New to Afib, misinformed and a bit scared!

So do you go to the ER evetime you have a flare up?

Kate,

Thanks so much for taking time to send such a great response. When I finish my month wearing the heart monitor, they want to discuss doing the 'maze' procedure on me. That will get interesting!

Take care, have a great holiday.

Ugh a maze procedure is a bit outdated? I wonder if they have a particular reason for it? Here in the UK another ablation would be more normal. I had 3 and now live life AF free.

Was it scary - no not to begin with. I've had it a long time and I knew what it was (medical family / inherited condtion). The episodes were self terminating. All I had to do was stop what I was doing and preferably go to sleep. Not always possible of course! I was up a mountain in Mallorca when I had an episode, which was not ideal!

Remaining calm is probably quite important but when your heart beat is lurching all over the place its not that easy! Once the episodes reached a certain length I made sure I was on anti-coagulants. I did not want a stroke.

I think its a good idea to learn how to check your pulse and acquire a blood pressure monitor. Ask your doctor about acceptable rates

Have you been able to work out if there are any particular triggers to your episodes? If you look at other peoples posts you will find quite a few notably alcohol and cafffeine. Its worth taking time to try and identify these and try to avoid. 

It was not until my episodes became quite severe  -( they WERE scary!) that I started to call the GP or an ambulance. I became very short of breath and found moving difficult. Episodes did not terminate with a pill in the pocket strategy with Flecainide. Something to ask your docs

about?

When the GPs simply started calling ambulances for me I did it myself!

Do you get used to it? Yes! Looking back on it I became quite blase about my hospital trips to A&E so often did I make the trip. Its amazing what you can get used to...Not sure about being recognised by nurses in the EMU though...you here again! Made me squirm! 

How do you gauge the severity of an episode? Well for me, it was the aftermath..really knocked me about so that I felt as if I was newly convalscent - fatigue and lassitude due to lack of oxygen I expect. 

Okapis, What an amazing response! Thank you so much for taking the time to record your thoughts, they are very helpful. 

I'm not looking forward to any upcoming procedure, I found the ablation procedure painful and incredibly unpleasant, but i would gladly submit if it alleviated my issues.

The major trigger for me seems to be night fall! The shortness of breath and racing heart seems to come on around bedtime, just in time to interrupt my sleep pattern. They get worse when I lay flat, thank goodness I have an adjustable bed! 

I've had multiple discussions with my doctors and the meds have been helping. I've been wearing a heart monitor for a month, I send it in tomorrow, I'm eager to get the results. 

I'm really struggling right now, my quality of life is shattered. Hopefully we will have a solid game plan in place soon. Thanks again for giving me some of your valuable time!

 

Nightfall would be a trigger I've not heard of before! What were you doing beforehand; Eating something specific? Drinking soft drink /alcohol. Could all contain triggers.

I found it impossible to lie flat during episodes too - needed to be slightly propped up.

I'm sorry you found the ablation unpleasant. i must say I found the first one pretty awful. I was sedated not given a GA and kept coming round - (pain from my back an inflammatory arthritis). A nightmarish scenario where I could hear what was being said including "she's moving again" followed by more sedation again and again. The net result was that I did not come round after a very long procedure (7 hours and I was the first one in) until the early hours of the morning and found myself in a ward. Felt like a dead dog  - not that anything dead has feelings but you get my drift!

Fortunately the hospital moved the catheter ablation unit to another hospital, a postgraduate training / teaching hospital in London, changed policy and started giving GA's for the ablations. Much to be preferred from my point of view.

Hope you did not have sedation only ! My 2nd abaltion was better but still not a walk in the park especially since I developed sepsis after it but the 3rd was excellent...much to my relief - different doctor!

Lets hope the monitor nails whats going on in your heart. (thats not the right verb!) AF can be a pain to catch over short periods but a months worth should show whats going on

Your quality of life will improve if youre in paroxysmal AF if thats the problem. Not so easy with Permanent AF but you've acted early so thats good!  

What a nightmare! That sounds remarkably familiar to my sedation fiasco. I warned them about my high tolerance to meds but they did not give me enough juice. They went through an artery in my leg and I was aware throughout, I even had dialogue with the surgeon. It was very uncomfortable, but not searing pain. That happened afterwards when they had to apply direct pressure to the two entry points, that were basically large puncture holes, for 15 minutes to ensure there was no bleeding. It was level 10 stuff. I had some dialogue at that point as well, and I'm sure they thought I possessed! I still haven't received the final prognosis, I'm wanting to get that over with and move forward. I would kill for a goods nights sleep. 

We love London by the way, we have many great friends there. We try and get over a couple times a year. Our friend has a flat in Shepherds Bush and she puts us up. We spend a fair amount of time visiting friends in Chichester as well.

Hah just moved out of Shepherds Bush to the country beyond Salisbury!

And had a good nights sleep yesterday night! Phew what a difference it makes! 

I use a wedge pillow and sleep on my side, switching sides as the night rolls on. it really helps!