The past couple of days have been rough. I have had sugar the last two days when I felt worse so I am hoping eliminating sugar again will help. I usually don’t have sugar in my diet but caved and had some dairy free Ben & Jerry’s almond ice cream. Basically, 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. I would then be 100% paced. I am trying to be positive and hope that avoiding sugar will help calm things down and that my heart is just angry and still needs to heal and adjust. In these last two days I have had PACs every single minute, sometimes more, sometimes less and about 5-10 episodes of Inappropriate Sinus Tachycardia (IST) each day. The IST will kick in randomly, often when I lie down from sitting up. My heart rate goes from 60s to 140s in seconds and my chest feels tight and constricted while my lips get cold and tingle or go numb. It is VERY uncomfortable and annoying, to say the least. The PACs sometimes will feel so strong that they jolt me 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 is really tough being patient and waiting AND WAITING for answers. In the mean time, I am home in bed and away from my salon. I would love to be back to work and travel and run around and feel free again. I am currently trying to get disability so that I can ensure medical coverage (since there will likely be billions of dollars in cuts for Medicaid) and qualify to go to the Mayo Clinic so that I can get the proper care and treatment that I have needed for a decade or so.
I think that is all for now. Rubix cube still being solved. To be continued….
