Anyone had bigemminy/trigemminy for years straight?

[fxmom]

Hi everyone,
It's been a long while since I've posted. I suffer from continuous PVC's. Always have. It was discovered in my late teens and has gotten progressively worse over the years (I am 48). For the past few years I have been in continuous tri & bigemminy. At first I was told they are benign and just get used to them. Then as they wouldn't go away I was told it was due to caffeine so I cut that out. I've never smoked and don't drink either. Then they told me it was stress. A year ago it was discovered I had thyroiditis and thyroid cancer so they were sure my PVC's, fatigue, blackouts would clear up once my thyroid was out and I was regulated on synthroid. Well, here I am a year later and nothing has changed. My new EP said my PVC's aren't related to my thyroid problem and suggested I try high dose of magnesium for the past three weeks (500 mg three times per day). There's been maybe a small change, but I'm still getting over 22,000 PVC's/day (on a good day).  My EP is leaning toward ablation and maybe screening for ARVD.  
Guess I'm looking for input from those  of you that have had high number chronic PVC's for years. I can honestly say that for the past few years I've really gone downhill. Just walking up the steps puts me out of breath and I used to be a fitness trainer. I'm scared for where this might be going. If I have the ablation and the PVC's slow down or stop, will this breathlessness/dizziness subside? It's weird, I am so used to the PVC's that I hardly feel them I only know I'm having them now because I will get dizzy or realize I'm struggling to breathe. My thyroid surgeon doesn't believe my PVC's were due to stress because they were bad during my thyroidectomy and I was completely knocked out. My surgery had to be done on an incline to control them. Are high number PVC patients just dealt with as we progress into something bad that's "treatable" or what can we do to be proactive? I feel like I've done everything I can on my end and I'm frustrated. Any ideas/advice/personal stories of what helped others are appreciated.

[fxmom]

Been trying to post, but had log in problems with this site. Went for my follow up on 7/18. Dr wants to move forward with ablation. (Nervous and relieved at same time). Had an echo done and they said everything looked good and they think ablation will be a good choice for me because heart seems healthy and pvc's are presenting as unifocal and in the RVOT. It will take about a month to get in for the procedure.
Dr. told me the procedure is about 3-4 hrs and that I need to be awake, but I guess they'll  give me something for nerves? He said it might end up bothering my back more than anything else (I have spondylolisthesis).  Great! I hadn't thought of that!, lol  So now just trying to psyche myself up for the procedure and secretly wishing the darn pvc's would just stop on their own! lol. AS IF ..

[fxmom]

Wow, you are really high load pvc too! Gosh, I hope you get some relief soon. I know what you mean about stress. I have special needs children and my stress is 24/7 and has been for many years. I don't doubt that it has contributed to my pvcs. I wonder if my dr will try meds or not. I guess my concern with the meds is that my heart rate/bp tend to be slow/low. Will meds aggravate this?
Thank you for the magnesium info I will try the mag taurate. I'll try anything! lol. I do take coq10 every day. I think it helps too.

My EP said my pvcs are unifocal and from the RVOT. He said if we go to ablation he feels strongly it would be successful. He said he may want to rule out ARVC because my father and his father both died from sudden cardiac arrest at 67 y.o. with no other cardiac events previously. I have an older brother with Afib that has landed him in the hospital a few times. He's been through cardioversions and 2 ablations so far. He's about to schedule the 3rd.

Thanks for the article link. I'm going to check it out. I see my EP on 7/18. I'll update as to what he recommends and look into a second opinion too. Please keep me updated on how you are doing as well!

[fxmom]

I let the drs office know that the mag was having laxative effect even at half the prescribed dose. I'm torn here My dr is an experienced EP/surgeon, so on one hand he's either booked out with patients, in surgery or on vacation so it's hard to get appts., but on the other hand, there's almost a comfort in that knowing that he's a good dr.  :)

[Inquiringmind41]

I'm sorry to hear about what you are going through.  I can totally relate!  My most recent holter monitor 3 weeks ago showed just over 32,000 PVCs.  I too just had them occasionally in my teen years.  I'm 41 now and for the last 4 years they have increased.  I seem to cycle with them where they will taper off somewhat for a few months and then I have a flare up or something.  I have pretty much been in bigeminy a good portion of the time for about 7-8 weeks now.  I have been through a huge amount of stress this year and I am wondering if that is why they have been so bad.  The stress has tapered off, but the PVCs have continued, but the effects of stress can last for a long time.  Also, as michellepetkus says, acid reflux definitely can play a role.  Sometimes I wonder if all of the H2 antagonists I have taken have completely depleted my magnesium and just made the problem worse.  

Certainly, get a second opinion from a reputable electrocardiologist who does ablations all the time and not someone who is inexperienced!  This is your heart and you don't want to mess around!  I have an appointment in August with one of the best electrocardiologists in Boston.  If I don't see some relief by then, I will consider ablation.  I tried metropolol which made me feel horrible.  Now I am on a low dose of propanolol, which has much less side effects for me, but doesn't seem to do much for the PVCs.  It quells them for about 6 hours and then they start up again not necessarily taking them completely away, but lessening their intensity, but at least my heart rate is slower and I am a little more relaxed.  Has your doctor told you if your PVCs are unifocal or multifocal?  That makes a difference in how easy they are to ablate.

