hi everyone, this is us my first post i’m new here !
I was looking for some insight or anyone with an experience of an Electrophysiological (EP) study.
I am a 32 year old female with worsening palpitations & what I think is SVT. I have had many loop recorders over the years which have picked up things like SVT, premature ventricular beats, 6 beat non sustained VT, supraventricular ectopic beats, sinus tachycardia. Since June 2022 I have had 3 episodes of what I think is SVT which won’t stop - the sensation feels like each beat is a palpitation and I go very dizzy and red - valsalva manoeuvre did not stop this but it did eventually stop suddenly on its own each time after anything from 3,5,12 minutes. Echocardiograms are structurally normal. I was on propanalol since 2017 but recently switched to verapamil. Despite all this my NHS cardiologist seems to think there’s nothing to worry about, but has arranged yet another recorder. I’m worried it will be normal and discharged yet again.
iv seen a private cardiologist who thinks I need an EP study with possible ablation but he has quoted risks such as 1:500 of serious adverse event and 1:1000 death which is extremely worrying. One concern he has is we have not caught one of my three prolonged events and so they are not sure exactly what it is I am experiencing. I have since purchased a kardia mobile ECG but it could be months before it happens again.
In the meantime I’ve been advised by both nhs and private cardiologists to not raise heart rate with strenuous exercise and I’m extremely nervous to do anything like travel or even being on my own, I very much feel in limbo at the moment with life on hold !
looking for any advise / experiences on any of the above please
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BaileyCat23
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I don't have experience of SVT, but can empathise with being kept in limbo and the uncertainty!
You probably know the basics already, no caffeine, smoking or recreational drugs, alcohol to be kept to a minimum. If you do exercise, try to keep it low impact and build up to it.
There will no doubt be folk along to talk about their experiences of ablation. I'm under the impression that svt is usually benign, so if you get the all clear from a doctor then travelling should be ok!
thank you, the lack of exercise has really had an impact I feel so unfit these days, I have been quite scared to do much in fear of triggering an episode, but I definitely need to start gradually building up my fitness again
I sympathise entirely and much of your post resonates with me.
I’m 33 with heart failure and dilated cardiomyopathy but I too have had SVT episodes, regularly have PVCs and have also had a number of unpleasant episodes with dizziness, nausea and feeling like I’m going to faint.
I can’t answer your question relating to an EP but I was wondering whether an implantable loop recorder has been mentioned or recommended in the past to you? It might be worth asking the question around the feasibility of one for you especially with such restrictions around exertion. I’m going to ask about on myself as I’ve been told not to drive.
You are definitely not alone with the fear about being left alone. For me it’s the thought of being left alone as the sole parent and something happening that scars one or all of my children for life!
I also sympathise with the limbo feeling, especially when you just want to be able to adapt and move forward. I find it helpful to remind myself that this as with all situations is on temporary.
Keep us posted with how you’re getting on and well done for being brave and reaching out!
thank you for replying to this, it seems you can really relate to the limbo feeling and fear of being left alone, I can’t imagine how much more scarier that is with having little ones, it is a real worry and something that’s putting me off starting my own family. I havnt been offered an implantable loop recorder but sounds interesting, it’s a real struggle trying to capture my episodes as they seem to be very random, but changing positions like bending down seems to trigger it sometimes x
Has anything changed in your life that coincides with your condition? It could be diet to relationships to activities connected with elements that might disturb your heart beat including servers, 5G masts, mobile phones etc.
It may just all be a coincidence but we increasingly bombard ourselves with electric waves that we dont know the effects of, or embark on diets that might impact our health as we dont get enough nutrients..
points really taken on board here I do think diet and life style plays a big part in all of this although I have been advised to not raise heart rate high and so I’m feeling very unfit and stuck at the moment
I’m waiting for an EP and ablation too so I’ll be interested to read any responses. I’m 51. I was super fit and a daily 10k runner until I had covid and started having what I now know to be VT episodes. Since a diagnosis of RVOT VT I’ve been admitted 5 times to hospital, cardioverted twice and defibrillated when I went into VF.
My most recent episode was last week when a mere 3 slow lengths at the swimming pool put my HR up to 240 and I ended up blue lighted to resus having to be Cardioverted again.
I now carry a medical alert card and have my pulse oximeter with me at all times. I can end up in sustained VT just by climbing the stairs.
