This too shall pass--I hope!

Had to come back & read some past messages about getting through the first few weeks/months to remind myself that things WILL get better over time. I'm two weeks in tomorrow & healing well physically, but this morning has been rough! I am having frequent dizzy spells, some just about as bad as when I was experiencing pauses. I try to walk every morning, but right now I'm thinking I need to just go back to bed & see if that helps. Two steps forward, one step back (or one step forward, two back!). I need to stay confident that time will bring improvement & have patience. I'm really posting this now to let others who are new to this know that they are not alone if they have bad days. Gotta stay strong & ride the storms to smoother sailing!  


I would speak to your doctors about your dizzy spells if they continue

by Gemita - 2021-02-09 12:58:50

Hello TLee, I sense you are having a hard time today and I can understand what you are going through.  Yesterday on and off all day, well into the night, I was struggling too and not with my pacemaker, but with my Atrial Fibrillation.  It was particularly persistent but fortunately it stopped at 0200 hours this morning.

Yes don’t try to fight it, just relax through it if you can.  When I push through it, it usually lasts longer.  Remember to keep well hydrated, since dehydration can set my Atrial Fibrillation off, as can a lack of sleep and undue stress.  Reduce caffeine and alcohol also if you can because caffeine (which is also in chocolate) and alcohol can trigger my palpitations rapidly.  You will learn what your triggers are as you move forward.  In the meantime, just hold on to the thought that this should all settle down, or at least be less troublesome, as you heal.

But do not be afraid to speak to your doctors if your dizzy spells do not ease.  It may be that you need extra treatment while you are healing.  Are you on a rate control medication (like a beta blocker or calcium channel blocker?)  I find when my heart rate is high it will cause dizzy spells, so do not suffer in silence.    Atrial Fibrillation may also adversely affect your blood pressure causing it to spike or to fall, so it is important to speak to your general doctor or to your EP/cardiologist if you think you need further help to quieten your symptoms down.  My cardiologist/EP has told me I can take an extra dose of my beta blocker (as a pill in the pocket) when my AF causes a spike in heart rate and this is what I do.  

Let us both keep strong.  

Thank you

by TLee - 2021-02-09 13:24:22

Thanks, Gemita. I did go back & lie down for a bit & that seemed to help. Still taking it kind of easy for today. I do drink coffee in the morning & would hate to give it up, but my A-Fib is often at its worst in the AM, so it might be worth going to decaf (I wish I liked the flavor as well as the real stuff!). My intuition tells me that going from a reclined position to upright, like getting up in the morning, sets something off. Maybe also the opposite, as I sometimes feel a rapid beat when I first go to bed. My doctor didn't seem to think there was much to this, but what do you think? I take Tikosyn (dofetilide) right now--was told it is not the best, but I also have chronic lung disease, which rules out some meds. The hope is that the pacemaker will allow other treatments for A-fib without the risk of slowing or pausing my heart rate. It is difficult to have patience when I still don't feel well, but I will hang in there. Honestly, the kind words from you can be the best medicine for now!   

Oh yes, positional changes can make a big difference for me too

by Gemita - 2021-02-09 14:30:00

Hello TLee,

Yes, I have always found that "positional changes" can make a real difference to the outcome of my arrhythmias and I know from speaking with many arrhythmia sufferers that they have had a similar experience too.  For instance last night just by rolling from one side to the other, I was able to stop my AF.  Often when I am lying down and my arrhythmia is incessant, by rising, I can stop it quickly.  Often the reverse is true as well, by lying down I can stop my arrhythmia which has been incessant on standing, so positional changes for me can really help change the course of my arrhythmias.

I believe Tikosyn is a heavy weight med.  I was on Flecainide and Digoxin.  I am only on low dose Bisoprolol now and doing so much better.  I found when I got my pacemaker my need for medication lessened.  Indeed my symptoms increased at first, but by reducing or stopping some of my meds, my doctors and I saw a real improvement in my symptoms, with fewer symptomatic episodes of AF and shorter lasting episodes too.  

Although beta blockers may not be recommended for those with lung disease, some beta blockers are highly heart selective (i.e. they do not strongly target other organs like the lungs, especially at low doses (including Bisoprolol which I take) and can occasionally be safely used.  My husband has COPD and is on Bisoprolol low dose with no ill effects.  You could also ask about a calcium channel blocker like Diltiazem as well.  But please do not rush in, be patient, trial and error is needed now to help stabilise your AF.  It is a learning process with your pacemaker.  It may well be that you need a medication review now that you have your pacemaker in place to help smooth out your palpitations.  Yes your doctors should be able to safely give you other treatments for your AF without risk or fear of slowing/pausing your heart rates which is why many of us get a pacemaker.

It is hard, I know, it is disappointing I know, but the problem is not I believe with your pacemaker but with your AF.  It is rebelling and it needs taming, but we always go in gently.  We never take out the sledgehammer, do we?

