looking for discussion from people with similar. What treatment worked for them. Those I’ve met in hospital and friends all have had successfully treatment and meds have one thing in common- high blood pressure.
Since I was diagnosed Jan 24. Put on Apixaban,Bisoprolol, Sotolol,then Metropolol. All qtys they tried. all lowered my blood pressure along with side effects made me so light headed 24/7.
Next tried calcium blocker. Diltiazem - again same. Most recent I’m on Digoxin. First that does not lower my low blood pressure.
They all have one thing in common and that’s they don’t slow my racing heart
Surgical procedures
Jan 24 cardio version worked but only lasted 11 days.
April 24 cardio Ablation right Atrium sime success but issues with left Atrium. Symptoms keep evolving from week to week. Aug 24 Wireless cardiac monitor injected into chest. As heart is so screwed up. Via phone app linked live 24/7 with my hospital.
Jan 18 2025 Cardio Ablation left Atrium successful with regular heart rate 73/74 for first time in decades. Sadly lasted 2 1/2 days.
Feb 5 2024 tried Cardio Version again lasted about 15 minutes.
Next plan is Cardio Ablation again in left Atrium using latest technology Optrel mapping catheters.
Only approved for use in Europe from Oct 2024. Used by a couple of top Hospitals recently. Looks like I may be the first at my London Hospital.
I have no concerns with the procedure.
I would be interested in hearing other experiences similar to mine and how you are living with success or failure.
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Eeee13
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Have they given you a diagnosis of what is causing this wide variety of cardiac issues? This can often be the key to the issue.
Sometimes the usual suspects aren't the cause , so you can end up having bradycardia or low blood pressure on meds that are more usually given to control blood pressure and Arrhythmias, like beta blockers.
I know I did.
I can't have ablations or cardioversion for my micro and macro vascular causes of AFib. I've been told the won't be effective , or at least won't be for long with my Dysautonomia conditions because my cardiac problems originate from node and autonomic nervous system dysfunction .
Have you had things like Holter tests or Tilt table testing?
Some people require less common medications which help control heart rate without affecting blood pressure or vice versa.
Without knowing more about your whole cardiovascular profile it's hard to give advice.
One medication doesn't fit all types of cardiac problem.
My cardiac consultant said I’ve inherited a faulty gene from my mother. We that makes sense as what I know now it makes sense as all the signs were there and put down to getting old. Any drugs that lowered my blood pressure as a side effect sent me to sleep. I’d spend all day moving to keep awake. Was light head as if being drunk without alcohol all day. If I stopped sat down I’d fall asleep even messaging on the phone it would keep falling out of my hand. I’m still on a blood thinner that makes me breathless and tired but the Digoxin I’m currently on should but doesn’t suppress my heart rate also makes my heart beat stronger does help to keep me awake most of the day. After my last ablation 5/2/25 my heart rate is as constant at 73/74 for the first time I felt great. Ablation seems to be the way forward the first one I had 14/04/24 in right atrium you don’t necessarily feel the benefits immediately mine took 6 weeks then AFib suddenly disappeared. The left Atrium was next on the list. I don’t get worried over any of it. The time between treatment is frustrating but you do have to wait about 3 months for the heart to heal and adjust. It’s surprising what can happen during that time. Yes this time things changed and evolved very quickly so more ablating has been urgently expedited. Thing is not to be afraid as the alternative is not an option
I haven't any answers, but it's nice to know I'm not the only one with constantly evolving issues. My typical blood pressure has always been around 100/60 (has dropped to 60/30 and 70/40 in the ambulance twice). My heart rate varies between 50 - 210. I've escaped cardioversion as my rate reverted to normal just prior to procedure, however I had an ablation in right atrium which lasted wonderfully for 5 weeks and now I'm waiting for an ablation in the left atrium. I rarely get a day free of erratic episodes, some lasting 20 mins, others 36 hours. I've tried all the meds I can tolerate but these have no effect. Hopefully the new treatment your offered will work. I've assumed that if the various ablations didn't work that they would ablate the AV node and put a pacemaker in, so it's interesting to know there might still be other options.