I’ve been told I’ll wait 9-12 months for my op and may also need a portable defib fitted. The chances of the ablation benign successful atenf great for me but im willing to give it a go. Anything is better that being emergency cardioverted.
Wishing you well and I hope your journey is a successful one x
I'm really sorry I can't help Bailey, as I've no experience with this. Just wanted to welcome you to the forum and I'm sure someone with lots more knowledge will be along to help soon. This is a great site to be a part of - I've read answers to questions I never even thought to ask! Carol
Hiya Baileycat23 have had no experience on SVT but have been in limbo like yourself for a while as well. Thats a scary thing to go through at home and then the tests dont actually pick up what is happening when it is over and your at hospital. I've been advised no exercise or flying til results of mri are back its crap.... excuse my language putting your life on hold not knowing what is happening all we can do is eat healthy gentle exercise and hope we get some answers soon. Have you any idea when your next app will be for reorder.
totally agree, it is so scary when u experience symotoms yet many recorders and tests come back normal when you know yourself there is something very wrong, it seems there’s so much red tape within the nhs and the recorders only take a snap shot of your hearts activity which can be really frustrating when you get a clear recording during a period with no symptoms! Then you have to start from scratch again, and more waiting!! May I please ask what the MRI has been requested for ?
Hiya Baileycat23 I had a minoca heart attack last year and they don't know why or how it happened they think could be unstable angina now as i have had pains some severe since starting back at exercise which happen both at rest and when I'm active . The mri scan was a dye test as well to see inside my heart as I have no blockages in arteries at all.
Hi, I have SVT diagnosed with the help of a loop recorder. I would have almost daily episodes sometimes several in the course of a day. They would last from a few minutes to over an hour. They would make me feel as though I could not catch my breath and often resulted in chest pain. I have Microvascular angina anyway and a pacemaker. About 18 months ago an attempt was made at ablation. Unfortunately they could not get my heart to go into SVT long enough to determine where the arrhythmia was coming from, always the way when you need it to do it. I now take Flecainide to control these episodes. I'd much prefer to have ablation done than take tablets. See if you can catch it on the Kardia mobile, if you can then it may be worth having an EP study/ablation.
thank you Crystal614, this is very interesting, my longest episode lasted 12 minutes and was absolutely terrifying as I could not get it to stop. What does your episodes feel like and do you have any tips to help stop this? During an episode I feel like my heart is skipping and every beat feels like a palpitation, I struggle to catch my breath and go very red and dizzy! So frightening. Re the ablation, how do they try to trigger an episode ? And do they not ablate if an episode cannot be triggered at the time? Thank you for replying
Hi BaileyCat, My longest episode went on for 1 hour and 30 mins, I'd never had an episode that long before. It feels as though my heart is fluttering because it is beating so fast, which then made me feel as though I couldn't catch my breath. Sometimes I would have chest pain as well. I tried various things to try and stop it, from coughing, holding my breath and bearing down to even bending over to stimulate the Vagus nerve. After a while none of these would work so I would just sit quietly and tried to relax and let the heart rate slow down by itself. As for the ablation, a wire is inserted through the groin into the heart ( didn't feel a thing a local anaesthetic is injected into the groin) I was given a drug to get my heart to go into SVT and with the help of 'mapping' he then tries to pinpoint where it is coming from. Unfortunately despite his best efforts he could not accurately pinpoint the exact place as my heart just would not go into SVT long enough to do the ablation. I have had ablation done before for Afib but on that occasion I was given a GA, it was a complete success.
thank you, wow 1 hour 30 mins is so long, I feel like I’m going to pass out / faint when I have an SVT - I couldn’t imagine having one for that long. It feels very very odd, more than just a racing heart - very powerful and palpitation like - do you experience similar ? Have any cardiologists advised what to do when they last for so long?
Hi BaileyCat, when I was experiencing these episodes it felt more like a gentle almost fluttering sensation. After the failed attempt at ablation I was put onto Flecainide, I now take 200mg a day and the episodes are now under control. I'd rather not take medication and prefer to have the SVT ablated, but for now I have to make do with the pills. Have you ever had a loop recorder implant to monitor your heart rhythm? Perhaps that would help diagnose your ongoing problem then perhaps the cardiologist would consider an EP study or ablation.
