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...

My DD was diagnosed aged 13. Had an emergency ablation which seemed to work but recently had another episode - she's now 17 - possibly triggered by inhaling some gas in a chemistry accident in school. She doesn't always talk about it much but she says it preys on her mind quite a lot. I know that the risks of anything bad happening even with an episode are pretty small, but it seems so fundamental because it's your heart, doesn't it?

Thanks for replying! Bless your daughter.
It's just a feeling you could never explain to somebody and feels so strong when the most important muscle in your body is beating out of control. My understanding is if treated quickly svt it's self is pretty harmless I think for me it's the feeling when it happens and the horrible things they have to do to stop it. I'm really trying not to let it take over my life but it's so hard 😔

She's actually applied to medical school and I think is trying to use what she's learnt from it to help other people. I can't imagine how unpleasant it must feel. I'm hoping that people who actually are living with it as adults and hopefully parents will be able to talk to you and tell you strategies they've found to cope.

I have it, have had a failed ablation and take regular beta blockers to control it. It’s never stopped me doing anything, if it starts I just try the techniques to help, using whichever is most appropriate to where I am. E.g. holding nose and popping ears, or plunging head into a sink full of ice cold water with ice in, etc.

I have SVT. I'm in my late sixties but my first episodes were in my second pregnancy in my twenties. It wasn't diagnosed until my late thirties and I was given a few courses of beta blockers, which I tailed off, as episodes were rare then.

Now I'm permanently on beta blockers and amlodipine, following a really bad episode eight years ago, with something like 240 bpm, which put me in hospital and was a wake up call not to burn the candle at both ends. (I was partying hard at the time)

I was advised to give up coffee, which I did, drink very moderately and to be aware of my other triggers.
I'm vulnerable when I have a temperature or let my heart rate get too high for too long (so no more dancing the night away!), although there are other triggers, like campfire wood smoke; and occasionally it just seems to happen for no particular reason.

I learned the valsalva maouvre, which sort of resets the vagus nerve and I can also sometimes head off an episode by slowing down my breathing, as in breathe in for so long, hold and then slow exhale.

I won't deny there have been times when I have been very scared, and going to A and E for cardio version isn't fun, either. Initially, they suggested ablation and hinted at a pacemaker, but I said I'd go with the meds first.
Fingers crossed.

Thanks for all your replies!
It's so nice to speak to people who actually have this condition as I feel so alone! Both times mine was triggered by bending over so this must be the main trigger for me. At the moment I'm un medicated and would love to stay that way but sometimes I think an anti anxiety med would help me. I keep focusing on a new nasal spray that's meant to be getting released in the near future which has a really high success rate of stopping the episode quite quickly. Did svt not stop you going abroad and things like that? I really wish I didn't feel so limited with it

I have SVT, had a horrible episode 8 years ago and nothing since, although it has felt like it's going to start

I wasn't offered meds as they wanted to see how it went, however the invaluable thing they told me to do was to blow through a straw when it starts to flutter and it stops it in its tracks. It could be that mine isn't that bad, but it's worked so far! Even if I don't have a straw, I do the action by pursing my lips and blowing and it works

It really is horrible though, the feeling of it going out of control is absolutely terrifying. I hate hospitals and have health anxiety so it is a constant fear of mine. I also suffer with IBS and can't take Buscopan due to the SVT so that's a pain too!

You're not alone OP

Mine was also triggered by bending over! How odd that that's a trigger

Hi, I hope I'm not invading a thread about SVT, but I have a similar issue called Atrial Fibrillation. It is not the same as SVT but has many similar symptoms.

Believe me I totally empathise with you SVT sufferers. The feeling of total anxiety and fear that comes with a rapid heart rate or palpitations all over the place is something I live with too. It is bloody awful sometimes.

I've had cardioversion several times, but it didn't work so the heart rate had to be stabilised with other drugs such as Flecainide. Waiting for it to work has to be up there with the terror claustrophobic people feel in an enclosed space! Sometimes that doesn't work and a drug of last resort that actually stops and restarts the heart has to be used. You can feel yourself dying. Awful, but it usually works.

