PM for Bradycardia, exhaustion, mental fog

Hello all,

I'm hoping to get some advice regarding my bradycardia. A little background...

I'm 50-yrs old, 5'6", about 135 lbs. All my life, my HR has been a bit on the low side, but was chalked up to me being a competitive swimmer. I'm no longer what you would call an "elite" athlete by any means. I did swim in the summer, and would swim about 3x/week (about 2 miles per swim). However, I don't swim any other time of year. I try to go for walks when I can, but being a busy mom and working F/T, that's all I have time for.

The past few years, I've had extreme fatigue, mental fog, and have even slurred. After a host of tests (including thyroid, which was normal), I had a brain MRI. It showed mild ischemia, but that was all. I also had a stress test (I failed), but I passed the nuclear stress test. I had a sleep study last month, too. No sleep apena, so the neurologist thinks it's due to my low HR. The only thing that has been consistent has been a low HR and BP. A 24-hr holter monitor showed my HR in the low 30's at night (even as low as 28 for 1/2 hr), with an average HR around 50. The only time it gets up in the 60's or higher is if I have caffeine. The echo just showed mild regurgitation for mitral valve and tricuspid valve, which the cardiologist said is nothing to worry about.

In wearing my iwatch, I started keeping track of when I feel better vs when I'm in bad shape. When my HR hits the 60's, I feel much better. But sitting at my desk, or watching tv at night, I tend to hover around 42-44. I notice I have a very hard time thinking clearly, speaking, and just functioning normally. I'm exhausted and finding it hard to follow converations, do simple things like type an email, and not feel completely spaced-out. I experience fluttering/skipping frequently, despite me being relaxed or even sleeping. My hands also are often blue-ish purple (NOT Reynaud's Syndrome as they never get white... just very blue, and sometimes it's during or immediately after excercising).

The first cardiologist I saw told me to just increase my salt intake for hypotension, and that was it. The second cardiologist said, "If you were 70, I'd give you a pacemaker tomorrow, but since you're only 50, I'm hesistant." I had a tilt table test when I was 30 (so almost 20 yrs ago), which I failed so badly they had to give me atropine to get my heart rate back up. I was diagnosed with vaso-vagal caridac syncope, but the only thing I was advised to do was to stay hydrated and again, increase my salt intake. No fainting spells, though I've come close many times.

I started to just give up, feeling like I sound like a hypochrondriac. But the neurologist who did the sleep study thinks I'm not getting enough blood flow, especially at night, which in his opinion is contributing to the extreme fatigue. He thinks I need a PM, but he's not a cardiologist and admitted it's not his area of expertise.

I'm feeling hopeless. I feel like I've been sleeping my life away and no one wants to do anything, writing me up as being "in good shape, so I shouldn't worry." I can't imagine living like this for the next 20 years! I don't know if this makes sense, but have you ever been so tired, it's almost painful? That's where I'm at right now. I have to resort to taking 100mg of caffiene just to get my HR up and so I can function!

I'd greatly value any feedback as I'm just feeling discouraged and lost about what to do, if anything at all, at this point. Should I seek a third opinion?

Thanks in advance - I'm eagerly awaiting this wonderful group's replies and advice.

 

 


13 Comments

It sounds as though you need a pacemaker !

by Gemita - 2020-09-28 14:28:19

Dear Rachel,

I went through a similar experience before my pacemaker and I knew that if I could only keep my heart rate up I would be almost 100% cured of many of my symptoms and this has been my experience with my dual chamber pacemaker since May 2018 and I am so grateful to my EP/Cardiologist for recommending I go down this path.  I am though older 72 yrs but why wait to start to feel better Rachel.  The quality of your life sounds miserable and I would push for help.

I was always cold having to wear layers even in summer.  I was so sluggish, so tired, it was painful.  I too felt better when my heart rate rose to above 60 bpm but it rarely did and was falling at rest to well below 30 bpm too and I was continuously waking fighting for breath which only added to my fatigue during the day.  I had brain fog too so bad that I couldn't function, focus on my activities.  I had accidents in the kitchen, leaving pots and pans unattended and causing a fire on one occasion.  Please do not reach that stage.  It might be too late.

I suffer from syncope and yes fluids are very important and I have to increase salt levels also since my blood pressure is always low.  Regarding the fluttering/skipping, this sounds like bradycardia induced ectopic beats and my pacemaker has definitely helped or more specifically corrected this problem for me!  It is known that a higher heart rate can often outpace these ectopic beats and help to control them.

