continued arrhythmia treatment any other options?

[Bill D]

I am a 52 year old male with lifelong history of palpitations and pvc's. Four years ago pvc's increased in frequency and I had some other arrhythmia symptoms (flip-flop thuds long pauses etc.)including near syncope. Had echo, signal avg. ekg.,  stress echo, all normal. Wore event monitor 1 month revealed pvc's w/ bigeminy, trigeminy, multiform, uniform etc. and a few episodes of nsvt and 1 of unidentified type probably 8 beat nsvt. Consequentially I had a spiral CAT scan and cardiac MRI (CCF) to rule out ARVD. All tests normal. For the past year symptoms increased PVC's of 100-400/24 hours. Occaisionally with 3 or 4 second pauses after (no pulse felt).
Sought treatment at Deborah(local) and had thallium stress and tilt table. Thallium normal, tilt positive (passed out). Frequency of symptoms has created extreme hardship both at work and home. Cant wear event monitors as I developed severe allergy to pads. Latest option given is Norpace or pacemaker. EP here does not think EP study will help doc says heart normal with conduction or nervous system problem. Scared of the Norpace because of toxicity and don't know if I can wear pacemaker as my job involves inspecting food processing plants where there are alot of large electric motors etc. I am really getting to the point where I just don't care anymore but still hope for some workable acceptable alternative. Any suggestions or direction wouild be appreciated.

[CCF-M.D.-RCJ]

Bill D,

Thanks for the post.

If I read your post right, it sounds as if you began to experience significant symptoms from PVCs approximately 4 years ago, and these symptoms increased approximately 1 year ago.  Because of the increase in symptoms, you underwent a thallium and tilt table test.  The tilt table test was notable for you passing out.

I have several thoughts:
(1) As an aside, the "pauses" you experience after the PVCs are likely not really pauses at all.  The heart incompletely fills after a PVC, thus ejecting a low volume pulse which frequently cannot be felt.

(2) 100 - 400 PVC per 24 hours is at most 15 - 20 PVC per hour, or 1 every 3-4 minutes.  You can be reassured that this number of PVCs is not dangerous.  However, some people find them very distressing.  Som people find benefit from coping techniques, such as Tai Chi, yoga, anxiety management therapy or biofeedback techniques.  Beta-blockers, such as metoprolol or atenolol are also helpful for some.

(3) Many patients pass out with tilt table testing who are perfectly normal.  So an isolated "positive" tilt table test is not too concerning.  I didn't read in your post that passing out was a major part of the problem -- if it is then it is likely unrelated to the PVCs unless VT was seen during the tilt, which is unlikely given the fact that you did not mention anything about having a defibrillator.

(4) Finally, if your EP thinks that you indeed have pauses and need a pacemaker, then discuss your work environment with him/her.  Most people can work around electric motors without difficulty.

Hope that helps.

[Linda123]

Really sorry to hear of your troubles Bill, and sorry to hear an EP study has been advised against as in my case it did show up the problem - every other non-invastive test I had showed up normal which whilst I suppose good news really leaves you wondering what on earth to do when your symptoms are intolerable as mine are.  Have you been examined at one of the big Heart centres - maybe the Cleveland could help you.  Go for a second opinion.
Good luck.
Best Wishes, Linda

[Emmaj]

Hi Bill, This doesn't address any of the big issues, but I also had a terrible reaction to the pads used for a one-month event monitor. The company then sent me pads that are used for infants (I'm only 49, after all), and I started the test over. This time it went great, no allergic reaction at all. Presyncope is scary -I had that too, due to SV tachy, but no longer, thanks to Toprol. Good luck!

[Bill D]

Thanks for the input. Believe me I would not post im this forum if I had not run the gamut of tests and beta blockers etc. etc. I can't take the betas because of an already slow heart rate and asthma. I don't think most people can appreciate the frustration and anxiety of living with significant symptoms and I can't believe that four second pauses in pulse with near syncope are considered "normal". If it was just the pvc's I could deal with it. After a life time of dealing with this thing I am totally frustrated.

[Ianna]

Hi Bill,
-
Yes, I know, I have the same problem.
Not that often.
But the 4 to 5 sec. pauses are HORRIBLE.
And there are NO BEATS in between.
Just one fluttery one and then the pause...
I hate them too. Feels like you are going to die...
...Anxiety...
And they can start out of nowhere, just when you feel ok.
So that's frustrating too.
-
My doc says the heart is one moment out of rhythm and will not stop completely (lucky us), it will ALWAYS start again.
But then you know that of course, as I do, cause we both still are here....;-)
-
Stay well - *Ria* -     >and the beat goes on<

[Bill D]

Thanks for the positive thoughts. Along with every description of pvc I have had some brief vt tracings and every once in a great while some 15 or 20 second runs of something that I have yet to record. These are the scary things. PVC's alone I can take but the rest is really getting to me. But you are right, so far I am still here. thanks for listening.

