Supra ventricular tachycardia

[Carolx]

Hello

I’d love some advice and for anyone to share the same experience as myself.

I’ve had SVT all my life, 50 years now. I had many tests and investigations when I was a child and was offered 3 things...live with it, medication or surgery. My parents decided against medication and surgery, so I’ve basically learned to live with it. I was having an episode every couple of months on average, up until last year.

I started getting them once a week and decided to visit my GP who referred me to a cardiologist.

I had to wear a portable ecg machine for a 7 days. Luckily I had 3 episodes of svt so they were able to see this when they checked the recording.

I also had an echocardiogram which showed no abnormalities.

My GP put me on 180mg Tildiem (Diltiazem) a day at the end of January, I have been getting more palpitations (svt) and also a pounding, rapid heart beat, mainly when in bed rested. I hace also noticed my heart beating harder and faster after certain foods.

I went back to GP last week, he increased dosage to 240mg a day, I am still getting this pounding heart rate and it’s really stressing me out, which is making the situation worse.

I have made another appointment to see GP in 3 weeks but I’m not sure if I want to carry on with this medication.

Should I give it more time?

Cardiologist has offered me an ablation and I’m seriously considering this.

Any advice please?

Carol

[sturon]

Hi Carol.

It is always difficult to say if I were you I would do xxxx. I am sure your GP is knowledgeable but please remember General Practitioners are just that General not Specialists in cardiology. So if I were you I would think seriously about following your cardiologists advise.

My partner had two episodes of SVT over 12 months ago. Unfortunately for him it lead to two cardiac arrests. He now has an implanted defibrillator. I am sure if this has been happening all your life then it isn't as serious as my partner had. Ablation may solve this problem but you will never know if you don't have it. If you call the BHF nurse advise number they may offer you more advise.

What ever you decide good luck and hope they can sort this for you soon.

Regards Ron.

[Carolx in reply to sturon]

Hi Ron

Thank you for your reply.

I am shocked to hear your partner had 2 cardiac arrests due to SVT!

I have always been told my condition is not life threatening but trust me when I am in SVT I feel like I’m going to die!

As my fellow SVT sufferers will know it’s the most horrendous feeling, even after having them for 50 years they still make me panic.

I’m just fed up with them now.

I have no idea why they are getting more frequent. Maybe my age, pre menopausal maybe 🤷‍♀️

[sturon in reply to Carolx]

Hi Carol.

Just to reassure you my partners cardiac arrests were due to a condition called long QT syndrome. This can cause SVT and can lead to a VF arrest. He now has a subcutaneous implanted cardioverter defibrillator (S-ICD). This devise monitors his heart and if he were to develop SVT it would cardiovert his heart or if he went into VF it would deliver a defibrillating shock. I suspect your condition is very different possibly something like Wolff Parkinson White syndrome. Your cardiologist should be able to tell you the cause and the best way to treat this.

Good luck.

Regards Ron.

[Purplelj]

Hi Carol

I have had palpitations for around 16 years and have recently been diagnosed with SVT following catching the symptoms on a holter monitor. My palpitations like yours have got worse and while I may only get one/two episodes a month they now last anything up to six hours.

I also have periods of my heart beating faster, sometimes when I have eaten or when I’m laid in bed. I must admit some of this I have put down to be overly aware of my heart and then the more it happens the more anxious I get so a vicious circle!

My GP and then cardiologist wanted to prescribe Bisoprolol however I wasn’t keen to start medications as we have plans to start a family.

I was referred to a specialist cardiologist who assured me that SVT is not life threatening and recommended cardiac ablation so after much thought I am on the waiting list for this. If it works the thought of not suffering with palpitations again is very appealing!

I would always advise going back to see your GP and discussing the problems you are having before stopping the medication, they can always seek further advice from your cardiologist if required. By the sounds of it there are also other medications available.

It would be great to hear how you get on with your journey.

Take care

Lisa

[Carolx in reply to Purplelj]

Hi Lisa

Thank you for your reply.

OMG six hours!! I would be having a major panic attack. My longest was around 40 minutes when I was pregnant and that scared the life out of me!

When I have one I still think it’s never going to stop, of course it always does but I get anxious and as you said, this just makes things worse.

When I’m at work or generally active I’m fine, like you said again, it’s when I’m lying in bed and rested I’m more aware of my heart rate and this keeps me awake.

I wasn’t keen on taking medication but thought I’d give it a try. I think I’ll discuss the ablation with my doctor.

If it can cure it, then I’ll be one very happy girl.

