End of the road

Hi All,

I'm new to the group as I feel I have no where left to turn. I was diagnosed with SVT back in 2010 and had my first abalation when I was 20 (I'm now 23). I had my second ablation last November (2014). Everything seemed amazing since my last ablation, but last week I collapsed at work and A&E advised that the SVT was back and as worse as day 1. I'm no back on Ivabradine twice a day and verapmil 4 times a day.

After 5 years of suffering with the condition I feel like I'm ready to give up hope with this. Is there anyone else that has a happy ending to their SVT story?? I don't normally post things like this, but this time it's all really got to me.


10 Replies

  • Hi Sophie, I have SVT but haven't been diagnosed as long as you I've been diagnosed for two years. This must be difficult for you.

    I Had my first ablation in

    January which was unsuccessful due to a more complex atrial tachycardia found. They trialed every medication with me but nothing worked. Just had my 2nd ablation 1 month ago. So too soon to know results.

    What did the hospital say, have you got to go back to your cardiologist? Where is your hospital.

    Did you normally collapse with your SVT or is this new?

    Don't give up. Something can always be done try and stay positive 😀

    I had been in resus 16 times since January with my SVT and felt the same when the waiting list for

    Ablation was going to be another 9 months but it eventually became 6 and I got through it.

    Sorry I can't help anymore but sometimes when people share stories it really helps 😊Stay positive. Dee

  • Hi Dee.

    I have everything crossed for you that your second ablation is a success :) The hospital said they would get me booked in with a cardiologist asap, but I still haven't received my letter with an appointment and I don't want to go back to my old cardiologist, think it's about time I get second opinoin?

    I only used to collapse and fit with my SVT before my first ablation, which is why I'm so surprised it's gone back to this again even after my second ablation.

    I'm just tired of fighting it and ended up having so many days off work sick, because as you well know after an episode it completely wipes you out.

    Thank you.

  • Yes I do understand, I have tried to limit the amount of time I have off work as I worry but this stress doesn't help with our health. Sometimes you have to put yourself first.

    It's not like you are out drinking the night before and do not turn up to work. How are your job supporting you?

    People don't always realise how your feeling and what you are going through which can be difficult. I have never passed out with my SVT but I've been in an episode before at work and people don't understand how your feeling because you look ok. I've called my own ambulance before when I felt so unwel.

    A second opinion is always good and never any harm. I have only ever seen once consultant, but I'm sure you could get a second opinion. Are there many electrophysiologists in your hospital? I am under St Barts in London cannot fault them there. I really hope they can solve this for you, how does the medication work for you?

    I was on diltizem and flecanide but had to be taken off flecainide as it produced a more dangerous syndrome which is rare. But they kept me on diltizem every time I have been to hospital, nothing has worked for me including adenosine however verapamil through IV has always worked!


  • Work are only concerned incase I collapse and die in their environment and they end up with a law suit!! Haha. That's about as concerned as they get, as you say some people are so dismissive becuase it's not a symptom you can physically see!

    There are a few cardiologists in the Basingstoke hospital, but it's always so busy that all their paitient lists are full. I've only ever been to the Royal Brompton for my ablations as Basingstoke isn't equipped and it's really far for me to travel.

    I'm not too sure on the meds, as I've been on these before my last ablation and I didn't get on with them and still get episodes with them.

    How are you feeling at the moment?


  • Sophie I know exactly how you feel! My work are the same. They are more worried about being responsible for us if anything happens! But my work still push me work wise and make me work an extra hour then everyone else and say it's down to the fact I take medication!!!

    I am feeling good at the moment thankyou my resting heart rate is around 70-80 which it has never been! I've always had my heart rate about 100-110. They have taken me off all medication just blood thinners for two months.

    Your prob in the same boat as me where we are young people don't realise your actually unwell. I had it in asda after my ablation, I used a trolley instead of a basket so I didn't heavy lift and was told I wasn't allowed to use certain tills after queing for 20 mins. There were. No signs to say you couldn't use a trolley, I explained I had just had a heart procedure but they still didn't let me had to go and que another 30 mins at other tills. I only had a few items for dinner!

    Sophie I really hope you get your appointment soon and get the answers you need. Is it at random

    Who you will see now? Are your family/friends supportive?


  • 70-80 is so good!! I remember that feeling after my second ablation and it's almost like you forgot what a normal heart rate felt like! :)

    Exactly!! I understand completely, like if I go to use the lifts in the shopping centre instead of taking stairs or ask for somewhere to sit on a packed train, everyone stares at you as if you've just robbed someone, as if to say 'how dare such a young person that looks fine, be so lazy'!

    Thank you for respoding to me today Dee :) It has made me feel a bit better, just feel so drepressed with it all at the moment.

    I'm guessing it's at random who I will see now, I'll just wait and see until my appointment letter comes through. Erm, my family and friends are supportive to a degree, I don't think they take it as seriously as I do, I think they just think it's only a fast heart rate, what's there to worry about. Like my dad said to me a while ago if he was to go up the stairs really quick, because he's so unfit he thinks his heart rate would be the same as mine. They just don't get it because they've never experienced it. That's why if I'm having an episode I tend not to say anything, as I think they think I'm mkaing a fuss over nothing.


  • I do the same 😢

    If I'm in an episode I don't like to say anything as I just feel embarrassed but I've learned to try and put myself first. People don't understand. I had an episode at my sisters wedding and I had a comment that it's because we had eaten rich beef 🙈 And that it makes everyone's heart rate go up. People don't realise Aswel it's not just our rate it's the fact your heart is not in sinus rhythm also.

    I also have a physical job as I am a hairdresser which can sometimes be difficult when I am tired after an episode.

    I have only gone back two days a week till after Christmas because of my ablation.

    I'm glad I spoke to you today too. It really helps when people can relate to how you feel.

    I am in the process of trying to start a support group in the London area so people have somewhere to go to speak to but I am just trying to find a medical lead who can do it. Think it would really help a lot of people to talk to others and share stories. Not sure if it is going to be possible yet.

    I really hope you get some answers when you go back, you should get your letter soon with a date. Keeping my fingers crossed for you!


  • All the same to you Dee :) Keep fighting and I'm sure we will all live a 'normal' life one day :) x

  • Keep me updated and let us know what the consultant says. Yes hopefully we will 😀 Xx

  • Dee

    Sorry you have had a run like that but you will for sure have better days. Unfortunately most family and friends do not understand at all, particularly as most of us do not moan or make heavy weather of things. My youngest daughter (almost 25) does understand. I have found that because people don't see things physically wrong they don't believe / understand a lot. I am certain that if I pulled a muscle and was limping along I would get tens of times more sympathy and understanding. Probably worse with arithmyia because they are frequently electrical malfunctions in the body and most people don't understand electricity al all so a double whammy!! I can say that as by original background was as an electrical power, control and systems engineer (in design).

    When walking the dog today in a meadow I met someone who I haven't seen in ages and don't really know. I told her about being in persistent AF and that I had an ablation (at Barts) at the end of March but went back into AF in less than 72 hours -I had been told that there was no chance it would work first time - just a question as to how long it lasted.

    It must b even harder for both of you because you are so young. However try and stay positive and think of those younger than a you who are worse off (eg some of the children in specialist hospitals such as Great Ormond Street hospital and the other children's hospitals throughout the country.

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