Bill D

[Rosemary44]

I was reading on the John Hopkins site about a fast imaging machine that seems to be a fairly new invention.  (Within the last couple of years?).

The problem is I can't find the news release on their site now.

From my memory:  this machine can take an image of the heart and catch the moves it makes while beating.  I don't remember much more, as to who would need this type of test.  Meaning is it strictly used for racing hearts or can the  test be used for other type of palpitations?

I'll keep searching for the info on the John Hopkins site.

To my thinking having a simple imaging test done would go a long way to ease the mind of people who are suffering from these debilating palpitaions.    

[jkf]

I agree about those long pauses.  They are the worst.  I always feel like a wierd flutter then nothing.  I reach for my wrist and can't feel a pulse.  I know it lasts about 3-4 seconds.  I start to feel like I might black out then it starts beating really fast for about 20 seconds then back to normal.  I actually never have blacked out from it.  Fortunately this type only happens about twice a year, however because it is so infrequent my doctor doesn't feel the need for an ep study. So I still really don't know what it is.  I hate that pause!

[VALERIA]

I have been coming to this forum for the last three years or so. I haven't posted in a long time, but I came back to the forum today and was reading your post, and that is the EXACT same scary sympton I have been experiencing since around 1996.

I have posted about all my arrythmias and that one arrythmia, like yours, in the past, but I have never found anyone who experiences the same thing.

My problems started back in Oct, 1993. My heart started beating fast that day, finally slowed down, but each day, especially in the A.M. and after meals, it would take off. This went on for years, never saw anyone, till Feb. 1998, this day it wouldn't slow down, getting up and walking a few steps, and my heart would fly. Then this day besides the racing which is all I ever felt, I started to feel like thuds or skips or extra or missed beats, went to E.R. then followed cardiologist, had blood tests,cardiograms, echo, event and holter monitor, still really know nothing. Then one day I felt my heart flutter, then nothing or beating real slow or out of whack, I always seem to fell my wrist when this starts, and It is hard to feel it, I have to cough, and do something with a quick motion, like walk fast or jump, mean while I sometimes start to fell woozy, but never so far passed out,then it starts to beat super fast, then goes back down to the normal rate, and the event is over. Then sometimes at the end I get a hot flash, and a hot feeling in my face. This sympton no matter how long I been getting this, it always scares the hek out of me, you feel like your heart won't go back to normal, and it probably is only a few seconds, feels much longer. The racing, and weird beats I almost am used to, but not this thing. I take Toprol about 150mg a day has helped alot, but still feel symptons.

Sorry for the long post.
Val.

[jkf]

Thanks for your post.  Those are the skips that make me the craziest too.  And it is just like you say.  I fell a flutter, then nothing.  I don't feel a weak pulse, I feel nothing.  And it is at least for 3-4 seconds.  I start to feel like I'm fading out then boom, it beats very fast and irratic for a few seconds then it is all over.  My doctor thinks it is a-fib that the pause leads into.  He says most likely my heart is beating, I just can't feel it in my wrist. We can't catch it because it only happens about twice a year.  I don't know what a-fib is supposed to feel like.  I just know that when I counted it once it was 220 beats and very irregular.  It was going all over the place.  The wierd thing is that I don't feel all that bad when it happens.  I mean I don't feel faint or weak.  I've actually fixed it by getting up and walking around.  I just don't like the uncertainity of knowing when it will happen.  I fear traveling alone because of it.
JKF

[VALERIA]

I get this thing like yourself a couple times a year.
When it happens, no matter how long I have been getting this,it always scares me, and what makes it even more frightening, being it happens sporadically a couple times a year, that in itself makes it more frightening, because you never know when it may pop up again.
I too can feel fine right before this happens, to correct it, I cough, jump, walk fast, feel stupid when doing it, but it has always takes it out from whatever it is doing, and put it into a regular, but very fast rate, then it slows back down to the normal rate, then it's over.

I often wondered if hormones play a big part in this and my other arrythmias, because I noticed my fast heart rate and skips around certain times in the month, and this scary thing happens then as well.

Val.