Bradycardia - frustrated and so tired

Hang Tight

by NiceNiecey - 2017-07-11 02:14:27

Hi Kristie.

I'm sorry to read about your problems.  We are fearfully and wonderfully made but when something isn't right, it doesn't feel wonderful at all!

I want to encourage you to hang tight until that appointment on Wednesday.  I know it's hard when you feel awful and you want answers now but you can do it.  Try not to let your mind think the worst (even if the EP mentioned possibilities).  

I went back and looked at your previous post where you wrote:

My resting heart rate has gone down 10ish beats per minute in the past 18 or so months.  And I wonder is it because I'm more fit?  Or is something happening with my heart?  Or did menopause slow it down?

I had the same questions.  I was growing more tired all the time and the high energy person I had been in the past went out with the trash.  Yet my resting heartrate had always been around 76-80 yet it was inexplicably getting lower, into the 60s (low for me).  I, too, thought that I must be in good shape from all my walking!  Hilarous looking back.  I had a couple episodes where I woke up in the night with a crazy arrhythmia and gasping for air.  Three years later, I realize I was lucky to have woken up at all.

Even though you've always had a low resting rate, I doubt you'd consider youself an "elite athlete" at this time and dropping that low isn't anymore healthy than extremely "fit" marathon runners who are ridiculously thin and are more like functioning anorexics.  

Do give us an update after your appointment and let us know how it goes.

Niecey

Feel awful

by Loonylil - 2017-07-11 05:15:10

Dear Kristie

it's truly awful for you to be feeling so bad and not have a proper diagnosis or treatment!

if you haven't had one already, I would suggest that you ask for a thyroid function test, a low functioning thyroid will affect all parts of the body and will often mean weight gain

worth a try?

i do hope you get some answers soon, sending you my best wishes ❤️

bradycardia

by Tracey_E - 2017-07-11 10:10:57

Why would you think CI is a recipe for death?? Have you seen how many members we have here? Thousands, and there are many thousands more out there getting on with their lives with no reason to find a support place like this. Most of us get the pacer, our heart rates return to normal, and we resume healthy active lives. I got my first one in 1994 and I pace every beat. As I type this, I just got home from CF, surfing a bit while I cool down enough to shower and start my day. No one looks at me and sees a heart patient.

Beware of reading too much online. You'll see a lot of the rare complications and horror stories because those are the people looking for answers, so it makes can seem like complications happen a lot more than they do.  That's not the norm. 

It sounds like you have a diagnosis- bradycardia. That can cause every symptomyou mentioned. It's common to have electrical issues with the heart but be otherwise 100% healthy. It just happens. Nothing we did caused it, nothing we could have done differently would have prevented it and most of us never know why it happened to us. Doing more tests in a search for answers is usually an exercise in futility that doesn't yield more answers than we already have- for some reason our hearts slowed down.

If your rate is not going up when you exercise, then you should stop exercising for now. The reason the rate goes up is to increase oxygen. If that isn't happening because your rate is staying low, it is very hard on the body. When you are so tired, listen to your body.

I knew I needed one years before I made the decision to get it. My doctor didn't push me because he didn't want to do it on someone young, I was terrified of it, so I procrastinated. Over several years I lost my quality of life, then one day my rate tanked to the low 20's and I ended up in emergency surgery. The surgery was easier than I'd built it up to be in my head and I came out of it feeling better than I ever imagined. In hindsight, I resent that the doctor let me get that bad before doing anything about it. I spent two years sleeping my life away when I could have been feeling good. So my advice to you is this... if you know your rate is low, if you can't do the things you want to do, then just do it. No one wants to be paced, yes we are young, but all that really matters is there is a fix to our problems. Don't be afraid of it, try to see it as a tool to get your life back.  

Two things to discuss with your doctor before getting a pacer that can become issues later are placement and the type of rate response the device has. Make sure your surgeon knows you are active and do weights. Ideally, have a doctor who is active, they seem to get it more than doctors who are sedentary themselves.

Placement- Some of them place it just under the collarbone, just under the skin. That's the fastest and easiest but depending on our build and lifestyle, it is the least protected. They can do it a little lower and deeper, or put it under the pectoral. That's where mine is, under the pectoral. You'll want it out of the way when you clean the bar. Healing takes a little longer because it is deeper, but once it heals it's well worth it, imo. 

Rate response- This is what raises our rate for us on exertion if the heart doesn't do it on its own. There are several types out there, some work better for athletes than others.

