HIGHS AND OH SO LOW, LOW'S.

[meadfoot]

The high - following a wonderful holiday in Croatia beginning of June my husband and I went on a 5 day break to Ibiza, then came the oh so low, low. On last day had some irregularity in my pulse so sat by the pool all day to rest. Had a symptom free flight but on reaching the car at half past midnight back in the UK, heart flips, chest discomfort and palpation's started.

By the time we arrived home AF had kicked in and the usual pattern began. It was all I could do to get to A&E and then the storm really began. Had to get on the floor in emergency room until I was scrapped up onto a trolley as I was passing out. Then the 'fun' really began. Pulse of 212, fainting and coming round every 30 seconds or so, chest pains beyond believe.

Put onto monitor and diagnosed with Supraventricular tachycardia. Spontaneously converted to NSR, admitted to Cardiology where (for the first time ever) went straight out of SR again. Next bout was even worse and I was immediately put on Flecanide drip and given morphine for the excruciating chest pain. Fainting episodes were even worse, BP all over the place.

Kept in and constantly monitored for 5 days to be stabalised on Flecanide tablets, started with 50mg, had break through's so not enough and upped to 100mg twice a day. Now at home again, (spent my birthday in hospital) very shaken and afraid throughout - really thought I had had a heart attack and/or blood clot on lung (as did the doctors apparently). Now awaiting referral letter to see an Electrophysiologist re an ablation.

Lessons learned - my AF really has got worse; even more symptomatic and frequent; so pleased I am on anticoagulation; really grateful to live in a large city close to a teaching hospital with so many top notch Cardiologists, good EP's and research centre; staff were amazing at all levels; this forum is so valuable as I kept thinking about you all throughout knowing you all know what I am experiencing (although all our symptoms and severity of are different) and that I could rely on you guys to be supportive and informative.

Question: Been on Flecanide for a week now - had a bit of breathlessness (never had it before), and mild chest discomfort but pulse regular. What else can I expect side effect wise and are these symptoms side effects of Flecanide. On it permanently not the Pill in the Pocket approach. Also have a mild throbbing in left side of my throat since episode began.

Back in the land of the living.

Regards

Dee.

[jeanjeannie50]

Hi Dee - I'm so sorry to hear all that's happened to you, with your heart racing etc. What a nightmare it all must have been for you. It's horrible at these times because of the fear of the unknown, like is the heart ever going to stop racing again?

I had a similar thing happen to me just before Christmas when I was admitted to cardiology ward with my heart racing and it refused to go back to normal for 5 days. A cardioversion took it back into sinus rhythm for two days, then it all kicked off again and back I went into hospital. I was eventually put on Amiodarone which put my pulse back to normal, I had lots of breakthroughs while I waited 6 months for my ablation. While on Amiodarone, apart from the breakthroughs I felt really well. Had my ablation just over two weeks ago and feeling really well right now. After op my EP put me on Flecainade 2 x 50mg each day, but I came off it last Monday as it was giving me a pounding heart. Not a fast beat, but so strong that I couldn't ignore it when going to bed. Oddly enough I had a sore feeling in the left side of my throat when taking this tablet. Mind you I don't know whether my symptoms were just the after effects of the op.

Will be thinking of you. Please let us know how you progress.

Jean

[meadfoot in reply to jeanjeannie50]

Hi Jean,

Thank you so much for your response and kind support. Sorry you have suffered in the same way. Good to know that I am not alone in the level of symptoms experienced but sad you have had the same awful time.

I trust your recent ablation is successful and that you are rescued from the clutches of harsh symptoms. Perhaps we could chat about ablation once I have had my EP consultation. Also if I can be of support to you just give me a shout.

Thanks again.

Regards

Dee

[Maitha]

Hi

Sorry to hear that you suffered a lot

I'm also having some fun from time to time similar to yours

Before one month I stated flecainide 100 Mg twice a day in the third day I had breath difficulty which last two days till I stopped it

My doctor examine me carefully and insist that it was not because of flecainide and forced me to use it again

Currently I'm using it but again I got tired very quickly and short breath , I reduced the dose by myself to 50 mg twice daily and I'm better now

Un fortunatly I had bad attack just like yours recently and a cardio version where my doctor advised me to think of ablation

Another symptom I think it is related to flecainide the anxiety

It become worse and I feel restless these days

Put in mind that our bodies acting I

Different and others may not have any of these symptoms or maybe others

Hope you will feel better soon

Maitha

[meadfoot in reply to Maitha]

Hello Maitha,

Thanks for your reply. Sad you had a very similar time. Very interesting regarding your meds experience. What a harsh demon AF is. Let's trust improved meds and procedures come to the fore quickly to help us all have the normal life we crave.