Rachel what are you waiting for.  Please consider asking for a pacemaker.  I send my best wishes for a good outcome.  Please let me know if I can help in any way

find another doctor

by Tracey_E - 2020-09-28 16:10:10

Rant alert!!!! If they would give a pacer to someone 70, WHY on earth would they not give one to you???? The attitude that pacers are only for the elderly is antiquated at best, deadly at worst. I had the same problem, I was in my early 20's and they wanted to wait because I was young. My rate tanked one day and I almost died, after I was paced I felt a million times better and more than a little resentful that my age was the primary reason they made me wait. I'm 54 now, healthy and active, and grateful to have this little chunk of technology that keeps me going. 

A normal resting heart rate is 60. Some people get by with a heart rate in the 50's but many like you do not and are symptomatic. It's possible something else is going on, but you know your rate is low and you know your symptoms correlate with the low rate. Seems like a no brainer to me.

 

Good Grief!

by AgentX86 - 2020-09-28 16:30:24

What Tracy said.  If your heart rate was in the low 30s with just a 24hr monitor (what was it doing the rest of the month)?  Blue hands? Mine was usually in the 30s too.  With a 72hr Holter my cardiologist found 3-second pauses but wasn't too concerned about them.  Later, a longer (1-month but found it in five days) event monitor found an 8-second pause.  I had a pacemaker the next Monday morning (Friday to Monday).  With only a 24hr Holter you really don't know what's going on.  It's got to be longer than that and with your symptoms, yesterday would be a good time to do it.

You really need to pin your cariologist to the wall and ask why only old people need pacemakers.  That's absurd.  Children get them.

Also, I'd get an EP involved here, unless it takes too long to see one. 

You need an electrophysiologist

by Gotrhythm - 2020-09-28 17:12:33

What Tracey and Gemetra said.

Like you I had symptoms that would come and go for about ten years. The bradycardia was never caught until I had a holter monitor test. Well do I remember the exhaustion and the brain fog--and the difficulty getting anyone to listen because I was so "young" (in my 5's) obviously healthy and in good shape. I also remember wondering if I was a hypochrondriac. 

The neurologist said you're not getting enough blood flow through your brain when you sleep. A heartrate of 28 will do that. The solution is a pacemaker. And there is no reason to wait until you're 70. I was under 70 as were many of us here.

Don't give up. Instead, find another cardiologist--idealiy an electrophysiologist, a cariologist who specializes in electrical problems with the heart, and who could implant the pacemaker. Travel if you have to.

You are not crazy or a hypochondriac. A heartrate that is too slow can cause all your symptoms, including the low bp. And the problem will not get better on it's on. Get some help. Your life could depend on it.

 

Thank you!

by Rachel23 - 2020-09-28 17:48:28

This has been so incredibly helpful! I called the doctor and asked for a 7-day monitor, which she'll do. I feel like when I showed a photo of my blue hands, all I get is, "Yes, that's Reynaud's..." but it isn't! I had a rheumatologist rule it out, so I wish they'd stop saying it.

Gemita, I'm cold ALL the time, too. I have a space heater by my desk because I'm so cold. I don't want to have this constant brain fog all the time, either. I remember sitting in my car in the driveway, too exhausted to get out, and surprised that I remembered how to get home, even though I was only at a store up the street. That's how hard it becomes to "think." I constantly forget conversations and feel so weak, especially at night when my HR sitting with kids hovers at 40. They need their mommy (they're young) and I can't always push through the tiredness, or have the energy to run around and play. The only good days are when I have caffeine, but it's wreaking havoc on my stomach, unfortunately.

And Tracy, thanks for your rant! It made me feel like I'm not alone and need to be a better advocate for myself. I'm so tired of being tired... heavy sigh.

And AgentX83, I'm so glad you're alright - that must've been so scary!! I did ask the cardiologist why she's hesitating and she said, "Because there's a high risk of infection." Umm, ok, but me coming close to fainting is ok? Or, walking around with blue hands (I look "dead" they're so blue), or slurring my speech, having palpitations, all of that is better than an operation that could leave me having a much better quality of life? I see her on Wed. and I'm not backing, or it's time for me to find a new doctor ASAP.

Thank you all SOOOO very much! I'm truly grateful. It's been a hard and long journey just to get this far. These docs have gotten in my head and made me doubt myself. But as my hubby says, "You can't fake a low HR! It's NOT normal, I don't care what they say."