Wishing you lots of luck with yours

Carol

[Purplelj in reply to Carolx]

Yes it definitely bothers me much more now that it lasts so long! I too am not as bad if it happens during the day but hate it when they occur during the evening as you then go to bed worrying and unable to sleep.

It is nice to speak to people who have had similar experiences and great to hear feedback regarding ablation.

I won’t lie either I’m really nervous about it and it’s taken a while for me to come round to the idea! The waiting list is fairly long in my area (18-20weeks) so the cardiologist said if I change my mind at anytime just give them a call.

Let us know how you get on if you chat to the GP. I think you have to go with what feels right for you at that time.

Take care

Lisa

[Carolx in reply to Purplelj]

Thank you Lisa. I appreciate your advice and sharing your experience.

It really does help.

[LMor]

Hi...I too have had svt all my life. I actually never told anyone when I was little (even though I’d collapse when it suddenly came on). When I was a child they would only last for 20 minutes, maybe half an hour and then stop as abruptly as they started with the most enormous pain across my back. I just lived with them, but a few years ago I had one that did not stop however hard I tried so I had to be rushed into hospital. I decided to not go on medication, but unfortunately last year I had two episodes lasting 3 hrs and again had to be rushed into a & e and given adenosine. One of the instances it was work who called the ambulance and when I returned they actually gave me a verbal warning!! Unbelievable 😬. Anyway, work made it quite clear that if I was off again I could loose my job, so I opted for the ablation which I had five weeks ago. The surgeon told me afterwards it was a birth defect and I will no longer get an episode. It’s cured. (I hope so). The procedure wasn’t too bad and I would have it again tomorrow if it did come back. If you would like to ask any questions on the ablation then please do. (I can’t promise I will be able to answer them all but I will try). Good luck with whatever you decide on x

[Carolx in reply to LMor]

LMor

Thank you for your message.

Your SVT seems much more severe than mine. Mine tend to last 2-3 minutes, then like yours did, they stop very abruptly and I’m left feeling very light headed and tired.

As I’ve had it all my life I’m guessing I was born with it too.

I’m not gonna lie.....the ablation scares me but I think it may be my only option.

I believe you’re awake for the procedure, is this correct? How did you feel during and after?

I would love to be SVT free, I’m thinking I should have had the op years ago.

Carol

[LMor in reply to Carolx]

My op was done under sedation but I knew nothing!! I woke up as they were pulling the wires out so that’s the only thing that was uncomfortable. I know that’s not the same for everyone and some people are wide awake and know everything. I didn’t want to be. I had immediate chest pain after, (not terrible pain) and the groin area is sore. After three hours of laying flat my wound started bleeding so they had to call the surgeon in to stop it but that was achieved through pressure for around 15 minutes. I went home the next day. If I’m honest I still get chest pain, I still am quite exhausted, but I also have thyroid disease and other health issues so I think that isn’t helping. Honestly though, I would definitely recommend having it done if the svt interferes with your life, but obviously that can only be your choice. Have a read up about it and speak to your consultant. I found everyone on this site so helpful and I am grateful for their advice. X

[Carolx in reply to LMor]

I too am grateful for your advice.

Thank you.

[Ianc2 in reply to LMor]

Your employers are not very expert on employment law. There has to be 2 formal written warnings before they can terminate your employment, if not it constitutes unfair dismissal and possibly sexual discrimination. Have a chat with the citizens advice bureau If you can join a Union do so, I would also look around for another job.

[LMor in reply to Ianc2]

Hi ianc2. The verbal warning was the first one and they gave it because I’d been in a car accident three months before and had to take three days off then....and then had sickness another time so it was my third absence & they used that fact. Terrible behaviour from a very large company. I have joined the union now and contacted them about making me start work at 7pm and finish at 11 and they informed me that they can not do that and to ask for occupational health to be involved which I have (funny feeling they won’t do that though). Thank you for your response

[Alessa69 in reply to LMor]

How awful that your Employer has been so unfeeling 😨If they called the Ambulance, they would know that all was genuine& should show more compassion.....The sad thing is, most employers seems to be going down this route these days . Good that you have joined your Union, so you will have representation and protection . Its also worth making sure if possible that you can access their employment policies & procedures document. IF they publish their policies ( a good employer would) download it & check relevant sections all through. You have the right to request reasonable adjustments, you can use The Disability Discrimination Act( unless current Governemt has repealed it , as I am a few years out of touch on that one) Hope that you make a good recovery, please don’t let your employer bully you, unnecessary stress causes even more issues with heart related issues. Concentrate on just getting better and reducing stress levels . Good Luck with all x

[LMor in reply to Alessa69]

Ahhh thank you so much. Yes it comes under the disability act, plus I also have thyroid disease and that comes under it too.....I can not believe their behaviour so far. I’m actually just about to start work now. Wish me luck lol x

[Alessa69 in reply to LMor]

Sending you positive 🙏and lots of 🍀. Yes , thyroid disease is definitely covered under the DDA as is Heart diseases. Deep breaths, slow inhale, and exhale fully to calm all. Focus on a positive outcome, I hate seeing people being bullied by large Corporations . I worked for one for 36 years...... I learnt an awful lot about how NOT to manage people !