And lastly, know that it can take a few tries to get the settings fine tuned. No two of us are alike so settings are not one size fits all.

Once you heal and get the settings adjusted for you, you should find that life goes on just like it did before, only we don't get so tired anymore. There's nothing I want to do that I cannot. It's a lot to swallow when you've always been healthy and it's going to take some time to wrap your head around it, but most of us find once we heal that it's just a little bump in the road. 

tests

by oKristie - 2017-07-11 11:30:25

Thank you so much everyone.

Regarding testing, yes I have had thyroid tested I think now at least three times.  Always normal.

In terms of my doing my own testing, I am currently occupying a commercial building we are remodeling for our non-profit dog shelter.  It was built in 1960.  It has asbestos, lead and mold.  But all remediated, managed, encapsulated, etc.  

I started living at the apartment here about 18 months ago, maybe 4-5 months before my symptoms started.  I normally keep all windows open except in extreme cold and heat, so I always have fresh air.  But it has always been a concern in the back of my head.

So I tested myself for mold and lead exposure.  Then I tested for ferritin, c reactive protein and EBV.  I couldn't remember if I had been tested for EBV and it was $49 so it was worth spending the money in terms of my just ruling things out.

I'm a pretty savvy, intelligent person (I like to think so at least!).  I'm very reasonable about my healthcare.  I don't need handholding.  I just want answers.  I'm a straightshooter and I listen to my body and rest as much as possible.  I think part of my issue right now is that my job is physically demanding as well as pretty mentally stressful running a non-profit.  Even on my "rest" days, I'm at 8000-10000 steps, over 3000 cal burned, etc. etc.  So I don't really give myself credit because that's my everyday life.  

But I do try to limit myself.  Typically if I feel half way decent, I go ahead and push myself.  So I've stopped doing that.  There has been a very long learning curve trying to figure out what works and what doesn't.  Knowing that someone out there has an answer for me is what's killing me mentally.  Someone can fix this.  And then waiting and waiting for tests and appointments is brutal, but again, I'm not dying of cancer so suck it up...

Anyway, I've wanted a pacemaker for a couple of months now.  I'm ready to go.  No hesitation, no fear.  It's just that my EP wants to rule everything out before he "puts metal in me".  I head read up (on here thankfully!) about the placement of the PM for barbell work, etc.  I had discussed that with him.

He said if he does anything, it will be a single lead PM.  And we discussed that if I have it for a year and still have symptoms, it can be lasered out fairly easily if we find that it wasn't needed.

I'm very thankful to hear from people like me.  I do read a lot on the internet, but it's simply to be an advocate for myself.  There's more to my story - early menopause, missing body parts, etc.  LOL  So I have been tracking how I feel, the wave that I ride between having some energy and having none, my stress level, activity level, etc. in an attempt to provide my docs with the info they need to help me.

Oh and regarding my comment about CI, I had read (from reliable sources - mayo, harvard, etc.) that it's an indicator I believe of future MI or some other heart failure.  I would figure the pacemaker mitigates that. 

It gets better from here

by Gotrhythm - 2017-07-11 12:16:29

I read your post twice to make sure I understood. It sounds like you are looking for some diagnosis that would explain, and hopefully offer a cure, for your bradycardia.

But Tracey is right. Bradycardia is the diagnosis. It's something that just happens, and as you have found out you can be perfectly healthy by any other measure, and yet have bradycardia--a heart that's not beating fast enough, and/or not speeding up enough, to keep your body and brain well supplied with oxygen when you are active.

I do sympathise. I went to diferent doctors for three months with no symtoms except feeling terrible, a strange feeling in my chest that would make me cough, and still being exhausted after 10 hours sleep. My HR was 60. My EKG textbook perfect. My heart was so obviously healthy, nobody even thought to order a Holter monitor until a pulmonologist just happened to be listening to my lungs (because of the cough) and heard my heart slow down suddenly, then pause for several seconds.

Even with the evidence of the Holter, it took me awhile to accept that bradycardia was not just another symptom, it was the cause of my other symptoms. And there are no vitamins, no drugs, no exercises that will cure it.

Technically what I have is Sick Sinus Syndrome. That means the part of the heart that is supposed to initiate the beats is fallling down on the job. Why? Who knows? SSS is more common in older people, but it is by no means limited to us. With hindsight, I can see that I probably had it for 10 or 15, maybe more, years. Certainly, during that time, like you, I had the problem that if I got overtired, it took several days to recover. It might be useful to ask your doctor if you have SSS.

