Any ideas or suggestions welcome!

[Slidingdoors99]

Dear Friends,

I’m feeling really not so positive just now and that’s really unlike me…

Long story short for some members: AFib for three years, fast (150+beats) I never go back into NSR without a cardioversion.

AFib due to hypertrophic cardiomyopathy.

I was so happy after my successful ablation at St Barts on the 24th October.

I posted on here, I rested, I was full of hope. My groin was healing well and I just had very short runs of ectopic beats that I was expecting.

I read the information sheets very carefully…

I had toothache just before the ablation and so saw the dentist six days after the procedure here in Taunton. There was drilling, could that have caused it?

Sorry, I’m being disjointed.

Early hours of last Tuesday (one week after the ablation) I went into AFib again. Not uncommon so rested and waited. Phoned St Barts the next day, who said I might go back in the next night, so to wait and see but if I felt really unwell to call an ambulance.

I put up with the AFib until the next morning when I thought I was going to faint in my kitchen, I was sweating and heart rate of 177.

Called 999. Ambulance in five minutes and A and E and monitored.

Yesterday at 2pm they did another (my sixth) cardioversion. I stayed with a friend but am home just now.

I can’t tell you all how disappointed I feel and how cross I am with my heart, but I also feel so sorry for it.

It was burnt in several places and then after only a week had 200 volts fired into it.. I feel very tired.

My local hospital said they can’t keep doing this for me, but they can’t not do it with my high heart rate and other symptoms.

Has anyone out there had a similar experience?

Is it at all possible that my ablation didn’t fail after all?

With my HCM St Barts said I had a 50/50 chance of it working. Just for once I wanted to be in the right damn 50%!! 😳

[BobD Volunteer]

Maybe in six months you might be able to say one way or the other but seriously far too early to start saying failed. I know it can be difficult but please stay positive .

[Mrsvemb]

Did you have an injection with adrenaline at the dentist? That may have been the cause rather than the drill.

[Slidingdoors99 in reply to Mrsvemb]

No. But he cleaned out a dead nerve! Thanks for replying.

[Slidingdoors99 in reply to Mrsvemb]

PS I had an injection to numb.. is there Adrenalin in that?!

[Mrsvemb in reply to Slidingdoors99]

Yes you have to ask for injections without adrenaline. Just had some myself.

[Slidingdoors99 in reply to Mrsvemb]

I had absolutely no idea. Thanks a million. 🫠

[Buffafly in reply to Slidingdoors99]

So you can stop fretting now because that was probably the cause of the episode plus what I assume was an abscess if you had root canal treatment?

[Slidingdoors99 in reply to Buffafly]

Hi and thank you!

Yes, I’m thinking that that probably was the cause and I am being very positive that the ablation is still on course to succeed!

Re the tooth issue: it was a dead nerve which was causing an infection that was causing me pain and the visit to the dentist.

Oh how I wish I’d known before that there was adrenaline in that numbing injection. I would have said to just do it without, if I’d known…

[Buffafly in reply to Slidingdoors99]

No need for that, there are very effective numbing injections without adrenaline !

[Slidingdoors99 in reply to Buffafly]

🤙☺️

[Rainfern]

Sorry to hear you’ve been having a rough ride and that not all is as hoped.

I had my long awaited ablation on 29th September and was back in persistent Afib after 2 weeks. So understand your frustration. I had a CV on 21st October and have been back in NSR since. Touch wood!

The way I’m seeing it is my glass is still half full and every day in NSR is a plus. I think it’s important we don’t blame ourselves. I send love to my heart which had got used to its funny beat and needed an extra reminder of what it was supposed to be doing. If I need a touch up ablation so be it, but meanwhile I try to find ways to distract myself and get on with life.

I was surprised at just how exhausted I was and Im still resting up half the day. Some mornings I go straight back to bed! And your procedures were much more recent than mine! Take whatever rest you need. I’m enjoying Micheal Rosen reading his book “Getting Better” on Audible - it’s less effort than reading and is inspirational.

