HELP. My AF has returned with a vengeance. it was diagnosed approx 3 years ago. I was prescribed Amiodarone and placed on a list for a cardioversion. Just before the cardioverion the Amiodarone I had been taking for 6 weeks kicked in and I returned to NSR and the CV was cancelled. The Amiodarone worked well for 18 months but the symptoms of the subsequent over active thyroid were making me so miserable and ill that I made an appt to see an EP for a one off private consultation at The Spire Hospital in Cardiff. That was last June, 2018 - he changed me onto SOTALOL 80mg twice daily (also taking RAMIPRIL 5mg, RIVAROXABSN and LIPITOR). It worked until the end of Dec when I had a bout of AF that tailed off after 5 days. (My father was dying and I was rushing about with numerous 100 mile journeys backward and forwards between him and a partner at home being treated for Stage 3 lung cancer - nightmare!) 10 days ago IT has returned again and not stopped this time. I feel very ill, very breathless and just exhausted and anxious and every day I am sure I am not going to make it until tomorrow.. I had an emergency appt with my GP last week who advised me to go to A&E if my pulse was fluctuating up to 150 again as it had been. I have a Boots monitor and though my heartbeats are in the lower range now (around 60 to 100) my blood pressure is unusually very low for me, sometimes 80/60. I know a little knowledge is a dangerous thing, but I have been Googling and read that this can be a sign of heading towards heart failure. I really don't know where to turn. My partner who has lung cancer has a lot of support and numbers if he can ring if he has any problems, but what are my options?? The GP cant help: if I go to A&E they will just monitor me until things settle then send me home: you cant just ring up to see a Cardiologist; if you are referred via your GP there will be the inevitable waiting list. He was not very helpful anyway which is why I approached the EP. I don't even know what my options are now. Would any other drug help? Should I ask to go back on Amiodarome - that might not be an option though. I have an enlarged heart on the left side. The EP explained about Cardioversion but also about the stroke risks and the fact that the enlarged left atria might not help. i am at my wits end. I have been on and off here the last week looking for people who may be in a similar situation but thought I might as well put my situation on here and see if anyone could advise me. I think my only option really is to to make an appt back with the EP? In the meantime, would anyone advise my increasing my Sotalol myself and should I keep taking the Ramipril with my BP dropping so low?? Sorry this is really rambly and negative, but I have got myself into a state and don't know where to turn. Here goes....posting this now
Don't know what to do.: HELP. My AF... - Atrial Fibrillati...
Don't know what to do.
I'm sorry to hear about all the stress you have right now and I know just how you are feeling AF wise and it's horrible. Please go and see another GP at your surgery, the one you mentioned sounds really uncaring. Drinking plenty of water can help raise blood pressure. I wouldn't go back on the Amiodarone if it messed with your thyroid making it overactive. It made mine under-active and now I'll be on medication for life.
Are there AF nurses at the hospital where you were going to have your cardioversion? Could you ring and ask to speak to one of them?
I guess you know that your 60 to 100 heart rate is considered quite normal, though we all hope ours will be lower, rather than 100. Please don't suffer insist on getting some help.
Big healing hug.
Jean
Thanks you so much. You are right about the water. I keep forgetting and you always feel worse when dehydrated. I felt so tearful when I was writing that and feel a bit of a wimp on re-reading it. My brother had a bad stroke on his 60th birthday (before the party and had not had any alcohol) and we only found out later that he had AF. One of these guys who wouldn't go to the doctor however much I'nagged', so I am trying to take preventative measures, but it just gets so scary when medication doesn't work and you are running out of options. Re; GPs, the ones I have seen seem reluctant to change heart meds, but ok with the BP medication.
Be aware there are a lot of drugs that may help which GP's aren't allowed to prescribe. Flecainide is the most popular and effective drug right now.
Thanks Jeanjeannie I will ask about the Flecainide - I have have an appointment for a one off private consultation with the EP i saw previously.
Good luck. Please let us know how you get on.
Thank you very much 
I will do
I have no magic wand but can send you a Cyber hug. Chin up! xxxxxxx
Oh dear, you poor thing. What an awful time you are having. To have to deal with your poor dad and your partner too while suffering Afib and feeling so poorly must have been hellish.
