Any advice on atrial fib please.

Posted , 6 users are following.

I am an a.fib sufferer, have been for over 8 years.  I have been on Sotalol for 8 months now, it was very good at first at controlling my attacks, however, recently I've had several attacks and unlike before when they were at random times where I ended up in A & E, they now always happen overnight, usually from midnight to 1.30!   The attacks very often wake me up, I then try several deep breathing things etc but to no avail.  I then do what my cardio said and take an extra Sotalol until it calms down.  It's happening too frequently now and I haven't a clue why.  The last one didn't calm down for several hours, and I feel I am getting too used to these meds.   Anyone else find this sleep attack phenomena?  I hate it and get anxious which I know makes it worse.  I do suffer with GERD and am on omeprazole.   Please folk, some advice. 

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15 Replies

  • Posted

    Hi Pauline, I also have had A Fib for 7 years. I've had two ablations numerous cardioversions etc etc. I'm currently on flecanide 50 MG 2x/day. But the thing that has helped me the most hands down is the FODMAP diet. I also suffer from various food sensitivities and GERD. This diet has changed my life. I'm in control if it now. It doesn't control me. If I stick to that diet I'm good if I don't I have problems it's that simple. Give it a try. Numerous people on this for forum use this FODMAP diet and all that I know of have had really good success with it. You have nothing to lose trying it.

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    • Posted

      Thank you sandi, very helpful info.  Can you tell me the best website for this diet please, I have been searching but find it a bit confusing to find the basic information.  Keep up the good work,  I went to my GP today and he said a.fib is common whilst sleeping, something to do with blood and circulation.  He's upped my Sotalol now, I'm just desperate for a good nights sleep!  All the best to you, are you in the u.k?  If so where best to get the diet food from?  

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    • Posted

      Hi Pauline. I'm from.Canada. I found the most reliable source for this diet is from Stanford University in the US. I don't have the website anymore cause I just go from a copy of the diet but you should find it with the following information: Stanford Hospital and clinics - Digestive Health Center Nutrition Services - The Low FODMAP Diet. Hope this helps you please let me know how you do with it. Us A Fibbers have to stick together smile lol

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    • Posted

      Oh my goodness, I am so confused with this FODMAP diet.  I had a quick look today before shopping, and one site said Cottage Cheese was on the low list, so I bought loads, only to research later on another site to find that it is on the High list, so I am really confused.  When I tried the Stanford Hospital site, it crashed my computer every time ....  I have bought gluten free bread and milk, so there's a start, but each site I look at states you MUST do it through a dietician!  Are you going that route?  I will definitely keep researching until I find one that I think that I can trust, keep well, and yes we must all stick together.  There are half a million of us and I personally don't know one person.  Wish I did. 

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    • Posted

      Hi Pauline sounds like you are having troubles with that diet for sure. Ya I gates there seem to be many variations of it however I found that that Stanford one the best and most sensible. If you want I can send you photos of mine although there will be markings from my own use on the pages but it is the Stanford University one.

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  • Posted

    I too was on Sotalol. I was in the hospital and a Doctor prescribed it for me. IT WAS TERRIFIC. I was used to so much AFIB & fluttering but this new Sotalol was a blessing. I couldn't believe how great I was feeling.

    However, after three (3) or four (4) years on Sotalol it apparently LOST ITS EFFECTIVENESS. I couldn't believe it. First drug I had used for AFIB which made me feel Super for three (3) years & then Whammo - JUST STOPPED WORKING.

    CONCLUSION

    For some unexplained reason Sotalol just loses its effectiveness after X amount of time. Each patient is different.

    After being off it for many years I wanted to try it again. However, A patient can only receive Sotalol if they are a hospital in-patient for a few days. One must be monitored while on this drug for at least 3, to 4 days.

    Well - all of the above is my story. Hope it helps you in someway.

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    • Posted

      In the UK, where I am, there is no requirement to be a hospital in-patient before going onto Sotalol. I have been on it for about two years, starting it a year after first experiencing AF. It's been fairly effective, but recently I changed my daily dose from 160mg (split) to 240mg, because I was getting increasing bouts - weekly rather than three-weekly (and mine last 24 hours or more, though not that uncomfortable).

      And even on 240mg, my bouts seem to be becoming more frequent again. So perhaps you are right about losing effectiveness. I am hoping to get catheter ablation before the year is out.

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    • Posted

      Thanks for your reply BampaOwl.  No I didn't have to go into hospital, my GP rang a cardiologist who gave the o.k. for me to go on Sotalol.  It does seem as if it loses effectiveness, which is a pity as I found it good to start with.  I don't get the very fast heartbeat now, just out of rhythm which terrifies me, but I have to say I am getting used to it, and try not to panic now.  Whereabouts are you in the U.K. for your ablation.  I am not sure as I have read so much about these things not working, so I wish you all the best for yours when you eventually have it.  Keep well, hope the Sotalol does the trick. 

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    • Posted

      I'm in Central Scotland. The availability of Ablation seems to depend (among other factors) on what Electrophysiologists are available. My hospital cardiologist was not over-keen on ablation until this new Electrophysiologist came along. I have a couple of friends who have had ablation with great success. Others have different experience. I think a problem with these forums is that you see all the horror stories but not the successes.