I’m finding that although first cardio version and both ablations were successful as my heart is constantly evolving week on week. The Optrel mapping catheter seems to be they way forward along with 3D scanning as it can test the area and then treatment can be more accurate to treat the problems The more ablating that is done the better the longterm success rate seems to be. I’m wondering if low blood pressure and possibly certain blood groups are linked to more complex cases. I have 4 friends one who had ablation 15 years ago and all successful some on meds and lead a normal life. I was one of 4 on 5/2 who had cardio version I was the only one who it failed. Others all had high blood pressure. Seemed to be similar picture to those I spoke to whim on acute cardiac wards. My blood group is ONeg. My heart rate drops to 42 during the night and when I’m awake races between 130 - 160 all day every day. I’m burning the equivalent of 7000 Calories a day which is like being on at treat mill for 8 hours it’s exhausting doing very little each day. If I do anything physical it will go even higher. Having to avoid as it puts too much strain on heart and it becomes enlarged
I don’t drink, ( only on a special occasion a glass) do not smoke, don’t eat junk food, everything always cooked from scratch ( was a chef many years ago) don’t do fizzy drinks or artificial sweeteners etc. my only vice is chocolate. But in moderation. Don’t eat between meals. Drink plenty of liquid to keep blood pressure up. Not obese did out on a stone last year already lost 8lb need to loose another 8 lbs then I’m good. It’s hard when I love my food but slow and gradual is best.
Your post perfectly describes the path I’ve been on. Same symptoms, same treatment, all happening last year.
Had 3 ablations, last one with mapping but AFib proved resistant. Tachy controlled by Bisoprolol but Brady continued. Next was pacemaker with some improvements but Bisoprolol causing low BP and dizziness.
Final procedure was AV node ablation in October and all good since.
I found all procedures uneventful and painless. Pacemaker now 7 months old and I’m unaware of it except if my hand or arm accidently brushes against it.
If your doc suggests pacemaker my advice would be to not hesitate.
Yep all my procedures have been painless but I do have a very high pain threshold.
Pacemaker was originally talked about. But after my Jan 2024 ablation it was looking so good and a pace maker would probably not be required. With my wireless cardiac monitor in my chest I have to be so careful. I’m self employed builder and refurbish properties. Work on my own and quite often use my chest to support things like kitchen cupboards when fitting to walls. Not sure if a wired pacemaker would not have problems. Especially when plastering ceilings - a lot of lifting and stretching. I’ve got 500 sq mtr waiting to be plastered. A wireless pacemaker would possibly be better and will ask if and when.
I know people with pacemakers but they live sedentary life’s.
Meds like you don’t work or side effects cause so many problems I’m better off without them.
Now I know the signs it looks like I’ve been Bradycardic since my early teens.
Stress and after exercise my heart rate plummets.
2019 circumstances caused my heart rate to drop around 25bpm and I collapsed, fell on glass took half my face off and amputated my nose. Lost 4pt blood in 4 minutes paramedics got to me in 4 minutes otherwise I would not be here today.The doctors kept asking if I knew why my heart rate was so low. I’d been going to the gym 3-4 times a week for 2 1/2 yrs and they put it down to being really fit. I now know different. 6 operations with one of the countries top plastic surgeons he grew me a new nose on my forehead and transplanted it and over 330 stitches later and never needed any pain relief after surgery.
I’d been so tired for years and thought exercise and getting fit would make a difference. After an hour on cross trainer I’d do weights etc and would suddenly start to fall asleep on the bench. That’s when heart went Bradicardic. I’d always feel the cold and never had a problem with hot environments.
Before my first ablation I used asked my surgeon if he was raising my heart rate would it raise my blood pressure. He said no entirely different entity. I saw him on my next consultation and asked to shake his hand. He was shocked how hot my hands were. My blood pressure had gone up from extremely low to low and my peripheral temperature had gone up. He’d been ablating for 20 years and said he’d never had this happen before, man of few words then said interesting 🤔. I now wear a t shirt instead of 3 layers. I know exactly when my blood pressure drops as the blood supply to my new nose is compromised it’s the first thing that goes cold.
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