One big difference between SVT and Afib is that I had to take blood thinners to prevent stroke, but I don't think that's necessary with SVT. I was very lucky to be a candidate for a Watchman device that closes of the left atrium appendage (fascinating procedure, I could see it on the monitor, but was sedated and all relaxed and cuddly lol). So now I don't have to take blood thinners anymore, which is a great result. I still have Afib though and take beta blockers daily!

I also use the vagal manoevres, stick my head in a sink of cold water, do deep breathing and now and then take a low dose Xanax if I get very agitated. The manoevres often help, but surprisingly, if they don't a bit of vigorous exercise often does, such as walking up and down the stairs very quickly etc. But it's not for everyone.

Good luck on your journeys. I'll be watching the thread, and I hope I didn't butt in too much.

No it’s never stopped me going anywhere, just declare it on the travel insurance. Is it your doctor saying you can’t go abroad or just something you’ve decided?

My daughter was diagnosed with it while in the womb, she had several episodes as a baby but with treatment has outgrown it, although we were warned it could come back. There’s a couple of Facebook groups for SVT sufferers if you are wanting more people to chat to about it.

Hello! I have SVT! Diagnosed about 6 years ago. On beta blockers for life which touch wood keep it in check. It ruled my life for a number of years when first diagnosed, as I was worried about another episode being triggered, but have been trying to take a more relaxed approach these last few years and not let the anxiety eat me alive!
Not always easy with 2 children, husband, working full time and living with low level generalised anxiety, but, we move!
Sending all my fellow sufferers lots of hugs x

lesdeluges similar, I've had two or three episodes of AF too, at 180 bpm. Completely out the blue, putting me in Resus.
I had an ablation which touch wood, seems to have resolved it but I still get what feels like ectopic beats on and off every day. I take bisoprolol, but had have propafenone and flecinaide too.
Every time I fly or am in a remote area it crosses my mind. I lost my confidence for a long time. It's bloody horrible.

I have SVT too - since the age of 18 and I'm now 41. I take daily beta blockers which do ease the symptoms but get almost daily ectopics too.

I've come to understand my triggers: caffeine, hormones especially when due on, stress, lack of sleep etc. it's one of those conditions that for me, when it flares up, my anxiety goes sky high and it's a vicious circle. My worst episode was in my last pregnancy but thankfully that was 9 years ago.

How are you all finding beta blockers? DD had them before her ablation for a couple of weeks and just felt so tired all the time. Does that stabilise?

@tokesqueen I know, the worry about it happening when away from the "comfort zone" can be very restricting. But I am more confident now. My cardiologist has said that I will be fine up to three or so hours in a tachy episode PROVIDED I have no chest pain or feel dizzy or weak or otherwise unwell. So I go with that, and while it is not pleasant when I have it, I know that if it eases within the 3 hour window I'll be ok. That takes me on many flights to Europe, so I'm happy with that! (I have some Xanax too. Even though I rarely use them, it's reassuring to know I have them if I go into a panic!).

I also take Bisoprolol daily and it really has helped. I have Metoprolol also which I can take in an emergency on top of the Bisoprolol if I am not near a hospital or doctor for example. Haven't had to use it yet Knock On Wood..... But it's there if needed.

I cannot have an ablation. I am a "bleeder" that's why they did the Watchman job as I mentioned above. However, to have an ablation I would need to take blood thinners before and after and I can't. So that's out!

I'm glad to hear your ablation worked for you, that will be great for others to hear. There is life and hope. Our arrythmias aren't exactly life threatening at least, but they are life altering and can be terrifying.

In case anyone is interested, I follow Dr Sanjay Gupta on YouTube. He is a cardiologist in York and has some very reassuring and informative videos on all kinds of arrythmia and other cardiac stuff.

I have this but obviously not as seriously as it has never ruled my life or caused such fear. I get episodes where my heartbeat “flips” into 220bpm but very regular rhythm. Happens approx every 2 months or so. Had an episode just earlier today.

