Hello, new here! Here's my story of AVNRT and 2 ablations...

[MMermaid]

Hi everyone. Grateful to have found this forum. Thanks to all for sharing your experiences here. Makes you feel less alone in what feels like a very isolating health struggle.

I'm a mid-40's female who has been athletic and fit my whole life. Avid runner, swimmer, beach lifeguard, and fitness buff. I was diagnosed with SVT as a teenager and very briefly put on beta blockers in my late teens/early 20's. Everything was fine for more than 2 decades.

In 2013, my husband of 15 years, partner for 22, and overall best friend for life, died suddenly of a ventricular arrhythmia and cardiomyopathy. He was a young and seemingly healthy man of 44. It devastated me in every possible way. Still working on figuring out what life means without him in it. Sigh, now on to my own arrhythmia...

SVT came back in my life in a serious way in late 2017. After 20 years, a new episode hit me and required an ER visit and aggressive adenosine treatment. Really scary part about that episode is that I was on a coast-to-coast five-hour flight earlier in the day. What would have happened if I was mid-air or halfway over the Pacific? What if I ended up suffering sudden death like my dear husband? These things continue to fuel my anxiety levels with this whole process.

Anyways, I'm recovering from two cardiac ablations in 2018 to correct my diagnosed AVNRT. First ablation was in February of last year. After another bout of SVT in June, a second ablation was scheduled in September. Knock on wood, no SVT's since the second ablation. Recovery was really tough this time. Protracted exhaustion, zero cardiovascular endurance, perpetual dizziness, weird beats (PVC's and PAC's I guess is what I'm feeling), and overall malaise.

I've had ever test imaginable this past year - Echocardiograms, more EKG's than I can count, three 30-day heart monitors, stress echo test, regular stress test, cardiac CTA scan, calcium scoring, extensive blood work... wow, that's a lot. Did I miss anything? All tests came back fine. My last heart monitor showed a few thousand PAC's, PVC's a day but no alarming arrhythmias. Was told nothing to worry about.

So far, still no SVT episodes but my heart just feels very weak? No endurance whatsoever and the lightest activity puts me in the 100's (i.e. waking up, making the bed, etc). Keep in mind I use to run 8-min miles for 6 miles a day. So, definitely feel very weak compared to the previous "athletic" me. It's been a solid year since I've done any serious cardiovascular exercise. Most days I struggle to reach 10K steps.

I also feel these weird thumps/thuds a couple times a day. Feels like my heart is stopping and restarting in a funny way? It's always alarming as it feels like it's not beating or that it's in a funky rhythm.

My heart rate is very sensitive to any stress now, too. Work stress sends it into the low 100's sitting at my desk.I also have a terrible case of white-coat anxiety... in ANY doc's office now, my heart rate gets in 110's to 120's and BP spikes to 150/90. When I leave and go home, it moderates in the 70's and BP goes down to a nice 110/60. It's like I'm in "flight or fight" near any medical center. lol

I've written a novel, apologies. I'm just struggling to get through the recovery process and get closer to my previously very active "me". All the strange sensations I feel now are always scary to me. I struggle with anxiety now and hypersensitive to any changes in my heart rhythm (which we know only fuels the tachycardia). Going out in public places is still tough and the thought of resuming extensive travel again puts me in panic.

Thank you all for contributing here and giving me some solace in this perpetual state of uneasiness and fear. Wishing you all the best in your journeys. Good health to all in 2019.

Cheers,

MM

[MMermaid]

Edit, just re-read my last 30-day holter monitor results. I was mistaken. PVC's - anywhere from 100-2,000 a day. PAC's a couple hundred a day. High HR was 120bpm, low HR 50bpm. Average 70bpm.

[meadfoot]

So sorry to hear your story on so many levels. Firstly the loss of your dear husband is beyond measure and added to that your own battle with arrhythmia.

The associated anxiety on top of it all makes us wonder how we ever get through it all on top of the terrifying physical symptoms and sensations. The fear it brings is almost too much to bear. I so hope you have a good team of family, friends and medics in your corner to see you through the dreadful series of events you are going through and coping with ongoing.

