advice needed

I currently have had an ablation and now have a PM but am still having problems. I keep having issues with atrial tachycardia, and now starting to have what I suspect to be TIAs. My cardiologists want to keep medicating me and keep increasing my dosages. They are only treating symptoms and they have admitted that there are more complications that could happen if they do more ablation. The first time, they hit my phrenic nerve and paralyzed my diaphragm. They are fairly certain that they will paralyze the rest of my diaphragm if they do another ablation.
I am miserable and in need of some advice. Does anyone else feel more symptoms after becoming 100% dependent? Or is it better to wait it out?
I really need some advice. I want to know how much I should push for another ablation...my family doc thinks I should be PM dependent to solve my problems but the cardiologists want to wait...who do I listen to?
Any thoughts would be greatly welcomed!
Amber

10 Comments

Thoughts

by ElectricFrank - 2010-12-22 01:12:08

The reports above all seem iffy. How did they hit your phrenic nerve? Why are they certain they would hit it again. Ablating the AV bundle won't stop the atrial problems. It just keeps it from conducting to the ventricles. And why do you think you are having TIA's.

I checked your profile and you are in your mid 20's. That's a difficult age to go up against family and professionals, and do some independent thinking. Have you talked the situation over seriously with the docs? Take a deep breath and tell them you want to know what they are thinking. No more throwing ablations, med, and pacemakers at you hoping something will stick.

Best wishes. I know it isn't easy.

frank

amber

by sugar - 2010-12-22 03:12:57

I would consult with another specialist and make sure that a new group is the best. All of what you described sounds very odd to me. I have afib/tac. and due to a very long time ago having had an ablation the natural pacemaker was damaged and now I have the pacemaker. I have had afib/tac since I was 24 and I am now 61 and have had a pacer for only 1 year.
I have had drs. from Connecticut, Boston and Cape Cod and all agreed to what my issues were. What part of the world are you in? Always seek other opinions especially when you are not happy with what is going on.
Patty/Sugar

more info needed

by tcrabtree85 - 2010-12-22 05:12:08

Hi, welcome. I am 25 and am pacemaker dependent. I dont exactly understand what is going on in your situation.
I dont want to say that its easy being dependent on a pm bc it is not. Though do I believe that you can live being dependent yes.
Im really curious to understand more what is going on with you. Why are the cardilogists saying what they are? if you are only see a cardiologists I highly recommend you finding a EP. a specialist that would be able to give you more answers.
I wish you luck. Take care!

Tammy

TIA's

by ElectricFrank - 2010-12-22 05:12:22

Amber,

Your mention of epilepsy and seizures together with the description of the experience you suspect is from a TIA is helpful. There are types of seizures other than the full blown ones. I would tend toward this being the cause rather than TIA's. The docs tend toward the TIA diagnosis because of your afib, but with no real data to confirm it.

I would also suspect that some your hard to diagnose problems are from the cocktail of meds you are taking. Just stop and consider the interactive and combined effect of so many powerful drugs. Also, I'm sure many of them are time release so in some undefined way this interactive effect is taking place in an almost random sequence over the course of several days. How could anyone make sense of what is happening. Here are a couple of suggestions:
1. Check out this web site. It lets you list your meds and then gives you a list of side effects and interactive effects.
http://www.surveyorhealth.com/meds/f?p=500:4003:0
Look over the report and see if any of the side effects match your symptoms.

2. With that in hand pick the doctor you trust most or the one who is managing your case and can make changes. Sit down with him/her and make it clear you want to get your meds under control. Ideally you would stop all meds except those that are absolutely necessary. Give your body a week or two to become accustomed to the change and then add back one at a time if necessary. Always take a list of your current meds with you to the doctor along with the side effects reported by the web site above. If a doc wants to add a med ask what it replaces or duplicates with the idea of removing unnecessary ones at the same time.

3. You are going to have to manage the situation if you are going to get your life back. You are up against a medical culture that says a doctor shouldn't stop another docs prescription. So it is easier to just add another. My approach is to let a new doc know that I don't give a damn (I use those words for emphasis) about their ethics. Bringing along the med list with side effects also creates an atmosphere that I know what he is up to. Another way of saying it is if he is caught between me and the medical culture, I am going to be the roughest to deal with.

best,

frank

not really sure

by ambers - 2010-12-22 06:12:21

I do see an EP and a cardiologist but they all seem to be stumped about my issues. I currently take 21 pills a day and thats not the type of person I am. Im not sure how they hit my phrenic nerve but they say that where it sits, they would hit it again. I've had a doctor tell me that it shouldn't have happened becuase they were doing an SA node ablation, but I don't really know what to beleive any more.
If I were to have another ablation done I think I would go to Mayo or Iowa City to have it done where they are more specialized.
The other issue is the meds. I am beginning to wonder if they have any clue and so they are throwing the meds at me hoping it will have a placebo like affect. Its almost like they think it will help psychologically. I don't really know.
I am 25 but I also have a family of my own and need to be able to take care of them and assure them that I am okay. My daughter told Santa that all she wanted was for her mommy to be healthy and be able to play with her.
I have addressed the anxiety but the answer was more pills. The first one they tried had too many bad side effects and the one I'm on now is an epilepsy drug that has too many issues as well but I can't stop it without direction from my doctor becuase I can start having seizures. But my doctor is on vacation until the first working day of the new year.
As for the TIAs, I think I am having them becuase its the scariest feeling I've ever felt. I couldn't put the words together to even ask for help. I spoke with my family doctor and she said that next time I should call an ambulance so that they can better diagnose it. She said that they can be caused by clotting or by a sharp drop in blood pressure (which I experience often).
Im just not sure what is going on anymore. I currently see three doctors offices on a regular basis. The heart center, the pulmonologist, and my family doctor who is helping to keep everything in check. Its getting really expensive and exhausting. Make that four, because I also see a therapist to help me deal with everything.

