Hi everyone... Had successful ablation for AFib and AF in 2016. Ok until last August when all these weird arrythmias suddenly started happening. I assumed it was AFibbut it was different, getting a week to 2 weeks of almost constant palpitations 24/7. Been to A&E 3 times, they weren't bothered. Been waiting to see a Cardiologist since August, so booked myself in with private for half hour appt. After looking at my home monitor and analysis reports and ECGs he said he felt the SVTs were actually AFib caused by the old Ablation sight scar tissue which is causing the short circuiting. He has referred me for EP Study with Ablation under NHS at St Barts Hospital London. Waiting could be 6 months minimum.
He prescribed Sotolol 40mg twice a day. Ive been taking it for 2 weeks now and its not helping, at all.
Im now 6 days in to another period of mixed arrythymias 24/7. My heart monitor is showing in a 7 minute ECG out of 529 heart beats 191 are SVTs and 58 are PACs. So thats 25% of heart beats arrythymias . They come in couplets and shorts runs, of 6 or 7, then a few normal, then PAcs then SVts again. Surely this is worrying and not right.. I feel so aweful, tired, any exertion causing dizziness. I go to bed with heart like this, it gets worse for a bit when I lie down and its still there in morning. I sleep on and off. The anxiety is aweful.
When I first was diagnosed with AFib in 2007 they gave me Sotolol and it didnt help at all, I ended up on Flecainide. I told him this, he said there was no other med he could prescribe due to my type of arrythmia so would have to tough it out if they didn't work. I used to be on Flecainide, but even then I only used to get AFib attacks every few months lasting for 2-3 hours then I was fine again until next attack. This constant arrythymia combination is so very much worse.
Has anyone else been prescribed Sotolol for SVTs and Afib and has it helped. Can it make it worse.
Sometimes I feel so aweful I feel I should go into A&E but Ive done this 3 times now, and they didn't do anything. And it was a nightmare experience. T.his period could go on for 2 weeks! or perhaps even more.
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wendy6
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I’m afraid I don’t have a clue about what’s going on, but it sounds awful and I can totally understand how your quality of life is affected right now. Sending you some calming thoughts.
Sounds horrendous I’m sorry you’re going through this. Could you perhaps get a second opinion on the flecanaide if the Sotolol isn’t working? It is awful to be expected to live like this without getting help from the hospital in the shape of proper monitoring and in-depth help. Hang in there and I am sure something will happen in the positive sense for you. Sorry I can’t give you any help. Big hugs !
Thank-you for replying. I believe he can't prescribe Flecainide because it's not Afib I'm having. I'm having frequent runs of grouped (6) SVTs with PACs and then a few sinus beats then repeat going on 24/7 fir 7 days now
I hope this settles down for you, they are so scary and uncomfortable. I am sure they will use trial & error with certain meds and they will eventually get the right prescription for your needs. All the very best, I am sorry I can’t be of much help.
can you go private to see another ep? Your arrhythmia sounds complex and worrying enough to get a second opinion to try another drug. If he has prescribed Sotalol he might think you have some cvd. Amiodarone might be needed for a short cure to sort things out. For ablation you might need an expert one to ablate your complex arrhythmias. How to see one and how long to get one? That is NHS. Or go private then if you cannot wait.
Thankyou SeanJax, I dont believe he think I have some cvd. I chose him because he is actually the expert and clinical lead for complex Arrythmia . He doesnt deal with normal Cardiology - heart attacks and heart disease etc. I have contacted him to ask for more advice about medication and request my case be bumped up to urgent...can only try and hope.
I'm on metropolol which is the same class of drugs. Its somewhat calming. What helped me the most was when my doc lowered my thyroxine dose by about 25%, if you have thyroid issues. I know its hard when you're worried, but breathing deeply helps, also paying attention to your thoughts, especially the ones that just go in circles also helps. Just observe. while breathing Wish I could offer more. I have had many arrhythmias that worried me. A doc saying don't worry helped some, but I couldn't help how I (over) reacted.
Curious about this Whats as have just started my hypothyroidism journey recently. I insisted to cutting my first 25mg thyroxine in half at the start because I was getting runs of tachycardia. Seems to have calmed down now but still working too find optimal levels.