Hi, I had an EP study last month. It wasn't pleasant, but wasn't painful and I had no after effects. So, I would say not to be afraid of it. I was anxious beforehand, but really it was fine. The worst part for me was that they give you a drug at the end which makes you shake uncontrollably. I didn't have ablation, so can't comment on that.
thank you for replying, I must admit the thought of an EP study really makes me extremely anxious, how long did yours last for and do you mind me asking if they diagnosed anything and why they did not ablate ?
I'd say the actual procedure took about an hour, but there was some preparation time (inc having some pubic hair shaved) and getting everything set up in the room. Then afterwards I had to lie down for an hour. Then I could sit up and they gave me a much needed cup of tea and something to eat. Then home. My diagnosis was likely AVNRV, which is apparently a type of SVT. The doctor said ablation isn't needed now, as my symptoms are infrequent, but is an option if that changes.Good luck with yours.
I’ve had 3 EP studies which resulted in successful ablations. I’ve got a complicated congenital heart defect, that’s why even though ablations have been successful, they tend to reappear years later.
That said, the ablations gave me years of hospital free life. My last one was in March last year and so far so good 🤞🏼🤞🏼
2 out of 3 my EP studies were always under general anaesthetic and I strongly suggest of discussing this before the procedure as it can be quite uncomfortable.
The arrythmias which were treated were for SVT and AF.
The time it took me to be myself again varied quite a bit, the SVT took me longer to feel well again as it was more complicated to treat.
thank you, I did not realise general anaesthetic was an option I thought you had to be awake, so this is good to know - how did you find them recovering afterwards ? Did they ablate without triggering an SVT? Having a life for a period of time without any SVT or symptoms seems a dream but so nervous for an EP study!!
the electrophysiologist needs to trigger the arrythmias in order to find it and ablate the area where it starts.
When you wake up you’ll be in sinus rhythm again. It is a bit painful because you need to stay lying flat and with your legs completely still for about 4 hours afterwards in order to keep the deep wounds in your groin closed. In the past they used to manually press really hard on the wounds, last time instead they had 2 impressively technological dressing which apply pressure on the wound.
The nurse will periodically check the wounds and slowly slowly release the pressure.
thank you for replying to this, wow I can’t imagine having in excess of thousands of palpitations a day, that must be very frustrating but seems you are really learning to cope with it well now. Sometimes I have periods (could be a few days or months) where I get spells of constant symptoms then I could go more months with nothing. It seems quite sporadic but truly terrifying during the periods of a flare up. May I please ask what a left bundle branch block is and how this was diagnosed ?
I'm having an EP study in a couple of weeks for suspected AVNRT. (Found by my Withings watch). Had an ablation for AF in Aug last year under General. All good. Have to have local anaesthetic this time, so bricking it. Depending on what they find they may ablate again on the day. Will let you know what it's like. Been told it has to be local because I need to react to whatever I'll be given, to try to trigger the SVT. Sounds horrible.
hope it all goes well, it’s good you have an appointment quick, I don’t even have that yet! Please keep me updated would you recommend the withings watch ? I have kardia at the moment
Yes, Ive had both. Originally the Kardia but then I sold that on as I ended up with a loop recorder implant. The battery went on that so I bought a Withings watch. It's caught many arrhythmias. The only reason I got an appointment for an EP study is because I sent some PDFs of my watch ECGs, one of which looks like AVNRT. So it definitely works. Both of them 😀
I mean ultimately they both do the same thing. I preferred the watch but actually, less than a year later it failed, confirmed by diagnostics at their end. I think they would have replaced it but I got it from Amazon, so they just gave me a full refund. At the end of the day they both did the job, which was to prove I wasn't making it up/having anxiety, etc. Not to say that anyone said, we don't believe you but seeing the link between symptoms and an ECG to me was invaluable.
yes I agree totally invaluable. My kardia has been playing up lately with ‘electrical interference’ so they are sending me a replacement. How did you ensure your kardia was with you all of the time? I’ve tried attaching it to the back of my phone via a card holder, but not the best solution! They don’t seem to have a carry case for the 6L version
I had mine attached to the back of my phone for a while but then just carried it around in my pocket. The watch is a more convenient answer but then if you want to know what something might be on an ECG, I found QALY was a good app as you can send them PDFs of your ECGs. It's not cheap but you get your ECG read in minutes practically with an answer as to what it might be. Amazing really.
thank you, this is really interesting as I had a Kardia reading at home this week which suggested ‘Sinus Rhythm with wide QRS’ I had no symptoms at the time thought just a random recording I done. Do you get many symptoms with this?
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