Does anyone have a real issue coping?

[Tiffw28]

So I’ve been having some issues with NSVT (not SVT- thats atrial this is ventricle) I have also had issues with atrial tachycardia, excessive PACS so much so the loop recorder read it as AFIB, PVCs and inappropriate sinus tachycardia. Now obviously the NSVT is the one that worries me the most-since it’s coming from the ventricles and all that, yet my EP has told me it’s fine since my heart is structurally sound blah blah. It shouldn’t be an issue and I should just go on with my normal life like I don’t have these horrific symptoms. My beta blockers are all I need and no other changes. However in my head I just can’t wrap myself around that. I’m struggling to just deal with everyday life and forget it when I feel a symptoms I go down a spiral.

Obviously I know I can’t live my life scared to move or live but I don’t know how. The minute they said they saw episodes of NSVT (which I felt and it was HORRIBLE) I was like that’s it I’m done and my brain won’t budge from the thought I could drop at any minute even if they claim that won’t happen. “You’re extremely low risk”

Has anyone else had a really hard time believing the doctors? Or coping in general? I have numerous other medical conditions and maybe that just adds to my stress but I really want to know how to cope how to move on with my life. I can’t stand the daily crying and worrying. I went from being carefree and fun to depressed and a hermit.

[Oaksy100]

Hey, definitely get a second opinion. It’s ruining your life and you have every right. See someone else who can offer you some proper answers and maybe mention ablation as an option. Good luck.

[Tiffw28 in reply to Oaksy100]

Thanks for your reply. I agree. I’m working on getting the second opinion it’s just too big of a deal to rely on one doctor that’s for sure!

[Hidden]

Hi,I do understand how you feel,it is always at the back of my mind. When I have an episode of nsvt i feel vulnerable for a few days.I spent 5 year's hardly leaving the house incase I dropped dead.then one morning my husband suffered a bad stroke,this changed things.now I look after him which doesn't give me much time to worry about myself. I just know the cardiologist would do something to get rid of nsvt if they could.try hold onto the thought that it's very low risk of something bad happening.best wishes.

[Tiffw28 in reply to Hidden]

Hey mags thanks for responding. I’m sorry to hear about your husband. In January my husband suffered a ruptured brain aneurysm and almost died so I know how hard it is. I will be thinking of you.

So yeah having NSVT is so scary. How often do you have episodes? Are they doing anything special to treat you? I’m still trying to navigate this and it has really robbed me of my life I’m not sure how to be “ok” with it. It’s nice to hear from someone who gets it so thank you for answering. Sometimes you just feel so alone.

[Hidden in reply to Tiffw28]

Hiya,I have a couple episodes a month, they are horrible and make me feel sick.i only take bisoprolol 1.25 mg no other treatments.i was discharged from cardiology hospital,but got referred back recently to get another loop recorder as I feel different palpations. It's really hard to stop feeling worried I know.but i keep thinking if my hearts Normal I should be ok.it would be nice to be certain,but they can't tell us that so I understand what your going through.take care.

[Tiffw28 in reply to Hidden]

Yeah I try and tell myself I have to keep it moving. That the doctors know more than we do but it’s hard to accept that sometimes. Like I feel if my heart is capable of doing it in the first place what makes it not capable to keep it going? I get having a structurally sound heart is important and keeps us safer but there’s just so much that feels unknown. Really stinks! Plus I hate that they are like well we don’t know why it’s happening. So my response is well how do you know it won’t go bad? I guess I need more faith but sometimes that’s hard to come by!

[Hidden in reply to Tiffw28]

I fully understand what you feel,I feel the same.it's changed me and my life.I cannot say i ever feel at ease,it's always in my head.living with uncertainty is scary.in the UK we don't get as much information as usa so all i was told is that it's unlikely to go into sustained vt.I think I was so scared i didn't ask more.I went on internet and terrified myself. antidepressants really helped me and I'm hoping to get back on them soon.

[Tiffw28 in reply to Hidden]

Yeah In the US they will tell you whatever you want to know which is a good and bad thing. And it really does change your life. You never feel truly safe or ok. I try not to let my head wonder but it’s hard. And when you’re symptomatic-even if it’s not that happening, it really does cause more emotional anguish. I wish doctors understood this more because they really act like whatever about it all.

[lpinck]

Hi do you live in the US? I also have the same issues- I have been flown in a helicopter to the ICU due to my heart rate being 300 beats per minute. I was cardioverted multiple times and given many medications and finally after about 6 hours was brought to a regular rhythm. I have had three cardiac ablations to correct it. I am 29 years old and now a nurse. I still however have PVCs constantly and a constant fear of what my heart was like before. I also have a loop recorder. For a long time doctors told me it wasn’t a “deadly arrhythmia” and to just take my medication. However as a nurse I have come to realize the non-lethal arrhythmias can lead to deadly arrhythmias after years. The electrical rhythm in your heart is only supposed to go one way and when it continuously goes in another direction that can contribute to other things going wrong. I have been surrfering from PTSD, panic disorder, and depression for 12 years since I was 17 when this started. My surgeon corrected my SVT thankfully after two other tried from two other surgeons who weren’t good however I’m still left with everything else. I feel your pain because the daily fear is real. Almost losing my life I fear every day it will happen again. I am also looking for hope throughout this journey. All I can say is don’t stop fighting for yourself or searching for doctors that take your concerns seriously. Meditation

and therapy helps calm nerves but I wish you the best as I am on a similar path.

