I don’t get it!

Hi everyone! 
 

I'm back again with some updates. I'm 2.5 months post surgery and still struggling. I don't know if it's mental or if it's an actual problem with my heart. Overall I feel myself getting stronger when it comes to exercise but most days I'm still exhausted. I feel so tired I can't stand it! It's like an overwhelming feeling of fatigue. My body feels like it's ran an entire marathon and I've barely done anything. The strange part is that it comes in waves. One minute I feel so tired and the next I'm totally fine. I'm still short of breath as well. It's more like a hunger for air and discomfort rather than a gasping as if you held your breath too long under water. It sucks! I ask myself daily is this ever going to get better? Lately in the mornings when I first wake up and I take a deep breath through my mouth, I feel this odd sensation in my chest. Not sure if it's fluid but once I stand up and inhale again its gone away. The doctors say I'm fine but I still worry. I've seen expert EP's at the VA and an outside EP who graduated from Columbia & Harvard. He was the EP director at Mount Sinai in New York. So I'm not seeing people who don't know what they are doing. To me the symptoms I experience are of classic heart failure w preserved ejection fraction but they don't agree. What else could it be? I did a Pulmonary Function Test and it was boring. There was NOTHING wrong w my lungs. I'm just at a loss here. Everyone here says sometimes it's tweaking the PM settings but what does that even mean? I barely use the PM as it is so is it only for those who are 100% paced? My last report said I was using the PM only 9% of the time. I have Sick Sinus Syndrome. It was intermittent sinus bradycardia during sleep along with pausing (sinus arrest) while sleeping. It never happened during the day, only when I slept. I have sleep apnea but I use my CPAP nightly. 
 

Has anyone else struggled like this? Does it get better? I just want to be back to my old self already. I'm only 39, recently engaged and just want to focus on life, not my health! It's so frustrating. Anyhow that's my rant. I welcome any comments or PM's. Hope everyone is well!

 

~Alejandro 


11 Comments

I don't get it

by Dave H - 2020-03-14 15:46:02

It seems you have stumped everyone with your symptoms.  Yeah, heart failure is a possibility. Months ago I was on the treadmill during a pulmonary stress test and it was a breeze to perform. Since then my pacemakers third lead (used to synchronize my ventricles moment of contraction) has failed. Recent attempt by EP to replace this lead failed. One thing that was noted by an x-ray is this: "Left basilar atelectasis/airspace disease without evidence of pneumothorax" in other words, a partial lung collapse - something you might look into for yourself. All Docs are not experts at reading an X-ray.

ROBO Pop & Dave H

by arentas80 - 2020-03-14 18:19:43

Thanks for your responses! Appreciate them. 
 

ROBO Pop- I have a Biotronik PM and it has a setting called Closed Loop Stimulation (CLS). They turned it on and it was a NIGHTMARE! 9 or 10 times a day my heart rate would spike to 140+ for no real reason. I was brushing my teeth and gagged and it shot up. I walked to the toilet to use the bathroom and it shot up. I hated it! Not sure if there are any more settings but I'll ask the EP next time. The other crazy part is this all started in October. Ever since I've felt like crap! It's like the patient who's been fine for years then find out they have stage 4 cancer and die in a month. I swear my life has become almost terrible since this all started. I sure hope it's #2 as we'll because I know for sure it's not #3. I recently had a Zio Patch which is a 2 week EKG and it was completely normal. SIGH.....

Hello Alejandro

by Gemita - 2020-03-14 18:29:41

I have briefly looked up your history. It seems that you were feeling a lot better prior to pacemaker implant so obviously something has made you go down hill since then.

I see you had a few complications following implant and that has no doubt made recovery longer and more difficult.  After any trauma either physical, emotional or psychological we may experience a worsening of our symptoms even over a prolonged period before they get better. You say one moment you can feel almost okay, then your health can suddenly take a turn for the worse.  There are many conditions that can cause these sort of symptoms from Chronic Fatigue Syndrome to an autoimmune condition.  The possibilities are endless so I do not believe you should rule anything out at this time but you do need to find a general doctor who will consider all aspects of your health not just your heart health.  

Perhaps it might be time for another sleep study  to assess how well you are sleeping with your CPAP/pacemaker.  They can tell you so much during the study about the quality and depth of your sleep, heart rate, whether you have restless leg syndrome and so on. I would say that is the way to go if it hasn't already been done?  You may have a virus like Epstein-Barr present or chronic Lyme disease so a good general doctor should be consulted.  Your medication could be reviewed at the same time as a full medical assessment is made.  

I think we may have exhausted the pacemaker and/or settings route as the primary cause for your symptoms and I would be inclined to go down a different path for answers.  Although having said this 2.5 months is really not that long!!  It took me 3-4 months to recover from implant/get used to pacing and for my tachycardia and other arrhythmias to settle down.  My EP and I chose not to change any of my settings and I am very glad we didn't since it was easier to stop my anti arrhythmic meds to get better control and relief from my symptoms.  In the meantime Alejandro I would try to visualise a long and happy life ahead with your partner.  Congratulations on your engagement.  

Gemita- THANK YOU!

by arentas80 - 2020-03-14 19:34:19

Gemita,

Thank you very much for your articulate and well written response. I truly appreciate the time you took to respond to me. I will take your advice and seek results from my primary care doctor. I've heard this before from other members as well. The problem is he seems to think it's heart related and I have a great team working to find a solution. I feel like I have no where to turn. He even gave me an albuterol inhaler which has done nothing for me. Anyhow I won't stop until I get the answers needed and the good health I deserve. Again thank you for your words. I truly appreciate it. All the best!

