Draining.: Hi! I haven't been here for... - Atrial Fibrillati...

Atrial Fibrillation Support

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margar17 profile image
13 Replies

Hi! I haven't been here for a while, but I wanted to post this comment re AF.

I've had it for a few years now and have researched it extensively. The info is usually all very clinical and doesn't give the story of actual sufferers and their reactions to this very unpleasant condition. For myself, each episode of AF is very draining. I have experienced episodes lasting up to 13 hours! My most recent was last night and continued for 10 & a half hours. Each time, I'm emotionally & physically tired out. In 2015, I was fitted with an ICD Defib pacemaker, because on one occasion, my heartbeat was so rapid, in the lower chamber,my cardiologist thought I'd collapse. I'm on Bisoprolol 5mg, twice daily. The episodes are a matter of weeks apart, not months or years. I'm also on Apixaban, twice daily. Sorry if I'm going on, but I felt the need to talk about it with other sufferers. Thanks.

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doodle68 profile image
doodle68

Hello margar17 :-) my experience of P-AF is similar in many ways to your own . I don't have a pacemaker though.

I know that feeling of mental and physical exhaustion but living alone I have to go on as best I can. My last bad episode lasted 12 hours with shaking legs and breathlessness but I am no longer fearful knowing I have got over other episodes and will get over the current one.

I do those things I have to do (like staggering down the lane with my dog) and I rest when I can.

I think AF affects us all differently , some having more symptoms than others and I feel Doctors may not full appreciate this and lump us all together.

Have you had a check with your GP recently, if not it might be worth having a chat with them.

Hello Margar, really sorry to hear that you are having such a difficult time at the moment. Clearly you have had some professional medical help, but I wonder if you have been referred to see an EP (Electrophysiologist) who, as I’m sure you know, is a cardiologist who specialises in arrhythmia. There are alternative treatments available and they best placed to determine what might be the best course of action for you. It’s probably better if you can identify one near you who has a good track record and then ask your GP or Cardiologist to make the referral. Alternatively, you could seek a private consultation which would cost between £200 to £300 but be careful as any tests would cost extra. Also be sure they understand that any further treatment would be done by the NHS. This will, nor should it, reduce any waiting times for ongoing treatment, but you will feel better knowing that things are happening to help improve your situation.....hope this helps, John

margar17 profile image
margar17 in reply to

Hello, John. Thank you for your suggestions. I did pay privately to see my preferred cardiologist, and further treatment was on NHS. But I have never been referred to an electrophysiologist. I had my implant in 2015 and was given a home monitor, which I use to send my heart rhythm info, by wireless, to my hospital. This is done regularly, with annual checks made at the hospital, too. I can't fault the treatment I've had, we're fortunate here in West Somerset to have one of the best hospitals in England.

souljacs4 profile image
souljacs4

Bisoprolol made me very tired, I only took 2.5 mg a day but it wiped me out and I gained three stone had to stop taking it, I have now managed to lose the weight which has helped a lot

margar17 profile image
margar17 in reply to souljacs4

Hi. I haven't given a thought to Bisoprolol making me tired and gaining weight. But i experience both! I try to lose weight, with healthy eating, but it won't shift. I also suffer from BPPV, an inner ear condition. This seriously affects my balance to the point where I can only walk around the house or a few feet outside. So the brisk walks I used to do regularly are no longer possible, nor any sort of workout. Damned if I do & damned if I don't!

in reply to margar17

I too fight weight despite watching my diet and going to gym. I take Bisoprolol once a day and changed taking it from am to pm I think I'm less lethargic doing this

Zabadak profile image
Zabadak

Since changing from bisoprolol to verapamil I have been much better. Episodes less frequent and don’t last as long. Tiredness better, though when I get an episode of afib I am so breathless for days after.

WendyWu20 profile image
WendyWu20

Sorry to hear you're feeling so ill with the AF. Maybe you could discuss the possibility of trying different medication, with your doctor? We all react differently...neither verapamil or bisoprolol worked for me, in fact I suspect they made me feel worse. I had weekly or twice weekly AF episodes for most of last year, and felt breathless and exhausted just resting. Now I feel tired but only breathless when I walk about, so it's an improvement. I've also lost weight and eat more healthily, so that is easing the load on my heart.

Now I only take flecainide 50mg twice a day, with an option to take more when an episode starts - happy to say that they only last 8-12 hours instead of 3 days :o)

So maybe have a chat with your doctor, so you can consider your options for a combination of medication changes and lifestyle improvements? In addition, I find it very useful to meditate, to help stay positive. There are lots of CDs or meditation videos on YouTube, that are really good.

Hope you feel better soon :o)

margar17 profile image
margar17

Thank you to those of you who have given me suggestions. It is much appreciated.

souljacs4 profile image
souljacs4

If you put bisoprolol in the search box top of page you will find posts about Bisoprolol and tiredness.

Chris147 profile image
Chris147

I think the drugs do help but the side effects can be hard to deal with. I take bisoprolol 5 once a day flecainide 50 x 2 and amlodapine. I know that they make me feel tired. I push through some days and others I can't do as much. I think it's all a compromise but it has certainly changed my life and I feel sad and angry at times. I hope you get sorted out and your symptoms improve. I am just thinking about taking magnesium people seem to think it helps. I have PA F with short runs of ectopics but Christmas day ended up in a and e the virus I had affected my heart and it was racing. Not quite what I had planned. I am currently going to an anxiety and mindfulness class twice a month so hopefully that will help. Mindfulness has helped me so i will continue to give it a go. We all live with this horrible complaint and i am so glad we have this forum. Very best wishes Chris

BevCynfelyn profile image
BevCynfelyn

Bisoprolol 5mg makes me very tired so I take it before I have supper as I also take the second Apixaban 5mg and Flecainide 100mg tablets at that time. I find I am a lot less tired during the day doing it thiy.

BevCynfelyn profile image
BevCynfelyn

sorry last post should say "doing it this way".

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