AVNRT ablation: Hi my name is Darius... - Heart Rhythm Diso...

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AVNRT ablation

Lancelance profile image
16 Replies

Hi my name is Darius,first of all sorry for my bad english.in 6 june this year i had AVNRT ablation,after that my life was 100% worse than before.In first 2-3 months i had daily headpressure and fatigue,now my main problem is:Some nights right before i fall asleep i wake up with palps and hr around 100-120 that last 30-60 seconds.All my ecg are fine,did stress test with 0 pvc,and my holter show some Pacs(400)24/h.

All docs point this to anxiety.

I was perfect before my ablation,random svt atacks,maybe 5 from age of 16 to 23.

Now all day i think only about how bad i feel,random headpressure,pain in legs and arms,gerd,Insane fatigue,lightheadedness,my sleep pattern changed(i cant sleep more then 7H)

i was at GP after 1/3/5 months and he didn't give me any medication and suggest to exercise more and all this symptoms are in my head.

Please help!

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Lancelance profile image
Lancelance
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16 Replies
Nods profile image
Nods

Hi Darius

I can only speak from my experience but please give it time. I had an ablation for AVNRT in April 2016 and after a year of ups and downs my heart is getting over the irritation of being burnt!

Just try to get fit and try not to let worry and anxiety consume you.

Best wishes

Lee

Lancelance profile image
Lancelance in reply to Nods

Hi lee,im so afraid to exercise!after how long did u get in shape?

Nods profile image
Nods in reply to Lancelance

After the surgery I was literally in bed for two weeks. Felt really weak but slowly I recovered. I think it's different for everyone I was prescribed Ivabradine and diagnosed with inappropriate sinus tachycardia. The tablets didn't really work but know my heart seems to have settled down. I still get issues if I drink to much and lack of sleep

Jennbr profile image
Jennbr

Hi Darius

It is true that you could be suffering from anxiety. I had an ablation for SVT 6 months ago, and I have suffered terrible anxiety ever since. Terrible headaches, panicking over skipped heartbeats, burning pains in my chest. I’ve ended up in a&e twice with chest pain and been told that I am having panic attack’s.

It has taken me 6 months to get the courage to talk to my GP who agrees that I may have some sort of anxiety/PTSD. I have been referred for talking therapies and put on a very low dose of anxiety medication. I feel that I’m starting to feel a little better.

Ablation may be a straightforward procedure for those medical professionals carrying it out, but having your heart messed with whilst you are awake is a scary thing and you could well be suffering from anxiety.

If your GP thinks that it is in your head, then ask them to help you. Please don’t suffer in silence.

Doris2010 profile image
Doris2010

Hi Darius, I also had ablation for AVNRT in March, & like Jennbr have been diagnosed PTSD & anxiety 6months later! The brain is a powerful organ & I don’t think it can process what is happening logically because we are conscious through the procedure! I think if cardiologists told us it may take up to a year to recover (mentally/physically) no one would opt to have it done!

Take one day at a time that’s what I do now “baby steps” but I am back to running 3x a week thru the heart palps & chest twinges but each time I go I feel better after & no SVT in sight! Stay strong 💪😀

Piet profile image
Piet

Hi Darius - this thing you mentioned about your GP saying it's all in your head: have sympathy for your GP - western medicine is so limited. I would check out Transcendental Meditation. It fixes anxiety. There is tons of research on this benefit and many others. It certainly works for me. Western medicine is only one system. Its called Allopathy. There are other systems you should check out. Homeopathy, Naturopathy, Ayurveda.

Sameeeer profile image
Sameeeer

How r u now bro ..still feeling same or some improvement???.

Coz i am also having exactly same prblm as urs after my ablation.

3 months have been passed for my psvt rf ablation ,i have been facing so many prblms fast heart rate ,fatigue on walking ,pain in head legs .and before ablation i used to run 4-5 km daily .

Dont know what happen.someone plz help me out..

Lancelance profile image
Lancelance in reply to Sameeeer

Hi,well my heart rate is ok now(65-85) but i have daily ectopic.My problem is fatigue and lightheadedness.Give some time,ull feel batter but idk if we ever feel the same after this shitty intervention.

Sameeeer profile image
Sameeeer in reply to Lancelance

Thnx dear..will msg u after month..hope u also get well soon

FolkGirl123 profile image
FolkGirl123

Hi everyone, not sure if you’ll see this since it’s been a year since any posts but hoping someone may. I’m 2 months post ablation for AVNRT that was dormant most of the time and I never was on meds, but I lived with for 20+ years and was most prevalent during my pregnancy - which lead me to finally deciding to go through with ablation.