Alejandro

PM settings

by ar_vin - 2020-03-14 20:21:56

You need to have rate response turned on and maybe need more aggressive RR settings.

I can tell you that for the first few months after my implant I didn't feel like I was being paced adequately. I read everything I could on my PM vendor's website (Medtronic) (all the PDF manuals with all the settings info), I consulted a few very helpful people here and went back to my EPs office with specific suggestions for what I needed done. Since the tweaks were made, I'm like a new (actually my pre-PM) man. 

Now you'll need to be very persistent and not accept anything the EP or the PM tech tells you but request specific settings changes.

My experience, as has been alluded to by others above in this thread, is that the EPs and PM techs are not interested in messing with the settings. You'll have to do it on your own.

Fortunately for me there are a number of Medtronic PM recipients on this forum who helped me greatly. Find other Biotronik PM recipients and seek suggestions from them.

I'll say this: at this point my rate response is set pretty aggressively to enable me to hike and run up hills. A side effect of this is that as soon as I take 10 steps my heart rate shoots up to 115. It was uncomfortable at first but I got used to it and I don't worry about it much anymore. Life is full of trade offs!

Please do report back what you find out and how things go.

 

Hey Alejandro:

by Dave H - 2020-03-14 20:37:37

ROBO hit the nail on the head with the EP's don't know jack about PM settings.  They also don't know jack about how to read an echo.  What is needed is a Doc. with the credential, Fellow of American Society of Echocardiography.  No one around here in central Texas has that credential. However, just for your information, the Mayo Clinic in Rochestor, MN has a slew of cardiologists with that credential. I'm thinking of a visit up there in the future. Maybe you should also. Mayo's operation is totally different than any other place I've been to.  I was there a few years ago for hematology issues and the Docs. wanted their cardio Docs to become involved. Involved, they did! I was seen by five different cardiologists who afterward had a conference and came up with a "group" assessment of my issue(s). I followed their instructions and did quite well.

Fatigue has many causes but one is bradycardia

by Gotrhythm - 2020-03-15 15:22:58

You are getting better/stronger but still feel exhausted.Since the percentage you are using the PM is extremely small, that makes me wonder if your base heart rate is too low. The first symptom of bradycardia is tiredness.

There is no "correct" base rate. Pacemaker pros have a bias toward using the lowest base rate tolerable in the name of preserving battery life. But a heart rate that will keep you alive is not at all the same as one that will make you feel good.

I found that I had to ask to have my base rate raised. Even though the settings had been tinkered with several time, nobody suggested a higher rate, or offered giving it a try. Raising the base rate to 70 made a huge difference in my overall quality of life, including allowing me to finally feel energetic.

Just a thought.

Hello Gotrhythm!

by arentas80 - 2020-03-15 15:31:06

Thank you for your reply! I wonder what HR is truly considered to be Bradycardia. My day to day HR at rest now is anywhere from 60-75. I sometimes go below 60 sitting around watching TV but even before the PM the lowest at rest while awake that I ever saw was 48BPM. At first I was set to 50 on the low end. I had them raise it to 60 without much difference. I did study my Apple Watch AVERAGE HR from 2018 and my resting HR was MUCH higher than it was in 2019 to today. It was always in the mid to high 70's and even low to mid 80's. Maybe I need them to set me at like 70-75. I just want this over with already. I want to be back to my old self :-)

God bless you ALL! 

Definition of "Bradycardia"

by AgentX86 - 2020-03-16 00:34:12

There isn't much of a consenus on what heart rate is considered "Bradycardia".  Most define it as a HR < 60bpm but some define it as <50bpm.  I think a more proper definition would be "too slow".  Most have a resting heart rate above 70bpm (most aren't very fit), so a PM would have to be set that high to make them feel normal.  As fitness increases, the resting heart rate decreases (heart pumps more blood with each beat).  Endurance athletes can have "normal" resting heart rates below 50bpm.  That doesn't mean that everyone should (endurance athletes have a high incidence of other problems).  60bpm is considered "normal" - less than that is considered "Bradycardia".

Pacemakers are set for a low resting heart rate to try to encourage the heart to beat on its own.  The pacemaker is often there just to catch the heart rate before it gets dangerous.  Having it pace 100% of the time gets to be like a crutch.  "Use it or lose it."  However, some have already "lost it".  Their pacemaker minimum is then set to where the heart rate should be (for that person to function properly).

So what rate should a pacemaker be set to?  How long should a person's legs be?

AgentX86

by arentas80 - 2020-03-16 03:06:13

Thanks for your reply. Everything you say makes total sense. I only wish the docs would explain it this way or be willing to change settings to meet the individuals needs. I feel like I have to direct them instead of them directing me. It's been frustrating to say the least. 

You own your own health and life

by ar_vin - 2020-03-16 15:08:33

Not the doctors nor the PM techs!

So you need to find a way to get what you need to regain your quality of life.

Sorry but that's just my experience.

Get informed and  ask for specific settings changes. If it doesn't work well enough, try again and again.

 

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Member Quotes

But I think it will make me feel a lot better. My stamina to walk is already better, even right after surgery. They had me walk all around the floor before they would release me. I did so without being exhausted and winded the way I had been.