WHY CAN'T THEY FIGURE IT OUT .....

[Gerard]

I AM 32 YRS OLD AND HAVE HAD PROBLEMS WITH AN IRREGULAR HEATBEAT FOR SEVERAL YEARS. SEVERAL MONTHS AGO I HAD A FEW REALLY BAD "EVENTS" AS I CALL THEM. IRR BEATS/FAST/DIZZY/GENERAL SICK FEELING.I HAD AN EVENT MONITOR TEST (ONE OF MANY) AND WHEN I GOT THE REPORT BACK IT SAID AFIB....(BUT THEY CANT FIND THE STRIP SO MY DR. NEVER SAW THE ACTUAL EVENT) MY FAMILY DR SENT ME TO CARDIO DR . HE RAN MORE TESTS AND I GUESS HE IS AS STUMPED AS EVERYBODY ELSE IS.. HE DID SAY THAT THE TOP PART OF HEART IS ENLARGED,SLIGHTLY BUT HE'S NOT TOO WORRIED.I AM NOW TAKING RYTHMOL AND ATENOLOL. MY EVENTS LAST FOR A SHORT PERIOD OF TIME USUALLY LESS THEN A MIN,BUT IT IS A ROUGH MINUTE !!!!!!!! IS THIS OFTEN SEEN IN SOMEONE SO YOUNG? MY DR IS GOOD BUT I AM STILL HAVING THESE EVENTS AND I WONDER IF ONE DAY THEY WILL HAPPEN AND NOT GO AWAY ! WE JUST INCREASED RYTHMOL TO 300MG 2X A DAY WITH ANOTHER HALF PILL IF NEEDED.
IN THE PAST MY FAMILY DR TREATED ME WITH LANOXIN BUT THAT DIDNT WORK EITHER. I WANT TO BE ABLE TO LIVE WITHOUT BEING IN FEAR OF THESE EVENTS. THANKS FOR ANY HELP !!!!!

[Kathy]

I am always looking for answers about irregular heart beat. I started having this a couple of years ago and I doctored with my family doctor. He sent me to a cardio. The Cardio caught me having a spell where my heart did all kinds of flip flops and pounding with irregularity. He read the ecg and said that I needed to see my doctor about some stress meds. He wanted me to take enderol so I tried that but it kept me from sleeping at night so I just take a half of xanax when I have a spell to take the edge off. It doesn't make them go away it just makes me not worry so much about them. I don't know about anyone else but the worst time for mine is when I sit down and when I go to bed. Sometimes it seems like it is my back that is causing it, that maybe it depends on how I am setting that it might be pinching nerves. I don't know, I have tried to pin point why it does it,just when I think I might have it figured out, it does it anyway. It makes me very upset, I can't go anywhere because I am afraid that something is going to happen to me. I like to talk to people that have this problem because it makes me feel like I am not alone. I know one thing I have noticed is, if something happens in my life that is very stressful, it does it everytime. My syptoms with this are, it feels like my heart moves my body, I get dizzy and get be setting still but I feel like I am going to fall out of my chair. It flutters up the side of my neck, I feel it skipping in my chest, I hear it when I am laying in bed, it also feels like my heart is turning over. Sometimes I start shaking like I am cold but that goes away in a few seconds. Thanks for listening and if anyone has any input I would be very grateful.

[Kathy]

I am always looking for answers about irregular heart beat. I started having this a couple of years ago and I doctored with my family doctor. He sent me to a cardio. The Cardio caught me having a spell where my heart did all kinds of flip flops and pounding with irregularity. He read the ecg and said that I needed to see my doctor about some stress meds. He wanted me to take enderol so I tried that but it kept me from sleeping at night so I just take a half of xanax when I have a spell to take the edge off. It doesn't make them go away it just makes me not worry so much about them. I don't know about anyone else but the worst time for mine is when I sit down and when I go to bed. Sometimes it seems like it is my back that is causing it, that maybe it depends on how I am setting that it might be pinching nerves. I don't know, I have tried to pin point why it does it,just when I think I might have it figured out, it does it anyway. It makes me very upset, I can't go anywhere because I am afraid that something is going to happen to me. I like to talk to people that have this problem because it makes me feel like I am not alone. I know one thing I have noticed is, if something happens in my life that is very stressful, it does it everytime. My syptoms with this are, it feels like my heart moves my body, I get dizzy and get be setting still but I feel like I am going to fall out of my chair. It flutters up the side of my neck, I feel it skipping in my chest, I hear it when I am laying in bed, it also feels like my heart is turning over. Sometimes I start shaking like I am cold but that goes away in a few seconds. Thanks for listening and if anyone has any input I would be very grateful.

