Non-Ischemic Cardiomyopathy: Need a direction ->

Posted by swenglert @swenglert, Aug 14, 2017

Hi... Everyone.. I'm new to mayo clinic's discussion. From Pittsburgh. Not sure where to start.....
My heart issues started in 2011 when I was diagnosed with a LBBB, everything was going good. My cardiologist was even going to take me off the BP medicine in 2015. Late 2015, I started having the same symptoms after doing stuff around the house. Dizziness, lightheaded, pressure up left side of neck which lead to nausea and dry heaves. My cardiologist decides to do a stress test..... result an EF rate below 34%. After 4 days in the hospital in Jan. 2016 and a new cardiologist, I felt great with the new medicine. Even though my EF rate increase to 40%, I could not shake the old symptoms. In the fall of 2016, I got to the point that I couldn't carry my granddaughter at the pumpkin patch without shortness of breathe. Went back to my new cardiologist, he told me you have cardiomyopathy, but there's no blockages. It could be small vessel disease but not sure. Go back to your PCP. The PCP told me it was my heart....and I needed to get a 2nd opinion. At that point, besides the all the above symptoms, the pressure in the neck was getting it my left temple and jaw causing pain and a extreme headache. My wife and I decided to go to CC for the 2nd opinion. After 3 trips, I got no direction from the cardiologists but that I have cardiomyopathy with hypertension due to exertion and a heart that has 3 valves slightly leaking. All they did at CC was raise my BP and Coreg medicine. Back to Pittsburgh. Now 8 months later still have no answers, just found out that the headaches are cardiac headaches [I think the term the neurologist said was "cardiac cephalgia"] had to suspend my cardiac rehab due to the pressure and headache pain in the left side. So there is my point, not sure what's causing the issues or why? with 2 possible issues that are vary rare????/

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carnes | @carnes | Aug 14, 2017

I have 50% blockage beside the a fib and regurgitation left ventricle. Enlarged heart I can't seem to find a good cardiologist.

Kanaaz Pereira, Connect Moderator | @kanaazpereira | Aug 16, 2017

Hello @swenglert,

Welcome to Connect. we're so glad you've joined us, and thank you for sharing your history.

Here's what I found: "Cardiac cephalgia is a type of secondary headache disorder, usually initiated by exertion that is related to myocardial ischemia."
https://www.ncbi.nlm.nih.gov/pubmed/25819974

I'm tagging @bibi12 @amynewheart @fr0ggie @murryone @jms7 @cynaburst, who have experience with cardiomyopathy, and you may also be interested in these discussions on cardiomyopathy:
– https://connect.mayoclinic.org/discussion/what-is-cardiomyopathy-can-you-explain-systolic-cardiomyopathy-how-about-diastolic-cardiomyopathy/
– https://connect.mayoclinic.org/discussion/dilated-cardiomyuopathy-meds/
– https://connect.mayoclinic.org/discussion/cardiomyopathy/

While we wait for members to join in, I'd also encourage you to read this information from Mayo Clinic about myocardial ischemia:
http://www.mayoclinic.org/diseases-conditions/myocardial-ischemia/basics/definition/con-20035096

@swenglert, have the doctors explained what type of cardiomyopathy you might have?

oldkarl | @oldkarl | Aug 16, 2017

In reply to @carnes "I have 50% blockage beside the a fib and regurgitation left ventricle. Enlarged heart I can't..." + (show)

Hi, Carnes. You have enough issues, symptoms and signs to raise a high suspicion of primary systemic cardiac amyloidosis, along with the blockage. Even the blockage could be secondary to an Amy.... The A-Fib can be non-valve related, but come from Amy in the sensori-motor nerves between sections of the heart, or between the heart and brain, or in the brain. The enlarged heart is typical (75%) Cardiac AL Amy, especially if the QRS tracing on a 12-lead of either ventricle or atrial wall(s) show low voltage, under .5mv, or <about half what a typical enlarged heart cardiomyopathy will show. If you can, start with a good hematologist. Ask them to run a FreeLiteChain@ and a 12-lead ecg on you, for starters. If you are not sure of the hematologist' expertise, demand that they send the results to a skilled and experienced center such as Mayo-Rochester, Memorial Sloan-Kettering, City of Hope, Brigham & Women's, Etc. Some doctors won't do this, so head out the door and take a vacation in Rochester, Philly, Boston or LA, and check with the experienced center directly. It might be the best vacation you have ever had. Save your life, or at least make it longer.

swenglert | @swenglert | Aug 16, 2017

In reply to @kanaazpereira "Hello @swenglert, Welcome to Connect. we're so glad you've joined us, and thank you for sharing..." + (show)

Hi @kanaazpereire
According to CC, I have non-ischemic cardiomyopathy. That's my confusion with the cardiac headaches. i really don't have blockages for the rare symptom. The small vessel disease could be causing it which is also rare.

Kanaaz Pereira, Connect Moderator | @kanaazpereira | Aug 16, 2017

In reply to @kanaazpereira "Hello @swenglert, Welcome to Connect. we're so glad you've joined us, and thank you for sharing..." + (show)

Hi @swenglert,

Thank you for the update. Here's a more recent article on Non-Ischemic Cardiomyopathy that you may wish to view: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5089491/

I'm also tagging Mentor @predictable, as he may have some more insight for you.

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