3 failed ablations? Is there any hope for a cure?

[mammaoftwins]

I'm a 31 year old female and mother of two. I was diagnosed with atrial tachycardia over seven years ago, but was asymptomatic up until 5 months ago. I have severe dizziness, syncope, shortness of breath, palpatations, and episodes of extreme angina, that never goes away. I've been on every medication, including beta blockers, calcium channel blockers, anti-arrythmics, and hybrids, and nothing works. I have been through 5 months of hospital stays and emergency room visits and failed ablations. The last one that I had was successful for 5 weeks. Now my symptoms have returned with a new symptom- Chronic angina. My doctors are at a loss, and told me when I am really bad again, ie.. 130-180 pulse, that I need to go to another hospital for treatment. I just want to know if I have been misdiagnosed all along, and there is something else wrong with me, altogether?

[banglamom]

Usually, my medicated bp is 90/50.  At that, I tolerate it fairly well, though it is considered a rather "soft" blood pressure.  If there is anything off optimal... ie, not enough fluids, over tired, increased cardiac irritability...it drops from there.  I have set a personal goal to not leave the house or start anything when my bp is below that because it is a recipe for failure.  When I have times like I FEEL like bp is a problem, I check it.  I have measured it at home as low as 60/30.  At that point, I am terribly weak and dizzy.  I usually lay on the floor with my feet on the couch.  I don't even perfuse my kidneys then.  I know because I don't/ can't pee, then when my pressure finally comes up... I'm back and forth to the bathroom.  I happens at least once a week where I am about dropped by my bp.  When it does happen, I generally just sleep.  In part because I am serious risk of just falling over.  I don't go to a hospital for help. I just manage things at home.  I have thought of going just so they can actually SEE what the problem is instead of my just reporting it.  Maybe then there would be less of a sense of... "she is doing ok with it."  Do you struggle with your bp too.  Is it low like that?  If people see my list of meds, the general assumption would be that I have very high bp to take all that, but I have never had htn.  Instead, I take it for the rhythm and struggle with it being very low.  I have my own madness to for conserving my energy for what is important.  Good luck to you.  Keep in touch.

[mammaoftwins]

How low is your Bp? I know what I felt like when my bp was really low, and I really just felt like sleeping all day. I'm thirty one and my twin girls are four. I wish I could borrow some of their endless energy. My family has been raising them for the last six months, and I just want to be able to raise them myself. Before all this ***** happened, I was a full time nursing student, worked almost full-time and I  was a happily divorced single mother with extreme independence. Major change. But, because I can barely walk or stand with out having major problems, I decided to borrow my friends wheelchair. It helps conserve what little energy I have, and save it for my girls.  Anyway, I don't feel like whining anymore, so good luck to as well, and God Bless you.

[banglamom]

My paced rhythm is rock solid.  If I am on my meds, and completely paced, I have a super steady rhythm.  I also have a super low bp.  I get to make a choice, a rhythm good or a blood pressure good.  Seems I can't have both.  The original plan was to ablate all of my own intrinsic rhythms and be pacer dependent.  However, it couldn't be ablated.  It would have ablated my phrenic nerve and left me also mot so good at breathing on my own.  I was willing to be paced, but not at all to need ventilatory support.

How old are you?  How old are these twin girls?  Are you completely immobile and they aren't calling it fulminant heart failure?  So far, I have not pursued anything like the disability because I don't want to be disabled.  I have wondered if it will eventually come to that.  Let me know how that plays out.  Ususally, instead of being depressed, I play the denial card.  I just do what I want until I pass out or have CHF problems so bad, I have to take a break.  You do what you have to.

You see I too am hoping for a cure.  Sorry to hear you are on the same path.  Blessings to you in the new year.

[mammaoftwins]

sorry typo, LSD!