[Twobells]

I had this condition and after many episodes a day and long chat with cardiologist opted for ablation. Worked for me. I have occasional flutter, but I can live with tht. My svt got so bad I would be in casualty a couple of times a week and received adenizine which is a drug to stop your heart and then restarted. The reason I opted for ablation was partly the visits to casualty, but living with it never knowing when it was going to strike I was constantly fatigued. In the long term it can affect the function of the heart. Having your heart over working during svt episode is not good.

[Carolx in reply to Twobells]

I do worry about the affect it’s having on my heart after 50 years of getting these palpitations. It can’t be good can it.

Like you I’m constantly thinking throughout the day I hope I don’t get one.

I had 4 in one day couple weeks ago at work, I’m a learning support assistant, I support students with special needs and I was in class at the time and just had to carry on as normal. I felt exhausted after!

Luckily I was sitting at a computer with a student so bluffed my way through it without letting anyone know.

I had one this morning and you know what triggered it.......I dropped my phone and bent down to pick it up and BAM......went into SVT! Only lasted 3 or 4 minutes but that’s long enough.

It’s good to hear from people who have had the ablation. I’m definitely going to talk to my gp about having it done.

Thank you for taking the time to reply to me.

[Tolkien in reply to Carolx]

Hi Carolx, I've had SVT since my teens but since turning 50 it has become a lot more frequent and can happen just by bending down. I use a vagal maneuver to stop it which works most times but requires a crouching position holding one's breath - not a good look in a crowded situation or at work. I've just had an ablation but the next day the svt kicked in and now my GP agrees it hasn't worked. I have had no follow-up plan from the hospital and can only guess they'll call me back in 6 months. I do plan on having another one if possible as I know it can take a couple of attempts to hit the right spot. I was terrified about having the procedure initially but can assure you it is not that bad if you decide to go that route. Good luck.

[Carolx in reply to Tolkien]

Good morning

Thank you for your advice.

I too can have an episode of svt by bending down, even sneezing, coughing etc. It’s so draining.

I’ve been on Diltiazem for 4 months now, dosage been increased to 300mg a day and I’ve had 39 episodes of svt!!

I must say they are not as intense or last as long as pre medication but I’m still getting them, so I guess tablets aren’t doing what they’re supposed to in my case.

I’ve had SVT all my life and I really have had enough now. It’s getting me down.

I may have to opt for the ablation but it does scare me.

I appreciate your reassurance that it’s not that bad but it’s the last resort for me.

I may ask my GP to refer me back to cardiologist and see what he suggests.

Again thank you for your reply.

[Tolkien in reply to Carolx]

Hi Carolx, my svt is getting me down too - it's stopped me swimming and although I still use my bike i'm always on edge waiting for it to strike as I know exercise will bring it on. Honestly the ablation is not that bad. I was so nervous that I cancelled my first one at the last minute and then had to wait 6 months before they called me back at the insistence of my GP. In fact the worst thing about it is having to stop the bisoprolol 3 days before as I got many tachy episodes then, and was concerned they would run into afib, of which I had one bout 2 years ago. I was so disappointed when the tachy came back but I intend to try again if i'm offered a further ablation. Hope this helps. Duncan

[Stumpy47]

Hi Carolx like you I had svt for a long 40 yrs & coped well until early 2018 when they became more frequent & stubborn meaning frequent doses of Adenosine to convert them. I'm now 3 weeks post ablation & experience a lot of ectopic beats with just a few spikes in my heart rate, which should settle down hopefully. The Ablation was carried out under sedation & was uncomfortable at times but easily bearable. Just ask for more sedation if you feel you need it. I'm certainly glad I had mine done & hope for more improvement in time.

[Carolx in reply to Stumpy47]

Good morning

Thank you for your message.

I really don’t know what to do, I’m in two minds about the ablation. It seems very extreme, although I’ve heard from several people it isn’t that bad.

I’m still on 300mg a day of Diltiazem and I’m still getting episodes of svt. Averaging 2 a week and lots of ectopic beats every day.

Think I’ll go back to GP and have a chat.

Again I appreciate your advice.

[Stumpy47 in reply to Carolx]

You are very welcome.