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Anyone have worse symptoms after ablation?

Posted , 3 users are following.

maggie34838
maggie34838

I had an ablation in march this year after having had PAF for 18mths. I failed 2 antiarrhythmics and was still getting AF with symptoms of dizziness, nausea, high BP. The ablation went OK and I stayed on my pills until the blanking period of 3 mths was up. I tried several times to reduce and then come off my pills. I succeeded for one month but gradually the symptoms of AF returned and I had to go back on my pills. At the moment my symptoms are worse than they were before my ablation despite an increase in one of my medications. I go into AF with the least exertion, nearly pass out and have bad headaches when my BP goes way up. My EP says I can have another ablation but I am reluctant if this also makes my symptoms worse. I'm not sure of the chance of success and whereas the first time I was very positive, now I feel quite unsure whether to go ahead and just sick of the whole thing. I desperately want my old life back again!!

0 likes, 8 replies

8 Replies

  • GotAbitBetter
    GotAbitBetter maggie34838

    Posted

    Thank you for sharing your experiences, Maggie, and so sorry that the ablation wasn't a success. I haven't had an ablation as during my EP they couldn't identify for sure what the problem was. I think there is unanimous feedback on this website that some of the pills we get put on make us feel worse, and I'm waiting for another 6 day tape and Echo as recently have relapsed with high BP, dizziness, etc. I would firstly ask your Cardiologist to have another monitor fitted to try and identify what is going on. As you rightly say, what is the point in having another ablation if the first one made you feel worse.but sometimes you reach the point of pursuing any avenue. Are you keeping your GP in the picture? Might it be worth seeking a second opinion?

    Take care

    • maggie34838
      maggie34838 GotAbitBetter

      Posted

      Thanks for your supportive message. I had a week long event monitor not long ago but haven't yet had a followup meeting with my EP. He did send me an email saying it looked complex with severe symptoms, and another ablation probably wouldn't get rid of all symptoms - whatever that means! Possibly 'complex' means 'we don't know what's going on!" When I do see him I want to ask what my chances are of some improvement and what exactly he's going to do in the ablation - which areas, any mapping etc. I live in NZ so I think the system and practice is different here.

      Unfortunately I can't seek a second opinion unless I pay privately and that's very costly as I have no insurance. Good to hear from you.

      Cheers Maggie

  • deanna82033
    deanna82033 maggie34838

    Posted

    Hi Maggie: my symptoms didn't go away after each of my ablations. The different medication I tried didn't work so well either. My symptoms were debilitating and frequent, sounds similar to yours, so I kept trying all options. I waited at least 3 or 4 months befor I talked about trying ablation again. Just from my own personal experience, if you are fine on your current meds, keep taking them and wait a few more months before trying another ablation. If the meds do not keep your heart in sinus rhythm, ask to try different meds. I am again trying new meds and my EP is very good with following up with me . ablations didn't work for me in the end but I needed to try. I hope you will feel better soon.

    • maggie34838
      maggie34838 deanna82033

      Posted

      Hi Deanna,

      Many thanks for your helpful message always appreciated. Friends and family are very supportive but nothing beats someone who has experienced AF symptoms themselves.

      Unfortunately my meds aren't working and I've been having the really bad episodes that I had when all this started. Ended up in A&E this morning, I knew they couldn't offer me much but they contacted my EP who said I could go on to Amiodarone (are you on that? I'm resisting it as a last resort) and that I'm on the priority list for another ablation. I feel those are my only options now. Would be interested to know the meds you've tried in the past. Thanks again

      Maggie

    • deanna82033
      deanna82033 maggie34838

      Posted

      Hi Maggie, really sorry that you ended up in the A&E this morning. I understand the frustration and the feeling that they couldn't help, but not knowing what to do.

      I am currently on Tykosin, a tightly controlled med, but I am tolerating it very well. Had to start in the hospital. Highest dose because, like you, my symptoms are severe. Only on it for 2 weeks, so still crossing fingers. But, I've never been free of this for 2 weeks since it started almost 2 years ago. My current EP and my previous EP wouldn't put me on Amiodarone because they felt it might be too toxic for me. But I do know many people on it, and I almost did ask for it b/c of my symptoms.

      The med I was on before Tikosyn was Flecainide. I took as needed. Would take it a couple times a week, but side effects wiped me out. Hard to function but brought the high rate down. Many people are good on it. Propafenone didn't work at all, but is similar to Flecainide, again, started in hospital, many months on it. Multaq had stomach upset so stopped. Diltiazem with metoprolol but also had no affect, but again on it for many months.

