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Arrythmia's 1 year post-ablation
Hello everyone. I'm new to this forum, but I was hoping I could get some insight from people who might be going through something similar. A bit of backstory......for YEARS, I was told I have anxiety because I'd all of a sudden get a fast heart rate - which Doctor's told me were just panic attacks. I found out later, it was actually SVT - which I'd experience once every 6 months, or so & could always get myself out of, by doing a valsalva maneuver.
Fast forward to almost 2 years ago, I ended up in ER with a bad episode of SVT (which I couldn't get myself out of). Long story short, I ended up getting a cardiac ablation done last year, in September (for what I now know was AVNRT). My Electrophysiologist told me I was at risk of a-fib - because I had gone into that rhythm during the ablation & it was difficult to get me out of it. He also told me he had to get quite aggressive with the ablation & that I likely wouldn't be a candidate for a repeat of the procedure, since I'd likely end up pacemaker dependant (I'm only 36 years old).
Healing from the ablation over the past year, I ended up with a chronic condition (a type of Dysautonomia) called "inappropriate sinus tachycardia", or IST for short- where my heart rate spikes for no obvious reason (not the same as the SVT I had previously). I ended up having to stay on a calcium channel blocker (240mg Diltiazem daily).
Since the ablation, I'd get the odd PVC here & there, but no more than 5 per day (but not always occuring daily) - espeically in the 6 months just after the procedure. Fast forward to 4 days ago & all of a sudden, I'm getting a sudden increase of PVC's....constant & all day long. I counted them for an hour today & just in that timeframe, there were over 100. The most frustrating part, is that I cannot account for any changes to my routine (no sleep disruptions, stress, alcohol, drugs, no increase in caffiene). None of the common triggers. I ended up going to ER yesterday, so they could try to capture them on ECG, to forward to my Cardiologist. They basically told me the PVC's aren't serious & that they're usually not treated.
I'm wondering if there's anyone else who gets PVC's all day/every day & if you were able to find a Cardiologist who took them seriously? It's easy for Health Professionals to say "just ignore them"....when it feels like a giant fish is flopping around in your chest all day long. I cannot focus on anything else when it's happening. Not to mention, it makes me feel very lightheaded/dizzy & tired. I'm 36 years old, with 2 small kids at home.....I don't want to feel like this for the rest of my life.
(if you've made it this far into my story....thank you for taking the time to read it). TIA for any responses.
AHAModerator, March 25, 2021 5:05pm EST
Thank you for joining the support network and for sharing your story. I'm sorry you're going through all of this and wish you the best.
As you hear from others on the Support Network about their experience, I want to remind you that you are not alone and hope that you can find a sense of community and support here. In the meantime here are some resources on Symptoms, Diagnosis, and Monitoring of Arrhythmia.
Please keep us updated on how you're doing.
jzalesky, March 26, 2021 4:38pm EST
Hey sorry to hear about your issues. I have had ablation last year as well in Aug time frame. I have SVT and Vtach issues beforehand causing me to pass out without notice at the good age of 40. Since ablation I have a lot of PVC/PAC's which drive me nuts some days. I have learned to live with it so my anxiety has calmed down alot in the last year. However I go usually with less than 15 a day that I notice most days but then for some random reason I will have a week where its bad and have a ton. As for my main issue I still have a slow form of SVT or AT I guess that is short lived every few days or so. They put me on propafenone(sp?) twice a day to help keep it down and will do ablation again down the road if needed. However as my doc says if you start to have something that is not normal or the usual then its time to come back and get checked out. I have a heart monitor implant as well so that helps them keep tabs on things that I can trigger when I get an episode. Might ask for something like that as well since it allows them to see it and gives you peace of mind to what it is and if its harmful. Easy procedure that you are awake for like a pacemaker. But as for the PVC's/PACS they are not concerned(my doctors) unless its more than 10 percent of my daily beats everyday it seems. And even then its just concern for weakening of the heart causing heart failure which I had from some medication(Humira) which started all this. They just drive you insane so I can totally relate. -Jason
MaryRose, March 27, 2021 4:13pm EST