On a side note to the magnesium, that is a huge dose you are on!  Also, there are several different types of magnesium and they are not all absorbed the same way.  As a rule, if it produces a laxative effect, you are either taking too much or it is the wrong form for you and you are not absorbing it.  

Have you tried magnesium taurate?  That was what was recommended to me.  It contains taurine, an amino acid, which sometimes helps with the heart.  Also, CoQ10 is another supplement you could try!  Personally the CoQ10 works better for me than the magnesium, but I still take magnesium.  

Here is a link to a great article that addresses supplements for arrhythmias and definitely worth the read.    

http://www.dearpharmacist.com/2011/04/19/cardiac-arrhythmias-may-be-caused-by-nutritional-deficiencies/

Please let us know how you make out!  

[MichelleP_3811]

I know it can be frustrating trying to get things sorted out.  Doctors have a tendency to want to try a few simple fixes first before they do anything drastic.  Especially in terms of ablations for pvcs as they are a bit more complicated than an ablation for svt.  That said, if you try something the doctor suggests and get poor results there is nothing wrong with contacting the doctor to tell them the issues you are having.  It is not good to be taking something that reacts like a laxative.  This isn't healthy for you in the long run so it seems to me that you may have reached your limit your body can handle for magnesium. Let the doctor know this right away and see what they have to say.  You can also refuse to continue with such a high dose especially if you know in your heart it is causing more harm than good.  I would find out though if it is something you need to wean off of.  I am not sure with supplements but I know most meds it is best you wean off but contact the doctor and get their advice. When it comes to your healthy think of your relationship with your doctor as more of a partnership then it being one sided.  You are both trying to reach the same goal of alleviating your situation, your doctor has a lot of knowledge to share but your part is to speak up when things are not working as well as they should or especially when unwanted results happen.  Hang in there and just remember with every step you take you are working towards resolution.  Take care.

[fxmom]

Hi, wanted to send an update on me, and a bit of a vent.

After going a round of 1500mgs of magnesium per day for 3 weeks and doing the 24 hr holter plus bloodwork, my EP said my pvc load went from 24000/day to 20000/day and metabolic bloodwork panel looked good. Of course it took 2 weeks of calling after I didn't hear back from them for me to get this info as EP was on vacation then "very busy with surgeries".  SOOO, he finally calls me and says he's decided to up my magnesium to 3000 mgs per day for 4 more weeks and then test again.

Well I'm thru week 1 and this much magnesium is ridiculous. I get up to 2000mgs and it's like I've taken a strong laxative. Not a good way to live my life, plus I don't know that the PVC difference in the first place was necessarily due to the magnesium. I may have just been having a really good day. Right now even with all this supplement I'm still in constant tri or bigeminy and getting frustrated with the shortness of breath/dizziness, etc.

I'm not scheduled to go back to the EP until July 18.  I'm frustrated. Although this EP is supposed to be very good and specializes in ablations, I'm not sure he's the best dr for my situation. Thinking to check out Mayo or Cleveland Clinic.
Thanks for listening.

[RVVq]

fxmom

Considering your family history of sudden cardiac death I think that it would be very important for you to get a delayed enhancement (DE) MRI. This technique would rule out ARVD, Hypertrophic Cardiomyopathy and myocarditis - which can all cause frequent PVCs and sudden cardiac arrest. If your heart is found to be structurally normal, than you and your EP can focus on ruling out malignant channelopathies. There are drugs that can be used to provoke concealed Brugada and Long QT syndromes. Also there are genetic tests available, but they are not perfect either.

If nothing significant is found, it still does not mean that your condition is benign and that you have a low risk of sudden cardiac arrest. You should consider getting ablation sooner rather then later, because the astronomically high PVCs load you are experiencing can cause heart muscle damage. Again, if you have the opportunity, you should contact a large academic center that specializes in cardiac arrhythmias and inherited arrhythmia syndromes (due to your problematic family history). They would be well equipped to deal with your complex case.

Good luck with your treatment plan! Please keep us updated.

[fxmom]

Wow, thanks for the info. Really puts things into perspective. My EP did say we might be doing a cardiac MRI (is DE MRI different?). He said my family history has red flags. My father died at 67 yrs old from a heart attack (his first) and his father died at 67 yrs old the same way. I had 2 cousins on my mom's side (her sister's kids) die in their sleep in their mid 30's, both healthy/active. My mom and my brother both have Afib, my brother has spent time in ICU for tachycardia that was very difficult to control and has had 2 ablations. So both sides of the family have issues.

Yes, I think if I'm looking toward ablation I should do my homework to ensure I'm in the right place with the right doctors. I just returned my most recent 24hr holter monitor and did bloodwork to check my magnesium & metabolic levels. I will talk with the doctor next week to discuss what the next step will be and will post to update.