In terms of options I would say that your GP is right. If you have an episode of sustained Afib you really should go to A&E. They will monitor you and hopefully capture your AFib and low blood pressure. With that evidence they will then refer you to the right person. You are right about waiting lists but it’s better to be on a list than just having no idea which way to turn. I recently had a referral to an EP, it took 10 weeks to come through but that’s because they couldn’t get some paperwork they needed. I was utterly desperate like you and the EPs secretaries really didn’t mind that I called every two days for the last two weeks to see if they knew when I would be seen.
I can’t advise you on medicine but I can say your post isn’t negative and rambly, it is actually very familiar. I ended up here feeling as upset and scared as you only a few weeks ago and it’s been the best thing I’ve done.
Take good care ❤️
Thanks, may go tomorrow morning as this is not getting any better.
Thank you. I know a lot of others have been or are going through the same worrying situation as me, but I do feel very alone with it. Atleast I do live very close to the hospital and will take the advice on here and go to A&E tomorrow. The low BP is particularly worrying me - 80/60 - right now as this is something I have never experienced. It is always on the high side.
I hope you feel better soon, it’s hard to find the strength and courage to start the process of sorting through the mess you feel you are in, it is so overwhelming but honestly every tiny thing you do will get you closer to feeling like you can get to the bottom of what’s going on. Get checked out in A&E if your heart is in Afib. For the low blood pressure make another emergency appointment to see the GP. Tell them the impact this is having on your life and how bad you feel both physically and with the anxiety and if you still feel like you’re not getting anywhere go back to your doctor again and again until someone helps you. It is very isolating when you feel poorly and you don’t know where to go for help, keep posting here I’ve found it’s a good way to let some of the fears out. It really helped me to feel like I had something to hold onto while I waited for various appointments etc. Take good care and let us know how you get on today. 😊
Thanks Kellyjelly. I did not go to A&E but have made an appt to see the EP I saw last time for a consultation. The AF seems to be here to stay this time - still constant for the past 10 days but does seems to have settled below 100 now, which feels a lot 'calmer' than it was at the beginning of this episode. Still extremely breathless on the slightest exertion and my heart feels as if it is trying to escape. I have slept a lot the last couple of days. It has helped posting on here and reading that other people are going through very similar symptoms and fears, but are still around the tell the tale!!!
Thank you for letting me know 😊I’m sorry you are still feeling so rubbish but glad you are sleeping and resting and really glad that you have made an appointment to see the EP. Hopefully you won’t have to wait too long to see him and you can start to make a plan to get you better. Take really good care and keep in touch. This place really is a lifeline when you feel like this x
I'm so sorry about your really difficult circumstances Amy Rosie. I can only offer the suggestion that as jeanJeannie has mentioned you might find the person with the most time to listen and help indirectly is one of the Arythmia (can't spell it) Nurses connected to your cardiology department. My own experience was that the one I consulted in my unhappiness with my suggested treatment plan was by far the most helpful of the various professionals I saw, and spoke to my consultant to help achieve the satisfactory to me plan I currently have., which has kept me steady for two years so far. She had the time to spend with me in my individual circumstances, not as a body on a conveyor belt. I hope you might be able to give a chat with such a nurse a try...ring the hospital cardiology department directly if this approachn appeals.Very best wishes.
Thanks off the record. Yes having someone approachable who had the time to listen and treat you as an individual must have really helped and reassured you. I did meet members of what must have been that nursing team in a pre-cardioversion assessment a couple of years ago. They did an ECG but because I was back in NSR (the Amiodarone had started to work) they discharged me. I don't have any contact numbers. I have made an appt to see an EP in a couple of weeks.
Thanks for your reply Amy Rosie. ...my contact with the Arythmia (must check that spelling) nurse came after I was prescribed and obtained Amiodarone prior to cardioversion and decided this was not a route I was ready to follow. I was and remain symptomless despite an erratic heartbeat and slightly enlarged heart ...discovered when I went to the G P fir a routine blood pressure test due to my age.. 67 then,..BP not a problem then or now. When I decided I didn't want to take amiodarone I rang my cardiology department and asked to speak to the nurse...not the doctors. She negotiated on my behalf with the consultant. I've never met her...she was brilliant. I now have an echocardiogram annually, no deterioration as yet, and carry on as before the BP check with Rivaroxaban, which I reluctantly do take.
