LoneAfib,and orthostatic hypotension

[Lynnieben]

I was diagnosed with Lone Atrial Fibrillation in January 2001.My heart had to be cardioconverted, as no other medications were working as I was in the ER. That episode had gone on for over 48 hours. I was told that my rate was almost 400. I have tried all kinds of medications: Toprol XL 200mg,Covera,Sotalol,Propafenone,Atenolol, and now I am on Flecainide. I have had three Radio frequency Ablations at Henry Ford Hospital and none of these have been successful. My electrophysiologist says he cannot locate where my Afib originates from, but that when I am in it, it comes from everywhere, and everything stimulates it. The last ablation procedure took 10 hours, and he said he believes that it is originating from the 4th vein of the heart,but can't get to it with the catheters because he would need to make a U-turn to get down to that vein, and the catheters aren't capable of that. He said no amount of ablating was going to help me, because there was too much,and from everywhere when I was in Afib. I experience episodes about twice a week, and sometimes it's for a few minutes, other times it's hours. I have worn event monitors several times which have recorded these events. Ever since my last ablation, I have had problems with my blood pressure. It is intermittent. It is normal while I am sitting, but when I stand, my heart races to 105bm,and BP drops to 83/70. I have passed out 3 times. On coumadin. Tried florinef,proamatine,it hasn't helped.At times BP remains normal while standing. I am 42 and fit.Could something have been ablated that should not have? Please help me.

[debra21784]

Good luck,sounds like things are moving along

[Lynnieben]

Hi Debra,
I just made an appt to see my cardiologist thru his nurse. I told her of the problems I am still having, and let them know what the Doctor at this forum said about coming to the Cleveland Clinic. She says it is very possible that he can write a letter to my insurance company to allow me to go out of network, as of no one here seems to be able to figure out my problem. She said by my blood pressure readings, that it is possible it is from arrythmias that they have not diagnosed, or possibly from afib episodes that I can't feel. I usually have no problem feeling my episodes of afib, as they are very intense, and at such a fast rate,and go on for hours. It makes it very difficult to breath,and as you probally know from your own experience that it is no picnic to go thru. She said I could be having episodes that I can't detect that are causing me to have extreme drops in my blood pressure. I was also wondering if it would have anything to do with being on coumadin, and possibly have some bleeding going on internally that I am not aware of, causing my blood pressure to be screwed up. Sometimes with doctors, you have to try and diagnose yourself, cuz they don't want to admit they don't know what to do for you. I went to Henry Ford Hospital in Detroit, and my electrophysiologist that did all 3 ablations was the director of the electrophysiology department. So to continue going there is out of the question, cuz I know he can't fix me. He is known as the best in Michigan,and has done probally around 1000 ablations. He did admit that there was no guarantee that it would be a success, but that he can cure about 60% with the first ablation, and 80% with a second. But after my third ablation, he said no amount of ablating was going to help me because my electrical system is just too screwed up, and to try and live with it, or keep trying medications until something works. He can't even locate where it originates from, so I really think I need to go to the Cleveland Clinic. So wish me luck with my insurance company! I appreciate your concern. I will let you know what my cardiologist says when I have my appt on this Tuesday.  Take Care Debra, and thanks for writing.
  Lynnie :)

[Lynnieben]

Hi Debra,
I still have episodes of my afib,and they can't figure out why my blood pressure fluctuates so much. They took me off from all heart medication except my coumadin to see if my orthostatic hypotension was due to a side effect from my meds. I was off from my medication for a month, and I still was having the same problem with my blood pressure,and then of course alot more episodes of my afib. Now I am back on flecainide for my afib, and they don't at this point know what to do about my blood pressure jumping all over the place. I am at wits end. The doctor who did my 3 ablations, supposedly is one of the best, and my cardiologist suggested to him that possibly I needed a pacemaker, but my electrophysiologist said that that would not help my situation because he was not sure where my afib originates from. I would love to go to the Cleveland Clinic, but so far my insurance won't allow me to. I am in the process of trying to get with another electrophysiologist, but the one I was going to was known as the best here in Michigan, so I think I am kinda screwed as far as getting any type of help. I am sorry to hear about your stroke. Thank God they have me on coumadin, because the thought of a stroke scares me!! It's not fun having this condition. I am glad to hear you are doing better. Somehow, some way, I am going to try and go to the Cleveland Clinic. Best of luck to you! Lynnie : )

[debra21784]

Best of luck to you.I was on flecanide for awhile prior to open heart surgery and post stroke.It's not too bad had also been on aminioderone too.It controls the rate but like you said the a-fib can still occur.I hope they can find out soon in order to help you.Have you talked with your insurance company about an out of network referral?You would be responsible for a larger copay but it maybe worth it.What academic medical centers are in the Michigan area?I'd call them and ask abou thier cardiology dept.Also there is an association of electrophysologist with in the American Medical Association and it would be of help to find out referrrals that are better prepared to hadle your afib.Now there are agreater number of ablatations being performed with radio frequency,hot and cold ablatations.I also contacted the catheter companies when I started my research.They know who is doing whatin ablatation.It sounds like you really do need to get further studies done and another opinion.I found that if you beg real hard and get a empathic case manager with the insurance company you can usually get what you are asking for.

[debra21784]

I agree get another opinion from a large academic medical center EP dept.My ablatation for a-fib was done at Hopkins which has one of the best EP cardiologist in the world(Caulkins).Am certainly glad to hear that you are on coumadin for a-fib (lone or not)the doc on this forum and Idon't agree on this issue but he isn't the one who had the stroke from lone a-fib.Prior to my ablatation they did discuss total ablatation of SA node and a permenant pacer.Has this been suggested?Like you I had syncope and heart rates in the 300+ range and required chemical cardioversion several times.It's a nasty disorder.Since the ablatation now only a few irregular beats,but nothing like before.On no meds now other than coumadin post stroke. GET ANOTHER OPINION

[CCF-M.D.-RCJ]

Lynnieben,

Sorry to read of your troubles.

First, your BP changes are likely unrelated to the ablation procedures.  The changes are almost certainly from medicines.

Second, seek another opinion.  I do not always recommend the CCF for second opinions, but in this case, I do not think that a better option exists.  The best doctors in the world at afib ablations are here.  If it cannot be done, then you will at least have heard it from the best.  Also, surgical options exist.  They may or may not make sense for you; a detailed evaluation here at CCF will allow that determination to be made.

Third, in the meantime, a medicine alteration is in order to both better control your blood pressure and better control your afib.  The particular alteration to be made depends on details of your history that are impossible to fully provide over the internet.

Good luck.