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Atrial Fibrillation Support

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Tired of this

Terim profile image
24 Replies

Hi everyone ,

I'm new to this and looking for a support group .

I had my first ablation on November 2015, felt a few palpitations and some pac's for about a week and then was great for 15 months although I was still on meds ..... decided to have a second ablation on feb 2017 to see if I could get off the meds , had it done and felt great for 1 1/2 months .... had nothing not even a PAC .... then on April 3rd all hell broke loose and ended up in ER with afib or flutter , I was converted twice and once converted on my own .

Anxiety and stress came into play as I was devastated that the ablation didn't work .... I was a complete mess , waited to see my EP at the 3 month mark and then he got me in early for a 3rd ablation which was June 21st 2017 ..... I'm now 4 weeks post ablation and I have stomach issues and I still have the burning in my chest as well as a heart rate of 76-87, but I am on 100mg metoprolol a day + propafenone .... the pain comes and goes . I wonder if I wasn't on beta blockers if my heart rate would be thru the roof ?? Just scared and worried that I'll never feel normal again . I know I'm only 4 weeks in and my heart is very angry from having 2 ablations in 4 months ....... feeling very frustrated!! I'm from British Columbia Canada

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Terim profile image
Terim
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24 Replies
CDreamer profile image
CDreamer

Have you got oesophagael spasms? That can be quite common after ablation.

chronicbodypain.net/the-unk...

I had this for months after 2 ablations.

Unfortunately sometimes it requires several ablations to work.

Terim profile image
Terim in reply toCDreamer

Thanks CDreamer

No I don't get spasms ...... I have burning in the throats and down to the stomach ...... it's only periodically throughout the day and I feel unwell ..... not sure if it's physical symptoms of anxiety as I'm consumed by my thoughts all day long ...... I see my GP in a little more than a week .

I'll have to get him to check it out

It's really hard here in Vancouver BC to get a hold of my EP as I can only see him after the 3 month blanking period ..... the afib clinic nurse is also hard to get a hold of for any questions as you call and leave a message and she doesn't get back to you for 24-48 hours !! By then your going crazy !! Frustrating !!! I read lots of different posts from other people and they seem to be able to be in contact with their EP a lot more than I ...... ???

Bagrat profile image
Bagrat

Sorry to hear you feel so unsettled. I dont know enough to offer meaningful comment but do know you are quite right in thinking it's early days yet. Sounds like your reason for second ablation was to get off meds completely and you are now concerned you have taken a step back. I feel strongly we should try to work with what is happening today. No advantage in wondering if the second ablation was a good decision or not. ( I suspect you have considered this.) We are fortunate to have skilled professionals doing their level best for us. The most likely outcome for you is that things will settle down and you certainly will not feel as upset and unsettled for ever. I send healing thoughts. I am a great fan of mindfulness and relaxation. You may find listening to Dr Mark Tyrell on you tube helpful. I also use the Headspace app but you can find Andy Puddicombe on you tube too.

Terim profile image
Terim in reply toBagrat

Thank you so much for your reply .... I will try those suggestions .

You are absolutely right and I guess I just need to be patient .

I'm just so used to being very busy and active , this has really knocked me down a few notches that's for sure !!! I guess I have to try and be more positive and then maybe it would help the outcome .... thanks again

BobD profile image
BobDVolunteer

Far to early to worry yet. It takes three to six months for full healing and a lot can happen in that time. As CDreamer has suggested the pain my be oesophageal related. You should also understand that raised heart rate post ablation is very common and yours is not overly high. It often takes up to nine months for things to return to pre ablation resting levels.

Terim profile image
Terim in reply toBobD

Thanks BobD ...... just hearing replies on here helps a lot ..... I guess I just have to be patient .... I do get burning in my throat and down the diaphragm to the stomach periodically throughout the day ..... I see my GP on august 3rd

I'm not sure if it's anxiety that is causing physical symptoms or the esophageal stuff ??? I guess he'll have to figure that out for me

Clareowenpearcy profile image
Clareowenpearcy

Hi Terim,

Sorry to hear you are having difficulties! I'm on Vancouver Island (Nanaimo) and had my 3rd ablation for Afib & Aflutter June 28th in Victoria. The Afib nurse has already called me twice to see how I'm doing. I was prescribed meds for the stomach for 30 days on leaving the hospital, the first week I had a lot of indigestion and bloating. I have Aflutter most nights but otherwise doing good. No meds other than Xeralto and the stomache meds for another week. I'm walking 4klm a day and feeling great. I do a fitness class 1hour a week for seniors too and although my heart does go into Afib it converts very quickly back. The first week was hell but every day after that has been an improvement. I have a wonderful EP in Victoria and a wonderful internet here in Nanaimo too. My first 2 ablations were 5 months apart back in 2010, same EP & internist this time around. I was having multiple episodes of Afib & Aflutter daily which always converted back to NSR on their own after a few mins/hours. My resting heart rate is still 79/89 and it goes up to 120/140 very quickly but with no ill effects. Everyone is different there is no one size fits all with Afib or Aflutter.

Terim profile image
Terim in reply toClareowenpearcy

Hi There

I'm so happy you messaged me .... it's nice to talk to someone from BC ...... thank you for telling me your story ,

I'm still on all my meds until 2 months in and then I'll start to cut them back ..... I'm only 51 and I'm working in my home as a hairstylist so I'm paranoid of going into afib while I'm with a customer if I start cutting the meds back now ...... I'm just 4 weeks in post ablation .

I love Nanaimo , my brother and his wife used to live in Denman but moved to Royston .