      I read your previos post on the results of your monitor. I wasn't told that my monitor results were complicated, but when the EP did my 2nd ablation I was told that the mapping was highly complex. New EP did 3rd and said same thing. Timing made it difficult to pinpoint the starting point of the arrhythmia, so he could find where to ablate. The 1st ablation was quick, 2 hours, and he thought he got it. When you see your EP, ask what he means by complex. What is he seeing that makes your heart rhythm complex. It makes a difference on treatment, but ablations are used with most arrythmias. Either to get rid of completely or to decrease symptoms and help meds work better.

      One other thing they did for me in the hospital was to check my blood and make sure my magnesium and calcium levels were where they needed to be.

    • maggie34838
      maggie34838 deanna82033

      Posted

      Hi Deanna,

      You're obviously well informed or a nurse or both! I'm both, I think people with AF, especially on this site do a lot of homework on treatments and drugs. I'm pretty sure Tikosyn isn't available here, like you I tried several meds - Bisoprolol, Digoxin, Diltiazem and Flecainide - the last 2 have worked the best but I feel are now failing and as I said, in NZ the next one to be offered is Amiodarone - have read up on it and has many nasty effects but like you may have to consider it. With my first ablation the EP didn't do any mapping but just ablated round the pulmonary veins - I really believed that would fix it. I'm not sure whether he will do mapping the second time around or just ablate the next likely area. I have many questions for my EP but then I always have - I'm sure he groans when he knows he's seeing me!! I take Magnesium supplements - thought that would fix it too at the beginning!

      Think I'm still in Atrial Flutter now but apart from feeling drained am OK. Have my fingers and toes crossed that Tikosyn continues to work for you. All the best Maggie

    • maggie34838
      maggie34838 deanna82033

      Posted

      Hi again Deanna,

      I just wanted to ask you how having really bad symptoms with AF has affected your life, and more importantly how you cope with that? I was pretty active before mine began, had just retired from my job as a Hospice Nurse and just started a new relationship - all was rosey!! I guess I feel quite cheated now and I did think that the ablation would fix everything - naive! My exercise tolerance is low, so while before I was going on day long walks, I now can only manage about 30mins slowly and on the flat. I really feel for my partner we'd planned overseas trips (one to visit my son in the UK) and other things but have not been able to do any. We have travelled around NZ a bit and really enjoy each others company but it wasn't how I envisaged retirement! Now that I feel my current pills aren't working and there aren't many options left I must confess to feeling down at times. Sorry for moaning, I tend not to talk about it with anyone else as a common comment to me is 'But you look so well!!!' You sound quite upbeat and I wondered how you had managed your journey? Cheers Maggie

    • deanna82033
      deanna82033 maggie34838

      Posted

      Hi Maggie:

      I know how you are feeling. No one knows what this is like unless you go through it, although friends and family are concerned. I was always pretty active too. I also get told how healthy I look. They don't see the racing heart, comprehend the worry or feel the exhaustion. And, this is unfair!! My husband and I used to ballroom dance for fun. The Viannese waltz was my favorite. I used to go on hikes with friends and biking around. But that all slowed down or stopped and I don't know if I'll ever return to most of it.

      When the first symptoms started I was in disbelief. My life quickly became about visits to the hospital, doctors, monitors, meds and managing my health. Everything fell away because of the severity, and my life is still filled with these things. But, I think I have learned to talk more and to stay close to those who are more positive. I have friends and coworkers that let me joke about things that I struggle through. Humor helps me talk about it, process it and includes others who might be worried. I look for the things I can do to modify my activity. I walk 30 min every day, like you, slowly. But that's okay, because the alternative is sitting smile I asked my friends to have game nights or get togethers instead of hiking, although I still do that, but am slow and take picture breaks to distract the faster walkers smile When my arrhythmia starts, I get still, take meds if I can or hug my friends goodbye hopefully with a smile to keep them at ease.

      I also changed doctors, although I know you don't have that option. After my 2nd ablation my EP told me I was in a bad place and seemed to not know what to do. This scared me, so I asked for a 2nd opinion. The EP I have now is not giving up on me, which helps me to do the same. He's very clear on treatment options and is also clear that he's working for me to get better.

      You are right that this is a journey. Not all days are good, or bad. Being down us okay. You will have better days and move forward but not right away. I hope I don't sound like I know it all...I don't. I just wish and want things to get better for you, and me.

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