Is my Cardiologist right?

Hi Guys,

I'm 34 and have a pacemaker for Sinus Node Disease (implanted at age 27). I saw my Cardiologist for a PM check up in Feb and explained that I get the occasional faint feeling and like my breath gets taken away from me really quickly. It only lasts a few seconds and doesn't really happen when I'm active, just in everyday life and may happen 2 or 3 times over the course of a couple days and then won't happen again for months. He decided to do a 24hr holter monitor, an echo, ECG and a 24hr urine study saying that he thinks I'm may be part of the POTS spectrum. I've had a tilt table test in the past that showed 'mild orthostatic intolernace.' 

Fast forward to last week when I see him for my reults and all have come back fine except he noted that on my last pacemaker download from home it appeared on the graph that my heart rate wasn't really getting up over 100 and didn't go up over 110 with the 24hr holter monitor. He decided to call in a technician to turn on rate response which I had turned on some 5 years ago and then turned off 6 months later as I didn't like it. Once the technician arrived and did a proper download on her machine (not the remote monitor) she showed my Cardiologist that the graph on the remote results is hard to read and that my heart is actually getting up around 150, 170, 180 etc when I'm training which is what I told him as I monitor it with my Apple watch. They then made me run up four flights of stairs and measured me straight after...my HR sat at 155. He still insisted in turning on rate response, stating that it may help me in my training.

Today I received a copy of the letter that he sent to my GP (he likes me to have them too) and he has stated that I have an element of 'chronotropic insufficiency'. So of course I Googled it and discovered that its when your HR doesn't go up with exercise. He is using the poor print out from the remote monitor and the 24hr holter results as evidence and I just wonder if this would really be true? When I did the holter monitor, I drove home, took the day off work and literally stayed on my lounge all day and then went to bed...so I wouldn't expect that my HR would go over 110 when at rest would it? I had gone up very slighly in my pacing from 1.1% to (AP-VS) to 2.2% (AP-VS) but that's about all. 

I have yearly check ups and get really quite anxious about them and so the fact that he did all these tests and is saying things like POTS and Chronotropic Insufficiency doesn't help me to relax. I've also been feeling out of breath lately, but it's happened at the exact same time as he ordered these tests along with some other stressful events going on in my life. I saw my GP and mentioned the breathlessness and he measured the oxygen in my blood and said it was excellent at 99% and said that it's my anxiety which I would agree with him on. I also saw a physiotherapist today who said my back, chest and rib muscles are super tight and would contribute to me feeling like I can't breathe properly.

Sorry for the long post, but I guess I'm just after your opinions on the above. I normally don't get anxious over my condition but this has thrown me. I also thought that I had made my peace with the fact that we don't know what caused my Sinus Node Disease (I had been getting symptoms since the age of 14) but now I can't help but wonder if there is an underlying condition and should more be done to find out what it is?

Any feedback is appreciated...feeling pretty low. :(

5 Comments

Opinions are like noses...

by donr - 2017-04-03 09:44:42


...Everyone has one - some are just uglier than others!

Here's mine. Judge it for yourself!

1)  BTDT w/ the stress thing.  Yep, it can stop your breathing or make you feel like you can'tr breathe very easily.

2)  The back muscles, etc:  I have a very bad lower back - lumbar 4,5,6.  Makes me walk bent over.  Stress on back & rib muscles is fierce, holdinng me from pitching over & doing a faceplant on the ground.  Also limits my ability to breathe adequtely.  I can feel it, myself.  Confirmed by my Chiropracter who keeps my lower back reasonably functyional.  I have problems w/ al the muscles down there, in addition to problems w/ one (Left) Sacro-Iliac joint not functioning very well.  His masssage work can give me hours/days of relief.

3)  I've grabbed my SPO2 thingy & stuck ity on my finger while being VERY short of breath - 97-98% - normal for me.  I also use an asthma inhaler.  Requires trhat I hold my breath for 10 seconds.  I hang on very comfortably for 30-35 sec.  Doesn't soumd like I'm hurting for O2 saturation. 

4)  My asthma has become symptomatic lately - that doesn't help my breathing one bit.  Especially under stress - physical or mental.