[Cleveland Clinic, MD]

Thanks for your comments Kaye.  There is a lot of variability in afib.  For many people ice water has the opposite effect - it puts them into afib.  Newer drugs are coming out and ablation is resulting in cure for more and more people so hang in there.

[Kaye]

Gerard:

I have found out, like yourself, that there are alot of people on this planet with this crazy disorder.  I was diagnosed two months ago with Afib and was given Linoxin and Cartizem.  After about a month of not having any episodes but feeling awful, and I don't know whether that was from the medication or from my anxiety over the whole thing, I started having episodes regularly at night.  What a pain.  I would get up and drink ice water, which would put the heart back in normal rhythm.  I was getting tired of that, so I got a second opinion and was given rythmol 150mg twice a day in addition to Cardizem.  That worked really well for about 10 days (no episodes and I could sleep at night).  However, I had an episode this A.M. of rapid heart beat which lasted 30 minutes even with the ice water.  I can sympathize with you.  It is a total pain.  From what I have gathered so far, this sort of thing is as varied in symptoms and control medications as there are patients with the problem.

Good Luck and keep trying.  Kaye

[Cleveland Clinic, MD]

Thanks to all.  The implantable device called a "Reveal" by Medtronic is about the size of a pack of matches and is placed under the skin using a local.

[Gerard]

I got event mon yesterday... This is my 4th try at this....
trying to catch it. we have reports that show other thing but not clear cut afib! As i stated in my posting I am trying to get a copy of the test I had several months ago. The actual "stip" is lost so all we have is the hospitals cordio dr info, which he said looks like afib. Will post another update if and when they find something out. I hope its not afib !!!! But I want to know why my heart has good days and bad days. My problem comes and goes and due to that its hard to catch it in action. Maybe  I get lucky this time. thanks for all the input. Its nice to know I am not the only one on the planet with this problem.
I called my cardio dr and told them I want an event mon to try to catch this "thing" we have seen the pvt and svt's but not the afib. I guess i need to see it so I have "proof" that this is real and it does happen. Sad but true, the medical comm takes too much for granted. When i am told things like "its coming from the top of the heart, no need to worry" I get worried !!
I am the one feeling sick all the time !!!! I guess I have to "push" them to solve my problem. I have several perople in family that are in medical field, father in law is Dr......
I know they dont always have answers, but do they look hard enough sometimes ????????
again, thanks to all esp. ccf cardio, nice to know somebody cares!
Gerard

[marie]

one more thing..what exactly is the implantable devise?  Is it a major surgery to have it put in?  What are the risks to having this done?

Thanks!

marie

[marie]

What exactly is A-Fib??  How is it associated with PVC's?  Could a long run of PVC's actually be A-Fib, or are they two totally different things??

Thanks in advance for your help!

marie

[Cleveland Clinic, MD]

Thanks to all for their comments.

[To Lou, From Sara L.]

Lou, please make sure and write us back when the event recorder comes back, want to know you're okay:)

[Cleveland Clinic, MD]

I would suggest an event monitor which can be worn for several weeks to try to capture one of the episodes.  If this fails an implantable recorder called "Reveal" can be placed for a year to record one of the events.

[Deb]

Hi,

A-fib can be very hard to deal with.  Yes it can happen at any age.  It is sad though, that many times doctors relate heart issues to stress and panic attacks.  The doctors on this site do provide people with great info, and try very hard to help.  They don't treat those who ask questions, no matter how goofy, as being nuts !

The procedure you speak of, is called a "Maze". It is a very tough surgery to go through.  But it is better when you are younger then older to have it done.  You need to talk to your doctor if and when they do say it is a-fib.
Here is a site for a-fib,http://members.aol.com/mazern/index.htm

I hope it helps.

[Lou ([email protected])]

Hi,
I'm also 32 and was diagnosed with A-fib . I couldn't believe it. I didn't know anything about this and have no family history of it. I'll give you a brief history of how I ended up with a-fib.