Before diagnosis, episodes would last for an hour or more before it would go back to a normal rhythm but the doctor taught me the valsalva technique mentioned above and I can now always get it to reset in under a minute. Was offered an ablation but did not see any need.

I get tired with the BBs yes, but it's the lesser of two evils.

I have sometimes started an episode by bending over and also once by turning over in bed! My GP said it wasn't uncommon. So now I always bend over and turn in bed very carefully…
Overall, it hasn't stopped me doing too much. Marathons and bungee jumps seem to be contraindicated, but I probably wouldn't be doing those anyway.

But I go away, fly, etc as normal, just ensure that I have insurance.
I forgot to get insurance once in Canada and had a bad episode, a few years pre the big'un. Dancing again, idiot me.
The ambulance guys were lovely and didn't charge me for the call out but said they would have to if I went to A and.E. Thankfully we sorted it in the hotel.

@graciesmammy have you had an ablation? I had one nearly ten years ago, and while I get sinus tachy when unwell, this is easily controlled by medication. The ablation was life changing!

@graciesmammy sorry just read your ablation failed. Have they offered another, or the possibility of a pacemaker?

@Covidwoes after my first ever episode I had a failed ablation, my cardiologist said he tried so hard and pumped me full of adrenaline and could not set it off. After that the cardiologist told me I had a healthy heart and to get on with my wife , which I have! I've had two children , got married , traveled the world and never had a problem! I thought it was a freak accident that would never happen again. Then in October bam it happened.... the cardiologist has said at this moment he doesn't feel I warrant another try, he doesn't feel I'm symptomatic enough and said if I have anymore episodes they'll reconsider. Plus I had the last ablation done under general anaesthetic and he said he was unwilling to try again under GA. I couldn't stand it sedated scares me too much!!!

I have had SVT episodes since age 15 up until 18 months ago, when I had an ablation. They were fairly infrequent until my late thirties/forties, then I started getting them more and more often (several times a week and lasting any thing from a few seconds to several hours). It got to the point that I was so anxious about having an episode that I’d avoid doing things and I felt it was ruling my life.

I’d get really bad chest pain with it, and light headed and breathless if I tried to move. I was taken to hospital in an ambulance during one really bad episode that had been going on for hours and my heart rate was 220. They had to do a couple of rounds of some IV drug to stop it, which was pretty unpleasant.

The ablation has worked brilliantly (fingers crossed). I still get ectopic beats but it now stops rather than kicking into an SVT episode. It’s improved my life so much. I had it done under sedation and while it wasn’t the nicest experience, it was manageable and I could go home later in the day.

I hope you get medication or something sorted soon.

Yes, I have it too, albeit mildly (sorry for those for whom it's worse). The valsalva manoeuvre is the thing I've found to be the most help.

Hi I’ve just found this thread by searching for SVT information. I’m being investigated for the condition as I’ve had two episodes of 215 heart rate in the last 5 months. One triggered by simply sitting down in a chair (from standing up), it lasted about 2 minutes. With the second episode I had a few flutters in my chest and then turned onto my side in bed, felt a pop in my ear (as in pressure release) followed by about a minute of racing heart rate, terrible sweating and difficulty breathing.
I am also severely anaemic due to heavy periods, not sure if this has any impact. I am terrified and feel very anxious so it’s reassuring to read your stories.

I was diagnosed about 6 years ago, ablation didn’t work. I had a really bad episode in 2018 triggered by pneumonia which turned into atrial fibrillation.

I take calcium channel blockers and since I got the dose right I haven’t had a prolonged episode for years. I do get perids of very fast hr but it self limits. When it was bad I practised various methods of valsaver manoeuvre.
The worst trigger before I got the drugs was bending over. Now it's infection and stress.
I was scared of travel abroad. Even now I am very cautious about being somewhere where there is good medical care.

It puzzles me why you wouldn't take the drugs and prefer to live in fear of the symptoms?