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NCS pacemaker and toprol xl


john1970
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I am a 34 yr old male diagnosed with NCS or vasovagal syncope. They put me on 50mg of toprol after failing the first tilt table test. I passed out within 4 min and my heart stopped for 10 sec. The second time on 100mg of toprol I passed out in 15 min. and my heart stopped for 20 sec. So they put a pacemaker in me and I still take 100mg a day. I have alot of shortness of breath and I still have to lay down several times a day. I have not worked in 4 weeks. I am worried that I won't be able to return to work. I can't drive and somedays I can't even talk on the phone without getting out of breath. How long does this last? Any advise? The doctor said I can return to work and resume normal activity but I don't feel well and I am afraid of passing out.

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toprol is a beta blocker, so I am wondering why they are putting you on a drug that slows your heart rate, when it's already having serious pauses. I wouldn't think you'd be on a beta blocker, if your problem is pauses like that, it's usually given to those of us that have problems with tachycardia or tachy with a slower rate when upright, but not with those long pauses. I would ask your doctor why he has prescribed something that could contribute to your problem. Also, unfortunately the fact that you have a pacemaker may not make any difference in your ncs. It will definitely help with the pauses that are causing your syncope, but as my ablation proved, it doesn't really correct the underlying autonomic problem. I actually felt much worse, like you after they "corrected" my problem. However they were not taking into account my problem wasn't primarily with my heart, but my autonomic system. Does your doctor have a good understanding of pots, ncs ,oi etc. It sounds like maybe not. I would see him and see just how much he knows. When I confronted my cardiologist about how much worse I was, he asked me to discharge myself from his practice, as he had "done his part" Sorry you are going through this, and hope you feel better soon. I think they need to taper that topral and try something else, but that's just my personal opinion. Good luck, morgan

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John, I have had a pacemaker for almost two years - haven't worked for two and a half years. My doctor told my LTD insurance I was able to work. It took 2 years of fighting to get my SSDI approved. It was approved in October of this year, still haven't seen $ yet. I still have EXTREME fatigue, tachy, dizziness, pre-sync. I can't tell that the pacemaker did anything but make another payment on the doctor's BMW.

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I'm not trying to discourage you in any way. Your situation sounds very similary to my wife's. She was on several different medications after she got her pacemaker. She also has NCS and her heart was also stopping for extended periods of time (reason for the pacemaker). They put her on a "cocktail" of drugs. I believe Toprol was one of them to start with. She was off work for a year after she had her pacemaker. She attempted to go back to work (she wanted to and her doctors released her). She worked in a factory and they told her the equip was safe. Well, they eventually found out none of the equipment was safe. She got switched to a lower paying job and she ended up leaving. She tried a couple of jobs after that. They both put her in the ER and she was working part time. One of them was even a work at home thing.

Back to your medications question. In the years that we have been working through this and with many many doctors the main conclusion is different meds work differently on different people and there is a lot of guesswork and experimentation that goes into it. My wife was having problems where a med would work for a couple of months and then stop. Right now, I think we are sitting as good as we have been in a while. Basically at the point that the side effects of the drugs aren't so severe she can't function and the meds she is on seem to work at least partially.

I'm really sorry to hear you have this horrible illness. I hope you have friends and family supporting you. I also hope that this is the end of your journey and will recover rather than it being the beginning.

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Hi, I also have NCS and POTS. My pacemaker was put in 99 it has been 5 years and it really helped me alot. I am taking a beta blocker but low dose of lopresser. I also take florineff and celexa ( antidep.). Well before all this I was passing out and having major episodes all the time. It took them almost 10 yrs. to figure out what was wrong with me. Dr. says I use my pacemaker alot these days but says atleast we know its working. I have not passed out one time since my pacemaker so I know thats a good thing. I still have my bad days thats for sure but not like before. Well don't want to go on to much hope this helps some.

Take Care,

Roxanne

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My brother-in-law was considered for a pacemaker but first they implanted a Reveal monitor (insertable loop recorder) and that proved that the pacemaker would not help with his form of syncope. (non-epileptic seizures is his current diagnosis). My understanding is that the Reveal monitor is placed into a small pocket in your chest and that the same pocket would be used for the pacemaker if the decision is made to go that way. The Reveal monitor is not a permanent implant. In his case it was worth it to avoid implementation of a pacemaker that would not have helped. Information on the device they used can me found at:

http://www.medtronic.com/servlet/ContentSe...e=faint_art_new

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