I am glad to be able to see what symptoms other people are experiencing after ablation. I had an ablation for PAT (Paroxysmal Atrial Tachycardia) in Dec. 2018. All was good until Nov. 2019 when I started to have very frequent PACs. I felt weak, anxious and physically ill like the flu from the PACs. I had a holter monitor which showed PACs 28% of the time. My medication was adjusted from Toprol XL 50 mg. to Toprol XL 100 mg. and the PACs became less frequent and more tolerable. Checkup in Sept. 2020 my EKG showed frequent PACs but I was able to deal with this. My cardiologist offered me flecainide or suggested a possible ablation if needed. I was coping so I did not feel I needed any changes to my medication. Then in Dec. 2020 I started to have very frequent PACs and felt ill, difficulty sleeping at night due to constant pounding heartbeats at night.. I did contact the cardiologist and took him up on the flecainide for about 5-6 weeks and went in for another EKG one week after starting flecainide which showed frequent PACs.. I continued with the flecainide and dose change of Toprol XL to 50 mg. for approx. another 4 weeks without much change in my arrythmia and my EKG still showing frequent PACs. My cardiologist suggested an ablation since my PACs were plentiful and very symptomatic. I Agreed to an EP Study/possible ablation. Unfortunately I just ended up with an EP Study only because my PACs were too infrequent during the procedure so the mapping was insuffient to ablate the area in the right atrial septum. As soon as I hit the recovery area I was once again having very frequent PACs every second or third beat. Needless to say I was very disappointed that an ablation was not possible and I am still having frequent PACs and occ. PVC. I am now taking Propafenone 225mg. SR twice a day for the last week which seems to help during the day but not much at night. It is difficult to sleep at night for long periods of time and I was wondering how anyone else copes with this issue? I am very frustrated with the uncertainty of what will happen in the future from this arrythmia and where do I go from here. I am sure I am not alone. I know you don't die from infrequent PACs but frequent PACs can lead to stroke, atrial fibrillation and heart failure. My followup in a month is with the PA and not the cardiologist so I will see what he has to say. (I would prefer to see the EP cardiologist but this office sends you to the PA or the ARNP for followup.)
DWaddell, March 29, 2021 11:28am EST
Thank you so much for the replies!
Jason - what is the type of cardiac monitor implant you have? My EP mentioned potentially hooking up the Zio monitor (an external monitor I can wear for up to 2 weeks), if I was having continued issues. Are you concerned about the potential for heart failure? I'm glad to hear they put you on some medication to ward it off. Heart failure is not something I want to happen....especially being so young - it sounds like you can relate. It's hard not to feel anxious about it all. Are you an active person? Are you able to do a lof of physical activity? I used to be a long distance runner before all of this started. I've tried re-training myself over the past few years, but my endurance doesn't seem to want to recover. Wishing you the best of luck & thanks again for the reply.
Mary - I'm sorry you're also going through this. I hope the PA can give you some insight/options for treatment. It sucks when you're on the table during an ablation & they can't see what they need to do the procedure. I wish I had some suggestions for you on how to get sleep. :( The PACs/PVCs are super distracting. It's hard to focus on anything else - at least that's what I've found. Maybe they can change up your medications, so you have some relief?
I'm 1 week into the frequent PVC's now. My blood work from the ER visit was totally normal (no signs of anything obvious that would be causing the PVC's). They seem to resolve when I sit or lay down for 10+ minutes, but flare up again (happening every 3rd or 4th beat) with any type of activity. I put a call into my EP last week, but haven't heard back from him yet. I'm hoping he decides to give me the Zio heart monitor he talked about before, so he can see what's going on. The ER Doc put me on a waitlist for a 24 hour holter monitor as well. I'd just like to know why the sudden increase in PVC's (literally overnight) and be able to get on some medications so I can have some quality of life. I'd also like to know if this is something I should be watching for in my 2 kids. I'd hate for them to have to go through this as well, if it's a genetic thing. Lastly, I want to be able to be active like I used to be. I miss having the energy to run, or go on a long hike with my family. I just don't have the energy for it anymore, when I'm feeling like this.
jzalesky, March 29, 2021 4:17pm EST
I have had a few ZIO patches and they just are taped on your upper left chest area and last 2 weeks and then you put it in the mail to be reviewed. Very easy to do vs a 12 lead device. I now have what is called a loop recorder that is under the skin on my left pectoral area. It has a device that sits on my night stand that at 1 am every night sends a report in through the cell networks. It last 3 years. I also has a remote that is on my keychain that I can click when i feel an episode so that it records and saves it for the doctors to look at.
As for the heart failure mine is being controled so far. I did not have anything major just EF at 45 which they would like it above 55. This was all due to the drug Humira that I was given for my Ulcerative Colitis they believe. As for the other issues they are not 100 percent sure what caused them to start but I think its all linked together. I was very active up until about 2016. Its something that I am working to get back in order. I honestly think you should keep trying to stay active and in shape if the doctor is ok with it. Because overall is less stress on the body and more healthy for your heart.