Since the ablation I’ve been experiencing tachycardia most nights of about 120 bpm during sleep which wakes me up, lasts for about 15-30 mins and then anxiety kicks in and keeps me up. Halter monitor caught 1 episode of this and they say it’s normal sinus tachy rhythm and not an arythmis. Went on anti-anxiety medication for a month to help me sleep and it seemed to subside or at least I slept through it. Now being off the anxiety meds for a few weeks it’s happening again. I’m worried it’s Inappropriate Sinus Tachycardia - something I never had in the past. Surgeon says ablation went fine. So I can’t tell if if it’s caused by anxiety or if it’s real and the reason I’m having anxiety. I’ll fall asleep calm and fine, then wake up to it and then anxiety kicks in.

Overall just worried I now have a new problem IST - one that I may have to be on meds for which I’ve never had to be on meds before. I’m a fairly holistic person so this upsets me greatly. Having thoughts like why did I do the ablation in the first place, I feel worse off now than ever before. Is anyone who’s experienced something similar feeling better now? How long did it take you?

MMermaid profile image
MMermaid in reply to FolkGirl123

I'm 3 months post my second ablation and I wish I never did this. I feel completely different and entirely worse off. I have SVT, diagnosed as a teenager, but it barely affected me until last year (I'm now in my 40s so almost 20 years passed with no real episodes). After a new SVT episode of 220bpm in December 2017 that required an ER visit and an adenosine treatment, my cardiologist doctor recommended an ablation to avoid being on medication. I had my first ablation in January 2017. Pre-ablation, I was VERY active. Runner my whole life and ran 8-min miles. Cardiovascular endurance that rivaled an athlete. Now, I can barely walk up the steps and I'm out of breath. I wake up and just making the bed gets my heart rate to 120.

I would have NEVER done this if I knew this is how I would feel. My general doctor also hinted at anxiety being the cause but I'm not buying it. I love how when you're a female and you have symptoms, they call out "anxiety". Sure, this process increased my stress levels and makes me worried. But I know my body and this is not an anxiety response. I wonder if I'm ever going to feel like myself again and have a normal, active life.

I've had a gamut of follow-up tests and scans and everything looks "normal". A few tachycardia episodes showed up my 30-day holter and a good number of PAC's and PVC's but nothing that alarmed the doctor.

I feel NOTHING like my old self pre-ablation. I can't believe I went through this TWICE and feel worse than when I started. It's affected every aspect of my life and I can no longer function how I did before all of this. All I kept hearing was how low-risk and low-complication it was... my bad for believing that. They are burning your heart and permanently altering it! I went to a highly regarded, reputable EP doctor, too.

Fatigue, chest pain, shortness of breath and weird heart beats is my new normal. It's been devastating to me as I did NOT feel any of that before the ablation. I'm heart broken, literally and figuratively.

All the best to everyone here... this is not a simple, low-risk procedure as it's marketed.

FolkGirl123 profile image
FolkGirl123 in reply to MMermaid

I’m so sorry to hear this. It’s such a confusing and incredibly frustrating experience. I too went to a very reputable EP and was told things from my general cardio doc like if I do this “you’ll never have to think about it again” “we’ll never have to see each other” - I’ve seen him more post-ablation than ever before. I too feel like why did I do this?! I was fine before managing my SVT on my own, very active and athletic. Regarding the anxiety in my case it is real but it’s hard to know if the anxiety is causing tachycardia or if my heart just is and then causing anxiety. Did you feel this same way after your first ablation?

I do wish you the best, thank you for sharing.

MMermaid profile image
MMermaid in reply to FolkGirl123

Hi FolkGirl123,

Thanks so much for your response! I appreciate your sharing your recent experience. Sorry to hear that you, too, have experienced a challenging time with all of this. I hope you are feeling better every day. This process is so isolating and I'm glad there are forums like this to support one another.

Did you wear a 30-day monitor or shorter duration? I'd recommend it again... recording everything for a longer period may tell you more about the nighttime episodes you're having. Sorry to hear it's disturbing your sleep. Exhaustion can create a cycle of more tachycardia's.

After my first ablation in January 2018, I had similar symptoms as now. Exhaustion, chest pain, shortness of breath, transient dizziness, skipped beats, zero cardiovascular endurance. The laughable thing was it was painted to me as a super short recovery. That I'd be back to normal within a week. Wasn't the case. I ended up off work 3 weeks and it took me a good three months until I felt some semblance of "normal". That said, I have never progressed to where I was before the ablation. I feel like a couch potato version of my old self. I did moderate-to-intense cardio 5-6 times a week and could do 15,000 steps in a day on top of that without blinking an eye. Very, very active before the ablation. I'm constantly winded now with very basic activity like household chores.

I, too, was reigned in by the thought that this solved things for good. The thought that it would eliminate the need for medication was a big deal for me. In hindsight, I almost feel like the EP doctor jumped on the ablation solution too quickly. I mean I had one SVT episode in 20 years? Then, there I was in the Cath Lab less than a month later at the doctor's direction.