waiting

by ambers - 2010-12-22 08:12:40

I live in Des Moines, Iowa. We have good medical staff here and I do like my doctors. I am feeling very overwhelmed right now. I may have been confusing in my response earlier it was 4 am here and I couldn't sleep...
I do not have epilepsy and have never had a seizure before. The medication is Neurontin and was originally marketed as an epilepsy medication. My doctor prescribed it to alleviate anxiety. This was after my suspected TIA. I was concerned with discontinuing it because it can cause seizures when stopping the med. I called and stopped this medication today so we will see how I am feeling in a couple days.
I am fairly educated in the medications and I do my research about each one and their side effects before beginning them. My list isn't that big but I take a lot of each of them. There are no adverse interactions among them.
I still am wondering if they are masking the real problem. I am also wondering what the problem is and why my doctors want to wait and wait for everything. It almost seems that if they can keep me coming back then they get more money from my insurance and myself.
I am just thinking about if being PM dependent would solve the tachycardia since they can't seem to solve it any other way. Its extremely uncomfortable and is interfering so much with my life.
Maybe I'm benting a little but I am so frustrated and sometimes I wonder if its worth the fight. I am so used to being an active person and now I can't walk up my stairs at night to kiss my kids without having to pause because I can't breathe (paralyzed diaphragm) and can't act professionally when with a client since sometimes my heart starts racing and I can feel it so think in my throat that I can't breathe (did I mention it feels irregular).
I do advocate for myself very well most of the time. i just feel like my doctors don't want to figure out the problem but instead want to keep me waiting when I would like to just feel better.
Amber

Thanks

by ElectricFrank - 2010-12-23 01:12:00

Amber,
Thanks for clearing things up.

OK, lets try again and see if I'm anywhere near understanding. Does your doctor feel you are having anxiety attacks? I wonder because you mentioned he prescribed a drug for anxiety. If so did it start after the botched ablation? A common part of the anxiety/panic syndrome involves the diaphragm. I can only guess what a paralyzed diaphragm (half of it) would feel like, but my guess is that it would feel like it was hard to get a breath. Has anyone mentioned slow deep breathing as a way of dealing with the feelings. If necessary stabilize the diaphragm with you hands.

As for the ablation to being PM dependent, keep in mind that all that means is that the nerve bundle between the atrium and ventricles has been interrupted. If the problem you have is that atrial fibrillation is being conducted to your ventricles causing a fast irregular heart beat that may help. The atrial fibrillation would still be present and have symptoms as well so be prepared for that. The pacemaker would then take over the pathway from atrium to ventricles and decide when to transmit the atrial beat and when to provide the pacing itself.

Now, keep in mind that the term PM Dependent is misleading. It can easily be taken to mean that if the pacer failed you would have no heart beat and die. Actually, the ventricles have a "fail safe" pacer that in the absence of a AV pace will pick up a slow but survivable HR. That rate is somewhere in the 25-40 range in most of us. Mine is about 30 last time I checked. So the PM dependent isn't something to be feared. As I've mentioned here in the past, if you fly on any modern jetliner it is totally computer dependent. It will fall out of the sky if the computer quits. In the next few years you will find that steering and brakes on new cars will totally computer controlled.

I hope I got somewhere near it this time. If you would rather I shut up LOL just let me know. I won't be offended or hurt.


Give the kids a hug for me. This is rough on them as well.

best,

frank

makes sense

by ambers - 2010-12-23 03:12:13

Thank you for clearing some of that up for me. I do have anxiety attacks now but its kinda a chicken or the egg thing becuase I don't know if I can't breathe first and then I have anxiety or if I have anxiety and then can't breathe! fun....
I was very confused about the dependency issue and I appreciate you clearing it up. My rate without the pm at my last check is 39...
I appreciate your feedback and feel better prepared to deal with some of the doctors since I understand a little better.
Thanks again
Amber

Amber

by Karri - 2010-12-25 11:12:18

HI Amber,
I too was/afib, had Inappropriate Sinus Tach., last week, they increased my pacemaker settings, so now I am 100 percent dependant. Do not like it because I can feel my heartbeat all the time.

Something you said really stood out when you said that you felt heartbearts in you throat, I get that too, and that is a Junctional Rhythm, right now my doctor is treating me with meds to control it, but I'm going to get a second opinion. I have a hard time going up stairs because the Junctional rhythm makes it so I'm out of breath that I feel that I've run a mile.

thanks

by ambers - 2010-12-25 11:12:24

I knew that I was having a junctional rhythm but they said that my pm hasn't "recorded" or whatever any lately. They increased my rate to 70 and that helped some but I also can't walk up the stairs or do anything else without feeling like I've been running. They also started me back on bisoprolol and now increased my dosage again.
I am hoping to get another opinion at a more prestigious hospital soon. My aunt is a CRNA there and highly recommends the EP's there.
Please let me know if you figure anything out with that. I will also let you know if I hear anything new. Happy holidays and I hope you enjoy the long weekend.
Thanks
Amber

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I am 100% pacemaker dependant and have been all my life. I try not to think about how a little metal box keeps me alive - it would drive me crazy. So I lead a very active life.