Thank you whats, I would be willing to try other meds, anything to get this under control its day 8 and Im feeling miserable. Ive checked my ECGs from mid April when I saw EP and the ones taken this week show my SVTs and PACs have doubled infrequency. Now nearly 50% of my heartbeats are arrythymia for every minute of every hour 😧
The ectopic beats do seem to come on consecutive days, probably because they stressed me out and it takes a couple of days for the effects of stress (or whatever is upsetting your heart) to subside, even after you're not anxious any more. What a super challenge, staying calm when your heart is acting up and you don't quite believe your doctors. I used to use small doses of benzos like Ambien. Now I try to do meditation. There's lots of info online about different techniques. Tumultuous circumstance are considered a fine challenge in the meditation practice I use. Or, find a phrase that calms you and repeat it over and over to displace the worried thoughts and try to breathe deeply. And/or, if possible and appropriate, get a benzo prescription, at least to help you sleep until you can see a doc you trust.
Oh dear I do feel for you! At least you're in the pipeline for treatment at an excellent hospital. I guess there's a reason you can't take the Flecainide for this type of arrhythmia? Only thing I cam suggest whilst your waiting is to do some breath work to help.combat the anxiety and quiet the ectopics. I've used this technique to slow my HR down - didn't see AF off it it was a bad run - but definitely helps tachycardia and is calming too.
1. Sit or lie comfortably so that your tummy can move easily when you breathe in. If you're lying down, this is easier on your left side.
2. Take a breath in.slowly through your nose. I usually count a slow 2. Let your tummy relax when you do this so it moves out gently.
3. There is a natural pause for most people after the inbreath
Try to tune into it but don't force it.
4. Let the breath out again all in one go - don't worry that you'll be out of breath - there's always air in the lungs right up until our last moments
5. Don't be surprised if you feel like another pause after the outbreath but again - don't force it. Keep tuning in either to the feel of the air moving through your nostrils or the sound.
6. If you need to breathe out through your mouth purse your lips slightly as it helps to feel the breath and know we're in charge of it.
6. Repeat.
Typically your breathing rate will calm and slow down. You may even feel like you're about to drop off to sleep.
This technique is one of many used by breath practitioners to help calm our systems and regulate breathing. I have often got my HR down by 15-20 BPM using this technique and sometimes seen my AF off. Also helps me if I cannot go to sleep
I can sympathise about the feeling of anxiety. I often read on here that these ectopic beats and the like are of no consequence, but, goodness, telling myself that is hard going at times.
As it isn't producing any useful result, I would, myself, be asking to stop the sotalol. All rhythm drugs have a range of actions so, unless they prove useful, seem not worth taking.
I didn’t get on with solatol at all, but I was changed to flecainide and that seems better. Could you try that again? Did you take a beta blocker with it when you tried last time?
Hi. I'm going through similar issues. Couplets, triplets and runs of PACs, with hardly any PVCs.
I'm currently taking 2.5mg bisoprolol daily and 150mg flecainide if I'm bombarded with ectopics. Flecainide significantly decreases my ectopic burden, but, unfortunately, seems to trigger panic attacks, albeit manageable ones.
With regards to the flecainide, my cardiologist is happy for me to take it for atrial ectopics. He says I can take up to 300mg in 24hr, either as required or as two daily doses. I'm also free to adjust my bisoprolol as required, but only up to 5mg per day, due to an unmedicated resting heart rate of around 58bpm.
Thats interesting John, I used to be on Flecainide when I had Paroxysmal Afib.
Im on day 8 today of this pattern of arrythymia - my heart monitor is showing no AF. Just lots of PVCs grouped 6 at a time, then sinus for 3 beats, then PACs then 6 SVTs and repeat. It goes on like this constantly all day and night.
On checking previous ECGs taken month ago whenI saw EP, the frequency of arrythymias per minute has doubled and is now dominates 50% of heartbeats
Ive emailed the private EP I saw to ask for his advice about Sotolol and if I can take anything else. Also asked if he can escalate his referral so I can be seen sooner?
Hi Wendy, I have a similar problem with palpitations at the moment, it sounds like you are suffering more than me but I can really sympathise. My cardiologist has suggested a loop recorder which I am on a waiting list for.I normally get about 2 weeks of palpitations then a 3 or 4 week rest until the next bout, really demoralising. I have tried deep breathing exercises which do have a small impact, also I'm going for a massage as I believe the stress of the situation is self perpetuating.
I hope you find the right help and get some rest from the awful condition. Take care Dave.
P.s I have reduced my bisoprolol from 5mg daily to 2.5mg to see if that helps.
thank you for your reply. Yes yours sounds similar with timings.