 

Thank you, part 2

by Rachel23 - 2020-09-28 18:10:27


Again, my sincere thanks for all of you! I really appreciate this more than you know. I'm a positive person who likes to "tough things out" and not complain, but it hasn't served me well in this instance because I've been too complacent, despite feeling so lousy.

As a mom of two kids under 11, it's always family first, so like many other moms out there, we tend to put our health last. It wasn't until my youngest said, "Mommy, I wish you weren't so tired all the time." That hurt. It made me realize how it's effecting them, too. I thought I was managing it, but I'm not. I need to fix this and find a doctor who listens. One who doesn't judge me, but who just wants to help me feel better.

I'm not giving up and will keep at it. Thanks again to all! (((virtual hug)))

You definitely need better doctors....

by crustyg - 2020-09-28 19:29:21

Reynaud's produces *white* hands, not blue.  Peripheral cyanosis due to lack of supply of oxygenated blood produces blue hands (by definition - that's what printers call their blue dye - cyan...). Reynaud's is a total lack of blood supply which is why it hurts so much on rewarming.

Still, blue hands are a *lot* better than blue lips... Central cyanosis is real tiger country.

Best wishes.

on being a mom

by Tracey_E - 2020-09-28 20:59:08

The best thing we can do for ourselves is have a normal heart rate so we can keep up with our kids!  

The final thing that landed me in the hospital for emergency surgery? Blue fingernails. My hr was 22 when I was admitted. Like Persephone, I can vouch for the ER not being the easy way to do it. 

Ditto the other advice about seeing an electrophysiologist rather than a cardiologist. Even if you're seeing a cardiologist for your care, they'll send you to an ep to do the surgery anyway so better to meet them now. EP's are the electricions of the cardiac field, they do ablations and pacers all day long. They're more likely to have other younger patients, less likely to be distracted by your age. 

You can't tough out a low heart rate! The body needs oxygen to thrive. 

Last random thought, something I've learned the hard way. I also don't like to complain and will tough it out. I try to always greet everyone with a smile and stay upbeat. Sometimes this means doctors downplay what we tell them. They hear "I am suffering" but they see happy, cheerful and assume doing just fine. And they blow us off. 

High risk of infection

by AgentX86 - 2020-09-28 22:30:18

Nonsense.  Of course there is a risk but it's not that great.  Does he really  think a 70yo is at less risk of infection than someone in the 50s.  Really?

My 8-second asystole is nothing compared to some here.  We've had people with 30-second pauses.  Scary indeed.

Syncope can be deadly and it sounds like you're on the edge.  You really shouldn't be driving until you get this straightened out.  Even stairs are a real risk, but only to you.

Bradycardia and pacing

by Selwyn - 2020-09-29 09:21:24

What you need is a period of monitoring and recording as others have suggested and correlating this with your well being or symptoms  This is especially important given your irregularity of heart beat. 

American Heart Association Guideliens suggest: there is no established minimum heart rate or pause duration where permanent pacing is recommended; therefore, establishing temporal correlation between symptoms and bradycardia is important when deciding on the necessity of permanent pacing. 

There is no age limits ( upper or lower) to having a pacemaker, from babies to those in their 90s. My Mother-in-law had one at 80 yrs old to offset the side-effect of her demetia drug treatment. 

 

 

what is going on

by new to pace.... - 2020-09-29 09:33:09

You might see a Gastro Dr. and get checked out to make sure you do not also have a problem with Gluten .

new to pace

Major hospital center

by marylandpm - 2020-09-30 13:52:39

  You don't give a location. I suspect if you are in the U.S. you don't have insurance. If you were one of my relatives I would take you to a major hospital center and  have you go to the ER.   They would have EPs available and I bet you would get a PM.   

Risk of infection?????

by Gotrhythm - 2020-09-30 18:08:47

Infection risk is total BS.

Every operation carries some risk, of course, and infection is nothing to mess around with if it does occur but seriously, the risk of infection is actually quite small. 

That cardiologist who said the potential risk of infection outways the benefit of a pacemaker sounds just plain incompetent to me. You really are better off without her.

Marylandpm's suggestion of going through the ER of a major hospital is a good one. Better to go now, before you wind up there anyway because you've fainted, fallen, and broken something. Or, God forbid, you are so out of it mentally while driving that you've caused an accident, injuring yourself, your chlidren, and others. 

Risk of infection? Driving in you condition is riskier.

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