5)  I'm a heretic/luddite.  My PM clinic at Emory Univ in Atlanta centralized all download activities.  My Cardio may not see them for months after the event, whereas he saw them immediately after taken under the old system.  The linic has been badgering me to take a remote monitoring thingy for months.  I m dead set against it.  Last Sept I told them that if tr5hey sent it to me I would smash it w/ a sledge hammer & return it to them.  The nurse was horrified at my violent nature & asked me "Why?".  My response was simple - I have less than zero confidence in the organizational efficiency in getting results back to me.  I have enogh stress in my life w/o having the thought that I am being constantly monitored & may get a call at any time telling me that "We've got problems, Houston!"  I live w/ that being on the receiving end of the 24 hr monitoring system for the security system in our house back in GA ( we are in MS for a significant amount of time) & our daughter's medical clinic here in MS.  The thoughts of some faceless myrmidon buried in the bowels of a concrete & steel bldg in a state several borders away being attentative enough to get the results to me in a timely fashion do not excite me.  I go through that w/ self testing for INR (I take warfarin) & do not get truly timely responses to the results I phone in to CA  when my clinic is in GA.  I wind up making all the decisions about high or low readings myself for lack of response timeliness by the system.

This March I had a download clinic session (We go back to GA about every three months) & the nurse told me they were going to send me a medtronic remote station.  I she asked me to reconsider the hammer act.  I told her "OK, send it.  I'll put it under my bed."  She said "Great, thank you."  I then told her that she should not get excited about it - I never said I'd assemble it or turn it on, just put it under my bed.  She was devastated!  I was let down once by remote monitoring & I have no desire to be let down again.

Donr

 

not sure if this helps

by BOBJ - 2017-04-03 13:09:52

I often feel what you describe, but it is getting better since my crt-d. In my case my heart failure causes my body to demand o2 even though my saturation is over 98%.

So I often have that coming up from the bottom of the pool feeling.

One of the things that I would ask is for a co2 check on your blood.

If your o2 is good then this is being caused by something and it does not sound like your doctor is on the right track.

 

For what it's worth

by Gotrhythm - 2017-04-03 14:04:44

It sounds to me like you have recorded your heart rate under different conditions, and you know how it is responding to exercise. (wish mine did as Well.) It's important to realize that doctors can only treat what they can see. What the doctor is looking at looks like chronotropic incompetence. Becuase he's not seeing what you are seeing.

What to do? Here's the way I look at it. I have a much larger stake in a successful outcome than the doctor does. If the doctor is wrong, the person who will suffer is me. The doctor knows medicine, but I know how my body behaves. If I don't think the doctor is looking at the whole picture, I go with my opinion.

Understanding that doctors can only treat what they can see, it might have been a mistake not to go to the gym when your holter monitor was done. When I have monitoring, I do absolutely everything that could possibly bring on my symtoms, including risking passing out.

NOTE TO DONR

You are a "bad" patient after my own heart!

 

Cheers!

by pmgirl - 2017-04-03 20:00:42

Thanks for taking the time to respond guys, you've made me feel better about it. I do really like my Cardiologist, he's a bit eccentric and can sometimes be hard to get a word in with. He'll very quickly move on from the business of my heart to shoot the breeze about other topics...I'm certain he does this as he knows by now how anxious I get during our appointments. He doesn't want to see me for another year and so I guess he can't be too worried about anything but sometimes you go to the almighty Google and research a term that freaks you out!!!

Gotrhythm I agree, it probably was a mistake not to go to the gym and explain myself further.

donr, thanks for sharing...hope the asthma settles down soon and you make your peace (one way or the other) with the monitor! :)

 

Remember my comment about my...

by donr - 2017-04-04 01:35:06


...cell phone? well, I was in the process of ladeling some chicken soup into a bowl at lunchtime today when it rang - answered & it was Simpli Safe, my monioring company.  Had a burglary alert from our system at 2:48 CDT.  So here I am in MS & the alarm is in GA. 500 miles away.They caqlled the county Sherrif, who dispatched a deputy to check the house.  Pretty unlikely that they would find anything wrong at that time of day - & especially since there was no door alarm or broken glass alarm, signifying that the perimeter of the house had been breeched.

Indeed it was a false alarm.

PMGIRL:  your caqrdio is my kind of guy.  Before mine sold his soul (& his practicxe) to Emory, we'd talk about all sorts of wierd things.  He & DW went on a safari to South Africa a few yrs ago.  before he left, I warned him to keep his glasses on at all times.  he asked why & I told hgim that it was to protect his eyes against the "Spitting Cobra"  Aka the Ringhals.  They have uncanny accuracy when it comes to hitting enemy/prey in the eyes from significant distances.  There ensued an interesting discussion about whether or not the Ringhals lived where they were going.  All witnessed by 8 people shoehorned into the ex mop closet he called an exam room.  I won the discussion, BTW.  But that was par for the course w/him.  he didn't run into any, after all.

Donr

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