Good luck and virtual hug to you and hope you go on healing well. Let us know how it goes.

[Slidingdoors99 in reply to Rainfern]

Thank you so very much. I was really hoping to hear from others who had gone back into AFib soon after the procedure.

Your words were encouraging and I love Michael Rosen and so will definitely listen to that! ☺️

[Slidingdoors99 in reply to Rainfern]

PS I am and will rest up for sure, the thing is that I don’t feel tired though…

[JOY2THEWORLD49]

Hi

BBs didn't help my H/R but Diltiazem CCB does control my H/R.

What meds are you on?

cheri JOY. 74. (NZ)

[Slidingdoors99 in reply to JOY2THEWORLD49]

Hi Joy. The rhythm meds I take are diltiazem and disopyramide.

[JOY2THEWORLD49 in reply to Slidingdoors99]

Hi

Diltiazem in brining down your Heart Rate slows down the irregular H/Beat but it's not like Flecainide.

Bisoprolol also will assist in some lowering of H/R but with me it controls the hypertension more.

Combinations work to personalise your meds if you have an interested Heart Specialist. An Endocrinologist is not necessary.

cheri JOY. 74. (NZ)

[Slidingdoors99 in reply to JOY2THEWORLD49]

Hi and thanks Joy. I know that I can’t tolerate BBlockers (awful asthma) and have asked but been told that Flecanide is not for me! (Maybe because of my HCM?)

[JOY2THEWORLD49 in reply to Slidingdoors99]

Hi

What is HCM?

BB Metoprolol NO for asthmatics but BB Bisoprolol YES for asthmatics with AF.

What is Disopyramide?

BBs stop anxiety and adrenaline from flooding the heart muscles.

CCB Diltiazem stop Calcium from flooding the heart muscles.

There are other blockers as well.

cheri JOY

[Slidingdoors99 in reply to JOY2THEWORLD49]

Oh Joy! I really don’t have all the answers! I just go by what the professionals say.

I didn’t know there was a BB that would be ok for me.

Disopyramide was prescribed by St Barts in London to help to keep me in rhythm. 😯

[Jajarunner]

You poor thing. I know exactly how you feel. I've been hospitalised 14 times for fast AF, 11 of those ending in cardioversion. I've had three failed ablations, each of which knocked me out for six months, and now my EP wants to do a fourth. None of the drugs work except amiodarone (which is giving me vision and thyroid problems after just six months). If I'm long-term suck again I'll lose my job. My only trigger seems to be sleep!Sorry, self-indulgent way to say that I'm sending you a huge hug. Have a shout and a cry and then soldier on. Best wishes Jaja 🙏

[Slidingdoors99 in reply to Jajarunner]

Thank you so much for your honesty and for understanding how I feel.

After my ablation I asked if a second was needed then would they do it for me? The EP said it would depend on how long this one lasted.😬

For me, it looks like pace and ablate next.

I’m sure it must be because of my HCM.

I’m sorry to hear your story. I had to come off that tablet due to thyroid issues and QT intervals.

I’m sorry too that your ablations didn’t work and wiped you out for so long. I don’t actually understand (but am very grateful) that I feel normal already. This doesn’t seem to match what a lot of people have experienced.

Thank you for the hug! 😊

[Ppiman]

There’s some recent evidence I’ve read that AF occurring after about a month or so following an ablation procedure is a sign that it might return again at some time. Other evidence showed that at one year many patients had had some level of recurrence but, even at two years, most were still free.

I would give it a month or so and see what you’re like then.

Steve

[Slidingdoors99 in reply to Ppiman]

Thanks Steve. I’m still hopeful. Short episodes of AFib after an ablation are common I know and maybe it will be ok, because perhaps people who get short AFib episodes afterwards self correct (like they did before the procedure) whereas my heart won’t go back without a Cardioversion.

Hope that makes sense?