      I'm assured by my GP that as long as my INR is controlled (with Warfarin) AF bouts are not of themselves at all harmful. No need to panic!

      Best of luck!

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  • Posted

    Dear Pauline

    My advice would be to discuss this with your medical team. Your consultant and gp. I feel sorry that you should be on your own worried and suffering. I am an AF sufferer but fortunately do not have your symptoms. You must get help from the medical staff that have been treating you. Good luck Pauline I wish you all the best. Don't suffer on your own. Therapy Girl

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  • Posted

    Hi Pauline

    I too have had afib for 7 years. To begin with about once a month lasting 3-4 hours. I didn't know what had hit me as I'd never heard of the condition. They never though, happened at night. When I finally saw a cardio he prescribed Flecainide which made my life bearable again. The attacks decreased to about 3-4 a year and were much less violent than before. I'm one of those people who react very badly to afib. I get incredibly anxious and just feel terrible. I know a lot of afibers cannot take Flecainide but I do not have any side effects. However, whereas I started off with 100mg p day, I have (after 4 years) progressed to 150mg. But it still works well. You must have a structurally healthy heart to take the drug. Presumably you have had an echo? So you'll know.

    I also suffer from GERD and there appears to be a connection between the two via the vagus nerve. Put it into Google and you should get some links. I also take Omeprazole but only on an ad hoc basis. I think it may stop meds from being absorbed properly since the O. reduces the production of stomach acid. Not sure about it though. I try not to eat in the evening as a full stomach is very uncomfortable at night. Don't know if any of this helps. Are you on anticiagulants?

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    • Posted

      Thanks for your reply Barty11, good to know other people are going through the same.  Regarding getting anxious, my acupuncturist recommended Bach flower remedies, White Chestnut drops along with Mimulus drops.  10 drops of each in 500 ml of water, and sip it during the day.  I must admit it has taken away the panics I usually get when I go into A.Fib, give it a try, its purely natural stuff.  Regarding GERD if I don't take my Omeprazole every other day I begin to get the symptoms of acid, wish I could stop it, its a bad drug.  Yes I am on Dabigatran, one of the new anti coags, so far o.k.  Are you?  I know there is a definite link with the Vagus nerve too.  Maybe you should give the FODMAP diet a go, I am going to try it but am finding it confusing, some websites give differing info.  But will keep searching.  All the best. 

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    • Posted

      I am so cross with this ipad. I wrote a long reply a couple of days ago and when I tried to send it, it crashed. Everything got lost. 

      Anyhow, about anticiagulants: I refuse to go on them (my af bouts are quite rare and never ladt more than 3 hours) because the new ones do not have an antidote - except for Pradaxa. So every accident can became a drama as you can bleed to death. Just falling off the bike can develop into a life and death situation. The NOAC have a short life of at most 12 hours but you can lose an awful lot of blood during that time if the accident happens just after you have taken a dose. The reason all doctors insist on afibbers taking anticoagulants is because NICE guide lines tell them to. If you don't take them and you have a stroke, they are covered since they recommended their use. If you have a bleed (stomach bleeds are more common with NOAC than Warfarin) or an intracranial one, they are also covered because they just followed guide lines. My cardio admitted, that blood clots usually take about 24 hours to form and since I have never had such a long period of afib, I shall not follow their advice. I take Omega 3 and a daily baby aspirin. I bleed enough with that if I cut myself. Of course, if afib is persistent or continuous anticoagulants make sense. 

      Pauline, I take the Bach rescue spray and the pastilles but I don't think it really makes much difference. It can't do any harm though. 

      What I find really important though, is that my BP and heart rate remain within guide lines. I do take antihypertensive drugs but still check my BP obsessively. If my pulse rate goes above 85 I take an extra 1.25 Bisoprolol. I can feel it when it accelerates just as I become immediately aware of an afib attack. Terrible, the feeling of doom which accompanies it. I sometimes take a Valium to calm me down. I shall try to send this again and hope for the best. Otherwise I give up. 

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    • Posted

      Thanks Barty for your reply, so sorry it crashed!  I get what you mean about anti coags, but I've had a  several attacks.  I'm on Pradaxa.  My GP won't give me Valium unfortunately.  You're right it is so scary, I hate it.  I also take a b.p. drug Ramipril.  Yes I had an echo, cardio said I have 2 leaky valves, come back in a year!  Best wishes anyway.  We somehow have to try to keep calm, not easy. 

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  • Posted

    Hi Pauline,

    i was born with a heart murmur and this has turned into mitral valve regurgitation at 64 years of age. I have had two bouts of AFIB. The second one was taking a beta blocker called Metroprolol ER. I too was awoken from a sound sleep by a pounding heart at 2:00 AM. In the morning i checked my EKG with a portable unit that i had purchased, and it showed AFIB [ no p wave and a saw tooth flutter ] I went to the hospital and they changed my meds to sotalol 80 mgs and performed a cardio conversion on day three. i have never been able to stop the AFIB once it starts and the diffib shock  is the only was to get back to a sinus pattern for me. Best of luck to you

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