Sometimes we are hit with multiple events any one of which many people never experience in life and it is all so unfair. The loss of your husband and currently your health being compromised is beyond cruel. Although it's hard to see now things will improve, life will get back on track bit by bit, slowly does it. Hold on to the thought that a little progress is still progress and even with set backs over time you will find yourself in a better place step by step.

Svt is dreadful as I know only too well from personal experience and the fear and anxiety you feel seem part and parcel of this vile condition. The symptoms are dreadful and we wonder if it will ever stop. The hypersensitivity too is truly unnerving. Believe me I understand through personal experience only too well. As you feel better it will settle. Getting back your confidence when you are still so raw both from your grief about your husband and bodily rawness from your procedures and symptoms will take a long time but eventually you will recover and life will be better, honestly it will.

In the interim be kind to yourself, don't worry about the future and the things you are now afraid to do. This will pass with time and confidence will build. For now sooth your mind and body with rest, good healthy food, surround and nourish yourself with people who support you, look for some good emotional support to help relax, look for some mindful calming. Use your medical team when fear overtakes you.

Life will improve please hold onto that. Big hug sent to you. Thinking of you. If you need to chat ongoing send me a personal message and I will support you ongoing while you climb the mountain. Best wishes, xx

[MMermaid in reply to meadfoot]

Thank you for the kindness and compassion, meadfoot. Great advice on the rest, good healthy food, and mindful calming. I have started meditating daily (on 330 consecutive days!) and trying my best to eat better. Looking at my blood work on my ER visits, I had very low potassium which I know can be a trigger. Thank you again for the support. Hope your journey is going well. Based on your advice, sounds like you are in a good place in healing. All the best to you. And hugs back! MM

[jeanjeannie50]

Meadfoot has put everything beautifully for you and I endorse everything she has said.

I'm so sorry to hear about the sudden death of your husband, grief is so very painful and it takes a long time for that to ease a little. I'm sure it must have a great impact on our health too.

Unfortunately those of us who have been involved in any strenuous type of exercise are more likely to suffer with heart arrhythmia's. Like you, I did a lot of high intensity sport including swimming (trained with a team twice a week), cross country running, cycled and also did horse riding and long distance walking. We thought we were keeping ourselves fit didn't we? Well now it appears that wasn't the case! All we can do at the moment is test our boundaries very slowly, I believe putting any strain on my heart can send it back into it's frantic beating. I've had three ablations and had yet another cardioversion three weeks ago. After any cardiac procedure we have, I now believe we should allow our heart muscles to strengthen while in correct rhythm, before we demand they do anything strenuous. I live in a very hilly area and have recently decided that I'm only going to walk on the level for as many months as I feel I need. So annoying, but I want the best chance of having a normal heart rate again.

Sending my very best wishes for a calm heart.

Jean

[MMermaid in reply to jeanjeannie50]

Jeanjeannie50, thank you for your reply. I hope you are doing ok and healing from the cardioversion! That is a lot for your heart to endure. How recent was the last ablation? It's encouraging for me to hear from others going through this after being so active. Our fitness level sounds pretty much similar - before and after! I'm really humbled by how taxed my heart is now. Sort of hard to fathom what I used to be able to do. It definitely makes me appreciate all I've been able to do in the past. The year my husband passed away, I ran at 10K/10 miler in his honor and placed first in my age division. Now I can barely walk around the block without huffing and puffing! Sigh, acceptance, acceptance. Thank you for sharing. I really appreciate the support! All the best to you and sending you good health vibes. MM

[jeanjeannie50 in reply to MMermaid]

I know just how you're feeling, because I too struggled to walk far once AF really set in. I could only walk slowly and it made me breathless. It was also discovered that taking Amiodarone had damaged my thyroid and had made it underactive, taking a supplement for that really helped me become more energetic. If you haven't had a blood test to check your thyroid function I would recommend doing that.

