Test show nothing...

I'm 52 and used to be active, until the pacemaker. I blacked out and 7 days later had the pacer implanted. It's been 5 months and I'm miserable. Almost constant chest pressure and I can't do even half of what I use to be able to do. Tired all the time, run out of breath when I talk too much or walk too much. All test come back with nothing wrong and the pacer is working perfectly. I feel like no one believes me when I say something is not right!!
Anybody else have the feeling of living with a brick on their chest or having an apple stuck in their throat?

10 Comments

Check with medical insurance

by Theknotguy - 2015-12-11 03:12:29

Must be the reaction to the magneto on the aircraft engine. Just kidding.

It's really frustrating when you take the issue to the medical staff and you get nowhere. The point you want to make is this isn't normal.

Fortunately in the US we have medical insurance. Most medical insurance companies have nursing hot lines which are free to the insured. They make a good place to start a conversation about things not being normal. Then take it from there. They may be able to suggest cardio rehab or, worst case scenario, getting another EP who will listen. If you can't get through medicare, work with your medicare supplemental insurance.

I started out feeling as bad as you did, but through having adjustments to my PM and going through cardio rehab, I'm back up to better than 100% of what I had before getting the PM. Are things different, yep, sure are, but it isn't anything I can live with. Now if I can just get the busted ribs from hurting so much...

Hope this suggestion will be a help to you.

What kind of Tests?

by BillH - 2015-12-11 04:12:09

There are many different kinds of test.

Have you done a Holter (or 30 day) test where you can note symptoms as it records your heart rate?

Have you done a treadmill test with an PM tech that can monitor and if needed adjust the PM?

What about pulmonary tests?

And echo?

Tests

by Gilbert1* - 2015-12-11 04:12:28

Tests...stress test, heart cath, breathing tests, CT scan...They've done some adjustments to pacer settings. I just feel that because I'm a woman I'm not taken seriously....it took three trips to the ER before they figured out I didn't have a tension headache; it was spinal meningitis. It's like my heart and this pacer are trying to decide who's in charge.
Maybe I should call a nurse hotline....

Same here

by Lisalac - 2015-12-11 08:12:39

I feel exactly the same as you. I have only had the PM for a couple of weeks but have been in and out of the hospital since October trying different medications, doing tests etc. I feel like no one really knows what they're doing. I'm hoping with some adjustments to the PM and medication I might get my life back.

Meds

by Gilbert1* - 2015-12-11 10:12:57

I was on Multaq and Ranaxa and quit taking both because there was no improvement. I think that most of the time they are looking for a "mechanical problem".
I don't think everything is black and white when your talking about different people and how their bodies react to things. I am just fussing, but so tired of the look that says "yeah, what ever".

Upside down

by Gilbert1* - 2015-12-12 06:12:30

One other thing, the second cardiologist I saw said the pacemaker was in upside down? Does it make a difference really?

Upside down?

by PJinSC - 2015-12-13 09:12:50

I never thought of that, but you may be onto something. My Boston Scientific Inviva CRT-P pacemaker, and I think all of them, has an accelerometer that monitors movements and activity to tell the rate adjustment when to allow increased heart rate. If the thing was upside down in your body, the accelerometer may not be sensing your movements correctly, and is unable to send the correct information. Find someone who knows what they are talking about and get it checked out.

PJ

Not good for you

by Gotrhythm - 2015-12-14 06:12:04

When they say "the PM is working perfectly" they mean it's working the way it's programmed to." But that doesn't mean the way it's programmed is working for you!

I'll give you the advice I wish someone had given me when I had had every test but still had no answers and knew something was NOT RIGHT.

If there's any way you can, go to a major teaching hospital. If your condition had an easy answer, someone would have found it, so you need to go where the hard, difficult to diagnose cases are seen.

Women's heart conditions present differently from men's but most of the tests have been created for and standardized on men. A woman can look fine according to all the tests and still have significant heart disease. If you suspect you are being marginalized because of your sex, you need to advocate for yourself, and insist that since your present doctor cannot help you, you should be seen by someone else.

Don't give up. Someone, somewhere, will listen to you and has the answers you need. Good luck.

Thank-you

by Gilbert1* - 2015-12-14 11:12:16

I will be looking into all of these suggestions!! Thank-you all and I'm not ready to give up yet!

Any Progress?

by Catherine57 - 2015-12-30 06:12:55

Hi Gilbert1-- have you made any progress? I am trying to help my mom. She could have written your original post. There are some good suggestions here and I hope you come back with a report of what worked for you.

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