[mammaoftwins]

You have a pacemaker and you still have arrhythmia problems? So much for settling for a pacemaker. Though, my doctors wouldn't even consider it because "I'm too young". Unfortunately I don't respond to calcium channel blockers at any dosage, absolutely no effect on me. I have been on the maximum dosage of Metropolol, betaxolol, atenolol, propanolol, clonidine,propafenone, iv metropolol, and sotalol, (had 8 out of the 10 severe allergic reactions with sotalol), and metropolol used to really work for about a week. As for as the condition of my heart, I have pump damage. But my heart is not abnormal in any other way, which I'm thankful for. The docs contradict themselves when they tell me that my heart is not being damaged by my condition, but I have a pump that is not at it's maximum functionality.  So I've decided that instead of sitting at home and being depressed that my heart is not behaving, I am going to get a wheelchair and use it to become mobile again, for school and for work, so that I can have the energy to raise my twin girls, I'm pretty much burned with the hospital system and the push of medication, most of the meds made me a comatose bed patient anyway.  Especially metropolol and the interesting hallucinations, I wonder if it has the chemical compounds of LCD? It's going to be interesting when I go to my cardio doc for a disability referrel, for a wheel chair and a school waiver, wonder how  that's going to go down? Any body have any info on how to get that done?

[banglamom]

Good info.  The more you venture into the less common meds, the more desperate the side effects seem to be.  I kept having huge problems with the bradycardia and the pacemakeer has honestly been the highlight of 2008.  I tell my EP md that I recommend them to people.  Have you had problems with heart failure off the back of all your heart ****?  (Well put).  If I wasn't ALWAYS fully tanked up on all my keds, by rate would never be under 142.  Yours stays that high even on lots of flecainide.  Do you try it with also lots of beta-blockers, lots of calcium channel blockers and some ace inhibitors to boot?  I DON'T recommend it if you can avoid it. More later, gotta run.

[mammaoftwins]

Thanx for the support. I've been on the maximum dosage of flecainide too. It also made me bradycardic, and I actually passed out from the low blood pressure and low heart rate. I've pretty much been on everything except two or three meds I absolutely will not take, because of the test study statistics. I was a nursing student prior to  the heart **** starting. Just a warning stay away from Clonidine and Propafanone. There are a few others that are in my pharmocology book that are even worse than these to. Some of these meds caused permanent hearing loss in thirty percent of the females in the study. And remember that most test studies are compacted of over eighty percent men. Most doctors that I talk too were surprised with this information. Anyway, thank you to those that have responded. As I'm writing this my heart rate is 142 LOL! And become an Informed Patient. Go to the FDA website type in your drug and read. There is info about everything on the meds that isn't printed in the pharmacy printout that you get. Also I like the comment about strapping a holter monitor to a cardiac doc and giving them a taste!

[Brooke_38]

Hello...

You are not alone as you your history sounds as perplexing as mine. I have been through 5 procedures. Of those 5, the most recent being in Aug 08' for RVOT-VT. I believe that my cardiologist and EP both view me as an enigma. Both have no idea which direction to take. It is frustrating to say the least. At this point, I can only hold on to hope that there will be an end to my daily struggle.

When procedures fail, it can lead you to believe that you have been misdiagnosed. Once the arrhythmia has been mapped in the EP lab, and the lesions have been placed to destroy that circuit...they will then try for quite awhile try to try and get it to start. If it cannot be provoked they then call the procedure a success. During the weeks that follow, while healing is taking place, the area that had been burned may heal and those cells that were thought to have been destroyed, just simply regenerate. Sometimes it takes a deeper burn to completely disconnect the faulty circuit.

Believe me, I know that it can be extremely discouraging and absolutley frustrating. Don't give up, there has got to be hope...We're all here for you. SOme of us struggling more than others. We'll support you any way we can:)

[banglamom]

I too had three failed ablations.  I kept taking more and more medicines.  Finally flecainide worked.  Too good at first and my heart stopped altogether.  Now, I take ALL the medicines to make the heart behave and have a pacemaker to run the rhythms.  If it sounds horrible, it really isn't, at least the pacemaker part.  The meds are and I too am still looking to see if there is ANY way to put a stop to the unending rhythm problems.  Good luck to you.  Let me know if you find an answer.  I answer a lot of questions here because I can and it may be of help to people, but I came here for answers to my own questions.  Blessings to you on this treacherous journey we are on.  I too have to wait until things are worse for some of next steps to happen.  Waiting to get worse, waiting for the proverbial other shoe to drop, is a hard thing to be sure.  One thing, I am learning more and more DEPENDENCE on God and in prayer.