Heart flip flopping again?

Last night I had the flip floppy heart again for about half an hour. I duly dialled in sent a reading via my home monitor. Just phoned the pacemaker clinic. Last night, apparently, my heart went into atrial bigeminy which she says theyre not worried about! And there's nothing they can do. Last Saturday when I got the really slow 60 heartbeat and felt terrible I was in AF and the pacemaker is apparently set too low at 60 so they're sending me an appointment within a month to increase the bottom rate. 

I really can't cope with this. I've swopped AF for another arrythmia now which they don't seem to be able to sort out. I just can't stop crying! 


12 Comments

Will write later

by Gemita - 2022-08-23 06:19:22

Toni just popping out to see GP.  Please remember 60 bpm base rate is too low for patients who have been through AV Node ablation - this should have been set higher at the beginning as I mentioned previously.  A higher setting can make all the difference.  I still have great confidence that this can be sorted and your symptoms improved.  Push for an early appointment to get that base rate (lower rate) increased.  This is usually to 80 bpm or above initially for several months.  This can make all the difference to ectopic beats.  I have atrial/ventricular bigeminy and it has all but been eliminated by my higher base rate setting (of 70 bpm).  Please be encouraged Toni.  Have a good cry but remember this will get better.  There is lots they can do

((((Toni))))

by Lavender - 2022-08-23 09:22:41

Hugs. It's hard to hear about new and unexpected unwelcome symptoms. Gemita, bless her, has been through much and can reassure you. Given that the doctor is not alarmed, it sounds like something that will be easy to handle. I want taken care of asap, but usually we have to wait. 
 

You certainly do not want to have more to deal with on this journey. I do trust that the solution will come. Please do push to be seen sooner for the adjustment. It sounds frightening to have your heart bouncing in there. 
 

By the way, you CAN cope with this. You are doing so. Crying will just stuff up your head giving you problem number two. Chin up. Get angry. I find that my usual pattern is sadness, quickly followed by anger and determination to get answers and get help.  
 

Stop caffeine, alcohol, and nicotine. Make sure you hydrate with water and eat a half a banana for breakfast if your potassium is low. Some, like me, with low blood pressure, need more salt. Some with high blood pressure need less salt. 
 

This will be resolved. It will. All will be well in time. 

Despair!

by toniorr11 - 2022-08-23 11:15:48

Thanks Gemita and Lavender. 

I feel such a woos. I went to the GP and sobbed for 15minutes solidly! They contacted my cardiologist and I just got a phone call to say I've got an appointment at clinic next Wednesday at 3pm. My GP gave me some sleeping tablets and another appointment to discuss anxiety medication. I am just really at the end of my tether. I am having trouble believing that this has a solution. 

Tolerance of symptoms

by Gemita - 2022-08-23 12:23:03

Toni, only you will know what you can comfortably tolerate in the way of symptoms during your arrhythmias, so you must be guided by what your body is telling you.  If you are in trouble and cannot wait to be seen at your own clinic, then please go through your local A&E hospital dept.  I know it will be a long wait but they should have access to cardiology departments and a technician would then be able to increase your base rate to make you more comfortable.  

A base rate increase can be made by any good pacemaker technician, so you don’t have to wait for your clinic appointment and you can still keep your appointment to go back for an additional check, so something to think about if you get into difficulty.

I am currently at the hospital on GP's advice having a few checks because of unusual arrhythmia activity.

Stay strong Toni and you will get through this xx

60bpm

by AgentX86 - 2022-08-23 13:01:22

My EP set my PM to 80bpm after my AV ablation.  According to him, it was required to avoid serious complications.  It could then be lowered to 70bpm, then 60, over the next few months.  I never got below 70 when my bigeminal PVCs started, so he raised me back to 80bpm and I've been there for four years.

I know you must be freaked out but it's early.  There is still settling in to be done.  We're all different so it might take a little time for your heart to settle down and for your EP to get everything optimized for you.  It sounds like he knows what has to be done.

No name calling allowed

by Lavender - 2022-08-23 14:03:14

Especially not allowing self name calling 🤭

YOU ARE NOT A WOOS! (wuss here in the USA)

: a weak, cowardly, or ineffectual person : wimp. Don't be such a wuss. acted like a total wuss. I am not a wuss; I refuse to be undone by fear.
 

I do not see a weak person undone by fear. I see a woman who's undergone some truly scary stuff who's intelligently seeking answers. My gosh if my heart flippity flopped-I would be hightailing it to the emergency dept or at least calling the cardiologist's emergency number. You did what you were supposed to do-used your monitor to transmit. 
 

The thing is-if it was life threatening, you would be sharing a hospital room with Gemita. Her gp sent her to the hospital. Yours said go home. By the way, the dedication award🎖goes to Gemita for responding to the pacemaker club from her own hospital testing! 
 

So now attention has been brought to the need to adjust your heart rate so it can keep ahead of the crazy beats. You're not the first to go through this and due to life being a learning process-you won't be the last. 
 

Now get some rest and may the God of the peace which surpasses human understanding shower you with blessings and comfort. May the angels encircle you with healing thoughts and calm. 

