Suffering for 10+ years, Please Help!

• by BDas23
• 2016-02-29 01:02:31
• Complications
• 1385 views
• 4 comments

Hello Pacer Friends!

I could really use some help!

I have been suffering (for over 10 yrs) with fatigue,feeling lightheaded, daily headaches, and difficultly concentrating. I feel like I'm in a dazed or confused state most of the day. People at the grocery store ask me if I'm feeling okay. Others think I'm high! It's horrible, but 10+ yrs later I still have no resolution from doctors.

I'm new here, but I'm not new to the world of pacers. I have had 5 over the span of 20 yrs. I'm a 23 yr old female, and my first pacer was at 3. I had complete (3rd degree) heart block with tachycardia (250+ bpm). After 3 AV node ablations, I had my first pacer (biotronik DDD) implanted. A few months later the device failed, and I received another pacemaker from Medtronic. Also DDD. I was able to run around, and eventually I got into competitive swimming. At 9 yrs old, My pacer was replaced again with another Medtronic pacemaker (DDD). A different surgeon had implanted that pacemaker, and he replaced my leads as well. Soon after I felt horrible. None of the doctors listened. I cried daily for 1.5 yrs. Finally, at a cardiac follow up (every 6 months) I was admitted to the hospital. I got a new Medtronic DDDR pacemaker. I still felt terrible. I had horrible headaches, extreme fatigue, and I had a hard time concentrating and remembering things. I complained to my doctors over and over. Eventually, he told me I should see a psychiatrist. After that I had just given up. I decided that life is what I make of it. If this is what I had to deal with then so be it. I continued to swim. I played a bit of soccer too. I studied hard, although I was an average student at best. I made to college. Still living with my symptoms, I decided to be a premed major. In 2012 (after 1 yr in college) I had my pacemaker replaced with an AdaptaDR (DDDR) pacemaker from Medtronic. I felt slightly better, but I still have the fatigue, dizzy spells, confusion/difficulty concentrating.

I have switched to an adult electrophysiologist. He thought I might have POTS. He said it's difficult to say it's POTS, because I don't have a drop in bp. Also, it's hard to determine if I have tachycardia when I stand up, because I'm paced. I have always been 100% paced. My pacer is set at low 40 bpm and high 210 bpm. I was at 55-60 bpm when I was younger, but being athletic the doctor adjusted the settings down to 40. I've never reached 210bpm. I'm not sure why I'm set that high. I'm guessing its the tachycardia. Let's see...I've also have a heart murmur that's been there for over 10 yrs. Also, at around 10, my pediatric electrophysiologist suggested placing a 3rd lead. He said that I had AV dyssynchrony. However, he never implanted a 3rd lead. Over time, he told me that it had improved enough. He had me on Captopril (ACE inhibitor) for a few years, although I had normal blood pressure. I took 1/2 a tablet every morning. After age 13 or so, he took me off it. I've been on no other meds since.

I've had blood tests, and a CT scan of my head. Everything (thyroid,vitamin levels,etc) came back normal. My CT is normal. I was diagnosed with chronic fatigue syndrome, because my PCP was tired of seeing me. My pacer was checked a few days ago, and everything looks good. I still try to workout at the gym, but the fatigue and dizziness get to me. I've never passed out.

Sorry for the long post! Please any suggestions, anything at all will be greatly appreciated. Thank you!