Who was your EP at royal jubilee ?? Was it Dr Christopher Lane ??

Clareowenpearcy profile image
Clareowenpearcy in reply toTerim

Dr Paul Novak!

He is a great doctor with a good bedside manner and personality (actually has a sense of humour) Dr Baille is my internist here in Nanaimo, also a great Dr with an awesome personality.

My first Ablation I was 52 years old. I'm fortunate that the Afib never really bothers me, I had it for probably 35+ years without realizing it wasn't normal to feel your heart race . An ECG requested by my GP because he thought he detected something at my annual physical, discovered it. The nurse asked if my heart always beat so fast! I said yes, she said go straight home and your Dr will contact you. The rest is history. The quiet heart is something I have a hard time getting used too. It feels so strange to not feel it racing. Lol

The Aflutter just showed up the morning of my last ablation.

Terim profile image
Terim in reply toClareowenpearcy

I wish I wouldn't feel it when I have afib !!!! I haven't had an episode for a while as I'm on meds ...... do you feel the flutter ??

Clareowenpearcy profile image
Clareowenpearcy in reply toTerim

Oh I feel it alright, Just used to it so it doesn't bother me. Yes, I feel the Aflutter too. It feels like the heart is shaking or I'm very anxious. The Aflutter I don't like.

Clareowenpearcy profile image
Clareowenpearcy in reply toClareowenpearcy

I guess, it was more common for me to be in Afib than not over the years, hard to explain but this was the norm for me.

Terim profile image
Terim in reply toClareowenpearcy

I think I had flutter before my last ablation on June 21st .... I sure hope it's fixed

Clareowenpearcy profile image
Clareowenpearcy in reply toTerim

My showed up on the ECG the morning of surgery. Dr Novak said he had suspected but never caught it before. If you have afib you have a 50% change if Aflutter and vice versa. My understanding is it shows in the upper right atrium & Afib is the left(could be wrong)Dr said he worked on both sides this time to fix both Afib & Aflutter.

Terim profile image
Terim in reply toClareowenpearcy

May I ask which meds you were on ??? And what dosage ?

Clareowenpearcy profile image
Clareowenpearcy in reply toTerim

My internist put me on 2.5mlg of the beta blocker bisoprolol. He thought this would be helpful, low dosage because I have low blood pressure. Worst 9 weeks of my life! I became, very lethargic, bad tempered, exhausted and suicidal. I took myself off 4 days before surgery and within 24 hours I was feeling better and 48 hours I was back to "my" normal.i mentioned it to Dr Novak the day of surgery and he said definitely the beta blocker could have this effect on some people and recommended that I stay away from bisoprolol, he said there are others that may not have the same effect. I am not a medication kind of girl! Rather have the Afib than meds, just me.Never have taken any for Afib before.Hate taking them.The only one now is the blood thinner Xeralto which I guess I will have to stay on for life.

Terim profile image
Terim in reply toClareowenpearcy

I think I need an internist ..... haven't had any afib episodes since April .... the doctor upped my meds and then did the 3rd ablation June 21 ...... I've always been on 25mg metoprolol twice daly and 150mg propafenone 3x daily ...... I'm still only 4 weeks into my healing but I feel so nauseous different times thru the day and very lethargic , cranky at times .... just not feeling very well ..... I've never had a problem with my meds until all hell broke loose in April .... 11/2 months after my second ablation February 16th ...... I know some of it is anxiety ...... I'm going to slowly start cutting my meds down to see if that works as the doctor is ok with that . I've just been scared to lower my meds as I'm in fear of having an episode .....but I almost would rather put up with the odd episode than feel like crap .

I feel like I'm being slowly poisoned .... at times my stomach buns and up to my throat along with the nausea

Terim profile image
Terim in reply toClareowenpearcy

I also have no underlying conditions and my blood pressure is great

Clareowenpearcy profile image
Clareowenpearcy in reply toClareowenpearcy

I don't know if this will help you! I live in Mexico for 6 months of the year, where it is very hot and humid. It's very easy to get dehydrated and this can definitely cause your heart stress and Afib. I noticed cold Coconut water would instantly hydrate me and help ease the Afib. It's the potassium in it. Worth a try! It has to be cold or I couldn't drink it. Lol

Terim profile image
Terim

My EP didn't really explain anything .... he just made a drawing on a printout of the heart of what he did .... and said let's keep our fingers crossed

Clareowenpearcy profile image
Clareowenpearcy in reply toTerim

Wow! Mine was so great! So informative. Even a male nurse when I was in recovery this last time, he explained and drew diagrams of what Aflutter was as I had not heard of it before that morning.

Terim profile image
Terim in reply toClareowenpearcy

I'm pretty sure my EP is good .... he just doesn't explain things very well ..... I don't know ?? Very frustrating ..... I won't be seeing him until sept 18th (3 month mark )

I'm hoping I'll be fine for a long time but if by chance I have to have another procedure I'm thinking of getting a referral to St. Paul's hospital with one of their EP Dr Mark Deyell ...... I just have to be patient and see what happens

Clareowenpearcy profile image
Clareowenpearcy in reply toTerim

It's early days yet! Stay positive and listen to your instincts. Remember Afib will not kill you and the chances of a stroke are really quite slim. It can be so frustrating I know! Enjoyed talking with you😘

Terim profile image
Terim in reply toClareowenpearcy

Thank you Clare for your positive words .... I'd like to stay in touch ... us BC'ers need to stick together for support ... lol

I hope you stay well and enjoy the sunshine

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