Bigeminy

by toniorr11 - 2022-08-23 14:15:52

If it wasn't for Gemita, Lavender and Agentx and this forum I'd be in serious serious trouble. Gemita you're a star to offer support when you yourself are undergoing investigations in hospital. I'm truly grateful for your reply. Lavender, your caring words made me weep again! Why is it when someone is nice to you when you're down,it makes you cry! Duh! But I thankyou. And AgentX....the electrical expert.... I am forever in your debt for sharing your experiences which seem similar.  I don't understand why increasing the lower pacing limit gets rid of ectopics... does it really work? Because I can't live like this. 

Living like this

by Lavender - 2022-08-23 18:28:27

What choice do we have? We live like this-and keep looking for help because we are survivors. We can curl up in a ball and pull the covers over but when we peek out-our problem is still sitting there, tapping its toes sitting on the edge of the bed, awaiting our reaction. 
 

So now that you're catching your breath, and hopefully settling in for a good night's sleep, tell yourself that this WILL be fixed. In the words of Scarlett O'Hara...I can't think about that right now. If I do, I'll go crazy. I'll think about that tomorrow 😴After all... tomorrow is another day.

Increaasing heart rate

by AgentX86 - 2022-08-23 23:44:14

The heart's electrical system operates in a first-come, first-served system.  The first electrical signal to trigger the musle starts the chain reaction, then the heart muscle has to reset before it can be fired again.  Ectopic beats have some periodocity so if the pacemaker is set faster than the ectopic beat, it gets there first and the ectopic is overriden. It has to be set enough faster that the ectopic doesn't have a chance to get through. This doesn't work if the ectopic is too fast (rarely) but it works most of the time, is easy to try, and doesn't have any significant downside.  I had trouble sleeping at the higher rate so they enabled a night-mode so it slows to 50bpm at night.  It's going to be a real hassle if I travel abroad, though.

This doesn't work for any tachycardia, of course, because it wouldn't make sense to set the PM faster.  Afib, similarly, because the primary problem is tachycardia, not the irregular beat.

 

Higher base rate setting

by Gemita - 2022-08-24 02:03:02

Toni, following on from AgentX86 excellent explanation, I would just like to add, AF does have three possible speeds/ventricular responses:  it can occur at a slow, normal or fast heart rate.  

My own experience is that an atrial ectopic beat, being an irregular arrhythmia with a pausing, slowing, missing, skipping heart beat is often a trigger for AF.  You can read plenty of research into this if you wish to confirm the mechanism by which an atrial ectopic beat may trigger AF.  “Outpacing” an ectopic beat by setting the base rate higher can be effective in preventing ectopic beats from occurring AND if you can prevent ectopic beats you may prevent AF from being triggered.  

Although I primarily have fast AF at a fast ventricular response rate (I have tachycardia/bradycardia syndrome), during 3 years of Reveal Linq implant monitoring, prior to getting a pacemaker, I was found to have frequent bradycardia/ectopic induced episodes of AF.  My pacemaker set at 70 bpm has been an effective treatment.

When you do return to your clinic I would ask why your base rate was not set at a higher rate in the first place following your AV Node ablation which is the usual practice today?  It appears to have been left at 60 bpm (the factory setting).  From what I have read, they usually set the base rate slightly higher (at 80 bpm) following an AV Node ablation for a few months before slowly reducing.  This helps to prevent any serious complications, such as ventricular arrhythmias which can occur post-operatively, so unless they have a reasonable explanation, I would not be too happy about this apparent oversight?

My A&E visit yesterday was very helpful.  I was fast tracked because of chest pain and tachycardia.  Tests have so far ruled out heart failure which my GP was querying.  My symptoms are believed to be caused by an ongoing gastric problem and previous surgery (Nissen Fundoplication) which is beginning to break down.  Have already had extensive investigations for these so will need a specialist opinion now to try to resolve. 

Keep your spirits up Toni.  As each day passes and healing takes place, I feel sure your symptoms will ease

Complexity

by toniorr11 - 2022-08-24 09:34:36

Agent X. I understand re outpacing. I just hope it works. I'm doing absolutely nothing until I go to clinic next week. Keep the old adrenaline down! Gemita: I think it's difficult to understand, sometimes, that your heart is in very close proximity to your stomach and also your lungs. One tends to think of them as individual parts but they're all in a small compartment very close to each other. I had oesophagitis once upon a time and got a lot of ectopics but that was years ago. I use gaviscon intermittently now which works normally. It hasn't worked this time for me because it's not the cause of my ectopics of course. Anyway I hope they get you sorted. 

I shall definitely be asking why they left it at 60 for my lower rate. Unfortunately I don't like the technician that I keep talking to. She has said negative things or told me off every time I've spoken to her. I shall bide my time and say something to her...nicely! 

" three possible speeds"

by AgentX86 - 2022-08-26 11:25:23

Gemita, "the three possible speeds", less than, equal, greater than.  OK, that about covers it. 😉

Its hard to say what the heart rate for Afib is but assume you count over a ful minute.  Some of the beats will be much further between than others.  The pacemaker would have to be set faster than the shortest possible time between beats. This would probably be the fastest rate the heart could beat.  IOW, it might not be possible to outrun Afib once it's going and trying to do so would be the equivalent of pacing at tachycardia rates.  There are algorithms that will try to divert the signals before an Afib episode starts but even these have very limited efficacy. Outpacing AF isn't often successful.  Other, regular and slow arrhythmias can more often be outrun.

You know you're wired when...

Trade secrets can be smuggled inside your device.

Member Quotes

I have earned my Black Belt. I now teach class!