AFib - again it is scary!

[fifitb]

Hi everyone at this helpful forum.

I have written before and here I am again. I didn't write when the last major event of paroxysmal atrial fibrillation occurred as I was so FED UP and tired of this going on as I have now had 2 ablations (last one a year ago in June) and I felt I might be too negative. Since then I've read posts from people that had suffered similar symptoms leading up to the event and that was interesting!

My GP had diagnosed that I had shingles this last month (despite having had the injection against it). I thought I'd had a bad back and mosquito bites!!! As it was a late diagnosis I could not have anti-viral medication and she put me on co-codamol (nice!) for the pain but another medication called, Amitriptyline, and I did not read about it fully until I'd taken the second dose, and it said under Warnings and Precautions, to not give to people with heart problems, arryhythmias etc and it can cause drops in potassium levels. I rang the surgery - no doctor available and the Receptionist said it should be ok to take if the GP said so! The doctor would get back to me the next day. She didn't. I rang the surgery and they were ALL on a Team Building Day. I took one more of the pills that night. The next day, I was working at Uni (part time but hard work, using my brain) and was just finishing and walking with my documents into Main Reception when my bags of papers felt strangely extra heavy! Then I felt that 'foreboding' sensation (people here have talked about) across my chest, not pain but a building up of something and I thought, oh no!!! I went to sit down, felt really dizzy and faint and breathless and asked a student to find a First Aider, who then called an ambulance and I was then taken out on a trolley to be rushed to the hospital (luckily just up the road!). I was rushed into A&E and then the resuscitation unit and the ambulance gave me a print out of my heart doing 200 beats a minute. I was kept in isolation overnight (due to shingles!), and put on a potassium drip! I was LOW in potassium! I was better the next day. I went to see my GP who said the medication was not the cause of my AFib episode and dismissed me rather coldly. I have since written a letter of complaint and did get a response but they say it is just one of those things. Well, WHY HAVE A WARNING on the medication if it is not really meaning it MIGHT cause an episode of Afib???!!!

Since then I have had odd blips and then another episode on the train coming back from visiting my brother in London at Easter (a week after that last event). It was terrifying, as again, I felt the 'warning' of a tightening in my chest and had to undo my bra (somehow discreetly!! - although no one was opposite or next to me) and could barely breath and felt faint and dizzy (I am very symptomatic) and I thought, what shall I do? Get off at the next stop?? Get an ambulance? A friend was able to meet me off the train at my stop (I could barely walk!) and drive me to A&E, AGAIN!!! After 3 hours of waiting I had more ECGS and other tests and I was sent home with antibiotics (regarding the shingles and possible urine infection) and the AFib calmed down while I was there.

It is SO scary and think I might need another ablation. I am seeing my cardiologist in London at the end of May and will have a heart monitor for a week and another yearly type of check up! NO particular thing seems to trigger these episodes. No food, no drink - what is going on? I am just sitting watching TV and I feel that scary sensation coming along and hope it won't lead to anything.

I now feel afraid that wherever I go something might happen! I have been unable to visit my son and wife and my grandchildren (one only a year old) who live in the USA and the other Granny gets to visit and it is so upsetting! Yes, I FaceTime which is great. I would go but they are afraid of things happening over there!!

Do you think if I have a THIRD ablation I might be fixed? My Quality of Life is certainly not fixed yet! I am otherwise very fit and lively, despite chronic insomnia (which my GP still has not managed to sort via a Sleep Clinic). This cannot be helping my heart condition or my ageing process!! I feel I have aged in this last year!

Thank you if you have managed to read this and if there is anything you can think of to cheer me up, I shall be happy!!!

Sorry this is so long!

Fiona

[CDreamer]

Hi Fiona - yes AF can be very scary, especially with such high HR. I have learned that nearly all virus infections will trigger an AF episode, as do many meds. Before you panic, give yourself time to recover fully from Shingles. It is an opportunistic virus so if you are tired, feeling overwhelmed and anxious and emotional, you are much less likely to heal and the virus has much better opportunity to thrive as your immune system will be weak and AF episode is far more likely.

Look at how you can support and nurture yourself and learn how the calming the nervous system is SO important. Stress is THE No1 factor for AF as well as many other diseases and conditions as the nervous system is so closely interconnected with the immune system.

I also learned to check, double check and triple check meds myself, before taking a single dose. I also check with my Pharmacy - who are usually far more knowledgeable - and who on one occasion when I went to pick up my meds told me they had queried the script with my doctor as it had been red flagged on their system for an interaction with another med I was taking.

I can relate to many of the things you spoke about, I think many on this forum will but you can learn to cope and deal with the anxiety. I have travelled all over the world, gone into AF in planes, trains, boats (of all shapes & sizes) as well as just shopping or gardening. The more you panic about it the higher your heart rate and the worse you will feel. It takes time and effort and lots of practice but if you can find strategies to stay calm, sit and rest and let it pass, it usually will without the drama of blue lights - which actually make me far worse!

We had an old saying here - we may have AF but it doesn’t have us. Be the boss of it! I found that with a little careful planning you can travel - just make sure you have good travel insurance, especially with US travel.

You are very down right now and we all get like that, rest have a good night’s sleep and reassess when you are rested.

Best wishes CD

[fifitb in reply to CDreamer]

Thank you for your kind and helpful reply!