[Ppiman in reply to Slidingdoors99]

I can feel your disappointment. Good luck rarely follows me around but, overall, life works out okay, I suppose. Talking of luck, only two days ago, I wrote on here that my diverticular troubles have been well controlled for a good while. Well, fever and pain and a visit to the doctor’s yesterday should teach me not to tempt fate.

Steve

[Slidingdoors99 in reply to Ppiman]

😔 I did a similar thing by saying on here that apart from a few runs of ectopic beats I felt absolutely fine!

[Ppiman in reply to Slidingdoors99]

Today has brought some improvement thankfully, and I hope so with you, too, What a life it can be at times.

Steve

[Slidingdoors99 in reply to Ppiman]

I know Steve. 🤕

[Gumbie_Cat]

I’m so sorry to see this, and I do know how you must be feeling. Don’t blame yourself at all, it’s a hard three months just after an ablation. I went back into AFib within 48 hours, and only learned at my three month check that a cardiac MRI showed too much fibrosis in the atria. (The MRI was part of a study.) Also that they didn’t even recommend cardioversion.

I felt that I had built up hope for three months to have it crash down. However, now that I’m fully recovered from the ablation, my heart is somehow more settled. Always in AFib, but rate controlled with a beta-blocker. It’s not ideal, and not what I would have wanted - but I can just get on with things really, without thinking of the next procedure any more.

I really hope that yours will simply settle down, especially as you were doing well at first - I’m sure there’s a good chance.

[Slidingdoors99 in reply to Gumbie_Cat]

Dear Gumbie, thank you so much for your message. I’m sorry to read about your AFib journey and I hope that you carry on feeling ok even though you have AFib all the time.

I take my hat off to you. I’m hopeless when I’m in it… pulse of 160 and sweating and queasy and dizzy and breathless and just horrible.

I wish you all the best. ☺️

[Jackiesmith7777]

It’s so disheartening , it’s like a rollercoaster of emotions . I’m going through with my husband if you read my posts . His heart rate is quite high on the ecg in his watch up to 150 but mostly round about 120 he had an ablation in 2017 which has failed causing his recent stroke as he wasn’t put on blood thinners . I’m wondering if having another ablation is worth the risk . I’m hoping if we finally get an appointment at arrhythmia clinic, after two cancellations , they can tweak his meds or at least when we see the heart function nurse on the 22nd November . Try and stay strong although I knkw it’s really hard sometimes.

[Slidingdoors99 in reply to Jackiesmith7777]

Dear Jackie, I am so sorry to hear about your husband and very cross on his behalf that he wasn’t put on blood thinners straight away.

My nightmare started in September 2020 and that’s the first thing that they did…

It really is a rollercoaster. 😔

[doodle68]

commiserations Sliding door😔 I went back into AF on Monday so had 3 AF free days following my Cryoablation and have now had 5 full days of AF . The groin bled very badly and is still weeping a little , all very depressing having waited so long for the procedure . I just wish I could have had ablation before reaching persistent AF .

Now a 3 month wait to attend the Arrythmia clinic.

I told them when I went for the ablation the effects of AF on the lives of many are greatly underestimated it is a horrible thing .

[Slidingdoors99 in reply to doodle68]

Oh my goodness Doodle I really feel for you and understand how you must be feeling.

Just one of the positives about being a member here is that you get to share with so many like-minded people.

I’m so sorry that you only lasted a few days like me, but I also have some questions too!

It was decided for me to go with the burn rather than the ice, but in any case, I think we are in quite a similar place…

What I wanted to ask you is, do you self correct- as so many do- when you’re in AFib?

I always need a Cardioversion.

So, I was in AFib continually for two days and then had a cardioversion at my local hospital because of my heart rate being high and also because my hospital was told - by St Barts- to get me back into NSR asap.

Why are you having to put up with it for five days and counting?

Can’t you get a Cardioversion where you are?

Thinking of you,

Sian