Bradycardia

Good questions for your EP

by AgentX86 - 2020-06-24 22:06:53

Yeah, you need an EP to find out what's going on.  You should have been referred to an EP long ago but I suspect your first cardiologist was right.  My bet is that you need the PM and you're endangering yourself, quirte possibly your infant, and even others, unless you get a handle on this.

A pacemaker isn't the end of the world.  It's more like the beginning of a new life and you can't keep going this way.  We've all been through some variation on what you're going through now.  For most, the PM gave us back our lives.

the need for pacing

by Tracey_E - 2020-06-25 08:53:51

They can do all sorts of testing to find out the cause, but the only cure for a low heart rate is pacing. Doesn't much matter the cause, the fix is not going to change. If you are symptomatic, if your heart rate is low enough to be at risk of passing out, then a pacer will make you feel better. Don't look at it as your life ending, it's simply a piece of really amazing technology that gives us our lives back, allows us to no longer live in fear of what will happen next.

One of my HUGE pet peeves is trying to put it off when we are young. They did that with me. I should have been paced in my teens but put it off until I was 27. I had several years where I could have been feeling great and thriving but instead I was always tired and dizzy because my doctor didn't want to pace someone young, he wanted to put it off as long as possible. I'm 53 now, looking back what difference does it make if I've been paced 25 or 30 years? One day my heart rate tanked, it was 22 when I was admitted for emergency surgery. I had no idea how close I was to dying that day until after. The easier thing would have been to have gotten the pacer when I first felt bad. 

I know it's a blow and it's scary, and the timing really sucks having a new baby, but don't be afraid of it. It's a fairly minor surgery, most of us heal and get on with our lives and forget about it. You want to be there for your baby, you want to have a full and active life, to not live in fear. 

Questions for the ep... make sure the ep knows about your lifestyle, what you do for activity. Some pacers are better suited for some sports than others. Ask about anesthesia and overnight stays, in the US we usually get conscious sedation and stay overnight, but it varies widely by doctor and country. 

If you have questions about living long term with a pacer, feel free to message me. I've been around this block a few times, on my 5th pacer, had two babies with it who are now 22 and 23. It's been inconvenient a few times but overall it's never kept me from doing anything I want to do and no one would look at me and see a heart patient. I hike and ski with my younger kid, run races with my older kid, took my Girl Scout troop on a mud run earlier this year. I'm in better shape than many of my friends with normal hearts and most of the time I forget the pacer is there. It's just a part of me and I feel blessed to have a condition with a fix. 

Loop recorder

by _Claire_ - 2020-06-25 09:43:08

Hi Priscilla

Sorry to hear you're having such a hard time, especially with a new baby. It must be terrifying. I have a little boy and I know how scary this all can be. But, pacemakers are not the end of the world, as the other guys have said, the opposite infact. 

I just wondered how long you had the heart monitor on? (holter or other type) When symptoms are episodic, loop recorders are much better at picking up these events that shorter term monitoring misses, and can give you a better understanding of the whole picture and exactly what is going on with bradycardia (if there are heart pauses too). They can monitor for 2 or 3 years. If you're still feeling dizzy now, you need to know exactly what is going on in those moments. Only a loop recorder can really give you those answers. There are less invasive types as well, which provide longer term monitoring. It might be wise to push for one urgently whilst you and your doctors are making a decision about a pacemaker, that way you are at least being monitored until you decide. 

Until then, do you have a blood pressure monitor that can record your heart rate? You need a decent one that will give an accurate reading. Fitbit and oximeters aren't always that accurate at heart rate (measuring from the extremities). Check it several times a day and keep a log. But I would push for a loop recorder ASAP as you have a baby in your care. You need to prioritised in my opinion. 

Remember for bradycardia, if you had a pacemaker it will only have to pace you for some of the time, when your heart rate drops below a certain level. Mine is set to 40bpm (which is the lowest my heart rate can go before it kicks in). I'm maybe a strange case, but I've had my pacemaker almost a year and it hasn't had to kick in once yet, as my heart only gets as low as about 43bpm. Yours will just be there to kick in for those times when your heart rate gets really low to stop you fainting. 

I'm living a normal life with my son and as Tracey_E said, there are much worse heart conditions and some can't be fixed. I also feel very blessed to so far, have a condition that can be managed. 

I wish you all the best

NEWLY PLACED PACEMAKER

by quality - 2020-06-25 23:59:22

I had a PM placed a month ago, it was life changing for me.  I found myself tired without exertion,so  I began  to monitor my heart rate which was down to 37. I was on atenolol 25 mg, for years as I was told I had a fast heart rate, so I stopped taking the atenolol.   I called my  cardiologist, who asked me to come in and he placed a holter monitor on me.  the next day I received a call from the company at 6 a.m. informing me to call 911.  I drove myself to the emergency  room (not wanting the bells and whistles in my complex)  I was admitted to ICU, a pacemaker was placed the following day at 7:30 a.m. I was back home at 6 p.m. eating dinner.  2 days later l felt my energy back.  I am ever so grateful for modern technology.   I just wanted to connect with others who has a PM, so I don't feel so alone.  I am still getting used to having a device. the scar is healing well.    Hope someone reaches out to me.  

Newly placed pacemaker

by Sisterwash65 - 2020-06-26 15:01:28

I agree with you 100 % about modern technology and the return of my energy level. I had a PM inserted on May 28 and after about 3 days my energy was back ! I knew I had LBBB since 2013. But no other problems until last September, when I fainted ( nearly)...Fell out of my chair onto my knees. Scared the living daylights out of me ! Only sensation was lightheaded ness and I was never completely out. Later I just kind of dismissed it. Then in late April this year, it happened again. Luckily I already had an appointment set with my internist. I told him about what happened. He ordered an EKG, took my pulse himself and sent my cardiologist a “ 911” text. Saw my cardio the next day, went for Heart Cath, the same day and a pacemaker that same night ! I was totally caught off guard. I only know of one person who has one. I was diagnosed with 3rd degree AV heart block, bradycardia and CAD, but no stent. I’m trying to adjust to the new normal and I’m very grateful to be among the living !

Best of luck to you !

Just got mine yesterday 7-2-2020

by TinMan - 2020-07-03 23:12:51

I love this forum and thank you all for the great sharing of experiences. I've been suffering for the past month with shortness of breath and lightheadedness. I went to ER twice and had full work up - everything was normal. I was sent home. After my second ER visit the doctor told me to follow up with my primary care doctor and get a referral to a cardiologist. That appointment was on June 30. My primary asked the nurse to do an EKG and when she came back to do it a second time I knew something was wrong. My EKG was abnormal with 2nd degree AV block. I immediately went to ER and tested and monitored. I was at 40 bpm.  They said the glaucoma eye drops which is a beta blocker may be the culprit. After 24 hours and without the eyedrops, I was still at 40 beats with no change. 

Next day, July 2, I was prepped and had a PM put in. Today July 3, I'm home and joined this forum. I am still a bit sore but I'm grateful I'm fixed. They don't know why my heatbeat was so low. They said my heart is strong like a runners heart and after the implant, my heart actually beat on it own the entire night. 
 

if you are hard of breathing and lightheaded please get tested and please consider getting the PM. Even if it's forever, is better than suffering and lessening the years you have. 
 

Good luck. Thank you all for sharing your stories.