[Tiffw28 in reply to lpinck]

Hey thanks for the reply. I do live in the US up in the North East. I’m sorry you are dealing with the same cr@p I am! It’s too much sometimes.

It’s really sick how these doctors don’t get the trauma arrhythmia patients go through and a lot of them just don’t care. To them the risk and liability is out of their hands once they tell you well you have something but we don’t “think” it will be a problem BUT of course we can’t say for sure. They don’t care about the days you wake up crying and fall asleep crying. The days you are so stressed you can barely get out of bed or heck don’t sleep at all. The days you are so symptomatic you think you won’t make it. The fear is tremendous. They are not doing enough in this field to make lives better that’s for darn sure. They are the only doctors I know that will look you Steiger in the eyes and tell you they don’t know what’s going on, or why It’s happening but in the same breath say but it will be fine. It’s like excuse me? Did I miss something here?! How can something be ok if you don’t even know why it’s happening! I’m just so sick of it. I never had anxiety, PTSD or depression before my heart went bad and now it consumes my whole life like a black hole. How in the world do you get past that?

[Hidden]

That's a worrying thought from a nurse that none lethal arrhythmias can turn deadly. I think the word to hold on to is can,but hopefully dont. I suffer nsvt so I find that very worrying.I try not to think that way,I would never get out of bed if I did.I'm sorry that's how you feel.

[Tiffw28 in reply to Hidden]

Yeah it’s that leap of faith you have to believe that makes it so hard. Like you have to place your life in the hands of these doctors and that’s just a lot. Too much for me personally but I know others can.

[John87]

I had what I always referred to as heart flutters on and off since I was 18. I went back and forth to the doctors and cardiologists throughout 2017. In 2018 I seen a professor in cardiology that assured me my heart was fine and I was not at risk due to the echocardiogram’s I’ve had, even if I did have an underlying heart arrhythmia. In March this year I was lying in the bath, and turned to get some shower gel. Had one singular ectopic. Didn’t think much about it. Had another singular ectopic when I sat up right. Then all of a sudden my heart just started beating out of rhythm which I always referred to as heart flutter. Usually this may last 10 seconds maximum but this lasted for 5 minutes on and off. I was absolutely terrified because it usually just goes back to normal. I got my towel round me and stood at the front door incase I went into cardiac arrest hopping someone might spot me. I sat on the sofa as it was coming and going. I set stop watch on my phone and sat perfectly still for 30 minutes terrified it was going to come back and start beating out of Rhythm again. Since then I’ve had a couple of ectopics PVCs and PACs and some milf flutters. But nothing like I had in March. I was petrified. Even when heart rate increased and started beating hard usually that overrides it. But it just kept beating out off rhythm. Dunno if it’s atrial fibrillation or NSVT. Someone let me know what they think.

[Hidden in reply to John87]

John have they ever done a 7 day monitor on you?What you describe could be something, or it could just be ectopic beats, but I would strongly suggest you get it checked out.

I have had similar stuff go on since I was 17. Im 48 now and only recently told a doc. They did a monitor and found NSVT. Which can be very serious.

The issue is which bit of your heart is malfunctioning, and why.

Don't panic, but get it checked.

[AnneGreen]

Hello.. I’ve only just come across this website and I may be too late to reply to this thread, but your words mirror my thoughts exactly. I wonder if you are better now (I hope so) and, if so, whether you have any advice? Thank you so much. Best wishes..x

[Tiffw28 in reply to AnneGreen]

Hey! So I'm still dealing with my arrhythmias sadly. Do you have NSVT?

[AnneGreen in reply to Tiffw28]

Thank you for your reply. I’m sorry you’re still suffering. I have mix of things I think and hr keeps going over 200. I’m not coping well with how much my life has changed and keep trying new things to fix it because I can’t live like this. I wonder if you tried ReMag magnesium, as per Dr Carolyn Dean?

[Tiffw28 in reply to AnneGreen]

Oh yeah I’ve tried it all! I have two top EPs in New England and every suggestion they give me I try.

Sorry to hear you are struggling I can completely relate. So have you been officially diagnosed with anything? Have you seen an EP to try and get to the bottom of what’s going on? Have you had any testing done? Monitors, echos, MRI, etc? The biggest thing is trying to get a diagnosis or at the very least get an idea of what they think it could be. Lots of conditions can cause rapid heart rate some heart related some not. If you keep having high rate it’s best to get to the bottom of it for sure.

[Derose]

hi Tiff just come across your post about nsvt! It’s a while ago now is everything ok I hope your well what was the outcome for? my cardiologist found a few episodes on my 7 day monitor longest lasting 7 beats I’m so worried would love some advice xx