My third ablation was about 2 years ago and that could have been the procedure that helped me most. Or it could have been changing my diet to a more healthy one that,I really don't know. I just wish I had tried the healthy eating diet before having any of my ablations. I now totally avoid any food containing artificial additives and all my meals are cooked from scratch.

Best wishes.

Jean

[MMermaid in reply to jeanjeannie50]

Thanks, Jean. I've had so much blood work the lab knows me. All of that has come back fine, thyroid et al.

I just read a post of yours about BP. Mine too has been high after the ablations. It was always low before the procedures. Went to the Cardiologist this morning and it was 140/100 just sitting in the room. I definitely agree about the component of anxiety playing its part. As soon as I got home, it was back down to 120/75. Sigh, I just want a week to go by with no medical stuff. Maybe it's time to retire the fitbit and blood pressure monitor for a bit and just work off of how I feel each day. I'm getting obsessive about checking my HR and BP... can't be good for the mind.

Cheers to healthy cooking and meals from scratch.

Best,

MM

[2468abcmuk]

You have had a very rough ride & so sorry

For the loss of your husband and best friend: I have svt and heavy burden of ectopics: your mind races with thoughts & panic : it will get better honestly & you will find your self doing things slowly as you used to : you will go in a plane again and

You will have fun again: I have flown to Australia and I never believed I would get on a plane again: Any one of us with or with out health issues could have a medical emergency on a plane on a mountain anywhere ! When you have healed live your life to the full xxxx

[MMermaid in reply to 2468abcmuk]

Thank you so much for the support! You shared some really wise words... any one of us with or with out health issues could have a medical emergency on a plane on a mountain anywhere. I need to stop creating a narrative in my mind that I'm headed for doom anywhere I go. I admire your zest to continue to live life to the fullest. Wishing you continued good health and fun travels. MM

[2468abcmuk in reply to MMermaid]

Thank you : just push your boundaries a little every day and keep a diary it’s great to look back on & see what your mindset was doing few months from now & take all the meds you can to help you over this & help calm your mind

And heal xx

[Hidden]

That thump like a stop and start is the PVC. Instead of your heart beating 1.......2.......3 we get 1..2..............3. The "2" is the extra beat which confuses the heart into thinking it has had a normal beat, but this time the heart hasn't filled with blood, so we don't actually feel number 2. But then the heart fills up with extra blood in the gap between 2 and 3 and gives a powerful beat to pump the extra blood out. That's the thump we all feel. And the gap is when we all think our hearts have stopped. I have had this for 45 years and still alive. Cliff in Australia.

[MMermaid in reply to Hidden]

Thank you, Cliff. You brilliantly explained what none of my doctors could! That makes sense. It really is frightening when it happens. I almost feel compelled to cough or hold my chest. Always takes me by surprise. It's reassuring to know it's been a friend of yours for 45 yrs and hasn't caused you any harm. Thanks for that. Calms my mind a bit. Wishing you many more years of good health and heartbeats. Cheers, MM

[Heidiki]

Your story is very similar to mine. I haven’t lost my spouse, I’m so sorry to hear that. Everything else is almost my story. I’m in my later 40’s as well. Accept I just had my third ablation a month ago. This time they flew in the Dr. who pioneered the procedure to assist my dr. From Oklahoma. This time it feels right. I’m still recovering but good so far. I also have SVT /AVNRT. A couple years ago they implanted a loop recorder in my chest. Its like a holter monitor but it stays in for three years and alerts my doctor constantly of anything unusual. You may need to consider getting one. I’d have to say that has been my best advocate in this whole thing. If absolutely anything happens they know. I don’t have to try to explain it or hope it happens again so they can catch it on a Holter.

I too have been physical my entire life. My doctor has no advice when I complain of the drastic decline in my ability to workout. Seriously I’ve had every test imaginable and gotten the same results as you. It has caused LOTS of anxiety. I now see someone to handle those emotions. I’m not sure if it helps, I’m still very upset about it and dont want to accept that I can’t do things anymore at the level I’d like. Maybe that’s part of being physical, the competitive trait comes along with it, so I really don’t wanna give up, and it makes me angry to slow down. My therapist says, you’re getting older and should slow down anyway. BS! I don’t want to! It feels forced and I’m always gonna fight back. Lol. Good luck, I’m pulling for both of us!