I was 26 and had a terrible flu type virus. I was admitted to the hosp. with high fever and symptoms that doctors just couldn't understand. I was tested for 4 days by some 20-30 doctors and they couldn't figure out what I had. After I left the hosp., feeling better, I was back to normal within a week. About 2 weeks later, I started feeling a funny feeling around my throat area. I could feel my heart beat and also the rythem on my throat. I didn't make much of it but noticed that it was happening more often (3-5x daily). The symptoms would last about 10-15 seconds per episode. As time went on (3 months), I would have these types of episodes occur 15-20x and last 30-60 seconds daily. At this time I seeked medical attention.

My wife worked at a major hospital in Manhattan (NYC) and was familiar with the the best cardiologists. I visited one and went through a number of tests. Well, after a couple of weeks and a number of tests, I was told that the flu-like virus I had a couple of months ago had attacked my heart and caused the irregular beats. I've been on a number of meds ever since. They seem to work for about 6 to 9 months but my symptoms would eventually come back. The meds I was on are as follows:

Toporol: 240mg (worked great for about 9 months but I would have symptoms 2-4x daily after 5 months on the med. and each episode would last about 5 min. with my heart beating irregularly from 50bpm to 160bpm.)

Cardizem: 240mg (same results as Toporol except that after 5 months of having nearly no symptoms that I could detect, I started to have 2 or more episodes a day. The only difference with the symptoms was that my heart wouldn't race to 160bpm. and the episodes would last about 10-15 min.)

Tiazac: 360mg (same results as Cardizem. It worked for about a year or so with minimal episodes (2x daily), but eventually became 15-20x daily with each one lasting 10-20 min. The other difference was that my heart rate had also slowed down.

Cardizem: 300mg (same results as Tiazac except my heart rate increased just a bit and the meds where good for only a month or two).

Finally, I went for my regular 6 month visit to my cardiologist. I was asked how I was feeling, I told him fine and that I was having the episodes about 5-10x daily. When he did the EKG, it showed that I was in a-fib and didn't even know it. He schedualed me for another visit within 2 weeks. I went back and again, without me knowing it, I was in a-fib. I was given a monitor for 24 hours.
About 3 days after returning the monitor, I received a call from my doc. and was asked how I felt. I told him that I was a bit upset because I didn't think I had any episodes while on the monitor. Well, to my surprise, he told me that I was in a-fib nearly the entire time and that my heart rate had dropped into the upper thirties while I was sleeping. He wanted me to go see him asap. I was a bit scared but anxious to get to the next stage. I went to see him the next day, and he told me that the next meds(Beta Pace) would require me to be in the hospital for about a week or so because of the possible side-effects.

I did the hospital stay with the new meds and had no symptoms the first 3 days at all. I was in sinus rythem the entire time with the only drawback being a slow heart rate. After 3 days, they wanted to see if decreasing the dosage would increase the heart-rate and keep me in sinus rythem. Well they tried from 160mg to 80 mg. It kept me in sinus rythem and the increase in heart rate was minimal. The 2nd day on the 80mg, while talking with my brother during visiting hours, my heart rate went from 50 to 165 bpm within a few seconds. It lasted about 10 min. . Immediately, I was put on blood thinner and my dosage was increased to 160mg. I went back into sinus rythem.
Since the new meds, (only about 2 weeks) I've had pvc's 20-30x and a-fib about 2-5x daily. The real set-back is that I've been getting dizzy spells and light-headed through out the day. My work is driving and I've been out of work for about 2 weeks. Now I'm waiting for an event recorder to determin what's my heart doing while I'm feeling dizzy.

[Sandra L.]

Good luck! I think a fib can happen at any age, it's notoriously difficult to reverse. I believe there are surgical options for severe, refractory cases.
I am waiting to find out if I have a fib too. For many months now I have suffered dizzy spells associated with irregular heart rate, with a history of premature contractions. It's driving me nuts too. Cardiologists were not very interested in my situation due to my age (in teens when it began) but now are suggesting a fib, and are making me retest since the holter I just had didn't make sense to them, they were quite worried about something but wouldn't say what except it was very difficult to interpret it, definate severe arrhythmias. No wonder with how bad I've felt, basically intolerant to exercise for two years now.

I'd had this all ascribed to inner ear for years. Always knew it was cardiac, because of chest sensations.

When you have your episodes, have you ever had the feeling that something big buzzes through your chest, like a hummingbird? I know this sounds weird, but that's what I feel like! Followed by dizziness and irregular pulse. Sometimes heart is fast, sometimes slow, sometimes irregular, sometimes regular but oddly varying in strenght.

Hopefully you will find better meds, or maybe if it gets very bad you can have these surgical treatments, where they make little cuts in part of your heart? Can someone elaborate?