Additional comment

by Persephone - 2021-02-09 14:42:47

Hi TLee - while I don't have any experience with a diagnosis of A-FIb, I also went through a period after PM implant where I didn't feel quite right.  I definitely felt better but needed additional adjustments to be more comfortable, which took a bit of time.  The main purpose of my comment here is to say try eliminating the coffee.  You never know until you try; now might be the perfect time to let it go as you recover from your surgery.  I was able to shake myself out of the caffeine habit when the pandemic upended normal office routines; it's truly one of the best things I've done recently.  Now, instead of the caffeine jolt, I mainly feel my heart racing when I gaze upon my best beloved :)     

ODAAT (One day at a time)

by Gotrhythm - 2021-02-09 15:42:18

After I got my pacemaker, I was surprised that I still had good days and bad days. Admittedly, the good days were better, and the bad days weren't as bad, but still, it was up and down. What frustrated me most was that it was so unpredictable and hard to say what, if anything, caused the difference.

I haven't experienced A-fib, but I understand it can be even more erratic about when it will show up than other arrythmias. But really, only two weeks out, your body is still healing, and your heart is still getting used to being paced. Wisdom would say, you should probably expect that recovery will not follow a straight path.

For now, don't try to set hard and fast goals for exercise. You'll probably continue to have good days and bad days. Walk when you feel able, but when you don't, don't get downcast. You'll get better at dealing with life with a pacemaker everyday.

About coffee. I love coffee, but thinking it could be contributing to arrythmias, I tried cutting it out. It made no difference that I could see, so I went back to the habit for a few years. But lately, I realized it was bothering my stomach, so I sometimes drank it and sometimes didn't. On the days I didn't drink it, I noticed fewer arrythmias. I have since switched to tea at breakfast.

The moral of this story? The body is never static. It's always moving between this state and that. What it tolerates well today, it might not do so well next week--or next year. Do you have to swear off coffee for all time? Just don't drink coffee today. Maybe you could try just for a week or two not drinking coffee at all, and see what happens. Maybe, once the heart is more accustomed to being paced, it can handle coffee. Or maybe not. Or maybe coffee won't change anything at all.

The point is, now is time to take your challenges, whether exercise or diet, in little bites.


by AgentX86 - 2021-02-09 16:32:52

Please talk to your doctors about this and don't take a shrug for an answer.  Dizzy spells can be a precursor to syncope and thus quite dangerous.  Also, it may not be heart related at all so involve your PCP. 

For two years I'd been complaining about "dizzy" spells (not really around in circles dizzy but similar enough).  They only happened one day a month.  Always one day and never more often.  In that one day it might happen a half dozen or twenty times, then nothing, for another month.  Sometimes it would skip a month.  My vascular surgeon suggested that I keep a diary of each time it happened.  I used my cell phone to log each spell and describe the exact symptons (smell, feeling, hunger, what I was doing, and anything else that was going on).  I did that for a year and a half and still no one believed me. Because it was so odd, no one paid attention to me until I colapsed with a full-on tonic-clonic seizure.  Fortunately, I was just sitting in a restaurant.  Five minutes later and I would have been driving with my wife, DIL, and granddaughter in the car.  This is serious stuff.


Glad I already have an appointment

by TLee - 2021-02-09 17:10:51

I am seeing my primary on the 18th, and you'd better believe I will be telling him! I had been occasionally dizzy over the last couple of weeks & thought OK, A-fib acting crazy, it'll pass. Today has been one after another, and when I attempt any activity (I just now took the dog out for a quick walk) I feel light-headed & even sort of shaky/weak in my legs. I'm thinking that I may call & move up my 3 mo cardiologist visit to asap as well. Even if they find nothing serious & I'm back to wait-and-see, it will give me peace of mind. 

I would make an appointment tomorrow

by Gemita - 2021-02-09 17:26:18

to see your general doctor for some blood checks TLee.  He can check your electrolytes and look for other problems too as a cause for your worsening symptoms.  I wouldn't wait now to see a doctor.  You have been brave so far, but now is the time to act for your own safety and peace of mind I feel.  

If your general doctor is concerned he can always refer you back to your cardiologist quickly for an opinion too or even send you to ER for an immediate assessment.  I presume you are on anticoagulation for AF stroke protection.  This is vital if your AF is poorly controlled or responsible for your symptoms.  I hope you get some answers and respite from your symptoms quickly 


by TLee - 2021-02-10 11:02:20

Just a quick message to let everyone who was so kind & concerned that today is a much better day. I could tell that when I got out of bed this morning & didn't feel like immediately getting back in! I am a terrible hypochondriac, so I get really nervous when I don't feel well (sorry!!). I do think it is worth letting others who are going through this see that there can be days when you really feel BAD, so there's that.

**Also, yes, if I had continued to feel as rough as I did yesterday, I would have been at the doctor today!

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Member Quotes

I've seen many posts about people being concerned about exercise after having a device so thought I would let you know that yesterday I raced my first marathon since having my pacemaker fitted in fall 2004.