[Kaz747]

Hi Fiona

What dose of Amitriptyline were you prescribed? had Shingles last year which was diagnosed a few days after having a cardioversion for atrial flutter. The rash was just below my left breast and when I developed terrible pain in my chest and back I didn’t know if it was the shingles or my heart. I also had electrical tingling pain in my arms and legs. I was put on Amitriptyline, just a small 10mg dose (initially I was put on Lyrica but that made my legs fill up with fluid and I could hardly walk). I queried my GP, cardiologist, EP and pharmacist but they all said the very small does was fine with my heart and my heart meds. People who are on it for depression take much larger doses and that’s when it’s dangerous. I recently went back in Amitriptyline because it’s great for sleeping and when my sleep consultant wanted me to try a CPAP machine he recommended it (again I queried it and he said “no dramas”). He said he often prescribes it for sleep and also for bed wetting. I don’t have a problem with that but now I sleep through the night and rarely get up to go to the toilet.

Sorry to hear you’re having dramas. I had my last ablation just over a month ago and I now feel on top of the world. I’ve started planning a big trip for next year. After the last year I was beginning to think I’d never get on a plane again - not to any destination out of my own country anyway.

I’m sure everything will get sorted and you too will feel good again and will be able to see your family in America.

All the best

Karen xx

[fifitb in reply to Kaz747]

Thank you Karen! I got swollen ankles just afterwards and feet too, which was another scare and so horrid! My dose was 10mg once at night, like you. I wish GP Cor pharmacist could have explained - as you kindly have!

So glad you are better after your most recent ablation. How many have you had?

Thank you for your reply!

[Kaz747 in reply to fifitb]

I’ve had 4 - 2 for SVT, one for Flutter and AF (flutter was fixed but AF wasn’t) and the last one for AF which seems to have fixed it 🤞🏻🤞🏻 I also had another visit to the cath lab in between numbers 2 and 3 but they found a blood clot in my heart so they aborted that one.

[BobD Volunteer]

Can't add much to what CD and KAZ have said other than that my third ablation sorted my AF although I do still have other arrhythmias from time to time. I do agree that any inflamation will likely set off your AF and that first and foremost you need to develop strategies to deal with it without panic so that you can continue with your life. It does get easier believe me. I once had to do an engine change of a rally car in the middle of Wales whilst in AF. Not easy but when people rely on you what options do you have?

[fifitb in reply to BobD]

Thank you Bob, and yes, I know one has to get on with life but when it is happening, I feel as though I am going to die, although not every episode is like that and I do sit through or carry on when a small one is happening! Amazing you could change the engine of a rally car while having AF!

[BobD Volunteer in reply to fifitb]

Needs Must sometimes. That was some years ago !

[Jalia]

Hello Fiona, I can empathise with you.

Regarding Amitryptiline there are so many meds which carry a risk of heart problems. They really have to cover all possibilities. I've been prescribed this in the past for neuropathic pain ...it didn't help so wasn't on it for long but it did not provoke any arrhythmias.

I too have had AF start when I have been sitting minding my own business ...ending up in A&E and an 'emergency ' cardioversion more times than I care to remember.

BTW...how do you manage with travel insurance for USA as being hospitalised with AF would surely bankrupt many of us without full cover. I've found insurance rates astronomical.

Yes, I would go for a 3rd ablation as your QOL is certainly not good.

Sending best wishes to you.

[fifitb in reply to Jalia]

I have been to the USA and Canada (with AF still lurking) and my travel insurance was covered in my bank account as a regular monthly fee, so the top-up for my condition was just an extra £80. However, it is my family that don't want me to visit it as it scares them and to call for medical help over there, costs a lot and you have to pay up front!

[Buffafly]

The only thing I can add apart from my personal sympathy is to emphasize the importance of 'worst case scenario' planning which is something I do for other reasons. For example what to do if AF strikes on a train or plane? Perhaps a PIP would help? You are advised to tell a customer service adviser if you feel unwell before travelling by train, which I did when my husband felt poorly with a developing virus on Paddington station. I was only concerned we should get a seat as we had changed our travel plans but the rep took one look at him trudging down the platform and put us in First Class - bliss!

[fifitb in reply to Buffafly]

Thank you.

[Spoiler]

I am highly sensitive to drugs, the drug you took happens to be one I am unable to take. The problem with me is if I go into afib or flutter I require DC cardioversion, which I have had in a little over 3 years. Yes, I totally understand not knowing about traveling. We used to do two vacations a year, we have not traveled out of the country in 5 years since this first started. We live in the US. I read many stories of the wait to be cardioverted weeks or months later. I cannot imagine having to wait. My EP even said it was not a good idea to travel Mexico where we have a time share resort. We are All completely different, if mine would convert back on its own I would not be so fearful of long distance travel. I have had two surgerys to complete one ablation. I am looking at another ablation this year. Best to you!!!! For me it is frustration as I have complied with all known triggers and have never drank or smoked. As to the medications, I do not touch any with a 10 foot pole unless I totally research them. If it says a 1 percent side effect that seems to be me!

[fifitb in reply to Spoiler]

What an amazing reply and thank you. My GP (a new one at the surgery, who did not know me), dismissed me as if I was making things up. Why would there be a warning if the medication did not affect someone? Like you, that someone was me. The GP says it is something else. I don't believe that. What a difficult thing and varied thing is atrial fibrillation. If I get another ablation I shall let you know and if the third one works for me! Thank you for your reply. I hope all goes much better for you in the future.

[Spoiler]

I meant to say 17 cardioversions in a little over 3 years.

[MtLSteven]

In no particular order.

1. Stop being/playing a victim and become empowered.

2.See a psychotherapist.

3. If you don't want an ablation don't.

4. Read The Laundry List by Sheldon Kopp

[fifitb]

Do you have paroxysmal atrial fibrillation? Has psychotherapy helped you?