As for the PVC's I get prob about 20 to 100 per day that I notice or feel. I have learned not to freakout about them like I used to so my anxiety is way down compared to a year or two ago. However with that said I do have weeks that they get bad and for me laying down trigers it sometimes. Soon as i sit up they stop lol. The doctors were able to catch it one time at the ER and were scratching their heads. I honestly think it has something to do with nerves but who knows. As for you getting heart failure my doctors ensure me that it would need to be constant and over 20 percent of your daily heart beats to have the possability of weaking the heart. The good news is that this type of heart failure for what they tell me can be reversed if they can stop the PVC's.
I feel your pain its very scary for sure and keep bugging them until you get he answers you are looking for. It took a long time for me to trust them and realise I am not dying everytime I get an episode. Also places like this and being able to talk to others going through same thing helped me get past my anxiety as well.
MaryRose, March 29, 2021 9:03pm EST
DWaddell- Thanks for listening and for your reply. I understand how you feel. Arrythmias and/or meds to treat them can leave you feeling tired. I try to be active, bike ride on level terrain and walk/hike when I am feeling like it on a good day. If your doctor approves I agree with Jzalesky that activity does help to keep your mind off of your cardiac problem and for me sometimes stop the arrythmia for a short time. I too try to figure out what triggers more arrythmias-activity, food, etc.or if it is even a factor. It is a guessing game-I haven't had caffeine in 3 years so I know that is not the cause and no alcohol ever because it triggers arrythmias. Even changing position in bed or getting up at night can really trigger more PACs for me. I am a fairly healthy 65 year old recently retired nurse with a BMI of 24 so I am otherwise in good shape. Keep asking questions and if you feel comfortable try medications your EP might suggest knowing it might be trial and error to find one that works for you. I am talking with the nurse navigator in my EP office since the EP Study 1 1/2 weeks ago. She called to ask me how I was doing 4 days after the procedure and about my new medication (Propafenone aka Rythmol). (Ask your EP's office if they have a nurse navigator). I told her about my issues and she actually followed up with me today and is going to call back in a few days. She is relaying my concerns to my EP. I am glad to have found this site and hope you find out what is going on and appropriate treatment to alleviate your symptoms. Hope to hear you get some answers. Take care.
Fergus, March 31, 2021 9:08pm EST
Well here I sit with tears rolling down my cheeks. I feel as though I have finally found a group of people who understand what I am going through!!! Jason almost everything that you said resonated for me!!!! DWaddell I am so sorry that you are enduring this as you are raising little ones. Mary Rose I appreciate you sharing your experiences and fears too! My irregular heartbeats started about three or four years ago. I was undergoing lots of stress because - ya'll know - life happens. Somehow in all of that my body was keeping score even though I wasn't and the PACs and PVC's started. I loved DWaddell's description - it is indeed difficult to sleep or relax when it feels like a fish is flopping around in your chest! Like the rest of you - I too have been an active person and about the only time that I don't feel the irregular heart beats is when I am active. However, when you don't get much sleep (right Jason - because they are worse when you are lying down!!!) then I sometimes find it hard to work up the energy or courage to exercise. I saw a cardiologist (7 hour drive away) and she started me on bisoprolol. It made me really tired and I was starting to show signs of second degree block so she stopped that after about a year and a half. Like Jason, I wondered how much of it was nerves and have asked the Dr. to please tell me if what I am experiencing is panic attacks because then I can move forward but four years later they are still trying to rule out other things. I see a new cardilogist April 9th. I average 5 PACs /minute and a PVC every two or three minutes. It is a tough way to live. I just turned 62 and recently retired as a kindergarten teacher but like one of you mentioned I seem to feel every PVC (my Dr. has assured me of the many, many patients he has had over the years with an irregular heartbeat, I am the ONLY one who can feel them). Like Jason, I have learned to handle them bettter in the last year. Before that I wondered almost every day if I was having a heart attack. This was a big change for an active, outgoing lady with everything to live for. The last thing that I will add is that I have a considerable amount of chest pain - mostly where I think my heart is. I have had an angiogram (looks good) and enough ECHOs and holters to do me for awhile. It just seems to be some dumb electrical problem. I wondered if ablation might solve my problem but with you dear people, it sounds like if anything - your PACs and PVCs are worse after ablation. Am I right? Also, I have had a few friends go through ablation and it sounds VERY DAUNTING. I have given birth five times but ablation sounds terrifying. Thanks for the listeneing ear. Blessings on each of you. Thanks for your transparency and encouragement.