[MMermaid in reply to Heidiki]

Hi Heidi! Thank you for sharing your thoughts with me. I appreciate the support! Wow, just a month since number 3? Sounds like you have really great medical care.

How is the recovery this time compared to the others? How quickly did you return to your normal day-to-day? I'm in the minority, I know, but it took me 3 months to get back to work after #2. I'm still adjusting to work (very intense and stressful work) and a short walk each day. That's all I can do. Tried to go for a longer walk and do a short 20 min exercise DVD yesterday and my heart revolted. My HR ran high all night into the morning afterwards. Scary. I see people running and I get a little angry inside. Trying to not do that but sometimes I just get super frustrated. So I feel you on your doctor not understanding about the decline in fitness level. I don't think they truly understand what a big lifestyle shift this is for so many of us.

I'm curious about the loop recorder. Did it require general anesthesia? That may be something to talk about with my doctor. I have horrible sensitivity to the patches on the holter - I get welts after a week. I'm lucky if they can squeak out 17 days out of a 30-day monitor because I have to take it off so much. It's obviously not catching everything.

Are you on a beta blocker? My doctor has mentioned it but I thought that's why I had the ablations in the first place!

Sending you good healing vibes. All the best to you. MM

[Heidiki in reply to MMermaid]

MMermaid: I had my first ablation in 2009. It worked for about 6 years. The episodes of SVT came back slowly. I had the loop recorder implanted in 2017, because I have every side effect to all the beta blockers, (of course lol). The loop is about the thickness of a pencil and is about 2 1/2 inches long. They numb you up good. They make a tiny incision less than 1/2 an inch and they slip it under the skin above your heart. Sort of under the breast so it’s almost unoticable. My dr used a skin glue to seal it up. I was in and out of the hospital in less than two hours total. It takes away a lot of anxiety because it tells them what is happening without me having to convince them I’m not crazy. I had my second ablation in November of 2017. A week later I started having SVT episodes again. As far as recovering from #2 I guess I never did. A month later I ended up getting 2 bleeding ulcers and a plura effusion on my lung. I nearly died. I went to the ER 4 times telling them I was dying and they couldn’t diagnose what was going on. Finally they sent me to a dr that scoped me and found the ulcers and started the meds to fix those. But it took a month more to diagnose The plura effusion and by then it was to thick to drain. Needless to say my opinion of doctors was the worst! So it took almost a year to get the nerve to do my third ablation. I haven’t worked in two years because of all of this and I have no plans of working anytime soon as I need to heal.

I’d say you could try beta blockers and get the loop monitor and see what they say. Pvc’s and PAC’s are livable. Even slowing the workouts is something a person can deal with. It’s the not knowing that you cannot.

I hope this was helpful.

[MMermaid in reply to Heidiki]

I'm so sorry to hear about the complications you've endured. You've been through a lot! I'm glad you have some piece of mind with the recorder and some solace in moving forward with the 3rd ablation.

Sigh, we are indeed similar. I cannot tolerate beta blockers. I get every side effect and then some. We've tried just once a day (morning, no night) and even half of the lowest dose and I still get dizzy and my HR gets very low. I can't take that and function normally. I had to take 50mg of Metoprolol ahead of my coronary CT scan and I was out for the punch the rest of the day.

Like you, I struggle with my confidence in doctors and similarly have felt I have to convince them it's "not in my head". In fact, my initial SVT episodes were cracked up to "anxiety". I guess they saw the young, fit, grieving widow and seemed to think it was my emotions driving this. So, I totally understand.

"The not knowing" really is the hardest part. I don't have confidence that my doctors do really know and it feels like they are throwing short-term fixes on symptoms for the time being. It's not in my head that I'm feeling the way I do. I have a really low quality of life after this. Trying to stay positive but it can tough to keep my head high feeling this way.

Hoping you continue to feel better and solutions and good health follow you in 2019.

All the best,

MM