Chronotropic incompetence goes along with SSS and is not a death sentence. Lots of us here have it, and with the help of our trusty pacemakers, we get along just fine. In fact, people with SSS who have pacemakers can expect to live just as long as people who don't have SSS. Look up keywords longevity, pacemaker.

Trust me, I do know how bad you feel, but since you are otherwise healthy, feeling better, returning to the crossfit you love, is in your future. 

no death sentence at all

by confused - 2017-07-11 13:05:35

Hi,

First off I am sorry you are going through this because I know it is scary at first.

I was 44 when I had mine put in last October and it has changed my life for the better in every way.   I was so tired all the time!  I couldn't make it thru a whole movie, couldn't ride along in the car over 15 minutes without falling asleep and felt like I was living in a bubble for years.    Shoot I even had a hard time concentrating when someone was talking to me. I had no idea what was going on.   Tests were ran on me and bloodwork always came back good.  Then playing at home with a heartrate app on my husbands phone brought to my attention my rate was in the 40's.   Told my doctor about it so he had me wear a monitor for 30 days then was sent to an EP.   After debating if I should get the pacemaker after being told I needed one I finally gave in and went for it.   Actually after coming here to this board that is what made me realize I would be ok.

Sorry this post is so long but wanted you to know that I have zero regret in getting my pacemaker and I actually love the thing!    It is so great to have my life back. I knew I felt bad and tired all the time but had no clue just how bad.   I can't imagine feeling like that again!

I recently went back to my Zumba classes and have no problems at all.   Plus I have went to a couple of bootcamp classes and was able to make it the whole class also.  

Like said before ini the above post be careful of things you read on the internet.   Hearing from people that have actually went thru it can help you more than anything.

Good luck and hope you get the true answers you need.

Tammy

Tilt table test

by zawodniak2 - 2017-07-11 13:15:09

I don't want to add any confusion to your noble pursut for a final diagnosis, but I suggest you may want to ask your EP if he can perform a simple, non-invasive "tilt table test".. I had that test and it confirmed my bradycardia and slow rate response---thus a rate response Medtronic pace maker was the solution.  It keeps my heart rate from dropping below 60 bpm and very nicely increases  my heart rate to my activity level. I can sit for awhile and watch my rate bottom out at 60 bpm with a finger monitor, get up and walk around for less than a minute and my rate goes up to 80 bpm.  Walking at a brisk rate will increase my rate to 110bpm.  I have had a pm for 10 years, now on my second pm and I have no fatigue  or dizzy episodes. With your persistence you will finally resolve your symptoms and enjoy a quality of life.  Let us know your final outcome. Good luck.

                                            Rodger 

got it together

by Tracey_E - 2017-07-11 15:52:21

It sounds like you've done your homework and are in a good place mentally, and your doctor is thorough. It may be that lead or whatever caused it, or you may never know, but the fix is the same. Unfortunately these things rarely fix themselves, they tend to stay the same or get worse. Having an active lifestyle is a good thing, let's hope you can get back to it very soon! If/when you decide to proceed, let us know if you have more questions.  

p.s. I've been a volunteer and on the board of a private dog rescue for the last 10 years. Kudos to you being on the front line

Brady

by TBrous&Chip - 2017-07-12 09:07:10

Sorry you are going through this.

It seems that you have covered all bases with testing.  I was and am active, healthy, normal weight, with a great metabolism, no medications. Then I began blacking out and went through 6 months of testing. The diagnosis was SSS/BRADY. The fix is a pacemaker. 

Much improvement since the pm but now I also have blood pressure issue after bending over and then standing too quickly. 

My point is that you may have multiple issues but keep trying until you get them resolved so you can get back to your normal life.

Boy can I relate.

by WiredandTired - 2017-07-14 13:38:31

I got nuthin', but want you to know I'm pulling for you.

thank you

by oKristie - 2017-07-31 19:28:38

Thank you everyone for encouraging me.

I completed all of my cardiac testing and my heart and lungs were excellent and above average.  My EP cannot come up with any good reason to simply put a pacemaker in me.

I continue to have awful fatigue, but I'm going back full circle to hormones since this all started when I was diagnosed with early menopause.  My primary care and regular gyn ruled it out, but I went back to the specialist I used in 2012 when I had a hysterectomy and cancer scare.  

She is fabulous and ordered a barrage of tests last week.  I feel like she is going to help me.

I just wanted to thank you all so much.  I really appreciate the time you spent to respond to me and the thoughtfulness of your posts.  I do wish you all the best!

Sincerely,
Kristie