Take care.

Regards

Dee.

[SRMGrandma Volunteer]

Dee, I am so sorry to hear this sad tale. I was thinking you are still on cloud 9 after your fabulous trip. Glad you have access to top notch care. You must have been so frightened. Ditto for your family. Ive been having trouble accessing this site since they made all the format changes. Much harder to follow everyone. Please know i am praying for you. Please be well and keep in touch.

[meadfoot in reply to SRMGrandma]

Hello SRM Grandma,

Thank you for your support the prayers. Yes from cloud 9 to zero in one fell swoop. Had just got my confidence back and beginning to feel like myself again having regained my usual enthusiasm. Back in the mire again but endeavoring to claw my way back to normal. Plan to spend the morning counting my blessings rather than dwelling on feeling like an invalid. I have a zest for life and don't like the doom and gloom state of mind. I also have my first grandchild to look forward too with Suzannah's pregnancy going well - 18 weeks and counting - not managed to get this far before.

Sorry you have had recent additional health challenges and trust you will soon be back on top form. Take care and thanks again. It's people like you and other 'postees' who keep our spirit lifted.

Regards

Dee.

[lizzily]

Oh Dee,

What a dreadful experience and how frightening. Do hope the Flecanide keeps things in check until you see the EP and sort out an ablation.

I have only just read your post. I used to get notifications straight into my e mail inbox and thought it had been very quiet for a long time. Is this one of the changes I have read about?

Thinking of you, Liz

[BobD Volunteer in reply to lizzily]

Dee so sorry to read your posts and like many sorry this forum has fallen apart. I alerted AFA the first day I couldn't get anywhere with it and people are working to put it right. I always find "improved" or " new formula" means trouble but sure we will be back to normal soon. In the meantime please keep us posted.. AF is often a long journey but you have some good travelling companions here and it sounds like you have a pretty good map where you live.

BobD

[meadfoot in reply to BobD]

Morning BobD,

Thank you for your good wishes. Yes I do have good travelling companions and while in hospital (especially in the starkness of the night), I thought of this forum and all the great people out there who would know exactly what I was going through.

Do you, by any chance, know if a list of EP's exist with outcome ratings? Would prefer to know before I succumb to the care of anyone allocated to me. Better safe than sorry !

Regards

Dee.

[BobD Volunteer in reply to meadfoot]

Dee, there is a list by area of EPs but I don't think anybody has a a list of success or failure ratings. It has been suggested that asking your EP how many and what ratio of success may help but the problem is in defining success. IT is till early days in AF treatment and the long term outcomes are still uncertain. I understand that there is a 50% chance of AF returning within 5 years of successful ablation . I am now a little over five years and whilst still no measurable AF I did have a funny a couple of months ago with some tachycardia for about an our although nothing showed up on later ECGs. I also occasionally get weeks where ectopics can be a nuisance. To me that is success and I would do it all again for another five years if needed!

BobD

[meadfoot in reply to BobD]

Hi BobD,

Thank you for your response. I will research well, not something to let someone loose on without prior consultation. I hope you keep free longer still but can identify with your 5 year comment. Such a rogue condition and hopefully ablation procedures have improved in the 5 year interim and will continue to do so. Eventually they will crack it altogether. We have to keep the faith.

Regards

Dee.

[meadfoot in reply to lizzily]

Hello Liz,

Thank you for your support. Flecanide is a big drug - 'a big gun' according to cardiologist, which is a tad unnerving but hey ho, needs must. Think I will see GP to chivvy up hospital referral as currently I will get the first EP with free appointments which might not be the best one. Need to take control of our destiny where we can.

Take care and thanks again. Like you I will be pleased when this site is back to its best.

Regards

Dee.