Living with SVT

[graciesmammy]

Hi,

A long shot as I've never actually met another person with the same heart condition as me but just wanted to reach out on here to see if anybody else shares this awful condition with me?

I was first diagnosed 10 years ago and had a failed ablation. In October last year I randomly after 10 years symptom free had another episode. 220bpm and a trip to resus. It's been nearly 3 months since the episode and I've not had another svt episode but I'm getting an awful lot of palpitation's which are really scary. I'm just finding everything quite hard at the moment, I'm riddled with anxiety and unsure how to live a normal life anymore, I don't dare book an abroad holiday this year as I'm so terrified of it happening again. I'm trying to be the best mam I can be but I find myself often stopping or not wanting to do things with my children incase I have an episode. It feels like it's ruined my life. Just wondering if anybody else can relate? Would be nice to speak to somebody...

@Pippim the drugs don't stop episodes though, granted they may reduce them but I'm not at that point yet of needing to be medicated daily. Wish I could control the fear, I don't think beta blockers would make me feel any calmer tbh....

The 2 people closest to me (not related) both had it. Both had successful ablations, but were told that it may be necessary to have the procedure again. We're talking approx 20 years for both of them.
To this day, one still doesn't drink caffeine, because she says it makes a difference. I think some other foods can also.
Would another ablation not be a possibility, OP?

Sorry, I musread your comments about a 2nd ablation. You don't need a GA - I'm told that having the procedure under sedation was very straightforward.

So have you tried the medication @graciesmammy ?

I had two attempts at ablation. Not under general or sedation. It's not painful, a local anaesthetic in the groin was all.
Beta blockers help with anxiety as well. I don't see what's to lose by taking them?

I tried beta blockers just after my first ever episode and I had fainted episodes so stopped taking them. My cardiologist has said that with the infrequent episodes ( two in 10 years ) he doesn't feel another ablation is warranted. If episodes increase he said he'll reassess then.

So at the moment I do just feel like I don't have many options to help - I've self referred myself back to counselling but they've explained the waiting list is months long. I feel like every second of the day I'm thinking is it going to start again, I'll have a palpitation and think it's going to happen again...
I know people are a lot worse off than me I really do but it's just something personally I'm finding so hard to beat mentally ☹️

I'm on a tiny dose of bisoprolol, 1.25mg. I was started on 2.5mg in hospital and couldn't get off the bed for low BP.
Psychologically, taking it helps as much as anything.

OP in the nicest possible way, and noting that you have had just two incidents in 10 years, can you get help with your anxiety about this as it seems to be ruling your life out of all proportion to the number of incidents and the severity even if there is an incident?

I tend to have incidents every few months or so and have so for decades but my cardiologist said it wasn’t dangerous, so I just get on with life and never worry about it. Google the Valsalva manoeuvre and give it a try if you do have another incident, it works for me and I note also another poster.

It is not worth affecting your quality of life to such a degree over this. For what it is worth, I turned down an ablation when offered as for me personally I did not think the potential side effects (risk of needing a pacemaker for life) were worth it.

@BiscuitsRUs I really know everything your saying is right and this is what my husband says to me on a daily basis. I think I find the feeling so uncomfortable and scary that it riddles me with anxiety. I think the thing that scares me the most is the adenosine I had that after my first episode and I swear it's given me ptsd what an awful , awful feeling. The second time again I ended up in a&e with a hr of 220 but this time I managed to correct myself with blowing into a syringe. I know this is really positive but what if I cannot do that next time or I need shocking , that scares the life out of me!!

OP, I really feel for you, you sound so scared. The syringe sounds a bit like the valsalva technique (I sort of bend over hold my nose and blow, sometimes it takes a few goes, but it resets to a normal heart rate v quickly).

How long had each of your two episodes lasted before you went to A&E? The fact the syringe technique worked sounds very positive. If you get another episode you can try something similar.

I would agree the episodes are uncomfortable (mine used to go on for around an hour, before I knew what to do) but what I would say is they are far from the worst thing one can experience. They don’t even make it into my top 10. Paradoxically I suppose it may be easier to cope with if one has incidents more often because it becomes normal, one sees there is nothing to fear. It’s like flying, I used to be terrified of flying but then had to do it a lot and became fine with it because I learnt what sounds etc were normal and also began to trust it will be ok each time, because I had got more habituated to going on a plane and it all being ok.

If the worst happens and you do need to go to hospital to re-establish a normal rhythm, I am sure you will cope with that fine too. If you’ve got kids you’ve coped with childbirth (which is in my top 10 worst things) so you will deal with this too. It’s not worth affecting your daily life over, you’ll cope at the time if you have another incident, especially now you are armed with more knowledge.

I know it’s hard to really make yourself believe it when you have a deep-seated emotional reaction to something, especially with the bad experience you had the first time but maybe see if you can gently reframe your thinking.

Take care.

I get short bursts. Unfortunately seem to be triggered by activity. Seems to be under a minute. Any thing recommended to ask the cardiologist when I see them?

Hi. I have SVT and came across this post because I was in hospital with it recently. A couple of other family members also have it.

I just wanted to say to anyone reading this new to it that whilst it can certainly be inconvenient it doesn't have to be terrifying. If it goes on for a while and the maneuvers aren't working then its a good idea to seek medical assistance but in itself its very unlikely to harm you. Feeling more confident mentally is really important, if anxiety over it is negatively impacting your life then I suggest working on specifically on that and doing more research into the condition so you feel more able to cope.

Hope someone finds this helpful.