The past couple of days have been rough. I have been having PACs, which feel like extra heart beats and bouts of Inappropriate Sinus Tachycardia. I have had these issues prior to the pacemaker that I just got on June 8th (2017) but was unable to take medication due to chronic Bradycardia, a slow heart rate. Now that I have the pacemaker as a safety net, I am able to take medication to help with the other issues. At this point, I have to wait 6 weeks to let the pacemaker fully heal and the meds to kick in and then we can re-evaluate the situation and discuss a possible Cardiac Ablation, which would be my 5th.
Over the past two days, I’ve experienced PACs (premature atrial contractions) every single minute, sometimes more, sometimes less, and about 5-10 episodes of Inappropriate Sinus Tachycardia (IST) each day. The IST tends to kick in randomly, often when I lie down after sitting up. My heart rate can jump from the 60s to the 140s in seconds, leaving me with tight, constricted feelings in my chest, and my lips may become cold, tingly, or even numb. It’s extremely uncomfortable and frustrating. The PACs can sometimes be so strong that they jolt me right out of bed.
I saw the doctor today and am still paced in the 80 percentile and they were surprised to see how often it kicked in. When my heart rate was higher from walking or with activity, it would have dropped and I could have passed out had the pace maker not been there. That is called Neurocardiogenic Syncope, which was confirmed in a Tilt Table Test I had a few weeks back. I am suffering from Dysautonomia but have not found the right doctor to determine why. I am currently trying to find a good rheumatologist to look into a proper diagnosis. Most signs point to Lupus (SLE) but nothing is set in stone. I definitely can tell how beneficial this pacemaker is and a life changer at that, I just really need to get the the bottom of what is causing my body to suffer.
I guess I just get worried because I also have had open heart surgery in 2011 for severe Aortic Insufficiency. I had my valve repaired and currently all 4 valves have mild insufficiency. I also have thickening on my aortic valve and a thickened heart muscle with slight left ventricular enlargement. With all of this and an undiagnosed auto immune disease, I sometimes have a hard time keeping my chin up. I also have recently discovered that I have multiple complex cysts on my thyroid, which will need to be biopsied for cancer.
Never take your health for granted. It’s incredibly tough to be patient, constantly waiting for answers. In the meantime, I’m stuck at home, away from my salon. I miss being able to work, travel, and feel free again. Right now, I’m in the process of applying for disability to secure medical coverage, especially with the anticipated cuts to Medicaid. My hope is to qualify for treatment at the Mayo Clinic so I can finally get the proper care I’ve needed for over a decade.
I think that’s all for now. The Rubik’s Cube is still being solved… to be continued.