Honestly I would much prefer having AF like I used to 2-3 hours then its done with. This is making my life miserable.
I have been on Bisoprolol 2.5mg a day for 8 years and it kept my HR quite low. EP changed me to Sotolol. I might need to up the doseage but when I took it years ago for AF it didn't help at all just made my heart too slow and I was so sluggish I couldn't walk any distance.
Never heard of a Loop Recorder, is it a type of Holter Monitor to record ECG.
Hi Wendy, yes the loop recorder is inserted underneath your skin for a couple of months and gives the cardiologist a data download of your hearts behaviour over an extended period. With a intermittent problem it's sometimes hard to get the correct data. I've had various treatments over the years, cardio version in 2013 a cryoablation in 2018 and various medications for many years. My heart has been a constant problem for most of my adult life.I hope things settle down for you soon as it really is draining when you don't have a break from the hassle of heart problems.
Getting the right treatment in the UK can take time which is quite frustrating...
Thank you for kind reply. Yes some progress. took myself into A&E yesterday afternoon.
usual long wait but not as bad as previously (22 hours) I was there for nearly 6 hours.
They did bloods and a 10 second ECG (10 seconds what use is that!) of course it didnt pick up anything interesting a one ectopic.
Thankfully I did an ECG reading in the morning and took plus a few from over the week with me.
It was a bit of a farce to be honest. I saw A&E doctor explained everything he made all the right noises and said I need to move on to the Major Assessment area. This is usual procedure ( you spend 4 hours in A&E getting ECG and bloods done then they move you on).
So in waiting room Major Assessment. Saw a junior Doctor who did brief examination, I repeated what Id told previous doctor. He told me not much they can do as my ECG was nearly normal. I showed him by home ECGs we discussed my medication etc and symptoms. he said he would relate all this to Senior consultant (not Cardiologist) So back to waiting room. Said it would be about 15 minute wait. After half hour I went to from desk to check. The consultant was sat at reception. I asked him, he began to repeat what junior doctor said about nothing they can do etc.... I said but my home ECGs have recorded my constant mix of arrythymia. I got folder out and showed him. he was surprised. and his attitude changed. he said he would phone the on-call Cardiologist and see what he advises.
I went back to wait. Again after some time I went back to reception to check. He said he had spoken Cardiologist who has agreed I can up my Sotolol from 40mg a day to 80mg a day. I said but Ive been taking 80mg a day since 1st May.!!! (I started on 40mg a day then increased to 80mg after a week as advised my Private Cardiologist who prescribed them) obviously the junior doctor had not updated my records or told him that I had done this (I did tell both of the 2 doctors earlier) So he will have to speak to on call cardiologist again.
My seat in waiting room had been taken, and no more seats so I stood there and waited. I heard him explaining to cardiologist my case (so did everyone else at reception and surrounding area!) On call cardiologist sad he will have to speak to the private cardiologist I saw before increasing any further. I managed to find a seat.
Again after quite some time I went back to Reception. The on call Cardiologist was there so by chance I believe I managed to speak to him and show him my home ECG Readings, he was impressed. He said he was waiting for private cardiologist to respond to him text message. As we were standing there he got the reply saying I could increase Sotolol to 160mg a day.
I should add that the private Cardiologist I saw is the Clinical Lead for Cardio/Electrophysiologist in the area and does also do NHS patients. I am apparently under his care now as NHS patient but I cant get to see him as a NHS. Anyway what with the email I wrote him last Friday and now visit to A&E he will know that I mean business and need help!
So I was then discharged. On call cardiologist will do report for my GP saying I have increased Sotolol to 160mg etc.
I said what do I do if it doesn;t work and my symptoms continue like this. He said well you come back to A&E and I will deal with me ( thats a result after 5 previous attempts to see him) But he added what I really need now is the Ablation, hopefully my coming in today might bump me up on waiting list, but ive only just got on the waiting list so doubt it)
I took the higher dose Sotolol last night and again this morning. I did calm down considerably anyway when I got home, anxiety levels down. So slept well and this morning was in sinus rhythm for first time in 9 days. Now its mid-day and my heart is quite slow with odd ectopic so the medication is doing something.
Goodness Wendy what a palaver!! It's a good job you are so organised because it sounds like a circus! Well at least you are getting some relief with the additional medication. Let's hope you continue to reduce the symptoms as the medication gets into your system over the next few days. Best wishes Dave
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