a fast rate for a while and when I felt the side effects from that and put on my hr monitor that it picked up at the point my heart rate attempted to get back into normal rhythm and could have been low momentarily? in any event looks like pacemaker is doing what it should but they were surprised that I do not take any arrhythmia meds anymore considering the frequent runs of AF that I am having so have been referred back to cardio at my local hospital to discuss restarting meds.
In the meantime any runs of AF that I am aware of that begin to make me feel unwell
then back off to A and E was there advice.
However I will watch and wait as going there would be my last resort!
Wendi
They are long runs of AF. No wonder you feel rough! If your pacemaker is keeping things smooth within it's parameters and then you are going through really fast rates outside those parameters you would feel the difference I suspect.
Ask about that hysteresis perhaps? Going from runs of 130 down to 40 must make you feel rotten.
Are you going to accept any meds for the AF?
I am really sceptical as when I was on them a few years ago I had no energy to do anything?? but having said that I was on 100mg metoprolol and 200 mg of flec!! ,hopefully a low dose of metoprolol might do the trick? am so pee'd off mind
as thought Id seen the end of meds and A and E!!
Wendi
I empathise. I ended up with a pacemaker due to meds and take nothing now. I also avoid A&E ....
You will find that now you have a pacemaker A&E is a different experience. They tend to do very little and refer you back to the pacing clinic....or at least they do when they consider that the pacemaker is doing it's job.
Can you have an ablation for the AF? Might that avoid the meds?
I've been told I may have to take meds if my atrial tachycardia becomes more significant. Ironically it was caused by mistakes with pacing which in turn, was put in place due to medication effects!!!!
I'm taking a wait and see approach rather than jumping to pop more pills which only seem to cause more problems for me!
I share your frustrations....and menopausal symptoms !! (lol)
Have had four ablations with v limited success and av node ablation so totally dependent on this pacemaker, I am keeping a record when possible so I can discuss it when they decide to send an appointment!
Just want a pill to take it all away but know that's never going to happen!
Thanks for giving me the time to chat as I get really frustrated when things not right!
Wendi x
No problem....I'm in a similar place. PM me anytime if you want a chat. I've been through the mill too....but through a slightly different route!
In my experience pills don't take it all away....they complicate things!....but medical science is based on dishing them out.
My husband pops everything they give him and thinks me quite mad not to, but hey we're all different and have different experiences of medication and it's effects.
x
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