This is a great forum. It's one thing to talk to a doctor who has experience with arrhythmias, it's another to be able to talk with people who have experienced them. Both are equally valuable in my opinion.

[fxmom]

Thanks for your response. My EP basically said the same thing, that with such a high load over a long period of time I might do best with an ablation.  To answer your question, I haven't trained or really exerted myself in probably 5 years or so. Before that, for many years, I was pretty athletic. I have been a professional dancer/choreographer, I've taught aerobics and weight training and I myself worked out daily. My heart really started giving me problems after I had my kids and I guess I just wrote it off as stress, but I'm realizing now that this is more than that. Progressively over the years I've gone from being very active to not being able to walk up a flight of stairs without having to sit down. I just finished another 24hr holter monitor and blood work to see if the magnesium has helped. I will be talking to my doctor next week to figure out where he wants to proceed from there. I'll keep you posted.

[RVVq]

Reference:

1) Adabag, A. Selcuk, et al. "Occurrence and frequency of arrhythmias in hypertrophic cardiomyopathy in relation to delayed enhancement on cardiovascular magnetic resonance." Journal of the American College of Cardiology 51.14 (2008): 1369-1374.

[RVVq]

fxmom

I do not think that a person with 22,000 pvc/day should be preoccupied at looking at any lifestyle factors that could have contributed to having such a high arrhythmia burden. To put things into perspective, majority of people who have had major heart attacks have less then 1000 pvc/day (its hard to believe, buts its a fact). Majority of people with heart failure, hypertrophic cardiomyopathy and uncontrolled hypertension have less then 1000 PVCs per day as well. Majority of long-term severe cocaine and heroine abusers have less then 500 PVC/day.

For example, a Holter study done on 177 patients with Hypertrophic Dialated Cardiomyopathy found that 77% of them had at least one PVC/day. The highest PVC burden recorded in that group was 4,800 PVCs/day and the mean number of PVC/day was only 189 (1). What that means is that vast majority of people who have severe heart disease do not experience frequent ventricular ectopic beats. In fact, overwhelming majority of people who have heart disease have relatively infrequent PVCs which are completely asymptomatic.

Then there's us. People who have no evidence of heart disease and yet experience astronomically high number of PVC that are highly symptomatic. Some patients and even ignorant doctors might blame stress or anxiety for causing such a high PVC burden. But how can stress cause more PVCs than a heart attack or myocardial disarray associated with HDCM? What about people who have had a major heart attack - are they not stressed out or live in constant fear of death? Yet, they have less PVCs then a lot of people on this board....

My point is that people who have very frequent PVCs are likely to have some congenital or developmental abnormality that is responsible for such a high PVC burden. In a subset of patients, PVCs are caused by hyperactivity of one or several nerves that innervate the ventricles. In others, it could be a localized somatic cell mutation. Sometimes, the heart cells don't form properly and their membranes might leak calcium.

Frequent PVCs are not a lifestyle disease and I believe that patients should not be preoccupied with finding a home remedy or real cause for their PVCs. If your PVCs do not respond to medical therapy, I believe that you should proceed to ablation.

fxmom, in your case I think it would be a good idea to get a cardiac DE-MRI, if you didn't already get one. If that proves to be normal, I believe that you should proceed to ablation. It is important to get it done at a center that is experienced at PVC ablations and has all the necessary tools needed to get the job done. Non-contact mapping system and remote magnetic navigation (Stereotaxis) are particularly useful in PVC ablations. Places like the Cleavland Clinic and Mayo would be good choices. Your local EP that only did 5 PVC ablations in his life would not be a good choice.

Good luck and keep us updated!

[MichelleP_3811]

I don't have that high load of ectopics as you have but if they are able to successfully ablate your issue I do think your heart could recover.  It may take a while.  I had svt all my life and got it ablated about 2 years ago but it took a good year and a half for my heart to feel normal again.  But if you are struggling now you may want to consider trying an ablation to protect the long term health of your heart.  Isolate pvcs are harmless but you seem to have a very high load for a very long time so it might be worth considering.  It is a tougher ablation than most with not as good long term results but if you have tried everything to stop your pvcs and nothing is working then it may be your best option.  The  one thing I will say is you say you were a physical trainer.  I would think that entails a lot of cardiovascular output.  How long have you not been doing it?  Were you extremely active when you were younger when this all started?  It is possible you were stressing out your heart and it will all settle down given some long term rest but if you haven't been a trainer for years then you have likely given your heart enough of a rest to recover.  The only other thing I might suggest investigating if you haven't already is to address any stomach issues like acid reflux.  Those can aggravate the vagus nerve and cause more ectopic beats.  It does sound as though you likely have exhausted every possible trigger and it just may be there is some dynamic with your heart that is causing the ectopics to get stuck much like svt.  The ablation I would think would correct this but it is a very big decision so I always suggest to people to follow the path that gives you the most peace.  One option will feel more right than the other so follow the one that feels the best.  If I personally feel agitated over a choice I try my best to avoid it unless I just can't but the point being follow your gut and you can't go wrong.  I do wish you the best getting this resolved so you can getting your life back.  Please keep us posted on how you are doing.