Last year I had a heart surgery to fix 3 congenital birth defects that were miss diagnosed for 50 years. they were holes, Pulmonary Vain to right Atrial x 2, an ASD and while they were there they found a VSD/tear. I recovered better then they expected and resumed full activities including running. 4 months post surgery I start feeling a vibration in my chest randomly, and having TIA's. By January this was occurring almost daily with days of hard shaking in my chest.
For the past 12 months I have been under constant Medical care and testing from 3 major hospitals including Cleveland Clinic, and UC Cincinnati. I have no other heart or health condition. I have had every test done by Hospitals on the heart, and lungs. They all showed my heart healed up well. the heart monitors all show a steady clean rhythm with a right bundle block. My heart rate was slowly increasing month to month so doctors put me on 150 Beta blockers to slow it down and try and shrink the right side. When im sitting still, standing, or laying down and as my HR drops my O2 also drops as low as the 60s and 70s at times. When HR is up my O2 is normal. Heart Cath's show im clean with mostly normal pressure readings(nothing out of normal range).
As the shaking and other symptoms grew in frequency, I also had chest pressure, significant swelling, wheezing, shortness of breath, Pale grey to blue skin, cold hands and feet, blurred vision and total Fatigue. These symptoms would increase in severity the harder my heart was shaking. The doctors would/could not account for these symptoms.
The doctors had me going from test to test and i spent a week in ICU were they confirmed that MY O2 was dropping and I was still having strokes. However every time I told the doctors that my heart was shaking they would give me blank looks and at one point even yelled at me that it doesn't happen or it would show up on the Monitors. I tried to show them were it was showing up but they refused to consider it.
When My Heart shakes hard My Pulse-ox and my Fitbit will have a hard time tracking HR so while I was in ICU I wore both of them along with the Hospitals monitors. I found that the Hospitals finger pulse reading would become static (artifact) when my heart shook even though the chest sensors would show a nice steady pulse. When the shake would stop in my chest all three sensors go back to the same reading.
In July out of the blue my Heart shaking stopped and over the next 5 days all my symptoms started fading away. on Day 6 the heart shake came back and the other symptoms stated coming back. Since then I had one week without shakes were my list of symptoms all went away. I was able to swim, work, and walk. Now my heart shake is coming and going randomly a few days at a time and the doctors still don't want to hear about it.
I think it is a spasm in the right atrial that sometimes spreads to the hole heart and effects blood flow through the lungs. I come to this conclusion based on, During light shaking I feel the heart beat then shake, beat then shake, then the shake over takes the whole beat. The shake seems to have little effect on blood pressure taken at the arm. The shake is more prevalent on the right side of my body and when i lay on my right side i feel a harder shake. Lastly, the shake is at a much higher frequency then the heart beat. Heart beat 80 to 120 shake seems to be about 350 or higher.
Is there a curious doctor out there who can help me nail this down?