We are all individuals ...I never had or have outward symptoms, I dislike medication. ..no contraceptive pill, no HRT, no statins, only the anticoagulant. This would not sit comfortably with other women. I don't have other problems of older age either as yet.....diabetes, high BP, overly high cholesterol etc etc. I have a simple diet , very little meat, and drink very little alcohol. When things settle for you diet might be scrutinised to see if a factor in this at all.
PLEASE don't be afraid to keep asking for the information and advice you need until you feel more supported and have a network to access.
Again I send my very best wishes to you. Kindest regards.
Sorry you are going through such a hard time. My progression with PAF was about the same. Medication worked up to a point and then not. Last year I went to the hospital 10 times in 6 months. 8 times by ambulance and twice for heart procedures. I almost ended with a electrical cardioversion every time. I had very fast AF One of the hospital visits was for heart failure. I also became breathless with BP either very high or very low. I blacked our 3 times in hospital and was black and blue and acquired a broken front tooth that had to be extracted. My last medication was sotalol which is supposed to control your BP too. MY EP discussed the ablation route with me and as I also have an enlarged left atrium he told me my chances of success is 30%. IN the end I chose to have an pacemaker implanted and an AV node ablation. The 2 procedures were a lot less stressful than my emergency hospital visits. I immediately went off the sotalol. I also have ME and has been in a wheelchair for 5 years and bedbound for almost a year. Since my heart is now settled and I am an no medication which has side effects, i am a new woman. I am doing aqua therapy to become more mobile and is now going out again at times without my wheelchair. I am now trying to deal with my ME which is a chronic disease but life is much better. Be pushy to get what you need. My GP is useless. When I had to wait too long for and appointment with my EP I paid for an private appointment to see my EP earlier. After that I saw him on the NHS but I got his nurses tel no and email and if I needed help I would contact her and he would phone me back. When I went into hospital I emailed him and he organised my care in the hospital. For the first time I felt supported and that I was properly treated. He even visited me when i was in hospital even though he was not on duty.
I believe that if you have ME and your heart is affected then you should be treated a bit differently to others. Have you researched your problem on the web? I found Dr.Myhill (drmyhill.co.uk) made sense to me although the medical establishment discredited her at the time because back then they did not know that ME was caused by damaged mitochondria. (They tried to tell you it was all in the mind although it is true that stress is very unhelpful for the body to function properly.). You probably know that mitochondria are the base of the energy supply to the cells and if they do not function properly the cells run out of energy. This is why you can only do so much before you conk out. Your heart has to work harder to get the nutrients which the cells are demanding but not using efficiently. This is why your heart is affected. Research ME and heart problems. I have found the trick is to pace yourself. Do you have a candida problem? Have you had a blood test for anaemia? Good luck with it.
Thank you I actually know dr Myhill personally. Went with her when she received prize for people choice health book a few years ago. I became a ME ADVOCATE when I was bedbound and have a page I admin.
facebook.com/MillionsMissin...
Do you have ME too?
Currently I am trying LDN
I had ME badly 36 years ago when I picked up an infection in hospital which was treated with multiple antibiotics and then got glandular fever from a friend’s daughter. It took 2 years for the GP to recognise that I had it and that only because I found out that by sending x cubic centimetres of blood to Prof Mowbray at St Mary’s Paddington,which I sent to him in a Jiffy bag , I could get a diagnosis. He replied that I had def got ME. When I showed his letter to my GP he said ‘oh there is something the matter with you after all Eva. You can never tell with women of a certain age!’ He then sent me to the John Radcliffe in Oxford who told me that I had def had glandular fever cos I had the antibodies for it which I would not have had if I had not hand glandular fever. Apparently the glandular fever test if done at the wrong time does not show it. The young doctor at the John Radcliffe told me what to do and I gradually got better although when I fly I still need a wheelchair cos cannot cope with all that walking and standing at airports.
Lucky you knowing Dr. Myhill. I had desperately wanted to see her but she was not taking any more patients. Can she not help you with your ME/heart problems?
I have just looked up LDN. Is it helping you?
Good luck.
Yes I have more energy but it’s early days. Worthwhile trying.
