New Symptoms: Hi All, Have not posted... - Atrial Fibrillati...

Atrial Fibrillation Support

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New Symptoms

SVTSophie profile image
12 Replies

Hi All,

Have not posted on here for about 10months, have been under a new cardiologist who I have only seen about 3 times in the last year and am due to see him again tomorrow. I've never really had an official diagnosis its always been SVT/IST/AVNRT... I have always experienced a number of symptoms but over the last few months I have been experiencing a new one. It's hard to explain without sounding silly I guess. When it comes on, it's very sudden and feels like my heart is about to crack my rib cage it pounds that hard but it's not regular, if anything it feels like its skipping a beat. It takes my breath away really quickly and the only way I seem to get over it is if I hit my chest with my hand (in a fist shape) a few times really hard (The kind of thing you do when you get indigestion). I've always been told I'd grow out of the arrhythmia's but it's now 7 years since being treated, 2 failed ablations and currently on medication. I'm getting really frustrated now and worried that I'm not being taken seriously because of my age. I'm trying to save up for an AliveCor in hopes I can catch it myself. I'm just after thoughts on these new symptoms and how to tell my cardiologist tomorrow that I'm really not happy with things without sounding ungrateful?

Sorry for the long post! Thanks.

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SVTSophie profile image
SVTSophie
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12 Replies
rosyG profile image
rosyG

I think the thing to stress is that it's irregular and also tell about the things you have noted above.

Not sure how your age comes into it?

SVTSophie profile image
SVTSophie in reply torosyG

Thanks RosyG, I just meant that my cardiologists have always said to me that it has to be SVT because 'I'm too young to have any serious concerns' and SVT is very common in young people. Just feel like I'm not being taken seriously.

SVTSophie profile image
SVTSophie in reply toSVTSophie

Sorry - Forgot to say I'm 24

rosyG profile image
rosyG

the reason I asked Sophie is that fast heart rates, regular, are not too uncommon in young people - may need treatment - but if you are sure your heart is irregular then it needs to be looked into thoroughly to see if you have an underlying cause- e g thyroid problems can cause it and stop once thyroid treatments have been given- if a young person has AF it is often treated by ablation as it is too long for the young to be on meds that have side effects- although you must be sure to have looked into the possible complications of ablation. If anyone dismissed your account then you should change doctors as this needs proper attention

There are implanted devices that can record your symptoms- mention this tomorrow and ask if the hospital you at can do this so that they can make a proper diagnosis- they are expensive but you have to fight your corner !!

Let us know how you get on

SVTSophie profile image
SVTSophie in reply torosyG

Thanks RosyG, I'm totally sure the new symptoms are irregular (you know when you know, because you know your heart if you know what I mean). This is the thing as well, after the two failed ablations I'd rather not be on medication for the rest of my life. I did have a reveal device fitted before my first ablation but they removed it not long after :( . I will be fighting my corner tomorrow. Thank you RosyG :) I will let you know what happens when I return.

rosyG profile image
rosyG in reply toSVTSophie

What type of ablations were the two failed ones? Wonder if they were in the left or right atrium as might need something different for AF? worth quizzing them and also get the reveal re-inserted!!

SVTSophie profile image
SVTSophie in reply torosyG

Sorry I don't know the technical terms but the first one was for the electrodes getting stuck in the pathways and going round in circles instead of passing through to the rest of the chambers and the second one was in the sinus node to try and reset the pace. I have tried to push for the reveal device again but told it cost them £4,000 just to do it in the first place :(

Sue1955 profile image
Sue1955

Hi SVT Sophie

My advice would be get a Kardia that's the only way mine was diagnosed I am a lot older than you at 62 but for at least 7 years prior to being diagnosed I to tried to explain these odd symptoms I was having, but even after 6 days on a cardiac ward I was told that it must be my fibromyalgia. Well the episodes got slowly more often and my hubby was fed up of me going to bed saying if I don't wake up it wasn't the fibro lol, so he researched and bought me a Kardia within a month or two I had several readings and took them to the gp, and to my surprise suddenly yes that's definitely AF he even sent them off to my cardiologist who was as impressed as my gp had been agreed AF and started me on treatment. So I thank Kardia for this wonderful little machine as without it I'd still be floundering. Good luck with it all xx

SVTSophie profile image
SVTSophie in reply toSue1955

Hi Sue,

It's amazing how you know you can feel something yet it's so hard for them to catch! I'm so glad you finally got the diagnosis! I've heard so many great things about the Kardia/AliveCor it's just saving up the money to get one. I'll mention the reveal device to my cardiologist again today but because they're so expensive I don't think he'll agree to it. I think I will definitely go down the route of purchasing my own device. Thank you for sharing your story, it's nice to know others have gone through the same thing and it's not all in your head! Xx

Dodie117 profile image
Dodie117

Kardia seems expensive on amazon. Look on alivecor's own site where it us £79. I too found this device really useful.

Buffafly profile image
Buffafly

Hi Sophie, I had similar symptoms which now I know a bit more were, I think, runs of ectopics, as well as PAF. I got very frustrated (feel for you) because my hospital consultant could not 'catch' anything, then I got lucky and when I went for a treadmill test my heart was going bananas and the person running it mentioned ectopics and went away to get advice before she did it. That trace really got some action! So I agree, Kardia ASAP, good luck!

SVTSophie profile image
SVTSophie

Hi All,

Good news! I will be having the reveal device refitted, so fingers crossed to catch them with this! Many thanks for all the messages guys xx

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