Some advice please xx

Hi hoping somebody could maybe help me out here where doctors can't.

I've had wpw and svt since I was born but only became symptomatic at the age of around 5 I think, I am now 16 and this year 6 months I got the catheter ablation done. Everything went well but afterwards I started having skipped beats and chest pain so waa took back into hospital and was given monitor but just told I was having etopic beats and no reason for chest pain. It continued tho and 2 months after operation my heart stattend to beat really weird and chest pain and I was back in hospital and they had no clue why I have the pain still. It got better and to only once in a while but for the past month I've been having chest pain every day and like it feels like something passes over my heart sometimes and it like starts go slow down or like flitter of that makes sense. I feel dizzy and sore chest but as this has never been caught docs can't do anything. Also 2 or so weeks ago my heart was feeling a bit weird then later on in the day it suddenly started beating soo strange like my chest felt soo weird and fluttery and I couldn't breathe or get a sentence out and I had pins and needles in my arm and like at the back and bottom of my head on left side it was like a band was there and I had pins and needles goinf up like in a line on back of head. Sadly docs can't do anything as they didn't catch it :( anyone any ideas???

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  • I would suggest you purchase an AliveCor, so that you can capture an ecg reading during these episodes to see if it is abnormal or not. Then share the results with your cardiologist or better still with an electrophysiologist.

  • I had some of the symptoms you described when I was a teenager after loosing my sister to a cardiac arrest. Nobody took any notice of what I said because they couldn't capture the events and they assumed I was having panic attacks. It took another 10 years for it to be discovered I did have a cardiac condition. Unfortunately I think I was also having panic attacks as well which blurred the issue. Looking at your previous posts it's possible you have been having panic attacks with severe muscle and ligament tension as well and this is masking and making worse the problems you have. It's especially difficult to get doctors to take you seriously when you are young and female. You have to convince them that you are intelligent, calm, rational and not dramatising and that's not easy even when you are an adult. I know my GP became convinced I was attention seeking.

    As Goldfish suggested, an Alivecor or Kadia as it is called now would be a good idea but as they are £100 on Amazon it might be out of your reach at present. Some cardiologist have some to give people who can't afford them and there are event monitors now which can be implanted under the skin for a while. The monitors which you wear for 24 hours very rarely capture anything. What you need to do is convince someone to refer you to a EP. Do you have an adult you could talk to. I know you say your father has argued with the doctors and they say he must keep calm, but when it's your child it's difficult. You need someone to help you present your case or even come with you to act as your advocate. Is there a teacher or other adult who is not so emotionally involved whom you could talk to.

  • Hi I am also 15 with WPW and have had 3 ablations the last being the most successful but I still octionaly have SVT and I cannot stand still for long without feeling faint... I cannot offer much help apart from to say if you think it is triggeredby exercise see if you can do an exersise test or otherwise ask for a tom thumb- I had one for 6 weeks when I was about 13 to try and catch some SVT. If you need a chat let me know! I think it would be good to have one too xx

  • Hello!! nice to meet someone else with wpw.. so sorry you've had to go through it so many times it must be so frustrating not getting any results ! I have it just sitting so I'm not too sure about the exercise but I feel like I'm about to have palpitations again like k feel my heart jump into them then it suddenly stops when I'm really pushing myself, don't know if this is a normal thing after the op to still get? Will defo message you and thanks so much!!!xxx

  • Hope that you don't' find this too off piste or blunt.

    Firstly do you get pains anywhere else from head to toe? The reason for saying this is that one part of the body or nervous system can be causing problems and symptoms in another part well away from the source. So for instance following being 999'd to hospital (because of my AF and BP) and then afterwards having physio on neck and shoulders things were not improving. Then she started looking at the lower part of the back and that was where the problem was and that in turn was exacerbating existing problems in foot and ankle. The treatment she has been doing which is focussed on the different elements of the sympathetic nervous system and the sympathetic nervous system have been paying dividends. In essence anything that is exacerbating muscle issues and causing muscle pains will in turn affect the heart not only because of it connecting with the nervous systems but because effectively there are more irritants in the blood.

    You may very well be doing this anyway but keep a diary of events and what you were doing , when it occurs, what you did in the previous hour, etc. So for instance does it happen more when you stand up suddenly, if you have been listening to heavy beat or loud music, (it does with me).

    This is not sexist but also log against days of your menstrual cycle. In the past and still now lesser so some doctors subscribed to the fact that heart issues for women were hormonal and effectively not real issues - from what I have read I believe they are real issues. However some of the articles I have read have suggested that there may be a causal link to periods simply because there are hormonal changes and it is the changes that cause an imbalance which makes a difference for some people.

  • Hi, no not at all!! Yes I've been suffering from hip pain since last March then knee pain started also. I don't really notice it coming out specifically when I'm sore as I'm sore all the time hips wise so I don't really link the two in my head, I try keep a diary but it's honestly so hard to put I'm words sometimes I'm so confused what to even write. I have a very irregular cycle and don't know if it would be anything to do with that? Thanks alot for your reply xx