Wow Bettiehough, what an incredible story. You have been through so much and to hear all the things you are doing now and how much better you are feeling is brilliant. It must have taken such determination and strength at times but your story really shows that if you just keep going and stick with it eventually you can get there. What a really helpful post 😊
Don’t be afraid to go pacemaker route if your EP advises it. I bypassed the whole ablation route and am so thankful for that. Good luck with your Health
Aw Bettiehough, you have been through a complete nightmare, but looks as if you have come through the other side. To have all that going on as well as ME must have been an almost impossible situation. I am glad the pacemaker has worked - I don't know if that would be suitable for me or the AV node ablation. When the EP was discussing a possible ablation what I can remember most of that conversation is the stroke risk, as my only sibling had a really bad stroke on his 60th birthday, which has left him in a nursing home with no movement on his left side. Also like you, the EP said that it may not have a big chance of success because of the enlarged left atria. I hope to maybe switch to some other medication, though they all probably lose their effectiveness in time as well. I don't think they will let me go back onto Amiodarone because I still have overactive thyroid from the last lot! All the best to you with the ME and hope the pacemaker keeps the AF at bay!!
My sympathies go out to you. One thing that jumped out at me in your post was " shall I increase my Sotolol." On no account play around with your drugs. Sotalol is one of the "Big Boy Medications" and you should only increase your dose on the instructions of your EP. Even your GP may be wary of changing your dose without first speaking to your EP. It sounds as though you have been through a very stressful time of late and it is not surprising that AF has ventured back in your life. Stress is a terrible condition and is quite often the guilty party for bringing on AF. On my last visit to the GP a month ago, she advised me not to get stressed about the AF but just try and do things to keep your heart rate down to below 100. Things that can help are breathing exercises using your belly to breathe and also meditation is supposed to be quite helpful. I strongly suggest you get a referral/appointment to your EP. You must concentrate on calming yourself down which I know is easier said than done with all the problems you have in your life. Good luck is being sent over the oceans from the Antipodes! From one stress head to another.
Thank you Lizardo. You are right about the stress. I was rushing around looking after my Dad before he died 2 months ago, when i ended up in the A&E of the same hospital as him overnight with AF. He had dementia and was incontinent so there were bags of washing to bring home from the hospital daily. My GP advised me to look after my own health as my BP was sky high, but as I was the only family member my Dad had, I didn't have much choice, but had to look after him. Now I am back in my own home again things are more settled, though my partner has stage 3 lung cancer, but even that is stable at the moment, so I don't know why this latest episode has reared its head now. I do the 345 breathing exercises and do find they really relax me. I have made an appt with an EP for a couple of weeks time. All the best to you from Wales.
Good lady Welsh Amy. You sound as though you could be on track once more. Hope all goes well with your EP appointment. Keep us posted. It is quite interesting to see what happens with the British NHS compared to the Australian system. I escaped the NHS 41years ago and have never looked back as far as healthcare is concerned. I wasn't too far away from you in Shropshire.
Low bp can make you feel faint. Lie on the floor with your legs above your head. Drink something sweet and salty. You are going through a time and a half you poor thing. Good luck. Have a vitural hug
If A&E don’t sort this out for you today, my suggestion would be another urgent private appointment with the EP. Good luck.
Have made an appt oyster. Not been to A&E as felt a bit more settled, but still in AF.
Sorry to hear about your problems and stress you are having cannot be helping. I do not think it is a good idea for you to change your medication by yourself, there are so many indications and contra indications. I would suggest a visit to A&E your best option if you have to see the same GP you saw before unless there is another more supportive doctor in your surgery.
Best of luck
Jenny
Thanks Jenny - I wont tinker with my medicine.
Yes If A&E isn't satisfactory, phone the EP 's secretary and request an appt.But it is not advisable to change medications without medical advice . Hope that you feel better soon.
Go to A&E stop there until they do some thing to help. If they cannot fix you they can get someone to look at you who can advise what needs to happen. A&E can do an ecg for a start. If you are over 130bpm you should be in A&E. (My hospitals advice) IF you have heart failure they should be able to tell. If you are not in heart failure they should be able to tell you that too, which appears to be your worry. Do you have any alternative hospitals? You can present at any hospital.