I feel you on the anxiety front. I, too, experienced legitimate anxiety responses from the whole process. My PCP prescribed me Klonopin .5x 2 a day to get me through what he described as almost a PTSD response to everything I went through. The most I took was .5 a day and even with that dose I felt cloudy with my cognitive functions. I slowly weaned myself off. After this, my doctors kept going back to the anxiety as the root of it. Almost chastising me for going off the Klonopin. Then, I was back in the ER with SVT in June 2018 (5 months after my 1st ablation). It was recorded in the ER so the docs finally believed me that it wasn't just anxiety.

My second ablation was in September 2018. That was one even rougher. I was exhausted all day long for the first 2 months. I ended up off work for 3 months this time. What little cardiovascular endurance I had built up was wiped clean. Both ablations were AVNRT and described as "straightforward" with only a few burns. I've been back to the Cardiologist several times a month since September. A plethora of tests were ordered to rule out anything else that could be wrong... everything looks "great" according to my doctors. Then why do I feel this way? They've even sent me to a Rheumatologist to see if anything else is going on. Nada. Everything looks fine. I'm perplexed, frustrated, and exhausted with this. I just want to feel like myself again. The only thing left to have caused this is the ablation itself. And the doctor's seem to write that off as a cause since this was so "straightforward".

I wish you the best. You aren't alone. Keep me posted on how you're doing. Sounds like our timelines and story are very similar.

And ps - I have started daily meditations in the morning. I introduced that in my morning routine a short time after my first ablation. I'm now at 300 days straight and it has really helped the stress levels and anxiety. I use the guided app, Headspace. Highly recommend.

Take Care,

MMermaid

Dotore7 profile image
Dotore7 in reply to MMermaid

Hello! Please, I know this post is 4 years old, but I just found it! I would really want to know how are you doing now. I am 25 years old, male, I have had SVT since I was 13. I turned 20 and I had the ablation for AVNRT. I felt worse afterwards, just like you described....I was very active before. I may need another one because last month I had a new episode.... I don't really understand why I have had it done! This is so frustrating! and it caused me so much stress and anxiety! The problem is that, doctors don't believe me. They just say anxiety. Of course I have high level of anxiety because of this! BUT this is not causing my problems! I do not know what to do... I feel as if my life finished when I turned 20. (well actually, it finished at 13 when this AVNRT happened.) It took doctors 7 years to catch it as well... and I was told it is in my head! HORRBILE

MMermaid profile image
MMermaid in reply to Dotore7

I'm so glad a notification was sent to me so I could respond! First, I hope you are doing ok and I totally understand how you're feeling.

I want to preface this by saying every situation is unique and mine may be different than yours or others. I don't want to discourage anyone from conferring with their doctor, and maybe even a second doctor, and making the right medical decision for themselves.

I honestly never felt the same after the 2nd ablation. Was the SVT corrected? Yes, no issues with it anymore. Weird beats, exhaustion, no endurance, short of breath... yes. I've had every test in the book - EKG, Echos, MRI, more heart monitors and nothing has shown up as wrong. My Cardiologist thinks maybe the 2nd one, combined with it being close to the first, triggered some chronic inflammatory response. Pericarditis maybe. Also, maybe an autoimmune trigger from the trauma of the procedures. I see the Cardiologist every 3 months or so for follow up. Can't walk the stairs without feeling winded. :/

From a mental health standpoint, yeah, total anxiety/panic attacks at times. I continue to meditate in the morning and go for brisk walks every day. Never did resume running and all the super athletic things I used to do... so I'm sure that has affected my mental health, too.

I guess my frustration is it was portrayed as breezy and would eliminate me having to take medication the rest of my life. But instead I feel lousier (aside from no SVT) and take medication now. Sigh.

Again, confer with a Doc or two. I don't want to negatively influence your decision on your own care. Just sharing my experience.

Don't let anyone tell you it's all in your head. Idk, maybe it's a panic attack but maybe it's SVT it feels so similar. Sounds like maybe you need another monitor to try and record it again? That's really the only way to tell.

Take care! You'll get through this. xx

Dotore7 profile image
Dotore7

Thank you for your reply! I appreciate this so much... Yeah, I was thinking about getting a loop recorder implanted... ALL cardiologists I saw during the past months told me there is a little chance it may be SVT again but unless they catch it... When I had the episodes I tried to record them with my Apple watch and guess what? ALL cardiologists and EP told me this is not accurate and it looks like Sinus Tachycardia. So I plan to get a loop recorder surgery. I suffer from anxiety and panic attacks because of all of these heart problems since I was 13. I feel exhausted. I cannot do dance anymore, I can barely walk around the block. I cannot bend over as this triggers ectopics and an adrenaline rush which increases my bpm to around 150bpm. Since all the tests have been alright (besides a stress test that shows ectopics), I don't have any other problems. One cardiologist told me (last month) I had an episode of NSVT which triggered so much stress....after I showed him one of my apple watch recordings. I will have to fly to my home country in 4 days...and I am very scared. First about the flight itself and then about my heart...every time the plane has turbulences...I feel that I am in a rollercoaster and have butterflies in my heart area (probably ectopics)....anyway...thank you for your kindness! I wish you all the best! Take care Lancelance!

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