Just wondering

Had pacemaker for 2nd degree heart block extending to 3rd degree. Much reading since after very little information from doctors. What I do not understand is if idiopathic heart block is an autoimmune disease why isnt it treated with corticosteroids, if its viral, antivirals and antibiotics. None of these things were tried before the pacemaker was put in. Looking back it seems to me the block was going from 2nd degree to 3rd degree on my admission to hospital, that is the process was actually occurring but is not treated. To me it is like someone having a chest infection being ventilated but not given antibiotics. I would be interested to know if this treatment is tried. I was told I would feel much better after the pacemaker but that took weeks, I assumed it was because I was run down but now I am wondering if the disease process that damaged the heart was making me unwell. Anyway hello to everyone I like reading you all and following your progress. Its 9 weeks now and somedays I feel ok about it.

5 Comments

treatment

by Tracey_E - 2010-04-20 06:04:09

Heart block can be caused by disease or the side effect of medication. It is not a disease in itself but rather the damage that is a result of the disease. Once the electrical system is damaged- specifically the connection between the SA and AV nodes- no medication is going to repair the damage. The pm physically rewires around the damage.

Everyone varies in how quickly they recover. It depends how bad you were before you got it, how long you needed the pm before you got it, how quickly you heal, how quickly they get your settings adjusted properly. I have congenital 3rd degree block and my hr dipped into the 20's the day I got it. My hr instantly jumped into the 60's so I felt energized from the moment I woke up. That's an extreme example! Since I was born with my block rather than developing it, my heart was strong and healthy and never diseased, just short circuited, so I bounced back very quickly. The lower your hr is before you get it, the more you notice an immediate difference in how you feel. Some people wake up feeling great, some take up to a year, some never feel better but they are a lot safer.

Thanks for replies

by Taisha - 2010-04-20 09:04:58

What started me thinking about this was a story about a baby affected by lupus in the mother and in first degree heart block treated by prednisone and not progressing to 3rd degree block. In my case I was already in 2nd degree type 2 which does need a pacemaker but I wondered if anyone had or received other treatment. From my reading it seems there is very little knowledge about this kind of heart block, well idiopathic says it all really. No one ever got better from 3rd degree heart block?

not really

by Tracey_E - 2010-04-20 10:04:20

I've never heard of anyone getting better from 3rd degree block. Better with 3rd degree is a long way from healed and beating normally. Sometimes I have short periods of 2nd degree block, that's new just in the last few years after a lifetime of being in 3rd degree 24/7. Technically that's better, the pm tech noticed it and said I was pacing less. I got excited and asked how much less... went from 99.9% to 99.1% Methinks I still need it LOL

Congenital complete heart block is usually idiopathic. There is a link between mothers with Lupus and babies with CCHB, babies have a higher than average risk of being born with it if the mother has Lupus. My mom does not have Lupus, my condition is just a fluke, an electrical connection that isn't there. I've never heard of treating it in babies, that's very interesting and a much better solution than a lifetime of pm's.

Adults who develop it usually get it as a result of an infection or medication, side effect of another procedure, or sometimes it develops at random and they have no idea why. There have been cases of it healing itself when it's the side effect of another procedure, but it's more likely to progress than get better.

I understand

by heartu - 2010-04-20 10:04:22

I only had 2 episodes of wooziness before I went to the ER on a Saturday, no other symptoms. I even did a hard workout the day before I went to the hospital

When I first got to the hospital I was in 2nd degree heartblock and after a few hours as they were wheeling me into the cardiac unit they were arguing that I should be in the Cardiac Intensive Care Unit, because by that time I went into 3rd degree block.

In the ER the cardiologist and EP both consulted, were convinced I must have Lyme Disease, because all bloodwork was fine, CAT scan was fine, everything checked out. That first night in the hospital I became very ill, HR in low 30s and bp went down to 80/40. EP came in the middle of the night with the ECHO tech and no problems with the heart itself. I was on a dopamine and antibiotic drip at the time. Since they all thought Lyme Disease, the EP wanted to wait on implanting a pm, even a temporary one. Funny, by next morning was doing better, HR went up to the 50s and by afternoon in the 60s and bp was up as well. Still on dopamine and antibiotics.

Sunday came and went, feeling fine, Monday the immuno doctor came and told me my Lyme Disease test was negative. The immuno doctor and the EP were sparring because the EP said I improved after they started giving me the antibiotic, but the antibody titers just weren't there. I knew in my mind that I did have Lyme disease, because I was not sick in the 6 months prior to getting the heartblock.

Tuesday, took me off dopamine & antibiotic, moved me to another room, I felt fine just a little weak because I had been tethered to my bed by monitors and iv's. They hooked me up to a portable monitor and Tuesday all was well. Got up Wednesday morning, ate breakfast, washed up in the bathroom and when I came out the doctor was there asking if I was alright. Apparently, my heart stopped briefly and I did not feel a thing. Half an hour later the nurse rushes in to check on me while I am reading the paper, again everything fine. Another half hour goes by, my husband comes, this time I feel a rush of warmth come over me and wooziness and while I am telling him I don't feel well, a ton of people flood the room, because this time heart stopped for 5 seconds. It was a no brainer, I needed a pacemaker to continue living. Had my pm put in that afternoon on 2/24. Went home the next day.

All test for lyme, autoimmune, thyroid, etc were negative. They ran more than 1 test to be sure. Some things that went through my mind were that perhaps I had illnesses as a child that were not treated, like strep throat (my mom had my tonsils removed when I was 4 because she said I suffered from bad sore throats with fever, etc. She also said that she thinks I had measles, but it could have been something else. I guess I'll never know).

What goes through my mind is, even if it were viral/bacterial and it was treated with medication, how could I be 200% sure it was eradicated and not just lying dormant in my body ready to attack me again at some later date, like my husband has experienced with 2 bouts of shingles before age 40.

Tomorrow will be 8 weeks for me, and all I can say, with tears in my eyes right now, that I am blessed to have the opportunity to be able to write this response right now and be living another day. I feel well almost like my old 53 year old self again.

I did LOL

by Taisha - 2010-04-21 12:04:05

You gave me a good laugh I paced 99.9% in the ventricle so I wont be holding my breath for an improvement, thanks for your answer it helps me to understand as much as I can. And all the good answers on this site. well better get on with the day, at least I feel better about it then I get all upset again but i guess this is normal.cya

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