Oh goodness what a ghastly tale
1 on no account start trying to treat yourself with heart drugs - they are very strong and could kill you
2 be assertive - your GP sounds a waste of space - go to another one. When my af caused my heart rate to go high and my no low my gp always sent me off to an A and R with good cardiac care
3 if you can’t see a GP today go to A and E
4 you say you have an overactive thyroid / hat in itself can be a cause of AF . If it’s caused by an autoimmune disorder then dress will exacerbate this and hence the AF . And you have plenty of stress
So ask your GP to do full thyroid function tests to include antibodies and TPO. Don’t be fobbed off. If need be you can get a full thyroid check done for less than £100 but really in the circs your GP should do this
There is no point in filling you full of heart drugs without tackling any obvious underlying trigger
5 first sort your heart out
good luck
Thanks smwdorset. I won't alter my medication.I find it is quite hard being assertive when you are feeling at a low ebb and dealing with the medical profession. My overactive thyroid was caused by the Amiodarone. My GP referred me to the endoctrine clinic for treatment. The referral came back as Inappropriate Referral. When my GP rang to ask why, they said they wouldn't treat me because it had been caused by the Amiodarone. Apparently Amiodarone takes months, years to even clear from your system, so ironically could be contributing to the AF.
Sorry meant in point 2 my BP and he sent me to A and E
Hi! sorry to hear about what you had to go through. As a fellow Afiber we can truly emphatize with you. I hope you are getting all the help that you need. Just would like to add to what others have said earlier ... please do not change your medication or increase/decrease the dose without checking with your EP. Am on Sotalol too and EP told me that Sotalol in particular need to be increased gradually (if need be). The side effects could be nasty. Take care and hope you feel better soon.
Thank you SpritzerAce. I get the message from here not to tinker with the Sotalol. I hope it continues to do the job for you!
I am so very sorry your going through this my very best to you. Your in my prayers.
Hi Amy - you really should be in the care of an NHS EP. I was referred by the A&E doctor writing to my doctor, and since then have had very little contact with my GP. Please ask your doctor to refer you to an EP, then you will get access to the care you need. I have been on Sotalol for AF for 19 years. It kept it pretty much under control for a long time, but when the attacks changed their nature (as they do) and became more frequent, I went down the ablation route - 5 times. Again , this worked for a while, but in the end, after going to A&E regularly and all that it entails, I have opted for a pacemaker and soon to come AV node ablation. You have enough going on in your life to cope with, insist on a referral from your GP.
Thanks Melleray. I asked my GP to refer me to an EP. My GP said it would have to be a referral from a Cardiologist. In the end I found one myself and went for a private consultation at another hospital . Our hospital only has 'Cardiologists'. I have made an appt to see this same EP again. You are the second person who has mentioned a pacemaker and AV node ablation. That has never been suggested as an option, Maybe it wouldn't be suitable for me. It is encouraging to hear that you have survived AF for 19 years. Not good for you to have had it all that time, but good that you are still here to tell the tale. At the moment, I am have got into a mindset of thinking of my life expectancy in hours, days, weeks!!!!! All the best with the AV ablation.
You should NOT increase your sotalol on your own. If you can afford a private doctor and hospitalization, l would IMMEDIATELY check myself into the hospital and get to the bottom of your health issue. So much for socialized medicine. Try thinking about YOUR well-being and only that. After you are totally WELL, then think of the others, including your partner and your father. I wish you good health.
Janith, my GP told me last year, when my BP was sky high that I had to put my own health first, but there was no one else to look after Dad. He died two months ago and my partner's reasonably stable now, so my stress levels should be decreasing. Maybe it is just catching up with me now. I won't increase my medication on my own and have made an appt to see an EP. All the best to you as well.
amy am on Eliquis and amiodarone. Took dramine 3 pills 50mg each and had a v-fib problem. meds administered stopped Tachacardia. Three sekks later got ful took ful med and over counter cough syurp. Yep AF fib/v-0fib again. Make sure you have not taking certain overcounter meds. Both I took had been listed as causing A/v Fib.
Thanks for this. I have not taken any over the counter drugs. Are you getting on OK with the Amidarone - it worked brilliantly on the AF, but the over active thyroid, dude effect, was awful and still suffering almost a year later.
*side effect
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